Ethics, Law and Society - Volume 4

Ethics, La

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Ethics, Law and S ociety Volume IV

Jennif er Gunnin

Edited by g, S ør en H o lm and Ian K enw a y University of Cardiff, UK

© Jennifer Gunning, S øren H olm and Ian Kenway 2009 A ll rights reserved. N o part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise without the prior permission of the publisher. Jennifer Gunning, S øren H olm and Ian Kenway have asserted their moral right under the Copyright, Designs and Patents Act, 1988, to be identi.ed as the editors of this work. Published by A shgate Publishing Limited A shgate Publishing C ompany W ey C ourt East S uite 420 U nion R oad 101 C herry S treet F arnham Burlington S urrey, GU 9 7PT VT 05401-4405 England USA www.ashgate.com British Library Cataloguing in Publication Data Ethics, law and society Vol. 4 1. Professional ethics 2. Law and ethics 3. Bioethics 4. S ocial ethics 5. H uman rights I. Gunning, Jennifer II . H olm, S øren III . Kenway, Ian IV. C ardiff C entre for Ethics, Law & S ociety 174 Library of Congress Cataloging-in-Publication Data Ethics, law and society / edited by Jennifer Gunning, S øren H olm and Ian Kenway p. cm. Includes bibliographical references and index. IS BN 978-0-7546-7646-1 1. A pplied ethics. 2. Law. 3. C ivilization. I. Gunning, Jennifer. II . H olm, S øren. III . Kenway, Ian. BJ1581.2.E85 2005 170--dc22 IS BN : 978 0 7546 7646 1

2005007651

C ontents List of Figures and Tables List of Contributors    Acknowledgment   List of Abbreviations   

ix xi xxi xxiii

INTRODUCTION 1 Introduction   Jennifer Gunning, Søren Holm and Ian Kenway

3

PART I: ETHICAL ISSUES IN AGRICULTURE AND FOOD 2 M odern F arming Practices and A nimal W elfare   Joyce D’Silva

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3 A nimal Integrity in M odern F arming   Kate Millar and David Morton

19

4 CA P R eforms: Effects on A griculture and Environment   Franz Sinabell and Erwin Schmid

31

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T he Ethics of A nimal C loning   Christian Gamborg, Mickey Gjerris and Peter Sandøe

43

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European F ood R egulation and A ccountability: T he Interplay of Influences Shaping the New Regulatory Terrain   Samarthia Thankappan

55

7

Globalization and S ustainability in A griculture: R ole of Law and Ethics   John Hodges

91

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Production Economics, Markets and Assurance Programmes for F arm A nimal W elfare   Michael C. Appleby

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PART II: BIOETHICS 9

Puzzle-Solving for Fun and Profit: The Abusive Potential of Non-Genetic Health Data in Epidemiological Biobanks   Anne Maria Skrikerud and Jon Grov

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The Ethical Topography of Research Biobanking   Jan Reinert Karlsen and Roger Strand

117 127

11 F uzzy Law Encountering Life, D eath, and M orality: A R eport on N ine C linical Ethics C ommittees’ Legal C onsiderations   Reidar Pedersen and Reidun Førde

149

12

165

Bioethics, Biopower and the Post-Genomic C hallenge   Kjetil Rommetveit

13 W hat’s W rong with Genetic Inequality?   Claudio Tamburrini 14

Public and Private Interests in the Genomic Era: A Pluralist A pproach   Margit Sutrop and Kadri Simm

15 C hallenging S cience: Public Views of Personalized M edicine   Elisa Pieri 16 T herapeutic C loning and the Protection of Embryonic Life: D ifferent A pproaches, D ifferent Levels of Protection – A View from the U nited Kingdom   Søren Holm 17 Informed C onsent, T rust and Virtue in C zech M edicine   Jiri Simek, Eva Krizová, Lenka Zamykalová, Marie Mesanyová

187

205 217

229 237

PART III: ETHICS AND SOCIETY 18 A merica and the C ase for Just W ar A gainst Iraq   Chris J. Dolan 19

Childhood in Conflict: Can the Real Child Soldier Please S tand U p?   Helen Brocklehurst

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Contents

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Ethical D imensions of Y outh Justice   Rob Allen

21 R eproductive T echnologies and the Question of the C hild’s F uture F reedom   Erik Malmqvist 22

271

279

Ethics, Paediatric Doping and the Limitations of Gillick Consent   289 Mike McNamee

23 W hat Protection D o C onsumers R equire in the Information Economy?   Jane K. Winn 24

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Justifying C laims of S tate R esponsibility to M eet the N eeds of Irregular M igrants: T he Problem with Proceeding from H uman R ights   Marit Hovdal Moan

303

319

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Women Workers in the Global Economy: A Feminist Critique of the C ore Labour S tandards   Juanita Elias and Hayley Stevenson

331

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A llocating H ealthcare R esources: T he R ole of Personal R esponsibility   Alena M. Buyx

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27 T he R esponsibilities of H ealthcare Professionals in C risis S ituations  351 Michael Igoumenidis PART IV: COMMENTARIES 28 C ase C ommentary: Evans v The United Kingdom   Natasha Hammond

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29 T he Incident of the C ontainer S hip MSC Napoli: Is it an Intractable Problem?   Ho-Sam Bang

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30 T he (N ot S o) Great Escape: T he Legal and M oral R esponsibility for the Foot and Mouth Outbreak 2007   Robert G. Lee

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31

Ethics and the A dvent of the H oly Grail of S tem C ell R esearch   389 Søren Holm

Index  

393

List of F igures and T ables Figures 4.1

Production, PS E, M PS , and the EA GGF expenditure in the EU  

6.1

EUR EPGA P’s control points and compliance criteria for fresh fruits and vegetables   6.2 F ood quality control systems   6.3 F resh fruit and vegetable supply chain and its regulation  

34 75 80 84

Tables 2.1

The effects of genetic selection on the performance of turkeys over time (males of a commercial breed)  

3.1 S ome examples of surgical operations  

9 25

4.1 R elative change of support structure in the EU   35 4.2 D evelopment of employment and income in A griculture and GD P   36 4.3 Expected environmental effects of the 2003 CA P reform in A ustria  39 6.1

Private label penetration in Europe 1999  

10.1 Inventory of cartographical elements of an ethical map of biobanking  

70 136

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List of C ontributors Rob Allen is director of the International C entre for Prison S tudies at King’s College London. Prior to joining ICPS in March 2005, he ran Rethinking Crime and Punishment, an initiative set up by the Esmée F airbairn F oundation to change public attitudes to prison and alternatives. R ob was previously director of research and development at N acro, the U K’s largest non governmental organization concerned with crime and criminal justice. H e was a member of the Y outh Justice Board for England and W ales from 1998 to 2006 and is currently C hairman of C LIN KS , the umbrella group for the criminal justice voluntary sector. Dr Michael C. Appleby is an Adviser on scientific and social aspects of Welfare Policy with T he W orld S ociety for the Protection of A nimals, based in London, U K. WS PA is both an active campaigning organization and a federation, with over 850 member organizations in more than 150 countries. Born in Edinburgh, D r A ppleby took a BSc in Zoology at the University of Bristol and a PhD in Animal Behaviour at the U niversity of C ambridge. H e then carried out research at the Poultry R esearch C entre in S cotland (now the R oslin Institute, producer of D olly) and the U niversity of Edinburgh for 20 years on behaviour, husbandry and welfare of farm animals. Publications include six books as author, co-author or editor, including Animal Welfare (1997) and Long Distance Transport and Welfare of Farm Animals (2008). F rom 2001 to 2005 he was head of the F arm A nimals and S ustainable A griculture section of T he H umane S ociety of the U nited S tates in W ashington, DC . H e returned to the UK to work on Trade Policy with four NGOs: the World Society for the Protection of A nimals, Eurogroup for A nimal W elfare, RS PCA and C ompassion in W orld F arming. H e moved to his current post in 2006. Ho-Sam Bang is a PhD candidate of C ardiff Law S chool. H is thesis focuses on the contribution of port S tates to the prevention of marine pollution from ships. It is also concerned with the International M aritime O rganization (IMO ). H is research interests lie in the fields of Law of the Sea and Maritime Law. Dr Helen Brocklehurst has been a Lecturer in Politics and International R elations at S wansea U niversity since 2002. S he gained her doctorate at A berystwyth and worked on ESRC projects at the University of Ulster and at Swansea University. S he co-edited History, Nationhood and the Question of Britain (2004), and her book Who’s Afraid of Children? Children, Con.ict and International Relations was published in 2006. H er research and teaching interests are international relations, gender and conflict, childhood, citizenship and the politics of age and ability.

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Dr Alena M. Buyx, M Phil is a medical ethicist working at the Institute for Ethics, H istory and Philosophy of M edicine at the U niversity H ospital in M ünster. S he studied medicine in M ünster and London (medical doctorate in N eurology) and philosophy, sociology and health sciences in Münster and York (master thesis on the just allocation of resources in healthcare). H er main teaching and research interests are justice in healthcare, transplantation ethics, wish-fulfilling medicine, neuroethics and medical professionalism. S he directs a research programme on ethical issues in live organ donation. S he co-edited Fairly Treated? Rationing and Priority-Setting in Healthcare (2006). Chris J. Dolan (PhD , U niversity of S outh C arolina, 2002) is an A ssistant Professor of Political S cience at Lebanon Valley C ollege in Pennsylvania. H e is the author of In War We Trust, co-editor of Striking First, and co-author of The Presidency and Economic Policy. H is research on International R elations and A merican Politics appears in Foreign Policy Analysis, International Studies Perspectives, Politics and Ethics Review, Policy Studies Journal, International Politics, Congress and the Presidency, Review of Policy Research, White House Studies and numerous other journals and edited volumes. H e previously held positions at the U niversity of C entral F lorida and Presbyterian C ollege. Joyce D’Silva is the A mbassador and former C hief Executive of C ompassion in W orld F arming, the leading charity advancing the welfare of farm animals worldwide through research, education and advocacy. Compassion works to ban cruel factory farming systems and to achieve global standards of farm animal welfare. It works with politicians in the UK and European Union (EU), intergovernmental organizations, such as the International F inance C orporation, and leading retailers and the food industry. Between 1991 and 2005, Joyce took the organization from the status of a UK-based NGO working in the EU to an EU-based organization working internationally. U nder Joyce’s leadership, sow stalls and tethers were banned in the U K (and are to be banned in Europe), and barren battery cages for laying hens will be banned in 2012. Joyce’s knowledge of her subject is second to none and she is a very compelling communicator of the issues and the legal framework surrounding them. She speaks and publishes widely on the welfare of farm animals, genetic engineering and cloning of animals. Her numerous speaking engagements have included the British Veterinary A ssociation’s A nnual C ongress and the Intergroup on A nimal W elfare at the European Parliament. S he has given evidence to the U K and N ew Zealand governments on genetic engineering of animals, and to the UK government Enquiry into the handling of BSE. In 2007, she was invited to make a presentation to the European C ommission’s European Group of Ethical A dvisers on S cience and N ew T echnologies on the welfare aspects of cloning farm animals for food. Joyce addressed (and organized, with the RSPCA) the first conference on pig welfare in Beijing in 2005, at the invitation of the C hinese government. In March this year, C ompassion in W orld F arming and three other animal welfare N GO s organized a further conference, ‘T he Importance of F arm A nimal W elfare S cience to S ustainable

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A griculture’, co-hosted by the C hinese A cademy of S ocial S ciences. C ompassion’s 2005 Conference ‘From Darwin to Dawkins: the Science and Implications of Animal S entience’ attracted over 600 delegates from 50 countries and has resulted in two publications: Animals, Ethics and Trade (Earthscan), for which Joyce wrote the Introduction, and a special edition of the journal Applied Animal Behaviour Science. Juanita Elias is a S enior Lecturer in International Politics at the U niversity of A delaide, A ustralia. S he is the author of Fashioning Inequality: The Multinational Firm and Gendered Employment in a Globalizing World (A shgate 2004). Juanita’s research interests include ‘gendered’ approaches to international political economy and studies of globalization, labour standards, migration studies and the political economy of S outheast A sia. H er research has been published in journals such as New Political Economy, International Feminist Journal of Politics, the Review of International Studies, Economy and Society, and Men and Masculinities. Reidun Førde trained as a physician. H e has been C hair of the Ethical C ouncil of the N orwegian M edical A ssociastion for eight years and is Professor of M edical Ethics at the U niversity of O slo, responsible for the national co-ordination of the clinical ethics committees in N orway. Christian Gamborg (PhD ) is a senior scientist in natural resource ethics at the D anish C entre for F orest and Landscape and a senior research fellow at the D anish C entre for Bioethics and Risk Assessment, University of Copenhagen. His time is divided between these two centres with extensive project experience at a national and EU level. S ince 1998 the major part of his research and teaching have been within applied ethics with a particular emphasis on ethical issues in relation to sustainability, nature and natural resource management, modern technology, animals and agriculture. Mickey Gjerris is associate professor in bioethics at the D anish C entre for Bioethics and Risk Assessment, University of Copenhagen. His main research areas are bioethics, ethics of nature and nanoethics. H e teaches within the areas of bioethics and philosophy of science and is an often used expert in public context. Jon Grov is a PhD -student in C omputer S cience at the U niversity of O slo, N orway. H is specialties are databases and transaction processing. F rom 2004 to 2007 he was employed as researcher and lecturer at the D epartment of Informatics, U niversity of O slo. In 2006 he spent six months at the U niversity of M inho, Braga, Portugal, collaborating with the project GORDA . Jon has previous experience as software consultant and manager. C urrently, he is employed as senior consultant in the Norwegian company BEKK, working on enterprise data integration. Dr Jennifer Gunning originally trained as a scientist, over the years she became an expert on the regulatory and legislative aspects of assisted reproduction, having provided advice both to the European C ommission and the British government. S he

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was secretary to the Voluntary (later Interim) Licensing A uthority for H uman in vitro F ertilisation and Embryology, which regulated human embryo research and IVF before statutory regulation was introduced. Later she was seconded to the D epartment of H ealth to write a report on the comparative regulation of human IVF and embryo research for use while the 1990 H uman F ertilisation & Embryology Bill was going through Parliament. S ubsequently, she was involved in science policy, developing research assessment methodology and research ethics. A Visiting F ellow for six years at the C entre for the A nalysis of S ocial Policy at the U niversity of Bath she is now a S enior R esearch F ellow in bioethics and law at C ardiff Law S chool and an independent consultant in bioethics and science affairs. F rom 2003–2007 Jennifer was C o-ordinator of the C ardiff C entre for Ethics, Law and S ociety (CC ELS ). Natasha Hammond LLB, LLM is a Graduate T eaching A ssistant at C ardiff Law School undertaking research on the legal and moral aspects of human embryonic stem cell research. H er interests include embryo research, cloning, biotechnology and bioethics. Professor John Hodges directed activities in the UN F ood and A griculture Organization (FAO) for sustainable use and conservation of livestock agroresources in developing countries and was involved in drafting the UN C onvention on Biodiversity. Previously he was on faculty at C ambridge U niversity and was Professor of A nimal Genetics at the U niversity of British C olumbia, C anada. Earlier he was Head of the Production Division of the Milk Marketing Board of England and W ales. H e has a BS c (H ons.) in A griculture (R eading), MA in A nimal Production (C ambridge, D owning C ollege), PhD in A nimal Genetics (R eading) and a degree in Business A dministration from H arvard. Professor Søren Holm is a medical doctor and philosopher. H e is D irector of the C ardiff C entre for Ethics, Law and S ociety and Professor of M edical Ethics (parttime) at the U niversity of O slo. H e has written extensively on numerous topics in bioethics and the philosophy of medicine. Michael Igoumenidis is a PhD candidate at the U niversity of M anchester, S chool of Law. H e holds a M asters of A rts in H ealth C are Ethics & Law from the same institution, and a BS c in N ursing from the U niversity of A thens. H e has participated in a number of European projects on health issues, and has presented several papers concerning medical ethics in international conferences. H e is currently a part-time tutor at the Institute of Professional T raining in A igaleo, A thens. Jan Reinert Karlsen, research-fellow at the D epartment of General Practice and C ommunity M edicine, S ection for M edical Ethics, U niversity of O slo. Karlsen studied philosophy at the U niversity of Bergen and holds the degree of C and. Philol. Finalizing his PhD thesis, Karlsen has studied research biobanking as a case for European ethics policies in the field of biotechnology, science and

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development and the emergent knowledge based economy. Currently, Karlsen is employed as a researcher on the GeneBanC consortium, which is funded by the European Commission under the 6th Framework Programme. Dr Ian Kenway is currently D irector of the C entre for the International S tudy of C yberethics and H uman R ights (CISCHR ), H onorary R esearch F ellow in Ethics and ICT at C ardiff U niversity and C o-ordinator of CC ELS . Previous positions have included A ssistant S ecretary of the C hurch of England’s Board for S ocial R esponsibility at W estminster, where he exercised a brief for legal affairs and edited its journal Crucible (1988–1993), and D irector of S tudies at the C entre for the S tudy of T heology – later renamed the C entre for T heology and S ociety – at the U niversity of Essex (1993–1999). D uring 1999–2001 he was engaged in independent research in S outhern N evada in ethics and information and communication technologies. H is interests include: internet governance, ‘the digital divide’, censorship and privacy issues, digital watermarking and the relationship between IT and public policy. Dr Eva Krizová teaches medical sociology, medical ethics and public health at the T hird F aculty of M edicine, C harles U niversity in Prague. Professor Robert G. Lee was H ead of C ardiff Law S chool from 1995–1999, and is C o-D irector of the ESRC C entre on Business R elationships, A ccountability, S ustainability and S ociety (BRASS ). H e is an environmental lawyer and an acknowledged expert on contaminated land and on waste management. He is editor of Environmental Law Monthly, Environmental Editor for the Journal of Business Law and C urrent D evelopments Editor of the Journal of Environmental Law. Bob is a professional development consultant with the Environment, Products and Regulation Group of Freshfields Bruckhaus Deringer, and continues to have an active interest in legal practice. He is a Member of the QAA Benchmarking Panel for Law, and the Lord C hancellor’s S tanding C onference on Legal Education. H e is a F ellow of the R oyal S ociety of M edicine. Erik Malmqvist teaches bioethics and does research at the D epartment of Medicine and Health Sciences, Linköping University, Sweden. He is at the time of writing finalizing his doctoral thesis, a philosophical enquiry into the ethics of assisted reproductive technologies. Mike McNamee is Professor in Philosophy at the D epartment of Philosophy, H umanities and Law in H ealthcare, S chool of H ealth S cience, S wansea U niversity. H is research interests are the philosophies of education, health, leisure and sport, and especially the ethics of medicine, research, and sport. His most recent book is Sports, Virtues and Vices: Morality Plays (R outledge 2008). H e is editor of Sport, Ethics and Philosophy, a former President of the International A ssociation for the Philosophy of S port, and the inaugural C hair of the British Philosophy of S port A ssociation.

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Marie Mesanyová, graduated in pedagogic nursing at F aculty of Philosophy & Arts, Charles University in Prague and in psychology at Masaryk University in Brno. She is teacher of nursing and she works in the area of psychological counselling. From 2001 she takes part in grant projects sponsored by Grant Agency of C zech R epublic at C harles U niversity and at S outh Bohemian U niversity. Kate Millar is director of the C entre for A pplied Bioethics, S chool of Biosciences, U niversity of N ottingham. S he is currently vice president of the European S ociety for A gricultural and F ood Ethics (EurS afe). H er research focuses on the ethical issues raised by the application of biological knowledge to the use of animals, agrifood production, and environmental management. S he has a particular interest in biotechnology ethics, and the development and application of ethical frameworks and stakeholder participatory methods. Marit Hovdal Moan is a PhD research fellow at the N orwegian U niversity of S cience and T echnology (NTNU ), Programme for A pplied Ethics, Philosophy D epartment. H er project focuses on how to ground claims of state responsibility to meet irregular migrants’ basic needs in the particular context of modern liberal democratic society. Professor David Morton is Professor Emeritus of Biomedical S cience and Biomedical Ethics at the U niversity of Birmingham where he set up the department of H ealthcare Ethics and Law over 15 years ago. H e is a veterinarian with research interests in the welfare of animals, particularly the recognition and assessment of animal pain, distress and suffering during husbandry and slaughter. H e is a member of the European Food Safety Authority (EFSA) Scientific Panel on Animal Health and A nimal W elfare, the EU C ommission D G R esearch Ethics R eview Panel for F P7 projects, the U K C ompanion A nimal W elfare C ouncil and the F arm A nimal W elfare Council (FAWC) where he sits on the ruminants and welfare strategy working groups. H e was awarded the RC VS ’s Livesey M edal (1993) for the prevention or alleviation of pain and fear in animals, the S mithKline Beecham/RDS award for animal welfare (1995), and the R ussell and Burch A ward (2002) for outstanding contributions to the T hree R s in animal research. H e is a member of various animal welfare-oriented scientific and professional organizations such as the Farm Animal W elfare T rust, the British Veterinary A ssociation’s Ethics and W elfare Group, and the F und for the R eplacement of A nimals in M edical Experiments (FRAM E). Reidar Pedersen trained as a physician and philosopher. H e has been employed by the S ection for M edical Ethics, U niversity of O slo as a research fellow, and coordinator for the clinical ethics committees in N orway since 2004. In addition he is working on a PhD project about the concept of empathy in medicine. Elisa Pieri is an applied linguist and a social scientist, with a background of interdisciplinary research in controversial aspects of science, technology and policy.

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H er research interests and publications are in the areas of: public engagement with science; sociology of science and technology; ethical, legal and social aspects of new technologies; human and plant genomics (with specific reference to GM crops and foods, personalized medicine, psychiatric and behavioural genetics, the neurosciences); biopolitics, power and surveillance (including biometrics). Elisa recently joined the ESRC N ational C entre for e-S ocial S cience (M arch 2008), where she is researching the debate over the N ational Identity S cheme and the Introduction of Biometric ID C ards in the U K. S he had previously (2004–2008) been working at the ESRC Centre for Social and Economic Aspects of Genomics (C esagen), Lancaster U niversity, where she investigated the ethical, social, legal and policy impacts of genomic technologies, specifically in the areas of behavioural genetics and pharmacogenetics. Before joining C esagen Elisa was coapplicant and research associate on an ESRC -funded project on ‘T he D iscourse of the GM F ood D ebate’ (2003–2004) and research associate on the ESRC -funded project ‘T he C ommunication of GM C rop R esearch from Expert to N on-Experts’ (2001–2002), both at the U niversity of R eading, U K. Kjetil Rommetveit is associate professor at the C entre for the S tudy of the Sciences and the Humanities, University of Bergen, and has a background in law and philosophy of science. H is main research interests are in biopolitics, ethics, science and technology studies and the philosophy of science. R ecent publications include R ommetveit, K. (2007): ‘Biotechnology: A ction and choice in second modernity’, PhD T hesis, F aculty of A rts, U niversity of Bergen; R ommetveit, K. (forthcoming) ‘T owards a hermeneutic of technomedical objects’, Theoretical Medicine and Bioethics; R ommetveit, K., Porz, R . (forthcoming) ‘T ragedy and boundary situations in predictive genetic testing’ in Medicine, Health Care and Philosophy, R ommetveit, K., S trand, R . (forthcoming): ‘N anoparticles, IPR s and strict liability’, Studies in Ethics, Law and Technology. Peter Sandøe (D Phil, O xon), Professor of Bioethics at the F aculty of Life S ciences, U niversity of C openhagen since 1997. H e was educated in philosophy at the U niversity of C openhagen and the U niversity of O xford (D Phil. 1988). Peter Sandøe is also the director of the Danish Centre for Bioethics and Risk Assessment (C eBRA ), an interdisciplinary and cross-institutional research centre founded in 2000. S ince 1992 he has served as the chairman of the D anish Ethical C ouncil for A nimals, an advisory board, set up by the D anish M inister of Justice. F rom 2000 to 2007 he served as the President of the European S ociety for A gricultural and Food Ethics. Since 1990 the bulk of his research has been within bioethics with particular emphasis on the ethical issues raised by animals and biotechnology, mostly in broad, multidisciplinary cooperation. Erwin Schmid is leading the working group resources/sustainability at the Institute for S ustainable Economic D evelopment, U niversity of N atural R esources and A pplied Life S ciences in Vienna. H is research focus is on integrative analysis

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to support policy decision-making in the sustainable management of natural and biological resources. H e has been partner in many national and international research projects on topics including agricultural and land use policy analysis, multifunctional agriculture, and adaptation strategies in agriculture to global change. M ore information on: . Jiri Simek, physician with qualifications in internal medicine, psychiatry, psychoanalysis and psychosomatics. F rom 1990–2007 he was H ead of the Institute for M edical Ethics and N ursing at 3rd F aculty of medicine, C harles U niversity in Prague. F rom 2007 H ead of the C hair for Philosophy and Ethics in H elping Professions at the F aculty of H ealth and S ocial S tudies, U niversity of South Bohemia in Ceské Budejovice. He has conducted research projects in transformation of healthcare systems in post-communist countries, informed consent, research ethics, care for elderly patients. Kadri Simm, PhD , is a senior researcher in the Institute for Philosophy and S emiotics at the U niversity of T artu. H er research interests include moral and political philosophy, bioethics (esp. justice issues in medical research), gender studies and science and technology (STS ) studies. S he has previously published on benefit-sharing debates in biomedicine, ethical and social aspects of biobanking and feminist political philosophy. Franz Sinabell is senior researcher at the A ustrian Institute of Economic R esearch in Vienna. H e is a lecturer at the U niversity of N atural R esources and A pplied Life S ciences, Vienna and member of the A dvisory C ouncil of the F ederal M inister of A griculture and Environmental affairs. H e has been partner in many national and international research projects on topics including agricultural policy analysis, agri-environmental indicators, the multifunctionality of agriculture and costbenefit analyses of measures to control natural hazards. More information on: . Anne Maria Skrikerud is a philosopher with the degree of C and. Philol. from the D epartment of Philosophy, U niversity of O slo. S he delivered her thesis in 2003 about embryonic stem cell research. Currently Anne Maria is working as a research fellow at S ection for M edical Ethics, F aculty of M edicine at the U niversity of Oslo. There she is working on her PhD thesis about information, privacy, and risk in biobank research. Hayley Stevenson is a PhD candidate in the S chool of H istory and Politics at the U niversity of A delaide, A ustralia. H er main research interests include international relations theory, international environmental politics, and normative change within the international community. H er present research explores the diffusion and contestation of international norms of climate change governance.

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Professor Roger Strand, D irector of the C entre for the S tudy of the S ciences and the H umanities, U niversity of Bergen, N orway. Visiting Professor, Inst. of Environmental S cience and T echnology, A utonomous U niversity of Barcelona, S pain. Prof. S trand holds a PhD in biochemistry. H is research mainly falls within the philosophy of natural science and biomedicine, including research on the ethical and social aspects of bio- and nanotechnology. T he focus of research is on the nature and significance of scientific uncertainty and complexity for environmental and health-related decision-making processes. He is a member of various ethics committees, including the N ational C ommittee of R esearch Ethics of N atural S cience and T echnology in N orway. Margit Sutrop is Professor of Practical Philosophy and D irector of the Institute for Philosophy and S emiotics at the U niversity of T artu, Estonia. S he is the founding D irector of the interdisciplinary C entre for Ethics at T artu U niversity. S he has published widely on aesthetics, moral and political philosophy, and most recently on bioethics. S he is the author of Fiction and Imagination: The Anthropological Function of Literature (Paderborn: M entis, 2000), and the editor of six books. She has been a guest editor of a special issue of Bioethics (vol. 18, 2004) on pharmacogenetics and of Trames (vol. 8, 2004) on the ethical, legal and social issues of human genetic databases. S he has co-authored (with Kadri S imm) an article on the Estonian healthcare system and the genetic database project in Cambridge Quarterly of Healthcare Ethics and recently contributed to the volume The Ethics and Governance of Human Genetic Databases. A European Perspective (eds M . H äyry et al.) published by CU P in 2007. S he has co-ordinated numerous national (ten grants) and international (eight grants) R &D projects. S he is member of the Estonian President’s A dvisory Board, member of the Estonian C ouncil of Bioethics, member of the C linical Ethics C ommittee of T artu U niversity C linic, member of the C ouncil of the Academia Europaea, of the European C ommission’s A dvisory Board for H umanities in the 7th F P and an ethical expert of the European C ommission. Claudio Tamburrini is an Associate Researcher at the Stockholm Bioethics Center, Department of Philosophy, Stockholm University, in Sweden. He is the author of Crime and Punishment? (Acta Universitatis Stockholmiensis, 1992) and of several international articles on penal philosophy. In the area of the philosophy of sports, T amburrini has published The “Hand of God”? Essays in the Philosophy of Sports (A cta U niversitatis Gothoburgensis, 2000), which has also been translated into S panish. Both in S weden and in A rgentina, T amburrini has accomplished a pioneering work in introducing the philosophy of sports as an academic discipline. Together with Torbjön Tännsjö, he is the co-editor of Values in Sport: Elitism, Nationalism, Gender Equality and the Scientific Manufacture of Winners (London and New York, E & FN Spon, 2000), Genetic Technology and Sport: Ethical Questions (London and New York, Routledge, 2005) and The Ethics of Sports Medicine (S pecial Issue of Sport, Ethics and Philosophy; R outledge, vol. 1,

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Ethics, Law and Society: Volume IV

number 2, August 2007). At present, he is working on two different books, one on moral relativism and its implications for the punishment of human rights violators, and another on ethical aspects of genetic physical enhancements. T amburrini was also a professional soccer player in A rgentina. Dr Samarthia Thankappan is a lecturer in the D epartment of Environment at the University of York. She has conducted research on a wide range of issues relating to sustainable production and consumption. S ome of her recent research involvements include: examining the complexities of the private-interest model of food regulation and the role played by retailers in the food sector in trying to influence consumers; the diffusion of climate change ideas and issues along the food supply chain in the U K; the nature-society relationships, on the production and consumption of food and issues surrounding religious, moral and ethical perspectives on food biotechnology. H er research interests include: supply chain management; sustainable communities and lifestyle; regulation, governance and space; sustainable ecosystems and energy modelling and environmental issues surrounding SM Es. Jane K. Winn is C harles I. S tone Professor at the U niversity of W ashington S chool of Law and D irector of the S hidler C enter for Law, C ommerce and T echnology. H er teaching and research interests include commercial, comparative and technology law developments in the US , EU and Greater C hina. S he is co-author of T he Law of Electronic C ommerce (4th ed. 2008 updated) as well as numerous articles on law and technology topics, copies of which are available at <www.law.washington. edu/faculty/winn/> or at <ssrn.com/author=334081>. Mgr. Lenka Zamykalová graduated in sociology at F aculty of S ocial S ciences, Charles University in Prague. From 2001 she took part in sociological research in medicine at the Institute of S ociology of the A cademy of S ciences of the C zech R epublic, at the C enter for T heoretical S tudy, C harles U niversity in Prague and at S outh Bohemian U niversity.

Acknowledgment T he production of this volume would not have been possible without the assistance of John C oggon, N atasha H ammond and last, but not least, S arah Kennedy to whom we are indebted for ensuring that the volume came together in a publishable form. Jennifer Gunning S øren H olm Ian Kenway

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List of A bbreviations ACP African Caribbean and Pacific (countries) ACPO Association of Chief Police Officers (UK) ADR A dverse D rug R eaction AMS Associated Marketing Services AWA A nimal W elfare A ct 2006 (U K) BS E BT V

Bovine S pongiform Encephalopathy Blue T ongue Virus

CA P C ommon A gricultural Policy (Europe) C EC C linical Ethics C ommittee C EN European S tandards O rganization C ESA Gen C entre for Economic and S ocial A spects of Genomics CIOMS C ouncil for International O rganizations for M edical S ciences CIT ES C onvention on International T rade in Endangered S pecies C LS C ore Labour S tandards CMO Chief Medical Officer CO LR EG C onvention on the International R egulations for Preventing C ollisions at S ea CONTU ���������������������������������������������������������������� US N ational C ommission on N ew T echnological U ses of C opyrighted Works CSR C orporate S ocial R esponsibility C VM C enter for Veterinary M edicine D efra D epartment for the Environment F isheries and R ural A ffairs (U K) DME Developed Market Economy DNAR D o N ot A ttempt R esuscitation DRM D igital R ights M anagement EA GGF European A gricultural Guidance and Guarantee F und ECHR European C onvention on H uman R ights EEA European Economic A rea EFSA European F ood S afety A uthority EGE ���������������������������������������������������������������� European Group on Ethics in S cience and N ew T echnologies to the European C ommission EIA Energy Information A dministration EIM European Internal Market

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Ethics, Law and Society: Volume IV

ELSI����������������������������������� Ethical, Legal and S ocietal Issues EMD European Marketing Distribution ESC Embryonic S tem C ells EU European U nion EUREP Euro Retailer Produce Working Group FAWC F arm A nimalW elfare C ouncil (U K) FDA US F ood and D rugs A dministration FDI F oreign D irect Investment F EO GA F ondo Europeo de F ondación y Garantía para la A gricultura FF V F resh F ruit and Vegetables FMD F oot and M outh D isease FMI Food Marketing Institute FSA F ood S tandards A gency (U K) GA P GATT GFSI GM GMO

Good A gricultural Practice General A greement on T ariffs and T rade Global F ood S afety Initiative Genetically modified Genetically Modified Organism

HACC P H azard A nalysis and C ritical C ontrol Points hESC H uman Embryonic S tem C ells HF EA H uman F ertilisation and Embryology A uthority HIV Human Immunodeficiency Virus HS E H ealth and S afety Executive (U K) IA B International A ssociation of Bioethics IAH Institute of A nimal H ealth ICM Integrated C rop M anagement IFOAM International F ederation of O rganic A griculture M ovement IGD Institute of Grocery D istribution II ED International Institute for Environment and D evelopment ILO ��������������������������������� International Labour O rganization IMF International M onetary F und IMO International M aritime O rganization IPM Integrated Pest M anagement iPSC Induced Pluripotent S tem C ells ISO International O rganization for S tandardization LOD

Limit of D etermination

MAFF M inistry of A griculture F isheries and F ood (U K) MCA U K M aritime and C oastal A gency

List of Abbreviations

xxv

MPS Market Price Support MR L M aximum R esidue Level MTR M id T erm R eview NA PCCI N orth A merican Pallet, C arton, and C ase Initiative NCCR N ational C ouncil of C hain R estaurants NFU N ational F armers U nion (U K) N GO N on Governmental O rganization NHS N ational H ealth S ervice (U nited Kingdom) NOU N orges offentlige utredninger O ECD O rganization for Economic C ooperation and D evelopment OHCHR Office of the High Commissioner for Human Rights (UN) OI E W orld O rganization for A nimal H ealth OTA Office of Technology Assessment (USA) PGD PGx PND PPT PSC PS E PS J

Preimplantation Genetic D iagnosis Pharmacogenetics Prenatal D iagnosis Post-Productivist T ransition Port S tate C ontrol Producer S upport Estimate Port S tate Jurisdiction

R &D R esearch and D evelopment R EC R egional Ethics C ommittee RFID Radio Frequency Identification S &T S cience and T echnology SCAHAW Scientific Committee on Animal Health and Welfare (European C ommission) SCNT S omatic C ell N uclear T ransfer SO LAS International C onvention for the S afety of Life A t S ea SOSR EP S ecretary of S tate’s R epresentative for M aritime S alvage and Intervention (U K) S PCA S ociety for the Prevention of C ruelty to A nimals STCW International Convention on Standards of Training, Certification and Watchkeeping for Seafarers SVC Scientific Veterinary Committee T PM T echnical Protection M easures UNC LOS U nited N ations C onvention of the Law of the S ea UNCRC UN C onvention on the R ights of the C hild

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UNIC EF U nited N ations C hildren’s F und UNIF EM U nited N ations D evelopment F und for W omen UNMOVIC United Nations Monitoring Verification and Inspection Commission WMA W orld M edical A ssociation WMD W eapons of M ass D estruction WTO W orld T rade O rganization YIS P Y outh Inclusion and S upport Panel Y JB Y outh Justice Board (England)

INTRODUCTION ntroduction

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C hapter 1

Introduction Jennifer Gunning, S øren H olm and Ian Kenway

Ludwig Feuerbach’s stark but truthful observation ‘Der Mensch ist war er isst’ (translated – with license – ‘People are what they eat’) has frequently been the subject of misconstrual and controversy. D uring 2007–2008, however, the phrase seems to have taken on a remarkably new lease of life; not through its adoption by a new generation of materialist philosophers, but rather in its ability to provide a useful lens through which to interpret tectonic shifts in economic and political reality. T he past eighteen months have seen a number of noteworthy events, developments and overt threats which have served to remind us forcefully of the extremely fragile nature of our existence and the genuine difficulties of ensuring sustainable economic growth. In the U K, for example, we have witnessed the accidental release of foot and mouth pathogens from the research facility at Pirbright, the rising threat of bluetongue disease to UK flocks and the spectacle of a celebrity chef taking the case for enhanced poultry welfare directly to the shareholders of a multi-billion pound retailer. Internationally, we have witnessed the deliberations of the H igh-Level C onference on W orld F ood S ecurity in R ome in June 2008 – grappling fitfully with rising commodity prices, the potential role of GM crops and the desirability of biofuels – and, more recently, the collapse in Geneva of the Doha Round of world trade talks after seven years of detailed and painful negotiation. Against such a febrile background, few can remain oblivious to the interlocking and tightening relationships which are rapidly developing between food production, energy security, climate change and our general sense of economic and social well being. M any of the chapters in this volume bear varied witness to this particular confluence of concerns and provide as a result timely insights into the burgeoning agenda of contemporary ethical debate. A nd the questions are numerous and pressing. H ow can we survive as a species? A nd, what is perhaps more important, survive with dignity? How can humankind, as the dominant species on our planet, make imaginative use of ‘the good Earth’ while at the same time vouching sincerely to act as its true protector and guarantor? Is food simply a matter of utility or is it ultimately symbolic of something greater, regardless of one’s ethnicity, culture or religious persuasion? C an recourse to law, not least internationally, ensure that the interests of the most vulnerable are, at least from time to time, heard rather than ignored?



Ethics, Law and Society: Volume IV

Part I of the volume attempts to explore some of the ethical issues that are raised by modern farming practices, contemporary food production and its associated regulation, agricultural subsidy regimes and animal welfare advocacy. Part II focuses on a number of bioethical issues, especially those associated with healthcare, reproduction, biobanking and the potential benefits of genetic research. Part III widens the scope to examine several contemporary hot debates in society, especially those associated with human competition and conflict. Finally Part IV consists of commentaries on a miscellany of issues that have found particular prominence in recent headlines. D espite the diversity of topics covered, several common themes emerge, including the rediscovery and redefinition of personal responsibility as we slowly face up to the constraints and limitations of the modern state or the relative impotence of international bodies to initiate or broker change for the betterment or enrichment of society. Ethics as a distinct area of philosophical inquiry may of course be approached and understood in a number of ways. H owever, there is always a sense in which it arises both initially and practically from our hunger or thirst, in short our desire, to do what is right; this requires us not only to interrogate our motives routinely but also to scan the horizon widely and diligently for the likely outcomes of our actions. H ow does a self-perpetuating ‘me generation’ understand intergenerational justice and work towards its effective realization? How does a celebrity-obsessed culture learn to turn off the camera, microphone, mobile and laptop and begin to dig and plant, if not for victory, then new forms of self-reliance and self-worth? C an the past be the new future? U nfortunately the idyllic charms of A rcadia or its suburban equivalents are not easily reconcilable with the brash boastings of new technologies which promise a ‘brighter’ future through the endless exploitation or ‘makeover’ of the environment. Ethical reflection in a rapidly changing world is rarely neat or tidy. None of our contributors are likely to imagine that what they offer here is more than a timely ‘report from the frontline’, the opportunity to tease out and articulate some broader principles, in short to provide us with useful food for thought. W e are enormously grateful for their effort and enthusiasm.

PART I ETHICA L ISSU ES IN A GRICU LTUR E AND FOOD

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C hapter 2

M odern F arming Practices and A nimal W elfare Joyce D ’S ilva

T he last 50 years has seen a transformation of farming practices in the developed world and this transformation is now expanding rapidly to countries with fastgrowing economies and populations like China and Brazil. Essentially, farming has changed from being a source of livelihood for individual families to being big business, from being family farm centred to being market and profit driven. T his scenario has created winners and losers. T he winners are the big national or global agribusiness companies, many of which operate integrated operations, supplying breeding stock, feed and markets. Some would say consumers are winners too, as they can now eat far more meat, dairy products and eggs, as the relative price of these products has fallen. T he losers are often the traditional family farmers and the peasant farmers in developing countries, who now cannot compete with large-scale farming and who feel forced to give up and find alternative employment, often drifting to urban areas in desperation. T here are many arguments to say that the environment is also a loser. M ass production of farm animals results in pollution of water and soil and has a detrimental impact on water use, global feed crop production and deforestation. As we now know, livestock production is responsible for 18% of the greenhouse gases associated with human activity (S teinfeld 2006). C onsumers could be long-term losers too. M eat and dairy are responsible for much of the unhealthy saturated fat in ‘modern’ diets. In 2007 the W orld C ancer R esearch F und recommended that people should eat ‘mostly plant foods’, cut down on red meat and avoid processed meat, in order to reduce the risk of certain cancers (W orld C ancer R esearch F und /A merican Institute for C ancer R esearch 2007). S o the cheap price of animal products may – inadvertently – be detrimental to our health. F arm animals themselves may be the biggest losers from the growth in industrial production. O f course it would be inappropriate to ignore the advances in veterinary treatments available and our capacity to prevent disease outbreaks through routine vaccination. But these real improvements in prevention and treatment of disease may well be the only welfare benefits to farm animals over the last half century. In fact, maximizing productivity has been the driving force in the increasingly intensive nature of the farming of animals and has resulted in serious threats to the health and welfare of the animals.



Ethics, Law and Society: Volume IV

Selective Breeding F arm animals have been selectively bred for centuries, but new technology has speeded up the rate of change enormously. F arm animals are normally selected for fast growth and high yield. Increased growth rates and muscular development or higher yields of milk or eggs can put enormous strain on both the skeleton and the cardiovascular systems of animals. A prime example of this is the modern meat chicken or broiler. Broiler (meat) chickens Most of the breeding stock for the 48 billion broiler chickens slaughtered globally per annum comes from just three companies. M any breeds are developed to reach market weight one day earlier each year (Cruikshank 2003). Already broiler chickens can grow from fluffy yellow chick to slaughter weight in less than six weeks. In O ctober 2007 one of these breed companies, C obb-Vantress, issued a press release about their latest broiler, the C obb 700, which, they say ‘is aimed at the rapidly expanding demand for breast meat for premium value-added products. The market is looking for broilers that will grow to heavier weights and achieve a high meat yield, with also the preferred breast muscle profile for the most valuable “whole muscle” products’ (C obb-Vantress 2007). T his emphasis on breast muscle growth can be particularly damaging. A long with rapid growth rates, it can affect locomotion: the rapidly increasing body weight will place greater demands on the immature skeleton, and the change in shape can alter the forces produced during walking (Corr 2003). This places extra strain on the legs. T he impact of fast growth can be seen most clearly in the prevalence of lameness in the broiler chicken flock. In 2006 Defra published the results of a three year study into broiler lameness conducted by the U niversity of Bristol. Five major UK broiler companies took part, and approximately 51,000 birds were gait scored, where an objective assessment was made of their walking ability. At least 27.6% of the chickens showed gait scores of 3 and above (out of a scale of one to five), revealing widespread lameness problems in the broiler chicken flock (U niversity of Bristol 2006). Even though broiler chickens get sent to slaughter at such a young age, around 1–2% may develop heart problems and ascites (fluid build-up in the chest) before this time. Genetic factors are one of the causes of the increased strain placed on the cardiovascular system due to fast growth (Julian 2000; M axwell 1995). In 2000, the European Commission’s Scientific Committee on Animal Health and A nimal W elfare (SCAHAW ) produced a report on the welfare of broilers saying ‘It is clear that the major welfare problems in broilers are those which can be regarded as side effects of the intense selection mainly for growth and feed conversion. These include leg disorders, ascites, sudden death syndrome in growing birds and welfare problems in breeding birds such as severe food restriction’ (SCAHAW 2000, C h. 13).

Modern Farming Practices and Animal Welfare



They concluded: ‘Most of the welfare issues that relate specifically to commercial broiler production are a direct consequence of genetic selection for faster and more efficient production of chicken meat’ (SCAHAW 2000, Ch.12). This is a story with an ironic twist in its tail. Because broiler chickens are bred for this exponential growth rate, there is a problem in keeping the breeding birds alive and healthy long enough to reach puberty (at around 18 weeks) so that they can breed. If these birds ate as much as their descendants, many would develop high rates of lameness and heart disease by that time. T o ensure they do live long enough, they are fed just enough food to keep them growing – sometimes this can be only 25% of what they might normally eat (Savory et al. 1993). W hen C ompassion in W orld F arming challenged the U K government on this practice in the H igh C ourt in 2003, the judge agreed that such birds were in a state of ‘chronic hunger’ – while dismissing the case (R (Compassion in World Farming Limited) v Secretary of State for Environment, Food and Rural Affairs).  Turkeys The modern farmed turkey bears little resemblance to its still-existing wild ancestor, who can live in tough conditions and fly (and is still widely hunted in N orth A merica). A ccording to Dr James Bentley of British United Turkeys, a male turkey now grows to 19.6 kg at 21 weeks. He adds, ‘Current rates of genetic progress in live-weight are estimated at 3% per annum in male lines and 1% in female lines, giving an overall rate of progress in cross progeny of 2%’ (McKay et al. 2000). The ‘progress’ in breeding turkeys for rapid growth rates is shown in T able 2.1. Leg and hip problems are common, and may be exacerbated by the practice of hanging these very heavy birds upside down from shackles at the slaughterhouse before they are stunned and killed. In another twist to the poultry story, the breeding turkeys now grow so large that natural mating is impossible. People are employed to ‘milk’ the breeding turkey cockerels for their semen and all breeding is done by artificial insemination. Apparently some kinds of bestiality are quite legal! Table 2.1

The effects of genetic selection on the performance of turkeys over time (males of a commercial breed)

Year Time required to reach slaughter weight 1960 22.0 weeks 1970 20.5 weeks 1980 18.7 weeks 1990 17.4 weeks 2000 15.5 weeks Source: National Turkey Federation Convention

Food Conversion Ratio 3.20 2.97 2.75 2.53 2.30

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‘Modern’ breeds of dairy cows T he effects of selective breeding can also be seen in the modern dairy herd. T he average dairy cow in the UK now produces over 6800 litres of milk a year (Defra 2007), about 30% more than her counterpart of just 10 years ago (Defra 2004). This is five times more milk than her calf needs. Yield in the US is over 9000 litres a year (FAO 2007), indicating an even higher intensification. The breeding of larger and longer H olstein cows has meant that many dairy ‘cubicle’ sheds are now inadequate as, when the cows stand in their cubicles, their hind feet have to rest on the slurry-covered floor behind the cubicle rather than in the cubicle itself. Rates of 20% to 50% lameness per annum are regularly revealed in Western dairy herds (Webster 2005). A study in the Netherlands found that more than 83% of cows examined suffered lameness (Broom 2007). If not treated swiftly and well, the pain from lameness can be ‘severe and enduring’ (W ebster 1987). T he actual shape of the cow has also been altered to give an ever-larger udder so that they can produce more milk. This is also one of the contributory factors to increasingly high levels of mastitis, painful udder inflammation. At any given time half of all US dairy cattle have mastitis (Adcock 1995). A wide-ranging investigation into the incidence of mastitis in dairy herds found 71 cases of mastitis per 100 cows per year in England and W ales. T he authors estimated 47–65 cases of mastitis per 100 cows per year as the likely average (Bradley et al. 2007). T his extreme breeding has had adverse impacts on the calves born to such cows. N early all calves born to dairy cows are removed from their mothers within two days and the cows are milked to capacity for the dairy trade. Sadly, the bull calves are not favoured by the beef trade, being long and bony like their mothers, so many are killed shortly after birth and others are reared for a few months for veal. W ith most European veal farming centred in the N etherlands, Belgium and F rance, calves are exported to these countries in large numbers from eastern Europe and from the U K, subjecting them to long and stressful journeys. Beef cattle T he ‘Belgian Blue’ breed of cattle is one extreme example of selective breeding for excessive muscle development (British breeders now refer to the ‘British Blue’). Breeders latched on to a ‘natural’ mutation in a gene which produced ‘doublemuscled’ animals. N ow these mighty creatures with their enormous hindquarters are highly prized for the large quantity of meat yielded by each animal. T he downside is that the females don’t have a sufficiently expanding pelvic region to be able to give birth to their calves, and many births are by caesarean section (SCAHAW 2001). Pigs M odern breeds of pigs in the W est are usually based on the genetics of two breeds, the Landrace and Large W hite. T hey have been selectively bred for high

Modern Farming Practices and Animal Welfare

11

reproductive performance, often doubling the litter size of their ancestors. T his can put a strain on the sow which has to produce enough milk and it can lead to more, weaker piglets, with a poorer survival rate. As with the chickens, faster growth rates can strain the metabolism and put pressure on heart and lungs. Leaner carcasses and paler skin make outdoor rearing, with all its welfare benefits, harder to achieve with such breeds, as they can be more susceptible to cold and heat stress and sunburn. Their longer bodies can put increased stress on their back legs (Arey and Brooke 2006, Ch. 10). Con.nement and Over crowding All animals on factory farms are confined in some way, either in individual pens, sometimes chained or tied by the neck, or confined to a small area of floor space in crowded pens, houses or cages. N atural behaviour and social groupings – as well as normal exercise – are thwarted in such conditions. Veal calves One of the most notorious examples of individual confinement is the keeping of calves in individual crates from the age of one week to slaughter at 4–6 months for veal production. F or most of the rearing period they are unable to turn round and only able to stand up or lie down. In nature, calves live in social groups and suckle from their mothers around seven times in the 24-hour cycle. In the veal crate they are isolated and have no regular physical contact with any other being. T hey are fed their low-iron milk substitute once or twice a day. The low-iron liquid diet is fed so that the flesh produced will be the ‘white veal’ most favoured by gourmet restaurants. This means the calf is on the verge of clinical anaemia. When finally taken to slaughter, calves are often seen to stagger towards the truck, as they have never used their legs for walking. From 2007, the European Union has banned the keeping of calves in crates in which they cannot turn round. Both iron and roughage are now added to the diet. H owever, in N orth A merica, the system continues, although in 2007 both A rizona and O regon banned the system and a move to ban it is underway in C alifornia. However, even though kept in groups, EU law does not require bedding material such as straw to be given (although U K law does require it) and many veal calves live on concrete or wooden flooring with a slatted drainage area. Pregnant sows Pregnant sows are also commonly kept in single stalls, known in Europe as sow stalls and in A merica as gestation crates. T he sow is housed individually and either chained to the floor or side of her crate or it will have bars at the front and two sides and a chain across the back which can be removed when she is taken away.

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Ethics, Law and Society: Volume IV

The sow spends most of her 16½-week pregnancy in the individual stall and is unable to turn round throughout that time. She lies on a concrete and slatted floor with no straw or other bedding material for comfort. A s pigs too have been bred to grow heavier and meatier, the sows often develop leg sores as they lie on the cold, wet concrete. M ost of a pig’s nervous system is connected to its highly sensitive snout. In natural conditions, which for pigs is light woodland, the animals would spend up to 50% of their time using their snouts to root in the soil, seeking tubers and grubs to eat and another 23% in foraging behaviour (Stolba and Wood-Gush 1989). Such behaviour is totally impossible in the confines of a concrete and metal-barred crate. The UK (1999) and Sweden (1988) took the lead in banning sow stalls. The EU plans to ban them from 2013, whilst allowing their use for the first 28 days of pregnancy. They are being phased out in New Zealand, Australia and three US states, but are still in widespread use elsewhere in the world. The sow’s individual confinement continues when she is ready to farrow (give birth). S he is put into another crate with an additional space for her piglets and possibly a little sawdust to lie on. H er strong instinct to build a metre-high nest in which to farrow is totally frustrated and often sows can be seen making down-forward-and-up movements at the front of the farrowing crate in a desperate attempt to build a nest. O nce she has farrowed, her maternal instincts are completely frustrated as she can barely touch her piglets with her snout. They are allowed to suckle only for three to four weeks before they are taken away for fattening. In normal conditions they would suckle for three to four months or more. As with the dairy cow, the maternal instinct is consistently frustrated in factory farming systems. Broiler (meat) chickens Other animals are crowded together to maximize profit. The broiler chicken is an obvious example. Day old chicks are placed, perhaps 20,000 at a time, into huge, often windowless, sheds. The floor is composed of wood shavings known as ‘litter’. In the early days there is plenty of room for the chicks to move round, but as they get near slaughter weight, their space allowance drops so that often there are 16–20 chickens per sq m of floor space (less than a sheet of A4 paper per chicken). The birds’ natural behaviours of perching, walking, running, even flying, are obviously frustrated. By this time, the floor appears to be carpeted with chickens and birds can be seen struggling to get to the food and watering points. The floor becomes increasingly filthy with excreta and the build up of ammonia. Burns to the hocks and blisters on the feet are a frequent result (SCAHAW 2000, S ect. 4.2). Egg-laying hens The other type of chicken is the egg-laying hen and we keep her with four or more cage mates in a battery cage. The Scientific Veterinary Committee of the European U nion declared in 1996 ‘It is clear that because of its small size and

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barrenness, the battery cage as used at present has inherent severe disadvantages for the welfare of hens’ (SVC 1996). Research by Professor Marian Dawkins at O xford U niversity has shown that the average space used by hens to perform basic behaviours, such as standing, ground-scratching, wing-flapping and preening varies between 475 sq cm and 1876 sq cm, although the top end of the range was up to 2606 sq cm (Dawkins and Hardie 1989). Under current EU rules, each caged hen has, at the moment, 550 sq cm, although in the US it is considerably less. Because caged hens stand on a sloping wire mesh floor they are unable to indulge their instincts for dust-bathing or pecking at the ground for food. They tend to turn on each other and peck each other’s feathers out instead. Often the birds have the front third of their beak cut off when they are a day or two old to prevent severe damage being done during feather pecking. The beak tip is apparently well supplied with blood vessels and nerve endings and the cutting of it with a hot metal guillotine has been shown to cause both immediate and enduring pain (D uncan et al. 1989; Gentle et al. 1982). Up to 30% of battery hens suffer broken bones when being removed from their cages at end of lay and during transportation to the slaughterhouse (Gregory and Wilkins 1989). The lack of exercise and the constant demand for calcium for egg production undoubtedly combine to cause bone fragility and susceptibility to breakage. H ens have a strong preference for laying their eggs in a nest and are highly motivated to perform nesting behaviour (S VC 1996). F rustration of nesting is the most severe behavioural problem of hens in battery cages (A ppleby 1992). Research shows that hens will ‘work’ harder to gain access to a nest box prior to laying than they will work to get to food, even after several hours’ food deprivation. (C ooper and A ppleby 1996, 2003). Battery cages do not provide nests. In 1999 the EU voted to ban these barren battery cages by 2012. A rearguard action is being fought by the egg industry to postpone that ban for several years. Even after it comes into effect, so-called ‘enriched’ cages, which offer a token nest box and marginally more floor space, will be allowed. Battery cages are widely used across the globe and an increasing number of hens are being incarcerated in them. Fattening pigs Pigs being reared for meat are often kept in very crowded pens. Frequently no bedding material is provided on the concrete floor which slopes towards a slatted drainage area. T hese highly inquisitive rooting animals are frustrated and often proceed to bite each other’s tails, presumably out of boredom. If tails get bitten badly, antibiotics may be needed and if they are not used, infection can set in and travel up the spine causing abscesses. To prevent this, pigs are often routinely tail docked in infancy, usually without anaesthesia or analgesia. O nce again the animal is mutilated physically in order to fit in with a system of deprivation and frustration of natural behaviour. When a

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more stimulating environment is provided with bedding material and sometimes additional ‘toys’, or when the pigs are kept outdoors free-range, the tendency to tail bite evaporates (Arey and Brooke 2006, Ch. 11). Conclusion Modern farming has failed to take account of the welfare of the animals themselves. It has failed to recognize that each animal is an individual sentient being – even though the EU adopted a legally binding Protocol to that effect in 1997 (T reaty of A msterdam 1997). S elective breeding has resulted in the use of genotypes or phenotypes which may result in a short burst of productivity or high yield, but are unsustainable for the animals’ own health and welfare and make longevity impossible. Two obvious examples are chickens with painful legs and cows with unwieldy bodies and high rates of lameness and mastitis. W hilst it could be argued that these animals are only required to live for a few weeks, months or years, there is surely something deeply unethical about breeding animals who are unable to live out their natural lifespan – even in the most benign conditions. W e have now bred farm animals whose own bodies may be their worst enemies. Confinement and/or overcrowding leads to lack of exercise, often weakening bones and muscles in the process. T hese environments are so far removed from the animals’ ‘natural’ habitat, that not only is movement restricted, but psychological and social well being are likely to be impossible. Sometimes the resulting aberrant behaviour – like tail-biting in pigs – is dealt with by mutilating the animals’ bodies. Industrial animal farming frustrates inherited behaviour, such as maternal instinct. It denies young animals opportunities for exploratory ‘play’ behaviour. It keeps animals in isolation, away from their peers, or in such close proximity to them that the animals are unable to establish normal group sizes. A s our appreciation of the mental and emotional capacities of farm animals develops, and their intelligence and sentience are realized, such farming systems look to be not modern at all, but Cartesian, out-dated and inherently cruel. If we accept the range of new evidence on the sentience, the emotions and the intelligence of farm animals, then we can start to devise farming systems that are truly modern, that take account of the animals’ physiological, behavioural, environmental and social needs. What would this kind of ‘post-modern’ farming look like? S elective breeding for faster growth and high yields would be abandoned in favour of breeding dual-purpose animals such as cattle providing both milk and meat in reduced quantities. A nimals would be allowed free movement and adequate space, which would not only encourage healthy bone and muscular development but would reduce the likelihood of anti-social or stereotypic behaviour. Group sizes would be reduced to resemble natural family or peer groupings. O utdoor

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access in clement weather would be compulsory and indoor environments would be spacious and incorporate environmental enrichment and comfortable bedding. Being modern has come to mean being technologically advanced, fastthroughput, resource-efficient and of course profitable. Perhaps the truth is that so-called modern farming of this kind has failed society on virtually every count. W hat farming needs now is a regeneration based on strong ethical values, values of compassion for other sentient beings and of concern for the environment and for the health of consumers. This kind of farming will be able to restore dignity and right livelihood values to farmers themselves and make farming a more desirable way of living. This kind of farming will promote high animal welfare standards, will aim for whole-farm self-sufficiency, will seek green solutions for its emissions and will produce animal products in possibly smaller quantities, but which will earn more per unit, as consumers learn to revalue the foods they eat. C onsumer and government buy-in to such a vision for farming will be essential. T he question now is not whether such post-modern farming can replace our out-dated and damaging current practices, but when? References Adcock M. and Finelli M. (1995) The Dairy Cow: America’s ‘Foster Mother’. A reprint from HSUS N ews. W inter 1995. A ppleby M .C ., H ughes B.O . and Elson H .A . (1992) Poultry Production Systems – Behaviour, Management and Welfare (W allingford: CA B International). Arey D. and Brooke P. (2006) Animal welfare aspects of Good Agricultural Practice: Pig Production. C ompassion in W orld F arming. Bradley A .J. et al. (2007) ������������������������������������������������������������� ‘S urvey of the incidence and aetiology of mastitis on dairy farms in England and W ales’. Veterinary Record 160:8, 253. Broom D .M . and F raser A .F . (2007) Domestic Animal Behaviour and Welfare. 4th Edition. (W allingford: CA BI Publishing), C h. 28. C obb-Vantress, 1.10.07. C obb 700 broiler sets new standard for high yield. Press release. . C ooper J.J. and A ppleby M .C . (1996) ‘D emand for nest boxes in laying hens’. Behavioural Processes 36, 171–182. C ooper J.J. and A ppleby M .C . (2003) ‘T he value of environmental resources to domestic hens: a comparison of the work-rate for food and for nests as a function of time’. Animal Welfare 12, 39–52. C orr S .A ., Gentle M .J., M cC orquodale C .C . and Bennett D . (2003) ‘T he effect of morphology on walking ability in the modern broiler: a gait analysis study’. Animal Welfare 12, 159–171. Cruickshank G. (2003) ‘Cobb focuses on bottom line performance’. Poultry World July, p. 22.

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Dawkins M.S. and Hardie S. (1989) ‘Space needs of laying hens’. British Poultry Science 30, 413–416. D epartment of Environment, F ood and R ural A ffairs (D efra). (2007) Agriculture in the United Kingdom 2006. D efra S tatistical D epartment, C h 5. . D epartment of Environment, F ood and R ural A ffairs (D efra). (2004) Economics of Milk Production – E&W 2002/2003. D efra S tatistical D epartment. . D uncan I.J.H ., S lee G.S ., S eawright E. and Breward J. (1989) ‘Behavioural consequences of partial beak amputation (beak trimming) in poultry’. British Poultry Science 30, 479–488. F ood and A griculture O rganization of the U nited N ations (FAO ). S tatistical Databases. Agriculture: Prodstat. <www.fao.org>. Accessed 10.12.07. Gentle M.J., Hughes B.O. and Hubrecht R.C. (1982) ‘The effect of beak-trimming on food intake, feeding behaviour and body weight in adult hens’. Applied Animal Ethology 8, 147–159. Julian, R .J. (2000) ‘Physiological, management and environmental triggers of the ascites syndrome: a review’. Avian Pathology 29:6, 519–527. M axwell, M .H . (1995) ‘A genetic control for ascites’. Poultry International, D ecember 1995, 62–65. M cKay J.C ., Barton N .F ., Koerhuis A .N .M . and M cA dam J. (2000) The challenge of genetic change in the broiler chicken. Proceedings of the BSAS conference, ‘T he challenge of genetic change in animal production,’ 1999, British S ociety of A nimal S cience. R (C ompassion in W orld F arming Limited) v S ecretary of S tate for Environment, F ood and R ural A ffairs [2004] EWCA C iv 1009. S avory C .J., M aros K. and R utter S .M . (1993) ‘A ssessment of hunger in growing broiler breeders in relation to a commercial restricted feeding programme’. Animal Welfare 2, 131–152. Scientific Committee on Animal Health and Animal Welfare (SCAHAW). (2001) The Welfare of Cattle Kept for Beef Production. European C ommission, H ealth and C onsumer Protection D irectorate-General, A pril 2001. Scientific Committee on Animal Health and Animal Welfare (SCAHAW). (2000) The Welfare of Chickens Kept for Meat Production (Broilers). European C ommission, H ealth and C onsumer Protection D irectorate-General, M arch 2000. Scientific Veterinary Committee (SVC). (1996) Report of the Scientific Veterinary Committee, Animal Welfare Section on the Welfare of Laying Hens. Brussels, O ctober 1996. S teinfeld H ., Gerber P., W assenaar T ., C astel V., R osales M . and de H aan, C . (2006) Livestock’s Long Shadow: environmental issues and options. (R ome: F ood and A griculture O rganization of the U nited N ations), Executive S ummary, p. xxi < .

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S tolba A . and W ood-Gush, D .G.M . (1989) ‘T he behaviour of pigs in a semi-natural environment’. Animal Production 48: 419–425. National Turkey Federation Convention. ‘Nicholas News’ 43, No. 1. . T he T reaty of A msterdam A mending the T reaty on European U nion, the T reaties Establishing the European C ommunities and R elated A cts. Protocol on Protection and W elfare of A nimals. Official Journal C 340, 10 N ovember 1997. . U niversity of Bristol (2006) Leg Health and Welfare in Commercial Broiler Production. R eport for D epartment for Environment, F ood and R ural A ffairs (D efra), p. 2. W ebster J. (2005) Animal Welfare: Limping towards Eden. (Oxford: Blackwell Publishing), C h. 6. W ebster J. (1987) Understanding the Dairy Cow. (O xford: BS P Professional Books). W orld C ancer R esearch F und/A merican Institute for C ancer R esearch (2007) Food, Nutrition, Physical Activity, and the Prevention of Cancer: a global perspective, Chapter 12, p. 380 <www.dietandcancerreport.org>.

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C hapter 3

A nimal Integrity in M odern F arming Kate M illar and D avid M orton

Introduction The aim of this chapter is to explore current thinking regarding the notion of animal integrity in the context of society’s concerns for farmed animals and to examine how current animal farming methods may respect or disrespect this concept. In addition to exploring how current farming methods impact on the integrity of farm animals, it is valuable to highlight briefly how emerging animal biotechnologies, such as cloning and transgenic techniques, affect integrity and how this may influence views of the acceptability of these technologies. Ethical acceptability may, in turn, determine the future of animal production systems. Exploring Concepts of Animal Integrity W hen examining our ethical responsibilities to farm animals, the assessment of an animal’s welfare has played a significant role in determining what society defines as acceptable in terms of the way we breed, raise and slaughter farm animals. H owever, other concepts have been important in shaping society’s concerns and defining acceptable practices on farms. One of these concepts is the notion of animal integrity and although it has implicitly played a role in societal discussions of human–animal interactions for a number of decades, explicit discussion of the concept of integrity has only recently become prominent as a result of the debate of the ethical acceptability of the creation and use of genetically modified (GM) animals as well as cloned animals in farm animal production. Before discussing how modern farming may respect or disrespect animal integrity it is important to explore current understanding of ‘integrity’. M any philosophers and welfarists have attempted to define the concept of animal integrity and as a result a number of potentially conflicting meanings have emerged. In its  ���������������������������������������������������������������������������������� F armed animals may be different to farm animals which could include the sheepdog, but for ease of reading ‘farm’ animals will be used to denote those animals that are kept for food production.  ������������������������������������������������� F or example thorough the writings of: T om R egan, The Case for Animal Rights. (London: R outledge 1985); Bernard R ollin. The Unheeded Cry: Animal Consciousness, Animal Pain, and Science (O xford: O xford U niversity Press 1989), and so on.

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simplest form the term animal integrity has been characterized as the ‘intact’ nature or ‘wholeness’ of an animal. R utgers and H eegar (1999, p. 45) translated the term as: ‘the wholeness and completeness of the animal and the species-specific balance of the creature, as well as the animal’s capacity to maintain itself independently in an environment suitable to the species’. This classical definition, as de Vries (2006) referred to it, elaborates three important dimensions with integrity not only referring to the animal as an individual but, as Vorstenbosch (1993) originally proposed, the concept can be sub-categorized into ‘subject’ levels. In this regard, respect for animal integrity can refer to respect for the ‘wholeness’ of: (i) the genome; (ii) an individual animal; and (iii) a species or an ecosystem (D e Vries 2006). T he above translations of the term do not convey the complexity of meanings for many philosophers as these definitions can miss the essence of their concerns. ‘R espect for animal integrity’ has become a point of political tension in the current assessment of our responsibilities towards animals, for example, the ethical acceptability of the application of genetic engineering to animals. A s such, a number of interpretations of the concept also encapsulate or are linked with a notion of ‘inherent worth’ or ‘intrinsic value’ where animals have worth beyond any instrumental value or utility, for example, as food or companions (M epham 2000; Hauskeller 2007). T he notion of ‘telos’ is an important concept in the wider discussion of integrity, particularly genetic integrity, and by definition these two terms have similarities in meaning if not in etymology. C lassically, telos is defined as the innate purpose or goal of an individual or being. R ollin (1999) proposed a translation of this A ristotelian concept for animals, with telos specified as the ‘… unique, evolutionarily determined, genetically encoded, environmentally shaped set of needs and interests which characterise the anim…’ Rollin’s concept of telos focuses on the notion of needs and interests and, as such, the telos of a genetically altered animal is only infringed if any modification impacts on the animal’s ability to fulfil these needs or interests (Rollin 1995). This understanding of telos focuses on the ‘plight of the creature’ so that the ethical acceptability of a proposed action is assessed on whether it reduces suffering or it furthers its interests (for example, positive experiences). A s R ollin has described this notion of telos, which can be linked to an understanding of integrity, assessing whether it is respected or infringed is largely interpreted by the way an intervention (for example, genetic modification, tail docking, and so on) impacts on animal well being. For example examining whether a system respects an ‘animal’s capacity to maintain itself independently in an environment suitable to the species’ would likely involve a welfare assessment (R utgers and H eegar 1999). H owever, for many philosophers the concept of integrity represents a deontological dimension of humans’ ethical responsibilities to animals that goes beyond classical animal welfare concerns (Vorstenbosch 1993). T he utilitarian focus on maximizing ‘interests’, as proposed by R ollin, is in many ways contrary to the understanding of ‘respect for integrity’ as articulated

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by Vostenbosch (1993) and others (H eegar and Brom 2001) and the positions of other proponents of the concept have highlighted the significance of this concept for understanding the ethical acceptability of genetically, or otherwise, modifying animals (Verhoog 1992, 2003). T hese tensions are apparent when we consider how to apply this concept in practice. Lamb’s recent interpretation of integrity, drawing on Hauskeller’s (2007) valuable work, highlights the conflict that arises from any human intervention in animal lives: In the most general sense ‘integrity’ is a concept that can be applied to anything that can be damaged, physically, mentally, morally, or spiritually. A thing can only be said to retain its integrity as long as it is entire, unharmed, or unspoilt, and remains in possession of its powers, or is as it should be. C learly the concept of integrity refers to an ideal condition, with a normative content suggesting that any departure from this state must be for the worse – an indication of deterioration. ‘A thing that has integrity is as good as it can be and cannot be improved’ (Hauskeller 2007, 30). Integrity should not be violated, and any action that causes loss of integrity requires justification.

Therefore, one of the key aspects to consider is whether all interventions (for example, vaccination, restricting self-selection of sexual partners, and so on), including those that may not cause harm per se, always infringe integrity. A pplying the definitions articulated by Vorstenbosch (1993) and Rutgers and Heegar (1999) would also mean that many current practices on farms would infringe animal integrity. Vorstenbosch’s definition implies that respect for integrity is an absolute, such as a right as linked to Regan’s right-based position where animal’s are ‘subjects of a life’ (R egan 1985). F or example, veterinary procedures, such as surgical interventions, which are carried out for the benefit of the animal alone would infringe animal integrity. H owever, not carrying out the procedure could negatively impact on the long-term welfare of the animal. T his form of intervention might be acceptable if respect for integrity is deemed prima facie, that is, it is an incremental concept where infringement is assessed by degree and by justification. This illustrates the potential conflict between respecting welfare and integrity and the pivotal role that an ‘appeal to appropriate justification’ may play in decisionmaking processes on farm. The discourse surrounding the definition of integrity naturally colours the application of the concept in practice. W ithin this chapter, later sections will draw on the approach of R utgers and H eegar, and R ollin as a way of exploring in more depth our understanding of integrity and how this concept can inform our understanding of our ethical responsibilities to farm animals.  ������������������������������������������������������������������ Personal C ommunication – D avid Lamb, Birmingham U niversity, 2008.  ������������������������������������������������������������������������������������ For extended discussion of integrity, among others see: Hauskeller (2007); de Vries (2006); H eegar and Brom (2001) and M epham (2000).

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Animal Integrity and the Law F arm animal welfare and the wider ethical treatment of animals have been prominent areas of political debate for a number of decades and no more so than in Europe. F or example, an annex to the T reaty of A msterdam (1997) recognizes that animals are ‘sentient beings’ and requires the C ommission and M ember S tates to take the sentience of animals into consideration whenever legislation is being drafted (that is, to recognize that animals can suffer and that their welfare should therefore be a prime concern). M ore recently, with the possibility of incorporating transgenic techniques and cloning into animal breeding programmes, there has been a heightened societal discussion of our responsibilities to farm animals. It is claimed that in the last ten years there has been a significant global shift in our social ethic towards animals (R ollin 2003), that is to say in the way society as a whole has formally responded to our changing understanding of our responsibilities to animals, and reflected in terms of legislative changes. It is notable that this shift has not only occurred at an EU level but has also resulted in the introduction of new animal welfare legislation at national level. T he concept of animal integrity can be seen to be applied both implicitly and explicitly within these new legal instruments. Legislation that illustrates the changing status of animals and what appears to be a concerted effort to improve the lives of animals has been recently introduced in the U K. T he A nimal W elfare A ct (AWA ) 2006 requires owners of animals to demonstrate a duty of care, to promote positive welfare and to prevent harm, not just to refrain from causing harm. Another key change in UK animal welfare law is that animal protection officers are able to prosecute owners when they believe a harm is likely to occur, and not only when it has occurred. Although the new legislation does not explicitly refer to respect for animal integrity, clauses within the act that specify acceptable and unacceptable actions in relation to the care of animals appear to go beyond traditional animal welfare assessments. F or example tail docking in dogs is significantly breed restricted in England and Wales, and specifically banned for all breeds in the Scottish application of the AWA. Caring for an animal requires respect for more than just welfare, it may imply a respect (which informs actions in exercising a duty of care) for an animal as ‘an end in themselves rather than a means to an end’.

 ��������������������������������������������������������������������������������� The Treaty of Amsterdam. Protocol on Protection and Welfare of Animals. Official Journal C 340, 10 November 1997; The Treaty of Lisbon. Article 6b. Official Journal C 306, 17 D ecember 2007.  ����������������������������������������������������������������������������������� MAFF . ‘Banner R eport: R eport of the C ommittee to consider the ethical implications of the emerging technologies in the breeding of farm animals’. HMSO (1995) IS BN 0 11 242965 3; European Group on Ethics. O pinion nr. 23: Ethical aspects of animal cloning for food supply. 16 January 2008, .

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A number of countries have also developed legal instruments or have made amendments to their existing legislation in an attempt to explicitly include ‘respect for animal integrity’ within their animal law(s). The first national legislator to incorporate a clause requiring consideration of a notion of animal integrity occurred in S witzerland in 2000. T his amendment to the S wiss C onstitution (S wiss Legislation and D ignity of C reation – W ürde D er Kreatur and the F ederal C onstitution of S witzerland’s, A rticle 120 [2000] Gene T echnology in the N onH uman F ield) was initiated in 1992 by the S wiss Parliament as a result of discussion on dignity of animals. T his legislation states that when humans use animals for their utility, not only should the well being of animal be considered but the underlying dignity should not be infringed unless clear and full justification can be given. The prominent component of Article 120 is the requirement to take into consideration the dignity of living beings, specified as the ‘Wurde der Kreatur’. The article was evoked as a result of Swiss public dialogue regarding genetically modified (GM) animals, but this notion of dignity must be applied to all aspects of the human use of animals, from farm animals to companion animals. In part, the application of the ‘W urde der Kreatur’ has resulted in detailed recommendations on animal care, such as bans on keeping single companion animals and specific mutilations. There has also been significant discussion of ‘animal integrity’ in The N etherlands, with the D utch A nimal H ealth and W elfare A ct, 1992 requesting consideration of animal integrity. More specifically, the National Committee on A nimal Biotechnology requires animal biotechnological applications to be accessed against whether they violate animal integrity, among a number of other criteria (D e Vries 2006). T he application of this concept, as in the S wiss legislation, is not absolute as infringements of animal integrity may be permitted, if clear justification is given. This prima facie application of the concept is often referred to as the D utch ‘no, unless’ policy. S everal national advisory bodies across Europe have also considered this concept in a policy-oriented rather than a regulatory capacity. A dvisory bodies, such as the U K Banner C ommittee, were established to examine the application of emerging biotechnologies with a remit to review the potential ethical issues raised. In their R eport although the Banner C ommittee noted no objections to the use of genetic modification in animals per se, they did identify that some actions may be objectionable as they could be thought to ‘constitute an attack on the animal’s essential nature’. S imilarly, the F arm A nimal W elfare C ouncil noted that a procedure may be considered objectionable for any one of the following reasons: (i) if it inflicts very severe or lasting pain on the animals concerned; or (ii) if it  ���������������������������������������������������������������������������������� MAFF ‘Banner R eport: R eport of the C ommittee to C onsider the Ethical Implications of the Emerging T echnologies in the Breeding of F arm A nimals’.  ������������������������������������������������������������������������������� UK Farm Animal Welfare Council’s definition of farming and research procedures that may give rise to concern and deserve closer scrutiny. F arm A nimal W elfare C ouncil ‘S econd R eport on Priorities for R esearch and D evelopment in F arm A nimal W elfare’, MAFF , HMSO (1993, London, U K).

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involves an unacceptable violation of the integrity of a living being. In a later report (FAWC 1993) they noted a procedure may be considered objectionable for any one of the following reasons: (i) if it is associated with the mixing of kinds of animals to an extent which is unacceptable; and (ii) if it generates living beings whose sentience has been reduced to the extent they may be considered to be mere instruments or artefacts. A s can be seen from the application of the concept of animal integrity even within the regulatory and advisory contexts discussed above, there is still a considerable level of ambiguity. However one looks at it the key procedural question that arises from examining these regulatory approaches is whether these legal instruments are fit for purpose or whether existing legislation, that responds to specific ‘violations’, are of sufficient scope to ensure that animal integrity is respected. With an ambiguity of definition, does legislation such as the recent animal welfare legislation introduced in the U K, AWA 2006, implicitly protect integrity in a more appropriate or effective way than legislation that explicitly requires consideration of animal integrity, such as the S wiss ‘W ürde D er Kreatur’ legislation? It is clear that further analysis is needed. Animal Integrity and Animal Welfare Codes W hen examining how farming systems do or should respect the integrity of an individual animal it is valuable to examine the current codes of practice that guide actions on farms. O ne of the most widely adopted approaches is the F ive F reedoms. T he Brambell C ommittee is generally credited with developing the F ive F reedoms, but in fact they set down its foundations and the code itself came later as a result of deliberations of the U K F arm A nimal W elfare C ouncil.10 T hey comprise: 1. Freedom from hunger and thirst, by ready access to water and a diet to maintain health and vigour. 2. Freedom from discomfort, by providing an appropriate environment. 3. Freedom from pain, injury and disease, by prevention or rapid diagnosis and treatment. 4. Freedom to express normal behaviour, by providing sufficient space, proper facilities and appropriate company of the animal’s own kind; and 5. Freedom from fear and distress, by ensuring conditions and treatment, which avoid mental suffering.

 �������������������������������������������������������������������������������� MAFF , ‘R eport of the T echnical C ommittee to Enquire into the W elfare of A nimals kept under Intensive Livestock Husbandry Systems’. Chairman: Professor F.W. Rogers Brambell. C mnd. 2836, D ecember 1965. HMSO (London, 1965). (R eferred to hereafter as the Brambell R eport). 10  <����������������� www.fawc.org.uk>.

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By providing these freedoms there is an inherent notion of respect for the integrity of farmed animals. H owever, there are many exceptions in practice to their provision and so they are seen by many as being aspirations rather than absolute requirements. T here is probably not a farming system in existence that can be said to meet all these freedoms for all of an animal’s life, although most systems meet some of them for some of the time, for example, extensive systems may provide for the 4th F reedom, more than intensive systems, but the converse is often true for the 3rd and 5th F reedom. Disrespect for Animal Integrity on Farms D espite the aims of various legal instruments and codes of good practice to provide freedoms and resources for animals, as well as to reduce harms, surgical operations, or mutilations as they are sometimes called, are probably one of the commonest ways in which animal integrity is not respected. T hese operations are inherent in many farming systems (see T able 3.1) and, indeed, such systems would not be able to function without animals being surgically altered in some way or another. T he reasons for carrying out these procedures include: (i) to reduce the effects of inter-animal aggression; (ii) to remove tainting of meat as animals may be slaughtered after sexual maturity; and (iii) to facilitate husbandry and transport. Table 3.1 Animal C alves

Piglets

Lambs Poultry (laying hens kept in cages)

Some examples of surgical operations11 Operation C astration R emoval of supernumerary teats R emoval of horn buds

Justification Prevent aggression, mis-mating and taint Prevent growth and ease milking

Prevention of wounding resulting from aggression, ease of transport T ooth clipping Prevent damage to sow’s teats and udder during suckling R emoval of part of the T o minimize damage caused by tail-biting tail (docking) C astration T o reduce aggression and meat taint C astration Prevent aggression, mis-mating and taint Docking To prevent fly strike De-beaking T o reduce the effects of aggression

11 ������������������������������������������������������������������������������ MAFF (now DEFRA) have produced a booklet on the legislation controlling these mutilations. S ummary of the Law R elating to F arm A nimal W elfare 1995 PB 2531. MAFF , HMSO (London, 1995).

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S ome operations continue as a matter of tradition without there being any real need, in other cases they could be modified to eliminate the need, for example, only castrate those animals that will live beyond sexual maturity. F urthermore within current systems, animal integrity could instantly be better respected if less pain, discomfort and suffering were caused by providing an anaesthetic for these operations as well as longer term pain relief (violation of 2nd and 3rd F reedoms). Not providing adequate space and resources for animals to fulfil their mental needs and not, therefore, giving them the opportunity to carry out their natural or normal12 behaviours disrespects their mental, as opposed to their physical, integrity. In some circumstances the inability to fulfil some instinctive ‘hard-wired’ mental drives such as migration in captive wild birds, nest building in sows, dustbathing in chickens, can result in animals developing stereotypic behaviours and reflects a mental illness sometimes affecting an animal’s long-term survival (for example, through self-mutilation). H owever, in farming, animals have a limited productive lifespan and their death may be tailored to their ability to survive only for that period and it may also be determined by economic factors and practical applications. T he breeding of farm animals considering only animal productivity, for example, weight gain, feed conversion, milk or egg production, reduces animals to a form of ‘physiological machine’ to be fed and ‘milked’ in some way or another. In many cases, genetic selection for such traits has been done to the exclusion of their mental needs, and sometimes their physical needs, and so raises welfare considerations. S uch focused breeding strategies can lead to increased disease susceptibility (for example, mastitis, lameness and metabolic disorders in dairy cows) or an abnormal conformation that can improve productivity. F or example, in the case of Belgian Blue cattle a defective double muscling gene has been selected as its increases meat production to the exclusion of the welfare of the dams that have to be regularly C aesarean sectioned (W ebster 2002). In other farmed species, such as rabbits, does are bred to the point where they can no longer cope and they either die, or develop such serious diseases they are culled at a very young age, long before the end of their natural lifespan. C onsidering the notion of integrity may also require the assessment of production methods that represent a ‘significant’ instrumentalization of animals, for example: (i) production of featherless chickens, (ii) transgenic animals with increased growth rates, (iii) use of bovine somatotrophin to increase milk yield in older cows coming to the end of their natural lactation, (iv) killing bull calves at birth because they are uneconomic to rear, (v) starving broiler breeders to prevent them gaining weight if fed to appetite so they can be bred.

12 ������������������������������ A distinction is made between natural behaviours – those that are observed in antecedents, and those behaviours which an animal could normally carry out given the confines of a farming environment. It should be noted that not all natural behaviours promote good welfare, for example, predation.

Animal Integrity in Modern Farming

27

According to the definitions of both Rutgers and Heegar, and Rollin, and even when applying a prima facie approach to ‘respect for integrity’, the majority of these routine breeding and farming practices would represent a significant infringement of integrity. T herefore the questions that arise include: ‘H ow can we enhance respect for integrity and more specifically on farms, what ought we to do?’ What Should be Done, If Anything? T he Banner R eport13 set out three principles that the C ommittee proposed ‘ought to be observed’ when considering the ethical implications of the new technologies in the breeding of farm animals, but they can also be applied to old farming technologies. The first is that some things should never be done at all because they can never be justified or because they are so abusive (for example, removing the tongue of calves to prevent them sucking themselves or others). The second is that some things can be done providing there is a strong justification (for example, docking of tails and castration). And, thirdly, if something is permissible then it should be done in the most humane manner (that is, with suitable pain relief). These principles have also been applied in a paper on docking puppies (Morton 1992) and they emphasize that respect for integrity is an important concept that should inform our reflection on ‘duties’ and should not be taken lightly. According to the strict application of a classical definition of integrity the majority, if not all types, of biotechnological intervention would represent an infringement of animal integrity. In terms of welfare, biotechnologies such as the application of cloning or artificial insemination, may be forces for promoting good (for example, respecting needs and interests), as well as poor welfare particularly during the early stages of technical development. T here are considerable harms being incurred from cloning due to a range of abnormal developments resulting in large offspring that result in pain and suffering to both dam and calf.14 N otably, the same ‘side-effects’ do not appear to be true for cloned pigs. If these ‘technical’ problems can be resolved there may be the opportunity to clone only those animals with good health and welfare while maintaining productivity. H owever, the drive to enhance productivity may outweigh harms economically and hence welfare and integrity will not be respected in a commercial setting unless some prima facie rules are put in place. T he same issues also apply to the potential application of transgenic techniques. In addition, when examining the potential use of transgenic 13 ���������������������������������������������������������������������������������� MAFF ‘Banner R eport: R eport of the C ommittee to consider the ethical implications of the emerging technologies in the breeding of farm animals’. 14 �������������������������������������������������������������������������� European Food Safety Authority (EFSA) ‘Scientific Opinion on Food Safety, A nimal H ealth and W elfare and Environmental Impact of A nimals derived from C loning by S omatic C ell N ucleus T ransfer (SCNT ) and their O ffspring and Products O btained from those Animals’. DRAFT Scientific Opinion of the Scientific Committee; EFSA-Q-2007092. 19 D ecember 2007 (Pisa, 2007).

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Ethics, Law and Society: Volume IV

animals in farming, some have claimed that it may be possible to produce and farm these animals without impacting on welfare, although genetic integrity will be infringed (due to gene insertion or deletion). This leads us to again highlight the essence of the philosophical conflict that surrounds the interpretation of integrity for farmed animals: D o harms always infringe integrity, or can a loss of respect for integrity be balanced by harms that may do good, for example, vaccination, docking to prevent fly-strike? Is integrity incremental or is it an all or nothing concept, that is, can it be harmed to a degree or is it equivalent to a ‘right’? W ithin a farming context, when attempting to answer this, one might reason that it is disrespecting integrity by not protecting the welfare of animals, or exposing some of them to inevitable disease, being reasonably sure that a greater harm would arise. In addition, how would one determine major and minor infringements of integrity? C ould a major infringement come from a minimum harm? In other words is it the outcome or is it the process that matters, or both? H ow can we judge in practice? S ome of these questions are fundamental to the overarching debate of the ethical standing of animals, however in terms of respect for animal integrity, stakeholders (for example, consumers, farmers, veterinarians, and so on) will respond to these questions differently, as a result of their understanding of the concept as previously discussed. Concluding Remarks Ethically an important human aim is to give animals the resources to have a life lived well, or a life worth living, even a good life.15 It is proposed that the legal minimum should be a life worth living where their integrity is respected and where animals’ physical and mental needs are met. T hey would not be subjected to avoidable harms and only experience minimal suffering. A n aspiration would also be that they should experience a good life where many of their wants are met, they have a state of positive welfare and not just the absence of poor welfare. T o put it another way, their quality of life is so enhanced that any necessary harms are easily outweighed by feelings of positive welfare in both intensity and duration for any one animal. Stock-keepers, such as farmers, play an important role in facilitating the provision of a good animal life. T his implies a form of ‘contract’ (Larrère and Larrère 2000) to respect integrity between humans and animals where stockkeepers respect the animals they use, and treat them fairly in accordance with their needs and wants, that is, to give them a good quality of life. Farm stock produce ‘goods’ for the farmer who in return owes them a duty of care through 15 ����������������������������������������������������������������������������� F or example, Peter S andøe and S tine B. C hristiansen. ‘Ethics of A nimal U se’. (Blackwell, London, 2008); FAWC papers by S.R. Clarke (1997), M. Reiss (2006), C. W athes (2007) and a further FAWC R eport will be published in 2009, please refer to <www. fawc.org.uk>.

Animal Integrity in Modern Farming

29

the provision of shelter, feed, treatment and disease control, and so on. H owever, this contract can be broken if animals are seen not to matter, particularly if they are viewed as ‘machines’, to be fed and plundered. This lack of human respect for animal integrity results not only from individual choices, but more commonly is an inherent part of production systems that are structured according to economic drivers, where stock-keepers are required to instrumentalize animals in order to function commercially. T his not only has negative implications for human–animal interactions, but humans are also starting to realize that not respecting animals has a knock-on effect for how humans treat other humans. What may result from greater reflection on this concept of integrity is a growing awareness that many traditional farm methods significantly infringe the majority, if not all, philosophical interruptions of animal integrity. T his in turn implies that if respect for animal integrity plays a significant role in determining what society defines as acceptable human–animal interactions, expressed either implicitly or explicitly through legislation and codes of practice, notable changes in some ‘common’ farming practices are required. References D e Vries, R . (2006) ‘Genetic engineering and the integrity of animals’. Journal of Agricultural and Environmental Ethics 19, 469–493. FAWC (1998) Report on the Implications of Cloning for the Welfare of Farmed Livestock (London: HMSO ). Hauskeller, M. (2007) Biotechnology and the Integrity of Life: Taking Public Fears Seriously (A ldershot: A shgate). H eeger, R . and Brom, F . (2001) ‘Intrinsic value and direct duties: from animal ethics towards environmental ethics’. Journal of Agricultural and Environmental Ethics 14, 241–252. Larrère, C . and Larrère, R . (2000) ‘A nimal rearing as a contract?’. Journal of Agricultural and Environmental Ethics 12, 51–58. M epham, B. (2000)‘“W ürde D er Kreatur” and the C ommon M orality’. Journal of Agricultural and Environmental Ethics 13, 65–78. Morton, D.B. (1992) ‘Docking of dogs: practical and ethical aspects’. Veterinary Record 131, 301–306. R egan, T . (1985) The Case for Animal Rights (London: R outledge). R ollin, B. (1989) The Unheeded Cry: Animal Consciousness, Animal Pain, and Science (O xford: O xford U niversity Press). R ollin, B. (1995) The Frankenstein Syndrome Ethical and Social Issues in the Genetic Engineering of Animals (C ambridge: C ambridge U niversity Press). R ollin, B. (2003) ‘Ethics and species integrity’. The American Journal of Bioethics 3:3, 15–17. R utgers, B. and H eeger, R . (1999) ‘Inherent worth and respect for animal integrity’, in M arcel D ol, M artje F entener van Vlissingen, S oemini Kasanmoentalib,

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Thijs Visser and Hub Zwart (eds), Recognizing the Intrinsic Value of Nature (A ssen: Van Gorcum), 41–53. Verhoog, H . (1992) ‘T he concept of intrinsic value and transgenic animals’. Journal of Agricultural and Environmental Ethics 5, 147–160. Verhoog, H. (2003) ‘Naturalness and the genetic modification of animals’. Trends in Biotechnology 21, 294–298. Vorstenbosch, J.M.G. (1993) ‘The concept of integrity its significance for the ethical discussion on biotechnology and animals’. Livestock Production Science 36, 109–112. W ebster, J. (2002) ‘R endering unto C aesar: welfare problems in Belgian Blue cattle. The Veterinary Journal 163, 228–229.

C hapter 4

CA P R eforms: Effects on A griculture and Environment F ranz S inabell and Erwin S chmid

Introduction T he implementation of the C ommon A gricultural Policy (CA P) has been one of the core responsibilities of the European U nion (the European C ommunities before the M aastricht C ontract, respectively). A ccording to the T reaty in 1962, the objectives of the C ommon A gricultural Policy are: 1. to increase agricultural productivity by promoting technical progress and by ensuring the rational development of agricultural production and the optimum utilisation of the factors of production, in particular labour; 2. thus to ensure a fair standard of living for the agricultural community, in particular by increasing the individual earnings of persons engaged in agriculture; 3. to stabilise markets; 4. to assure the availability of supplies; 5. to ensure that supplies reach consumers at reasonable prices.

The history of the CAP is a history of ever ongoing reforms (Ackrill 2000) and a continuous struggle to make progress in attaining the policy goals. The policy instruments had remained untouched during the first three decades of the CAP, except the introduction of milk quotas in 1984. In the 1980s, it became evident that the various mechanisms resulted in commodity surpluses, ever growing budgetary burden, and surmounting social costs (Buckwell 1982). A turning point in the operation of the CA P was introduced by C ommissionar M cS harry, who proposed a reform in 1992. W hen the reform was implemented in 1994, the dogma to reach income goals by high producer prices had been overcome. T he reform introduced a set-aside scheme in the crop production sector, which allowed producers to curtail the crop land and to gain control of surpluses in some sectors. T hree accompanying measures including an early retirement scheme, an agri-environment scheme, and a scheme for afforestation were part of the reform. T he objective of the reform was to better address the goals listed above by a set of fine-tuned instruments, which took two more reforms to make the progress needed. T he 1992 CA P reform introduced accompanying measures (CR 2078-

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1992), which were directed towards limiting the adverse effects of the reform of market regimes (price drops and introduction of crops and livestock premiums). Since then, funds allocated for such measures have taken up an ever increasing part of farm payments. Political agreement on the A genda 2000 was reached at the Berlin European C ouncil on 26 M arch 1999. T he reform was launched in the form of 20 legislative texts with agriculture being among the priority fields. Emphasis was put on the continuation of the M cS harry reform with a view to stimulating European competitiveness and taking greater account of environmental and food quality considerations. The reform acknowledged the multifunctional role of the European model of farming. A t the instrumental level, the reform further reduced price supports for beef and cereals. Intervention prices for dairy products were lowered as well, but the implementation was postponed to the 2005/2006 marketing year because of the budgetary costs of the compensation of producers. The Agenda 2000 package brought about a new agenda for agriculture. It introduced the idea of an integrated rural development policy as a second pillar of the CAP. Therefore the policy addressed no longer one specific sector but a territorial entity. T his move was not integrated into the structural policies of the EU but has remained in the domain of agricultural policy. O perationally, this brought together the accompanying measures of the M cS harry reform plus compensatory allowances under the less favoured areas measure, as well as rural development measures previously financed by the FEOGA Guidance Fund, into a single Rural D evelopment R egulation. A fter the A genda 2000 reform, these measures became part of the rural development programme (CR 1257-1999), which established the tools for a ‘European model of agriculture’. This vaguely defined long-term strategy has been aiming at strengthening rural development, improving the well being of the farming community, and trying to achieve efficient and environmentally friendly farming. T he programme is a synonym for the ‘second pillar of the CA P’, the rhetorical alternative to the ‘first pillar of the CAP’ (market regimes for specific farm commodities, for example, intervention, export refunds, production quota). Measures of the ‘first pillar’ are financed solely by the EU funds. Financing of ‘second pillar’ measures is shared between M ember S tates and the EU . The CAP Reform in 2003 T he A genda 2000 agreement covered the period 2000–2006, but mandated a midterm review in 2003. In the summer of 2002, the European C ommission published the mid-term review of the A genda 2000 reform. Based on this document, a detailed proposal for a C ouncil R egulation was submitted in January 2003 in which elements for a follow-up reform were defined in detail. After a thorough discussion of reform issues between the European C ommission and agricultural ministers of the EU Member States, the Greek presidency achieved a compromise on 26 June 2003.

CAP Reforms: Effects on Agriculture and Environment

33

D ecoupling of direct payments from farm output and the reduction of administrative prices were core elements of this reform. T he goals of the reform were less output of cereals, beef and milk, to stabilize farm incomes, and a farm sector that should be more competitive. T he M id-T erm R eview (MTR ) had four main elements: 1. Decoupling – the bundling of all production-linked payments into a single farm payment (SF P). F armers get payments on the basis of their historic entitlements and are linked to land rather than production levels. The eligibility for payments is subject to cross-compliance with a variety of EU environmental, animal welfare and food safety standards. 2. Continuation of the sectoral reform process – changes to the market regimes for important commodities such as durum wheat, rice and rye. 3. M odulation – the transfer of money between CA P objectives – up to 5% of the value of the SFP to larger farmers will be transferred to rural development measures. 4. F inancial discipline mechanism – payments can be further reduced to ensure that overall CAP expenditure on market and income support remains within budgetary limits. W hile this agreement is the core of the M id-T erm R eview, further reforms were agreed in A pril 2004 with respect to a number of M editerranean products (cotton, olive oil, tobacco). The Commission pushed forward reforms of the market orders of several more commodities like sugar, vegetables and wine in the aftermath of the 2003 reform. Model simulations showed that the objectives of the reform could likely be achieved. O ne result of such changes would be a slight acceleration in the rate of structural change (owing to the fact that the demand for farm labour will further decline). In order to facilitate the gradual structural adjustment, the presidency’s compromise offered a wide scope for national modifications. Effects of the CAP reform 2003 on selected economic indicators T he O ECD publishes an international comparison of indicators of support for the agricultural sector in the annual monitoring report (Figure 4.1). The key indicators of this survey are the Producer S upport Estimate (PS E) and the estimate of the Market Price Support (MPS) element within the range of support measures: •

PS E is an indicator of the annual monetary value of gross transfers from consumers and taxpayers to support agricultural producers, measured at farm gate level. T he PS E measures support arising from policies targeted at agriculture relative to a situation without such policies, that is, when producers are subject only to general policies (including economic, social, environmental, and tax policies) of the country. T he PS E is a gross value

Ethics, Law and Society: Volume IV

34    

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Production, PSE, MPS, and the EAGGF expenditure in the EU

Source: O ECD

•

implying that the costs associated with such policies and incurred by individual producers are not deducted. It is also a nominal assistance value, that is, increased costs associated with import duties on inputs are not deducted. F urthermore, it is a value net of producer contributions to help finance the policy measure (for example, producer levies), and it shows a given transfer to producers. M PS is an element of the PS E, indicating the annual monetary value of gross transfers from consumers and taxpayers to agricultural producers arising from policy measures that create a gap between domestic producer prices and international reference prices. C onditional on the production of a specific commodity, MPS includes the transfer to producers for total production (for domestic use and exports), and is measured by the price gap applied to current production. In the case of livestock production, it is net of the market price support for domestically produced coarse grains and oilseeds used as animal feed.

T he comparison of the levels of PS E and M PS over the last two decades shows the effects of the CA P reform in 1992: an ever decreasing part of farm support (measured as PSE) is due to (direct and indirect) measures to lift domestic market prices above world market prices (see MPS versus PSE in Figure 4.1). This process has continued since the Agenda 2000 reform. Market price support was at its lowest level in the most recent years and much lower than during the time when the EU had only 12 M ember S tates. T he shift among support measures has several implications: the weight of direct support measures has been increasing, and the weight of export subsidies has declined. T he reform efforts since 1992 have gained considerable momentum

CAP Reforms: Effects on Agriculture and Environment

Table 4.1

EU 27 EU 25 EU 15 Belgium Bulgaria C zech R epublic Denmark Germany Estonia Ireland Greece S pain F rance Italy C yprus Latvia Lithuania Luxembourg H ungary M alta N etherlands A ustria Poland Portugal R omania S lovenia Slovakia F inland S weden U nited Kingdom

35

Relative change of support structure in the EU Subsidies on products

Other subsidies

2003 2005 Ø 1999/2001= 100 . . 109 76 109 69 94 44 . . 90 129 112 5 107 0 112 144 371 182 100 83 107 117 110 114 106 57 – – 263 403 117 703 120 0 220 459 3,117 4,114 143 176 121 36 147 1,232 120 120 118 205 226 284 147 191 108 106 117 26 91 9

2003 2005 Ø 1999/2001= 100 118 223 118 223 118 209 367 945 399 498 161 451 105 699 95 368 90 924 47 127 136 205 164 153 161 127 100 149 132 0 1,144 17,066 28 402 115 221 168 698 86 896 139 140 113 155 53 862 127 166 122 250 187 366 86 107 107 114 102 220 148 681

National expenditures for agriculture 2003 2005 Ø 1999/2001= 100 . . . . 97 100 111 75 . . . . 95 54 106 280 . . 109 119 77 34 91 44 102 80 87 44 . . . . . . 95 93 . . . . 85 52 96 79 . . 102 5 . . . . . . 107 137 99 76 83 70

Source: Economic A ccounts of A griculture, EUROSTAT

in 2003. The share of subsidies that are linked to output has been reduced considerably (see column ‘subsidies on products’ in T able 4.1). D ecoupled direct payments were paid first in 2005. The process of decoupling has not been adopted consequently in all EU Member States. In Germany, Luxembourg, Denmark and in the U K decoupling was thoroughly implemented. H owever, in F rance and in S pain there have been even more coupled subsidies in 2005 than in 2003. T he 2003 reform was achieved in a consensual manner because the overall volume of transfers was not touched. T he volume of other subsidies was increasing

36

Table 4.2

EU 27 EU 25 EU 15 Belgium Bulgaria C zech R epublic Denmark Germany Estonia Ireland Greece S pain F rance Italy C yprus Latvia Lithuania Luxembourg H ungary M alta N etherlands A ustria Poland Portugal R omania S lovenia Slovakia F inland S weden U nited Kingdom

Ethics, Law and Society: Volume IV

Development of employment and income in Agriculture and GDP Employment in agriculture 2003 2005 Ø 1999/2001= 100 90 85 93 89 94 90 97 93 105 83 102 91 92 82 89 85 62 60 99 94 106 104 93 92 95 91 92 87 96 92 94 93 93 74 92 92 85 77 93 88 96 90 97 94 91 91 96 85 78 75 90 85 83 69 94 85 97 99 88 87

Real factor income per labour unit 2003 2005 Ø 1999/2001= 100 . . 100 99 99 94 102 101 . . 82 143 84 96 79 110 160 250 90 110 87 82 115 94 95 89 95 85 99 87 120 208 98 195 93 88 84 133 91 91 90 85 102 105 88 149 88 92 111 93 102 163 89 108 111 125 118 107 128 116

Real GDP 2003 2005 Ø 1999/2001= 100 105 110 105 110 105 109 104 109 115 130 109 121 102 107 102 104 125 149 119 132 114 124 110 118 105 109 103 104 108 118 123 147 125 144 111 122 113 124 101 105 103 107 104 108 108 118 103 105 116 131 110 120 113 126 107 114 107 115 108 113

Source: Economic A ccounts of A griculture, EUROSTAT

in 2005 compared to 2003. N ational subsidies to agriculture did not change at EU level, but the levels of support changed within the EU M ember S tates. S tructural change in the agricultural sector is progressing in the EU . In EU -15 the farm sector lost 10 % of its labour force within half of a decade (measured in annual working units, the statistical equivalent of fully employed persons). Not only did employment decline, but also real factor income per annual working unit. T herefore, EU farmers were worse off in 2005 compared with the reference period 1999/2001. T able 4.2 shows that GD P grew in every EU M ember S tate in the same

CAP Reforms: Effects on Agriculture and Environment

37

period. F armers of the countries that entered the EU in 2004 were better off in 2005 than they were in 2003 and before. T he same was true only in some EU -15 M ember S tates. T he assessment of the effects of the 2003 CA P reform on agriculture based on statistical data therefore shows that farmers in EU -15 were not better off after the reform. However, a longer term comparison is necessary for a final judgement. Expected effects of the CAP reform of 2003 on the environment: Results from case studies Production linked subsidies, the predominant transfer vehicle in agriculture, are classified by the OECD as environmentally harmful (Portugal 2002; Steenblik 2002). S ome observers maintain the position that on a global scale agriculture is the primary threat for the environment (C lay 2004). H ence, attempts to quantify the impact of subsidies granted to this sector and the magnitude of their consequences for the environment is of substantial interest. T he recent CA P provides an interesting example of an analysis of the consequences of farm subsidies on the natural environment because European agriculture is substantially subsidised and reliable agri-environmental indicators are available (O ECD 2001, 2002). An analysis of the Agenda 2000 reform concluded that it had significant economic costs but almost no effects on the environment – neither positive nor negative (W ier et al. 2002). This case study was done for Denmark. For the case of A ustria, S chmid and S inabell (2007) analyzed whether this conclusion holds for the 2003 CA P reform as well. A coherent way to evaluate the environmental improvements after policy reforms is to monitor indicators. O ECD has developed a set of internationally accepted environmental indicators. In the field of agriculture, the work on indicators has been fruitful and recent publications allow sound country comparisons (O ECD 2001). C onsequently, the current CA P reform gives an opportunity to analyze how environmental indicators might change due to the abolishment of subsidies that were previously linked to farm output. OECD (2001) classified agri-environmental indicators according to the following categories: •

• •

agriculture in the broader economic, social and environmental view with contextual information (like agricultural value added, farm employment) and information on farm financial resources (farm income, agri-environmental expenditures); farm management indicators of whole farms (organic farming, farm management plans), nutrient, pest, soil, land, irrigation and water management; use of farm inputs and natural resources concerning nutrient use (nitrogen balance and efficiency), pesticide use and risk, and water use (water use intensity, water efficiency, water stress);

Ethics, Law and Society: Volume IV

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•

environmental impacts of agriculture with respect to soil and water quality, land conservation, greenhouse gases, biodiversity, wildlife habitats, landscape and ecosystem diversity.

Schmid and Sinabell (2007) made a comparison of likely environmental consequences between a CAP policy with subsidies partly linked to production (A genda 2000) versus decoupled subsidies (2003 CA P reform). T he base-line scenario is a continuation of the A genda 2000 reform in A ustria until 2008. It is compared with two other scenarios: a. ‘A ustrian decoupling’: T his scenario is modelling the actual implementation of the reform – the introduction of the single farm payment – in A ustria, given that the ‘good agricultural and environmental condition’ of land is maintained. Within limits, the payments coupled to heads of livestock (suckler cows and heifers), and to the output of beef (40% of the slaughter premium) will not be abolished. b. ‘C omplete decoupling’: T his scenario is similar to a) but goes beyond the reform. T he single farm payment will be granted even if farmland is afforested. In this scenario it is possible to identify the implications of the conditionality of the single farm payment, which requires that land must be maintained in good agricultural condition. A ccording to these results, ‘cross compliance’ conditions (among them maximum numbers of livestock per hectare, and good agricultural practices) have no environmental consequence in this case study. T his is due to two factors: i) the requirements of the agri-environmental programme are stricter and ii) almost all land is managed according to the rules of this programme. T he requirement to maintain land not only in good environmental, but also in good agricultural condition, prevents farmland afforestation. If this condition was relaxed, the acreage of farmland, in particular arable land would shrink significantly (column ‘complete decoupling’ in T able 4.3). T he remaining farmland would be managed relatively more intensively (for example, on average more livestockunits per hectare). Environmental indicators measuring soil fertility (organic carbon), air pollution (methane emission), and water quality (surplus of nitrates and livestock density) are showing diminishing pressures on the environment. T his is mainly due to changing land uses (expansion of grassland while arable land is reduced) and a smaller cattle herd. T he acreage of arable land that is organically farmed decreases slightly, but to a lesser extent than conventionally managed arable land. T his can be explained by the assumption that support for organic farming in 2008 will be the same as before the reform. T his implies that the share of premiums for organic farming in crop revenues will get larger. S oil cover in wintertime is declining at the same pace as arable land but the relative share remains the same.

CAP Reforms: Effects on Agriculture and Environment

Table 4.3

39

Expected environmental effects of the 2003 CAP reform in Austria

economic, factor use and output indicators gross value added plus other subsidies variable cost livestock products variable cost crops arable land meadows and pastures output of beef output of pork farm management and environmental indicators organic farming on arable land organic farming subsidies soil cover during winter livestock units (total) average livestock units per hectare methane emission carbon storage in soil nitrate from manure nitrate from mineral fertilizers nitrogen surplus (O ECD method) Source: S chmid and S inabell, 2007

Austrian implementation

Complete decoupling

+0.7 +2.5 –0.8 –1.7 +3.1 –3.3 ±0.0

+1.4 –3.4 –5.6 –7.0 –2.6 –6.8 –2.1

–1.0 +1.0 –1.6 –0.3 –1.0 –0.5 +0.1 –0.1 –0.9 ±0.0

–2.7 –2.6 –7.3 –3.1 +1.9 –3.5 +1.1 –3.1 –7.2 –2.8

The environmental benefits of the 2003 CAP reform are primarily the consequence of changing land-uses (more grassland means more soil organic matter compared to arable land) and a smaller herd of bulls (less methane emission, fewer livestock units and less nitrogen surplus). According to the model results, declining outputs of crops and beef will not be compensated by a corresponding rise of pig or poultry production; therefore, the benefits of lower production levels will not be offset. T he fact that the conditions of the single farm payment do not allow afforestation is interpreted to be positive because summer tourists in A ustria have a preference for open agricultural landscapes (Hackl and Pruckner 1997). A fter the 2003 CA P reform, the opportunity costs of adopting farm practices, which are widely assumed to be environmentally friendly, are lower. T his view is supported by the findings of the model simulations. Given that arable land would shrink between 1.5 and 7%, whereas organically managed arable land would only decline between 1 and 2.7%, indicates that organic farming will become more attractive for farmers.

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Conclusions T he CA P reform 2003 was a consequent further step of the reform initiated by Commissionar McSharry in 1992. The market distorting effects of direct payments has been reduced by decoupling some of them. N ot all M ember S tates have implemented the reform as intended by C ommissionar F ischler in 2003. Therefore, the commission has taken the initiative in the current CAP reform evaluation (health check of the CAP reform 2003) debate to push forward reforms on the way for further decoupling. The results of the OECD show that market distorting interventions of the EU have been reduced. In the EU-27, the level of market price support in nominal terms is lower than it was 15 years ago. N egative spillovers to other commodity markets and to international markets of agricultural products have been reduced. Further steps in countries like France, Netherlands and Spain will be needed in order for the process of decoupling support from production to progress. It is too early to draw final conclusions on the effects of the 2003 CAP reform for the agricultural sector and the environment. M odel results from A ustria suggest that decoupling has positive effects on the environment because farming will become more extensive. H igh commodity prices as those observed in 2007 will counterbalance this effect but one of the claims of the 2003 reform – farming will become more sustainable – seems to be justified. Another claim – that farmers will be better off – has not yet materialized for all EU M ember S tates. References Buckwell, A. (1982) The Costs of the Common Agricultural Policy (London: C room H elm). Ackrill, R. (2000) The Common Agricultural Policy. Contemporary European Studies 9 (Sheffield: Sheffield Academic Press). C lay, J. (2004) World Agriculture and the Environment. A Commodity-byCommodity Guide to Impacts and Practices (W ashington DC : Island Press). Hackl, F. and G.J. Pruckner (1997) ‘Towards more efficient compensation programs for tourists’ benefits from agriculture in Europe’, Environmental & Resource Economics 10, 189–205. O ECD (2001) Environmental Indicators for Agriculture. Volume 3 Methods and Results (Paris: O ECD ). O ECD (2002) Environmentally Harmful Subsidies. Policy Issues and Challenges (Paris: O ECD ). Portugal, L. (2002) Methodology for the Measurement of Support and Use in Policy Evaluation. O ECD D irectorate for F ood, A griculture and F isheries, Paris, available at: .

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S chmid, E. and F . S inabell (2007) ‘O n the choice of farm management practices after the C ommon A gricultural Policy R eform 2003’, Journal of Environmental Management 82:3, 332–340. Steenblik, R. (2002) ‘Subsidy measurement and classification: developing a common framework’. Environmentally Harmful Subsidies: Policy Issues and Challenges (Paris: O rganization for Economic C o-operation and D evelopment), 101–141. W ier, M .J., M . A ndersen, J.D . Jensen, and T h.C . Jensen (2002) ������������������������ ‘���������������� T he EU ’s A genda 2000 reform for the agricultural sector: environmental and economic effects in Denmark’, Ecological Economics 41:2, 345–359.

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C hapter 5

T he Ethics of A nimal C loning Christian Gamborg, Mickey Gjerris and Peter Sandøe

Introduction T he cloning of D olly the sheep, more than ten years ago, was widely seen as a major achievement of the scientific community (Wilmut et al. 1997), and many potential beneficiaries of cloning, within both human biomedicine and food production, quickly came to entertain great hopes so far as applications of the technology were concerned. A t the same time, however, concerns were raised about ethical implications. Until Dolly, conventional scientific wisdom had been that the cloning of cells taken from the somatic tissue of adult individuals was impossible. The advent of S omatic C ell N uclear T ransfer (SCNT ) changed that. But with the removal of a major technical obstacle to this development in animal biotechnology, society was now faced with a question about ethical limits: what is it acceptable to do (Lassen et al. 2006)? As the technology has been refined, more species have been cloned, and applications have begun to emerge, albeit at a much slower pace than originally expected (Vajta & Gjerris 2006). F arm animal cloning has run into several technical/ biological problems that were not anticipated in the early days of development, such as low efficiency, a high incidence of malformations and reduced viability of the animals (Vajta & Gjerris 2006). U ntil very recently it has also been a matter of some debate whether food products derived from cloned animals are safe for humans to consume. In January 2008 the US Food and Drug Administration (FDA) finally released its risk assessment of the health of animal clones, their progeny and the food products derived from them (CVM 2008). The report, which took more than eight years to complete (Vermij 2007), states that there are no substantial differences between products derived from cloned pigs, swine and cattle or their progeny and  T he term ‘cloning’ here refers to asexual reproduction – or, more precisely, to the production of individuals with virtually identical genetic material by asexual reproduction. In recent debates, interest has centred on cloning by SCNT .  T he term ‘farm animal’ refers to farm animal species such as ruminants (for example, cows, sheep), pigs and poultry (chicken, turkey). However, here, the term does not imply that an animal is kept or used in an agricultural setting or for agricultural purposes. Thus potential applications of ‘farm animal cloning’ include those in medicine.

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products derived from conventionally bred animals of the same species; and that there are no health risks related to human consumption of these products that are not also present in the conventional products. T he report also states that there are no problems concerning the health of the cloned animals that cannot also be found within other artificial reproductive technologies; the problems are just more abundant in cloned animals. M oreover, according to the report, in the future, cloning technology will probably increase success rates and thereby put less strain on animal health. A draft evaluation issued by the European F ood S afety A uthority (EFSA ) reaches conclusions very similar to those of the FDA , ���������������������� though the EFSA place greater emphasis on the adverse effects of the technology on animal welfare (EFSA 2007). H owever, as the volume of responses to the draft version of the FDA report shows, not everyone is satisfied with the conclusions of the FDA. It is important to note that the FDA report covers only ‘science-based concerns’ about human and animal health. W ider issues – for example, relating to animal welfare and integrity, ‘slippery slope concerns’ and general concerns about the increasing use of biotechnology in agriculture – are left unexamined. W e will return to this later. T his chapter examines a range of wider concerns about farm animal cloning. W ays of addressing these concerns through regulation and law, particularly in the European setting, will be discussed. Various possible developments of applications and ensuing regulatory options (involving, principally, existing regulation, new EU regulation and national regulation) are explored, and we also discuss the underlying ethical or value issues. We find (a) that there is a difference in the publicly perceived ethical acceptability of cloning for biomedical purposes and cloning for food production; and we argue (b) that the existing regulatory frameworks for these two kinds of application seem to differ in ways that are relevant to ethical discussion. For What Purpose is an Animal to be Cloned? What kinds of application is farm animal cloning most likely to involve? Discussions between scientists, legal scholars and ethicists at a series of expert workshops  T he EFSA recognizes that the issue of animal cloning raises ethical, moral and other societal issues beyond its remit (EFSA 2008) – issues that have been addressed by the European Group on Ethics in Science and New Technologies (EGE 2008). The EFSA’s final opinion is likely to be published in May 2008.  M ore than 30 000 responses were received by the FDA .  F or a critique of the separation of ‘science-based concerns’ and ‘ethical concerns’, see Gjerris et al., forthcoming.

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– held as part of a recently completed EU project – demonstrated an absence of consensus, among participants, on this question. T here was disagreement about what applications will in the near future be technically feasible, what kinds of application will be economically worthwhile, and which, if any, of these is ethically acceptable. T hus predictions about how animal cloning will be used in a foreseeable future are highly uncertain. O ne major uncertainty is about whether the technology will, on any considerable scale, be of use in the production of meat and other animal products – or whether it will mainly be of use for basic research and for biomedical purposes (Gamborg et al. 2007). Basic research may be designed to improve our understanding of embryonic development, or to deepen our knowledge of epigenetic processes, or to provide a basis on which disease models can be developed. In biomedicine, reproductive cloning can be used as a tool enabling efficient production of transgenic animals that will mostly serve as disease models enhancing our understanding of human disease. In combination with transgenesis the technology can also be used to produce farm animals that produce pharmaceuticals – so-called ‘pharming’. A nd in agriculture, reproductive cloning could be used to propagate a desirable genotype that generates individual animals of greater than average genetic merit. Public Perceptions of Animal Cloning Applications in Europe Although our knowledge of European perceptions of farm animal cloning is somewhat limited, owing to a lack of qualitative and quantitative studies focusing on this specific issue, we can draw some conclusions from the Euro barometer studies conducted since 1991 on European public attitudes to animal biotechnology. A s Lassen (2005) notes, cloning always exists in a context. O nly at the basic research level, perhaps, can it be considered a stand-alone technique. O therwise, in each case, it must be viewed as part and parcel of its application. C loning is, in other words, to a large extent an enabling technology that is mainly used in connection with other technologies, especially those involved in genetic   In 2006 the project ‘Cloning in Public (CiP), a specific support action within the sixth framework programme, Priority 5, Food quality and safety’ (Contract no. 514059) was concluded. T he overall aims of C iP were to develop recommendations on possible European regulation of research on farm animal cloning and its subsequent applications (for example, in genetically modified animals for bio-reactors); and to stimulate informed public debate across Europe. T hese aims were accorded the same importance. C learly, they are also interrelated, because if regulations and guidelines are to serve their purpose they must take public concerns into account.  O ne of the EGE recommendations (EGE 2008, 5) is that ‘T he C ommission should launch a thematic Eurobarometer survey and qualitative studies on animal cloning for food supply, in order to collect indicators on public perception concerning the introduction of such products to the food market as is being done in other countries’.

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modification. Moreover, when it comes to public perceptions, cloning is often regarded from within the context of other kinds of (animal) biotechnology. A t any rate, in our view it is possible to see a difference here between medical and agricultural applications, with the former being more positively received. Of course, public perception is difficult to gauge since it normally depends to a large extent on the existence of alternatives and on perceived usefulness. Lassen (2005, 17) interprets the public attitudes in the light of two scales: the type of organism involved (with higher mammals typically prompting more anxiety than, say, micro-organisms) and the type of application (with food-related applications provoking more anxiety than medical ones). On the first of these scales, cloning sits towards the controversial end, since its object is animals. O n the second scale the position depends on the purpose and application of the cloning being considered. Taking both scales into consideration, one would expect to find farm animal cloning in food production to be controversial in all respects.

O n this analysis of public attitudes, then, there will be a difference in the perceived ethical acceptability of cloning for biomedical purposes and cloning for food production. Before we go on to discuss the regulatory challenges presented by this distinction, we will pause to provide a brief, and more systematic, overview of the ethical concerns at play here. Ethical Concerns An often-used classification of concerns relating to animal biotechnology is the following: 1) concerns relating to animals, either animal welfare or animal integrity; 2) concerns relating to humans, mainly about risks to human health and the environment on which we depend; and 3) concerns about societal impact – for example, with regard to the role of animal biotechnology in the continued intensification of agriculture. The focus here will be on the first two groups of concern. T hese seem to have been most relevant, and therefore prominent, in discussions about animal cloning. Concerns relating to animals Concerns relating directly to animals reflect two perspectives on animal welfare, one narrow and the other broader. W ithin the narrow perspective a pair of positions can be identified: one focuses on negative psychological experiences that the technology might cause, and the other concentrates on the physical health of the animal. C loning often causes cloned animals pain, suffering and physical problems (EFSA 2007).

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W ithin the broader perspective the focus turns, among other things, to the ability of the animal to live a natural life in which it fulfils its species-specific potentials. S uch potentials include having progeny that is a result of evolution and, in the case of the individual animal, being conceived by sexual reproduction. Going beyond animal welfare, a key concern is animal integrity. This concern views integrity as a concept that limits human use of animals through regard for the independence of animals from humans. Gjerris (2006) argues that all of these concerns rely on deep ethical convictions about what entities should be included in the ethical community and thus treated with respect. Concerns relating to humans The key concerns relating to humans relate primarily to potential impacts on human health and the spectre of the slippery slope – that is, the anticipated fear that animal cloning may pave the way for reproductive human cloning. Risk assessment research on negative consequences of cloning for human health has so far been unable to find any significant differences between products from cloned animals and their offspring and products from non-cloned animals (C VM 2008). Although risk assessment provides an important input to ethical evaluation, disagreements will undoubtedly arise as the result of more basic disagreement over when, or rather, at what point in fact gathering, we have sufficient knowledge to judge a certain product safe for human consumption. T he more basic disagreement here is to some extent grounded in different ethical perspectives, so it might be argued that our current knowledge of the potential environmental and socioeconomic impact of farm animal cloning is very hard to evaluate. T his is because there is considerable uncertainty over the future of the technology. A lthough it is estimated that socio-economic impact will be minor, the conflicts described above will probably surface in this area as well. European Regulation It must be granted that some of the concerns mentioned above are very real, in the sense that they actually are present in the minds of many people in Europe; and this sociological fact gives rise to certain challenges when we ask how cloning technology should be regulated in the European context. To date, no specific binding legal instrument explicitly concerning animal cloning has been passed in the EU. Hence, unlike the genetic modification of animals, cloning is not directly regulated at EU level. However, EU law defines a rather complex indirect regulatory framework. A ssociated with the T reaty Establishing the European C ommunity, there is food safety and consumer protection legislation, animal welfare and zoo technical legislation, and legislation relevant to GMO s and intellectual property rights.

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A ll of this legislation affects the lawfulness of cloning – no less so, the potential arrival, on the market, of products from cloned animals or their progeny. Twenty-four of the 25 EU Member States have at present no specific legislation on the cloning of farm animals. And like their European counterparts, researchleading countries such as the US , C anada, A ustralia, C hina and Japan, also have no specific legislation on animal cloning. So far no country has officially allowed meat from cloned animals to enter the food chain. However, this seems likely to change. In January 2008, as mentioned above, the FDA released its 968-page risk assessment of products derived from cloned animals and their progeny (C VM 2008, 15–16). T his states: Extensive evaluation of the available data has not identified any subtle hazards that might indicate food consumption risks in healthy clones of cattle, swine, or goats. T hus, edible products from healthy clones that meet existing requirements for meat and milk in commerce pose no increased food consumption risk(s) relative to comparable products from sexually-derived animals. T he uncertainties associated with this judgment are a function of the empirical observations and underlying biological processes contributing to the production of clones. T here is less uncertainty about the health of clones as they age and have more time to exhibit the full range of functionality expected of breeding stock. Edible products derived from the progeny of clones pose no additional food consumption risk(s) relative to corresponding products from other animals based on underlying biological assumptions, evidence from model systems, and consistent empirical observations.

T he practical outcome of this assessment is that in future the FDA will erect no obstacles to the use of cloning in food production (most probably, as part of the breeding of farm animals in the US ). W ith these developments in farm animal cloning in the US in mind, and the pending similar conclusions being reached by European public bodies such as EFSA (2007), it is prudent to consider whether farm animal cloning can be adequately regulated by the current EU legislation – and if not, how farm animal cloning might otherwise be regulated. Here key questions include the following. A t what level, and how, should the technology be regulated? On what kinds of concern should regulation be based? Future regulation of Animal Cloning in Europe If cloned animals or their progeny enter the food chain in US, they are also likely to do so in Europe – unless this is prevented by effective regulation. H owever, it is unclear as yet whether cloning for farm animal production will gain momentum. T here are three possible scenarios: 1. A nimal cloning is used in basic research and biomedicine applications only both in, and outside, the EU .

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2. A nimal cloning is used in basic research and biomedicine in, and outside, the EU , but has agricultural applications only outside the EU . 3. A nimal cloning is used in basic research, biomedicine and agricultural applications both in, and outside, the EU . At present, the third scenario looks less likely than the first two (Gamborg et al. 2006), but all three options are worth considering. About the first option it can be said that as long as farm animal cloning, within the EU and globally, is primarily used for basic research purposes (for example, to enhance our understanding of the rudimentary biological processes involved in reproduction and cell formation or to develop disease models) and/or for biomedical purposes (where farm animals species are used as disease models or bioreactors), existing legislation will cater for a wide array of ethical concerns. T hus concerns about risks to humans and the environment, and about the deleterious impacts of research on animal welfare, will at least be addressed within the framework of legislation regulating biomedical research. O ther ethical concerns, however, such as those relating to the integrity or naturalness of the animals, are in general not addressed by existing legislation. If, to consider the second option, farm animal cloning is used for basic research and biomedicine applications in and outside the EU , and for agricultural applications only beyond the EU , the most urgent regulatory question will be whether the EU as a whole, or individual EU countries severally, will be able to restrict imports of cloned animals or their progeny (or products derived from them) and/or to require satisfactory kinds of labelling. O ffspring from cloned animals have already been imported from the US into Europe and their products are likely to enter the market. A recent example of this is the British born calf, D undee Paradise, that was created with material from a normal bull and the clone of a prize-winning dairy cow in the US and then imported as an embryo and implanted into a cow on a farm in the UK. A conflict not unlike the one about genetically modified crops in Europe in the 1990s may well arise again. T he third option, where farm animal cloning is used for general agricultural purposes both outside and within the EU, does not seem very likely in a foreseeable future; but if it were to occur existing regulation would exert little control on any connected animal cloning as such. Introducing legislation at EU level is another option. In practice, however, as the workshops in the project Cloning in Public testified, consensus on new EU legal and quasi-legal mechanisms governing animal cloning could be difficult to achieve. A last option would be to introduce national legislation, as has already happened in Denmark and Norway (the latter a non-EU Member State). In the eventuality that policy makers and legislators decide to rely on the present, indirect EU mechanisms together with some new, direct EU regulation, the risk aspect would feature prominently. Possible risks to human health and the environment are obviously central concerns, and these would have to be addressed

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vis-à-vis animal cloning for agricultural purposes. In addition, uncertainty about the social acceptability of products from cloned animals ought to be considered. R eservations about such products may be connected with the basic values underpinning the European C ommunity (for example, sustainability, biodiversity and the precautionary principle) and, more specifically, to a number of other important concerns, such as animal welfare, animal integrity, and consumer rights. F rom a consumer rights perspective, the worry might be that a legal gap will open up if foodstuff from cloned animals is covered neither by the regulation of novel foods nor by the regulation of genetically modified food; hence it might be suggested that cloning requires us to introduce more specific labelling requirements. General food law (R egulation (EC ) N o 178/2002) explicitly mentions the consumer’s right to make informed choices, but it is questionable whether this provides the consumer with a right to receive specific information about food products derived from cloned animals or their progeny. In the area of risk assessment more comprehensive results are still pending (EFSA 2007). It is difficult to identify genuine gaps in the present legal framework until further information is available from risk assessments, and until subsequent discussions by the relevant experts to the Commission have taken place. If it is discovered that non-transgenic cloned animals and their products are substantially equivalent to animals already in commercial production, such animals and their products may readily fall under much of the existing food safety-related legislation (Gunning et al. 2006). T his legislation contains no special provisions relating to products from cloned animals: as long as the end product, the meat, is indistinguishable from meat from non-cloned animals the same legal provisions will apply. H owever, from a more process-oriented point of view the products could still be seen as ‘new’ in some sense. Limits to Regulation In principle, EU legislation leaves room for the application of EU rules within the framework of national ethical principles. It remains uncertain whether, in practice, this encourages opportunistic calls upon moral principles masking de facto interventions in trade (Gunning et al. 2006). N ational restrictions have to comply with the specific provisions in the Treaty of the European Community, and especially those covering quantitative restrictions between M ember S tates (A rticles 28–31), because the free movement of goods, services, persons and capital is an essential element of the internal market. F ollowing public consultation, individual countries may decide that animal cloning is a moral issue and prohibit such activity, or at any rate restrict it to certain applications. This has been done in Denmark. Similar action has been taken by N orway, a member of the European Economic A rea (EEA ). D anish law restricts animal cloning to research purposes. It is silent on imports of cloned animals or

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products from cloned animals. H owever, a newly proposed legal amendment, if approved by the EU , should place a ban on such imports – unless the purpose is to do research. Consensus across the EU on aspects other than risks to human health and the environment does not seem likely. The powerful pharmaceutical sector is likely to support the recruitment of cloning in the production of therapeutic substances, and countries with an important livestock industry will presumably see advantages in the latest technological advances in livestock improvement. An example of use in the pharmaceutical sector is the pharmaceutical company Pharma. T his company uses nuclear transfer cloning techniques to create genetically modified goats that produce therapeutic proteins in their milk (ATryn®, or recombinant human antithrombin). In 2007 the product based on these proteins was, as the first of its kind in the world, approved by the European Commission. Conclusions A nimal cloning in farm animal production is viewed by large sectors of the European public as highly problematic. In its opinion on farm animal cloning for food, the European Group on Ethics in S cience and N ew T echnology ‘does not see convincing arguments to justify the production of food from clones and their offspring’ (EGE 2008, 1). H owever, at EU level, and in all European countries apart from one, there is no direct legal regulation of the cloning of animals for agricultural purposes. T his is the basis of the following general conclusion of the C loning in Public project (Gamborg et al. 2006, 7): … the EU will be left with difficult processes of decision-making if the cloning of farm animals is put to use in agricultural production in countries outside (likely) or within (only likely at a low level) the EU. Whether it is decided to rely on existing regulation or to introduce new and specific legislation, concerns for free trade and concerns for social acceptability in a European context will have to be negotiated.

Animal cloning raises a multitude of concerns, some of them specifically connected with the context that cloning is to be used in. If the European regulation of cloning is to reflect these public concerns, it will be necessary to differentiate regulation according to each application. Especially when it comes to agriculture and food production, this could potentially generate a problem, since the product-based legislation favoured by the US will not meet the worries about the cloning process found among the European public. How to take these concerns seriously, while staying within the various trade agreements that bind the EU, is bound to be a key challenge in the coming years.

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References C VM (C enter for Veterinary M edicine) (2008) Animal Cloning: A Risk Assessment (Rockville, Center for Veterinary Medicine, US Food and Drug Administration, D epartment of H ealth and H uman S ervices). A vailable online at <����������� ������������ http://www. fda.gov/cvm/CloneRiskAssessment_Final.htm>. European F ood S afety A uthority (2008) EFSA statement on the publication of the opinion of the European Group on Ethics and New Technologies on ethical aspects of animal cloning for the food supply. 17 January (2008). European F ood S afety A uthority (EFSA ), DRAFT Scientific Opinion on Food Safety, Animal Health and Welfare and Environmental Impact of Animals derived from Cloning by Somatic Cell Nucleus Transfer (SCNT) and their Offspring and Products Obtained from those Animals (EFSA 2007). Gamborg, C ., Gjerris, M ., Gunning, J., H artlev, M . and S andøe, P. (2007) ‘�������� C loning for meat or medicine?’, i��������������������������������������������������� n Zollitisch, W., Winckler, C., Waiblinger, S. and H aslberger, A . (eds) Sustainable Food production and Ethics (W ageningen: W ageningen A cademic Publishers), 466–471. Gamborg, C ., Gjerris, M ., Gunning, J., H artlev, M ., M eyer, G., S andøe, P. and T veit, G. (2006) ‘R egulating F arm A nimal C loning. R ecommendations from the Project C loning in Public’. Project R eport N o. 15. (C openhagen: D anish Centre for Bioethics and Risk Assessment), 18 pp. Available online on . Gjerris M ., O lsson I.A .S ., Lassen J. and S andøe P. (F orthcoming) ‘Ethical perspectives on animal biotechnology’, in Atkinson, P., Glasner, P. and Lock, M . (eds) Handbook of Genetics and Society: Mapping the New Genomic Era. Genetics and Society Book Series (Abingdon: Routledge). Gjerris, M . and S andøe, P. (2007) ‘Ethical concerns related to cloning of animals for agricultural purposes’, in Zollitisch, W., Winckler, C., Waiblinger, S. and H aslberger, A . (eds) Sustainable Food Production and Ethics (W ageningen: W ageningen A cademic Publishers), 455–460. Gunning, J., H artlev, M . and Gamborg, C . (2006) ‘C hallenges in R egulating F arm A nimal C loning: A n A ssessment of R egulatory A pproaches and the Legal Framework within the EU’. Cloning in Public Project Report No. 6. (Copenhagen: Danish Centre for Bioethics and Risk Assessment) 52 pp. Available online on . Lassen, J. (2005) ‘Public Perceptions of F arm A nimal C loning in Europe’. Project Report No. 9. (Copenhagen: Danish Centre for Bioethics and Risk Assessment). Available online on . Lassen, J., Gjerris, M . and S andøe, P. (2006) ‘A fter D olly – Ethical Limits to the U se of Biotechnology on F arm A nimals’, Theriogenology 65, 992–1004. M eyer, G. (2005) ‘W hy C lone F arm A nimals? Goals, M otives, A ssumptions, Values and Concerns among European Scientists Working with Cloning of Farm Animals’. Project Report No. 8. Danish Centre for Bioethics and Risk

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A ssessment, C openhagen. 27 pp. A vailable online on . T he European Group on Ethics in S cience and N ew T echnologies to the European C ommission (2008) Ethical Aspects of Animal Cloning for Food Supply. Opinion No. 23. Vermij, P. (2007) ‘FDA ’s cloning report bypasses ethics, exposes European dilemma’, Nature Biotechnology 25, 7–8.

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C hapter 6

European F ood R egulation and Accountability: The Interplay of Influences S haping the N ew R egulatory T errain Samarthia Thankappan

This chapter highlights key emergent themes of the complex model of food regulation in the UK that is evolving as a result of the private, institutional and consumer pressures on food regulation. The growing significance of incorporating consumer and public concerns and constructions in policy making, along with fostering a pivotal and globally competitive European food market is discussed. T he riding of these two ‘horses’ – one associated with the deepening spatial mobility of food, the other with continuously giving this mobility some degree of public legitimacy – defines the agenda for the new complex model of food regulation. A model, within a new publicly-defined set of parameters which has re-cast, private interest regulation, that is supposedly in the (European) public interest. In this chapter, the case of the fresh fruit and vegetable sector is used to explore the complex relationships between S tate, corporate and private interests, consumers and social interest groups that is developing in response to the need for accountability within the U K agri-food chain. T he chapter concentrates on the extent to which the food retailing industry is actively managing its supply chain by the introduction of private standards to ensure food quality and safety all along the chain. T he concluding section of the chapter highlights that in the FF V sector, more retailers have developed their own ‘codes of practice’ including good agricultural practice (GAP) and specifications related to intrinsic and extrinsic qualities. These private specifications are based on national and EU food safety and quality regulations and in most cases exceed these regulations. H owever, exercising extensive private standards is a way to prove they have exercised ‘due diligence’ based predominantly on third party certification, rather than a way to address sustainability issues and concerns of workers in the horticultural export industry. Introduction F ood regulation is now deep rooted and integrated into the European political project. T hough agricultural corporatism has declined in its political and economic power in European policy-making, it has laid a foundation for a more comprehensive

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and commercially-led regulatory system – ‘a hybrid model’, that is more sensitive to the consumer and private sector concerns. It is increasingly universal, scientific and normative; global as well as local in reach as well as inter-sectoral. A nd, as observed in our earlier findings (see for example Marsden et al. 2000; S mith et al. 2004; Thankappan et al. 2004) it is being sustained by, the interaction of a larger diversity of actors and policy networks. This makes the development of public policy all the more complex. T he food and retailing industry is also increasingly paying more attention to food quality and safety issues by actively managing its supply chains of food products. A plethora of private safety control systems, standards, and certification programmes are responding to more demanding consumer requirements. M any leading retailers in Europe have developed programmes for integrated production; thus paving a way for both supply and demand, and playing a pivotal role in bringing about a change in the way crops are cultivated in a safe and sustainable manner. Our earlier research indicated that retailers are also becoming more influential, in food policy-making in the UK and EU, in the name of the consumer and public interest, partly as a result of their knowledge of and authority over the constructions of the consumer interest. D espite the increasing power of both manufacturers and retailers, it will be these constructions of consumers and those bodies most closely allied to them who drive the food supply chain in the future. The ‘new consumer’ is increasingly influencing the food system by selection or rejection of food considered healthy or hazardous; and large-scale retailers’ organizations acting as intermediaries between the production and consumption are both very sensitive to these pressures and attempt to shape consumers’ preferences. The importance of some key consumer trends can be evidenced in several important developments. First, the different links in the supply chain are increasingly attempting to communicate more directly with the end customer as they vie for consumers’ business. S econd, all the players want to have a greater impact on the shoppers’ buying behaviour. Retailers are trying to influence the consumer mindset by presenting themselves as a better brand. Indeed, brand competition is a key battleground between retailers themselves, and between them and the large food manufacturers. M arsden et al. (2000) noticed a pendulum movement during the 1990s in which the deregulation in food markets and the disappearance of representative (production-based) corporate organizations were gradually replaced by large-scale retailer’s organizations. A ccording to the authors, ‘retailers, given their pivotal position in supplying choices and enhanced degrees of freedom conferred on them by government, become acutely important for the legitimization of the state and more specifically for the management of the food system on behalf of the state and the consumer interest’ (p.193). W hile this power has been maintained and developed as they have sustained their market and regulatory power, the governance of food has now also, again become a territory for new state and consumer bodies as well as private-sector interests.

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It is against this background and with the recognition that compliance with European C ommission level decisions are beginning to have a strong impact on food safety policies within the U K, and given the recent trends in corporate behaviour, this chapter attempts to map through the fresh fruit and vegetable supply chain, the extent to which the retailing industry is actively managing its supply chain by the introduction of private standards to ensure food quality and safety all along the chain. T he chapter also attempts to chart the impacts these have on the governance system. Food Policy in the UK: Extent of Changing Governance In the period prior to the mid 1980s, strategies to manage food risk depended heavily upon science-based, technological approaches. U nder the regulatory regimes that were in place then, food and agricultural production systems were regarded as being safe unless proven otherwise by technical and quantitative analyses. In this way, the state had a rational and scientific basis on which to rest relevant public health and food quality assurance policies. T his time-honoured food regulatory approach, along with periodic on-site monitoring reinforced by a graduated scheme of penalties for breaches, allowed the state to play a key role in the food supply sector (Marsden et al. 2000). T his conventional food regulatory regime was, for an extended period, successful in addressing food safety and related public health concerns. M arsden et al. (2000) in Consuming Interests traced the transformation, since the mid-1980s, in how food risk is perceived and the new regulatory framework that has emerged to mediate the new concerns. In portraying the evolution that was taking place in food safety assurance strategies in the UK from the 1980s to the 1990s, they pointed to a transition from a traditional government-led corporatist regulatory and monitoring model, to a new phase dominated by supply chain management, and food standards strategies, designed and applied by the large multiple food retailers. T his phase in the evolution of food regulation in the U K is corporatist in nature, and driven primarily by the way food safety issues are perceived by large food retailers; leaving the S tate to act mainly as an auditor rather than as a standard-setter and an enforcer of the mainstream process. H owever, because the greater assurance of food quality that the above phase (private-public) of food regulation engenders, it does not encompass the entire food supply chain, and given the continuing diversity and intensity of food risks, the pressure for further changes became apparent. In response to these new sets of relationships – a newer phase in the evolution of food safety regulation started to take shape and saw major institutional changes across various countries in the EU and attempts made to introduce policy-making processes that are more open and consultative. A s, one retailer put it: …the whole regulation environment is done on a different premise … food law traditionally was all based on legislation, and in public legislation there wasn’t

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Taking a lead on the aftermath of the Bovine Spongiform Encephalopathy (BSE) saga, the U K Government, for example, set up the F ood S tandards A gency (FSA ) in 2000, and this was followed by the inception of D epartment of Environment, F isheries and R ural A ffairs (D EFRA ) in 2001. T he government believed that creation of the FSA would put an end to the climate of confusion and suspicion that had resulted from the way food safety and standards issues had been handled in the past. T his radical new approach distanced government from the problem, while attempting to ensure that activity relating to food would be subject to public scrutiny, and that the public’s voice would be heard in the decision-taking process. A s a result of this approach, responsibility has been devolved to a single agency, based outside government departments, whose essential aim is the protection of public health and with the right to make public its advice to ministers. The UK government hopes that the effectiveness of controls on food will not in the future be undermined by overlaps, conflicting objectives or incoherence. In creating the FSA, the government sought to remove the conflict of interest that lay at the heart of the old M inistry of A griculture, F ood and F isheries (MAFF ), which was seen as compromised by both promoting the food industry and protecting the consumer interest. T he creation of the FSA with an aim to promote food safety and food standards as a non-ministerial department focusing on the protection of consumers and their interests was marked as the emergence of a new phase of food regulation in the U K. O ne which complemented the private interest model set up by the corporate retailers. Our earlier research (see Thankappan et al. 2004 for more details) assesses some of the key conceptual parameters and dynamics of this new phase in the evolution of food safety regulation in the U K, and the powers responsible for shaping this current regulatory framework. Europeanization of UK food policy It is recognized that the EU is increasingly the main source of food law that needs to be formulated in the U K. D irectives covering food composition, food labelling, food marketing standards, additives, contaminants, nutrition, adulteration and food fraud provide a constant stream of new legislation. A clear example is the sentiment, expressed by the D epartment for Environment, F ood and R ural A ffairs (D EFRA ) and the FSA , that the U K Government did all that was possible to consult with key UK stakeholders on the implementation of UK food law, but that

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the decisions on standards were often made at a EU , rather than a national, level. This thinking was reflected in our interviews with retailers: …the vast majority of legislation now is definitely European. (U K R etailer)

S imilar views about decisions on standards being often made at EU , rather than national, level were also expressed by a consumer interest group. It argued: …legislation on all aspects of farm animal welfare has been European based. It has come from a directive that’s been agreed on a European level and has been taken by the UK and implemented directly into UK law with very few changes, very few additions. And now we have the situation where we know that any directive will be almost verbatim translated into U K legislation and that nothing else will be brought in and changed.

T he general pattern so far has been one of a gradually increasing set of rules on how to conduct European business. T hus there has been a proliferation of ‘guidance’, whether through the use of precedents or of codified rules. From the preceding interview extracts we can identify some of the key facets, and more specifically dynamics, of the gradual Europeanization of UK food policy. This new transition brings about challenges for the various interest groups and their inter-relationships. W e can see an increasingly wider diversity of organizations playing a European role and seeking to influence as well as to articulate different knowledge concerning foods, health and ethical issues. F or example, animal welfare groups and the consumer groups now have to tackle the intricacies of issues such as the precautionary principle, GM and traceability. Part of Europeanization now involves accommodating a wider and more disparate range of concerns and interests than those just associated with the quality of foods and safety baseline. Rising consumerist and institutionalization of policies It was clear from the interviews that most of the consumer interest groups now claimed to play a pivotal role in influencing policy-making. They seemed to be more vociferous and responsive to consumer advocacy. T he following excerpts from our interviews highlight this: …it’s (food safety) an important issue because it’s what consumers are very much concerned about, and we are aware that consumers tend to see these issues as a bit of a package, there is safety, there’s animal welfare, there is a natural form of production, there are these various values that consumers go for…

The views reflected by the private interest groups were similar to the consumer interest groups, in arguing that the consumers play a vital role in the policy making

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process; and that the private interest groups in turn, value and communicate the consumers’ perceptions into the decision making process. One retailer argued: I’ve got personal views on consumer groups. A lot of the consumer groups do an awful lot of good, they are almost a kind of conscience of society and I think have a very important role to play in terms of ensuring that consumers perceptions are fed into the decision making process, but at the end of the day there has to be a balance at the various levels. I think they are knowledgeable, they are articulate.

Considering the importance of the consumers in the policy-making process, regulatory activity of the food control organization now establishes well-designed and well-publicized procedures for receiving and considering consumer and industry inputs at the policy-making level. A Defra representative stated: We have a division which is marketing and consumers and that provides us focus for consumer considerations.

Complex private interest model of food regulation The earlier phase of our research identified significant developments where the S tate, corporate and private interests, consumers and social interest groups build relationships in response to the need for accountability within the agri-food chain. T his represents the development of a more complex public/private set of relationships, which now embodies new public institutions like the European Food S afety A uthority (EFSA ) and the U K FSA and a greater competitiveness to react to consumer and media concerns. …I would say that this (food safety regulations) has been more commercially driven than government driven. I would say government is catching up with what the commercial side of the game has actually got into. I mean, I’m very pleased that it has because it then means everybody, by law, has got to conform to the same standard, and we are, as far as I’m concerned, I think right at the front of the game. O ne of our objectives here has always been to provide safe food for people to eat and I don’t have any problem in anybody, who ever wanted to, coming and asking us what we’re doing, or if they wanted a traceability or whatever I wouldn’t have any problem in providing that. I don’t have any problem with that whatsoever. (U K F resh Produce Grower)

The Food Standards Agency in the framework of the private interest mode W hile there were criticisms on the way the F ood S tandards A gency functioned, some suppliers/manufacturers were of the view that the A gency has done a commendable job; and that it is now more willing to consult the industry. T he

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transparent policy adopted by the A gency and the efforts made to dispel panic through its vast communication procedures among consumers were also appreciated. …things have changed now, for the better in the last few years, with the creation of the F ood S tandards A gency and D EFRA and they’re much more willing to consult with the industry. (U K F ood M anufacturer)

Views expressed by one of the private interest organizations reflect the fact that they appreciate the different mechanism of functioning of the FSA , as compared to the MAFF . The Food Standards Agency definitely thinks differently to what MAFF used to be, they are far more willing to discuss complicated issues in public and through that come to sensible certain decisions, where MAFF would have been absolutely petrified of having the discretion in the first place. So the FSA is dealing with is actually the most noticeable things, it’s done easy, its just that everything is open. W e don’t have secrets and their view is very clear that their view is to protect the customer. (U K R etailer)

The emergence of a hybrid model Private interest groups (particularly retailers) are increasingly playing a major role in (re)shaping the UK food policy; further, there is a more flexible and participatory relationship between the private interest, policy and regulatory interest and consumer and social interest groups. T he latter indicates that this is an amalgamation of a state-private sector model of food regulation; where there is a specific response from public and private sectors to the various pressures on food regulation (for example see S mith et al. 2004). T his complex model seems to emerge as a response to the (post BS E) food regulation pressures in ways which safeguard the broader macro-economic and political concepts of the European Internal Market (EIM) and increasingly integrated exchange of food goods within and beyond Europe, while also simultaneously enunciating new standardized and ‘non-competitive’ greater controls in the name of the European consumer and public interest. T he emerging model of food regulation has begun to lay a foundation for a more, all-inclusive and business-led regulatory system based on appeasing consumer and private sector apprehensions. A nd it appears (in the context of the U K at least) as though this trend will be maintained by the interaction of a larger number of actors and policy networks, which, in turn, makes the evolution process more complex and potentially contingent. In this chapter, the case of fresh fruit and vegetable sector is used to explore this hybrid model which is playing a pivotal role in reshaping the U K food policy.

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The Operation of the New Hybrid Model: The Case of Fresh Fruit and Vegetable (FFV) Sector Globalization of FFV trade C onsumer spend in the convenience store sector is growing and fresh produce is set to play a key role in the battle for market share. A report on convenience retailing, 2005 by the Institute of Grocery D istribution (IGD ) states that 20p in every pound is spent on food and grocery in convenience stores in a market which is now worth £23.9 billion. A ccording to a survey of 6000 stores in the U K by the IGD , fruit and vegetables sales have almost doubled. Sales have grown from 2.3% in 2003 to 4.1% in 2005. FFV is growing significantly in terms of sales contribution. The forecourt area has also seen significant change. Many stores have seen strong growth, with 18.8% of forecourts now stocking fresh produce (IG 2005). F resh fruit and vegetables accounts for 61.3% of all sales, and this sector has grown by 1.2% at current prices in 2000, primarily as a result of increased sales of fresh fruit and fresh green vegetables (UK Food Market Review 2001). T rade liberalization and advances in post harvest technology and long distance chains demand for healthy foods and foods from market ‘niches’ often reflecting ethnic variety and traditions (Goodman & R edclift 1991). T o meet the increasing consumer demands for FF V in the W estern world; international trade of FF V is increasing in scale and variety. T his is a trend that has been encouraged by a liberalizing international and national regulatory framework associated with the General agreement on Tariff and Trade/ World T rade O rganization (GATT /WTO ), International M onetary F und (IMF ) and W orld Bank policies, and has been further facilitated by considerable improvements in communications and packaging technologies (Barrett et al. 1999). FF V exports from the developing world, has become a major growth sector in international trade (Friedland 1994; Jaffe 1995; Thrupp 1995). At the same time agricultural networks have become increasingly global (Bonnano et al. 1994; F riedland 1994). T his change in demand as also discussed in our earlier research is consumerled and is articulated in the U K by the powerful retailers, who are increasingly adopting a global sourcing policy to satisfy these new demands (Barrett et al. 1999). Shucksmith (1993), Ilbery and Bowler (1998) state this shift in consumer demand and subsequent changes in production methods in the D eveloped Market Economies (DMEs) as a part of the Post-Productivist T ransition (PPT ). A transition, that extends throughout the entire food chain, from production and processing to consumer choices and the marketing systems that have evolved to link them.  ������������������������������������������������������������������������������ T he term Post-Productivism encompasses both micro and macro changes and pulls together a wide range of rural issues. It captures, within a single catchphrase, problems of land-use planning, rural development and both on farm and off-farm social and economic change (Evans et al., 2002).

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W ith the increasing emphasis given to consumption of fruit and vegetables as part of a healthy diet, and the importance of a varied and round-the-year supply of high quality fruit and vegetables for enhancing the image and competitiveness of supermarkets, demand for imported fruit and vegetables in Europe is substantial and likely to increase. Many non-EU exporting countries have responded to this demand due to the relatively high returns per volume for horticultural crops compared to other agricultural exports, seasonal and climatic advantages, lower labour costs, and promotion and support for export horticulture from international aid agencies. S ince horticultural production and processing is very labour intensive, many people are employed in the industry. A n estimated 45 million people depend on export horticulture for their livelihoods in African, Caribbean and Pacific (ACP) countries (Eurostat 2003). T he growing emphasis on quality standards and public concern about food safety in the developed world have led both governments and retailers to set increasingly high standards on production and processing methods, and these are putting increasing pressures on suppliers. T he European U nion (EU ) pesticide legislation has contributed to this trend towards increasingly stringent standards, and has generated particular agony amongst those involved in the fresh produce industry. Implications of EU Legislation in the FFV Sector There are two interlinked EU legislative processes associated with pesticide use which are affecting growers exporting fruits and vegetables to the EU : the M aximum R esidue Level (MR L) H armonization Programme and the Pesticide A pprovals R eview Programme. MRL harmonization programme S ince 1993 the EU has been implementing a programme to establish harmonized maximum residue levels (MR Ls) which restrict levels of pesticide residues in foodstuffs sold in Europe. MR Ls for foodstuffs are established both nationally and internationally with the key objectives of: a. controlling the correct use of pesticides in terms of the registered use; b. permitting the free circulation of food commodities that have been treated with approved pesticides and comply with the established MR Ls; and c. minimizing the exposure of consumers to harmful or unnecessary. T he stated aims of the EU harmonization programme are to iron out current inconsistencies in national MR Ls in the different M ember S tates, by establishing common and obligatory MR Ls for all active ingredients approved for use within the EU, based on systematic and scientific procedures. The relevant EU Directives

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establish obligatory MRLs for specific crop/active ingredient combinations where sufficient data is available, and also specify what data is required to establish an MRL where data are not currently available. Where there is insufficient data, the EU has left the MR L position as an ‘open position’ for a limited period of time. During this period, data collected and analyzed according to defined procedures can be submitted to the EU to defend the establishment of an MR L, which is usually done by agrochemical companies, but can also be done by other parties. If the period expires and no acceptable data has been received, then the MR L is set at the limit of determination (LOD ), that is, analytical zero. Pesticide approvals review programme T his programme aims to systematically review the registration of the 823 active ingredients approved for use within the EU prior to 25 July 1993. A s with the MR L harmonization programme, the continued registration of a pesticide depends on appropriate data being generated and submitted by interested parties, again usually agrochemical companies. T his is indicative of the fact that, in practice, only those active ingredients which are commercially important are likely to remain registered for use. Consequences of the regulation It is clear that the two programmes will together lead to: a. a withdrawal of approximately 350 of the 823 active ingredients from the approved list (although producers outside of the EU may be able to secure import tolerances for some of the 350); b. a substantial increase in the number of crop/active ingredient combinations for which MR Ls will be set at LOD . T hese programmes are causing and will continue to cause problems for EU growers; the impact on growers exporting from non-EU countries to the EU is likely to be particularly harsh. Growers of tropical, sub-tropical and out-of-season fruit and vegetables are being particularly hard hit by the legislation because a disproportionately high number of relevant MR Ls are set at LOD , and many of the most widely used active ingredients are likely to be phased out through the approvals review programme. This situation has arisen because, first, agrochemical companies are not likely to want to invest in generating and collating datasets to defend registration of, or set MR Ls for, older, out-of-patent pesticides; yet these pesticides also tend to be cheaper and more widely available, and hence widely used, in developing countries. S econd, agrochemical companies have in general only been interested in generating data for establishment of MR Ls for crops they classify as ‘major crops’, that is, crops of major economic significance, for example bananas and citrus fruits. In the UK,

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the fresh produce industry has worked with the government to generate data for establishment of MRLs for key crop/active ingredient combinations which were not being defended by agrochemical companies. While the two programmes could potentially benefit exporting countries through encouraging more rational use of pesticides, which in turn could lead to health, environmental and sometimes economic benefits; the current process of implementation is such that these benefits are not easily realized. The communication of the legislation and its implications has been poor, as a result of which exporting countries have not had time to respond by defending essential MRLs or by making alternative pest control measures available to their growers. European markets are currently not willing to lower cosmetic and other quality standards, so growers cannot risk anything but very low levels of pest and disease infestation. A s a result, growers and exporters especially from the developing countries are likely to face increased costs of production at least in the short run, due to the reduced options for pest control, making export production even more risky. Further, due to the increasing demand from importers for traceability systems, that is, systems which allow any irregularities to be traced to the ‘offending’ producer. These factors are likely to have a negative impact in the affected exporting countries, in particular. There is a risk that smaller and less well organized export industries may be abandoned by EU importers because they are not able to provide appropriate pest management/Integrated Pest M anagement (IPM ) training to growers, set up robust traceability systems, or to conduct their own trials on new pesticides to speed up the process of national registration of EU -approved pesticides. S mall-scale growers, especially independent smallholders, may be abandoned by exporters, because exporters may consider the costs of training and running traceability systems for a large number of dispersed, small production units, outweigh the benefits of sourcing from smallholders. Even if smallholders still have the opportunity to supply exporters, they may find it difficult to continue exporting due to the higher cost of EU -approved pesticides, extra costs passed down by the exporter, and/or unacceptable increases in labour requirements for implementing non-chemical pest control methods. Role of Retailers in FFV Supply Chain Retailer driven chains T he retailing industry continues its central position in the food system due to its capability to create and respond to the customers’ preferences. T he rapid spread of retailers in terms of market penetration and geographical reach has resulted in an important restructuring within the agri-food system in many countries around the world.

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Experts in the agri-food sector recognize that retailers influence the rest of the agricultural chain up to the farmers’ level. T his clearly indicates a power shift in the FF V distribution chain from suppliers and wholesalers towards retailers. This further weakens the bargaining power of farmers and food producers. For many producers and farmers, retailers have become their only possible outlet. F or fear of losing their business, many farmers and producers accept some of the low prices offered by large retailers and sell with low or no profit margins. In contrast, retailers often take very high margins on the fresh fruit and vegetable products they sell. Retailers are increasingly playing the role of ‘gatekeeper’ between farmers and consumers. T his has led to a wave of civil society and regulatory scrutiny of this sector in the recent years. T his is partly driven by the farm-retail price gap, and different levels of profitability between the farming and retail industries. In the UK, the total profit of all 230 000 farms has been roughly equivalent to the profit of just six supermarket chains in the recent years. The top five retailers have around 70% of the grocery market in the UK. The average return to capital in the UK is around 10–15% in the entire retailing sector compared to 0.5% in the U K agriculture (Qualmam 2001). T he retail sector has concentrated rapidly, with the top 30 retailers accounting for 33% of global sales in 2002 compared to 29% in 1999. The buying power of the retailers in a number of countries is threatening high ranking national supermarket players with extinction. European retailers also pool their buying power together into large buyer alliances such as European Marketing Distribution (EMD) and Associated Marketing Services (AMS), which raises buyer concentration to a higher level (D obson C onsulting 1999; D obson et al. 2003). In the FFV sector, in terms of industrial concentration, fresh produce market is not characterized by narrow bottlenecks in trading or processing. Governance of the chain resides at the retail end (International Institute for Environment and D evelopment (II ED ) 2003). In the FF V sector, uniformity and high quality are necessary for further processing, branding and large-scale buying by food service and retailers. T o ensure this, ways of preserving traceability and identity are needed, buyer-driven chains have therefore evolved in this sector (Gereffi 1994). These are more regulated and characterized by high levels of governance and long-term vertical co-ordination between the producers, supplier-integrators, processors and retailers. T he resulting chains have barriers to entry such as voluntary standards, codes and benchmarks. T he two main factors driving the restructuring of the FF V sector and the increasing role of supermarkets in explicit co-ordination of the chain can be  ������������������������������������������������������������������������������ See for example: and .  ����������������������������������������������������������������������������������� R eturn on equity is an appropriate method of comparing industries, than returns on gross sales. If farmers measure their return to equity as would a limited company subtracting a modest amount for labour, management and risk, they would show substantial losses.

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attributed first, to the competitive strategies of the supermarkets around product differentiation, and second, the need to control risk in the face of a more complex regulatory and consumer environment. For the UK supermarkets, FFV is a key item in the competition for market share as it is not only profitable (as it has some of the highest profit margins per square metre of shelf space of any product category in the store rivalled only by wine and chilled food (see, for example, Garcia and Poole 2002); but also one of the few products that influences consumer’s choice of stores (Burch and Goss 1999). H ence the FF V sector is an important element in retailers’ competitive strategies. R etailers are narrowing their fresh produce supply base, which is driving consolidation at all levels of the chain. Global sourcing of fresh produce by the trans-national retailers as implemented by W al-M art (see Box 6.1) with their purchase of bananas is just beginning in other fruit and vegetables. Preferred suppliers or ‘category managers’ are often integrators or growerpackers providing year round supply, through alliances with overseas suppliers. Box 6.1 In the year 2002, W al-M art, the world’s largest retailer, which owns A sda in the U K, renegotiated its banana buying. It had invited the biggest distributors to bid for a global contract to supply its stores in several countries. D el M onte, sourcing in Latin A merica, won a large chunk of the contract and because of the scale of it agreed a deal which enabled W al-M art to slash its prices. Bananas fell from £1.08p last A ugust to 81p per kilo at the end of March. Bananas are retailers’ largest selling and most lucrative item. They are known as ‘value items’, that is, shoppers know what they cost. Cutting prices on bananas would put intense pressure on the competition. O ther retailers have to follow suit and slash their prices. T he W indward Islands, which produce bananas on family farms with far fewer chemicals, could not compete. T heir fruit started to disappear from some of the shops, threatening the livelihoods of thousands of smallholders. T he episode neatly encapsulated some of the global forces that have transformed the food chain. By the end of the 1990s, three quarters of world banana trade was in the hands of just five companies: Chiquita (26%), Dole (25%), and Del Monte, Fyffe’s and Noboa (8% each). Between 1990 and 2000 the value of banana exports from the W indward Islands fell from $387m to $161m. T he foreign sales of the 100 largest trans-national companies are equivalent in value to one quarter of world trade. What is more, about two thirds of all trade takes place within companies. ‘T hat does not necessarily mean that there is no competition, but it does mean that in global markets small, fragmented producers are competing against a handful of corporate buyers’, O xfam’s report on global trade, R igged R ules and D ouble S tandards, points out. T hey nearly always lose, whether they are C aribbean tropical fruit growers or English apple farmers. Unfair Trade Winds, F elicity Lawrence, John Vidal and S teven M orris. The Guardian, S aturday 17 M ay 2003.

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Mack Multiples, for example, sells £270 million of fresh fruit and vegetables to U K retailers from over 60 countries. …the majority of whole fruits, specifically in the south, come through us…. T hey (retailers) will give us a spec. and they will say, you can use these three or four suppliers and that’s the product, these are the brands… (UK Fresh Produce S upplier).

T he level of private sector governance of the FF V sector is high especially by multiple retailers. A s the fresh produce chain is relatively short, primary producers get involved in standards and due diligence issues at an early stage. Price pressure is very important, however, and the brunt is felt by labour. U K horticulture is sustained by a casual labour force of migrant and often undocumented workers (II ED 2003). H alf of the 72 000 people employed for planting, harvesting and packing in the UK food industry are supplied by ‘gangmasters’. They provide the industry with a flexible workforce to meet the seasonal demands of planting, harvesting and packing crops and the market demands of fluctuating daily and seasonal retail requirements. …we employ a lot of East European labour and we also use labour providers. T hat’s the polite word for ‘gangmasters’. W e are trying to be a little bit more sophisticated about it, seeing as it is so much in the public eye…. I have no problem getting East European labour, and it is all legal. A s far as the labour providers, we’ve had problems there in trying to get them to be legal. A nd in actual fact, we are currently going through the process now. W e’ve actually weeded quite a lot out over the last year or two, because they seem to be getting more and more of the illegal people, and we are sorting that out… (UK Fresh Produce Grower)

A s competing interests from consumer lobbies and regulatory bodies have grown, retailers have been skilful in accommodating a wider range of the overall political shifts into their approach to promote their wellbeing. C orporate retailers at the EU level now operate both independently and jointly through organizations like Euro C ommerce (F lynn et al. 2004). In the U K, retailers have to position themselves continuously and carefully as custodians of the consumer, distinguishing themselves from both the producer and food manufacturing interests. A s the increasingly integrated European food market continues to show major food safety problems, the retailers have taken the opportunity to further embed retailer-led supply chain management. Retailers are a dominant force in the food chain, reflecting the level of consolidation in this sector. T hey in turn compete to meet the changing needs of consumers. T he processors, and ultimately farmers have to respond to the needs of consumers through the retailers. T his notion was emphasized by some of the interviewees in our research for example:

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W e have given them (retailers) the power. (Belgian Vegetable A uction body) …what you have to do in retail is to be as close as you possibly can to what your customers actually want. A t the end of the day we exist to meet the needs of our retail customers,…everything is largely governed by what the customer wants and what the sales of a particular line are… (UK Retailer)

As the direct link between the consumers and the food industry, retailers are likely to remain the main force in setting the agenda for the food supply chain. R etailers have the commercial power to force business process change further down the supply chain. …in terms of the products that we want and the standards that we want to meet, then obviously we have a fair degree of influence in what our supply base actually does, even for branded lines,…And for own label we can direct whatever standards we actually want. D own on the ethical trading front, which is more difficult, we can in theory…theoretically we can specify whatever we want wherever we want it… (UK Retailer)

H owever in reality they effect change with their suppliers which can then have dramatic changes further down the chain. T he degree of responsibility that they are prepared to take for those changes which are one or two steps removed varies with retailers. T he U K has a particularly highly concentrated and oligopolistic retail sector (Clarke et al. 2003). W ith the development of a model of supply chain management that is retailer led, power has shifted down the food chain from the farmers to the retailers. This definitely is not a new form of contractual relationship, but an important political, economic and market dimension. Marsden et al. (2002) argue that ‘the regulatory state has become critically dependent upon the continued economic dominance of the retailers in their role as the main provider of quality food goods’. T he regulatory state at least as far as food policy is concerned is also a retail state in which the large retailers act as proxies for the consumer. T his leads to the emergence of a model of retailer-led food governance. One example of this in work is the case of pesticides. Retailers are constantly seeking to reduce pesticide residues on the fruit and vegetable products sold in their stores and have required that the level of residues should be below what is required by regulatory standards. S ome retailers have a long-term objective of making all the produce they sell free from pesticide residues. It is not entirely clear how this will be reconciled with the demands for produce to be free of pest damage and to have a long shelf life.

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Trends affecting the retailers A mong the many tools available to retailers, private labels can be viewed as one of the most effective instruments for actively securing customer loyalty to a store, as labels help ensure the same product cannot be available in any other store in the local market. In implementing the private label strategy, retailers seek dual objectives: lowering retail price and enhancing product value. R etailer brands offer consumers products perceived to be of higher quality than the standard product at prices below recognized leading brand products of similar quality. R etailers across Europe have implemented private label strategies to cater to particular consumer demands, and there has been a trend to develop high-quality, differentiated private label products. T he retail share of private labels among food products is high in many European countries, as can be seen in T able 6.1. Demand influenced changes in retail strategy have implications for the way retailers choose suppliers. In deciding to implement a private label strategy, retailers consider a set of criteria when selecting suppliers and the type of product for branding. Research by Skytte and Blunch (2001) show, in addition to traditional factors like price, quality, and the ability to supply required volume, the ability to trace back products and the willingness of suppliers to engage in long-term relationships with retailers are important selection criteria. T he prominence of private labels has likely affected this shift. In response to increasing consumer demand for safety, quality, and convenience in food, retailers have adopted more proactive marketing strategies, where they try to achieve customer loyalty not only by improving service, location, and store layout but also by having more influence on the overall value creation process in the food chain. R etail changes implemented in Europe are primarily in response to consumer demands for process attributes in food. European consumers are more concerned about food safety and process attributes of food than A merican consumers. For example, over 60% of British consumers are concerned about BSE, over 50% are concerned about animal welfare and the use of hormones and antibiotics in livestock, and 50% are concerned about the use of biotechnology in Table 6.1

Private label penetration in Europe 1999

Country Volume share % U nited Kingdom 45.4 Belgium 34.7 Germany 33.2 F rance 22.1 N etherlands 20.6 S pain 20.5 Italy 17.1 Source: PLMA Yearbook 2000

Value share % 43.5 27.4 26.0 19.1 18.4 14.8 15.5

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food production (Henson 2001). In contrast, only 20% of Americans are concerned about BSE, about 40% are concerned about hormone use in livestock, and about 30% are concerned about animal welfare or the use of biotech in food production. In the FF V sector, retailer private label strategies are largely geared to provide assurances regarding sensory attributes and the levels of chemical residues in products. Private brands in this sector are less segmented in the types of branding visible on the retail shelves. R etailer brands for produce are generally associated with the integrated farming, which consumers have associated with a lower use of chemicals, and, to a lesser degree, better land stewardship. In addition, private labels are also required to meet the necessary grades specified by retailers with regard to sugar content, firmness, size, and other product characteristics. Sensory attributes, much valued by consumers, are difficult for retailers to guarantee and measure and the implementation of control and the monitoring of such characteristics can be costly. H owever, co-operation between suppliers and retailers can be mutually beneficial and tends to reduce the quality assurance costs for retailers (Brousseau and Codron 1998). Given the risks and uncertainties associated with growing and marketing produce, suppliers on the other hand, appreciate the guarantee of an outlet provided under the co-operation with retailers. T he retail branding scheme practiced in the FF V sector is mainly of the substitution type, where the retailer draws up production standards for suppliers. (Retailers) give specifications in terms of how they want the crop grown and then… well, our customer will give us the specification. (UK Fresh Produce Grower)

T he farming practices prescribed are not always precise, and sometimes it may be necessary to ascertain whether the suppliers meet the necessary standards. Production practices can be measured by maintaining a register of chemical treatments, planting dates and growth measurements, soil analysis results, and other practices. H owever, suppliers may be granted some leeway, for instance, if chemical treatments are employed when pest populations exceed a certain threshold. To avoid this contingency resulting in an erosion of consumer confidence, retailers may employ a set of clear standard operating rules and ensure that suppliers are knowledgeable about the procedures to be adopted. A good example of a similar case was highlighted by one of the U K growers interviewed in this research. …as far as we are concerned, the people who are supplying us, the stuff during the winter, are supplying to the same level and standard that we are. We know what they are entitled to use, we know where we get into problems is they are allowed to use certain chemicals and we are not. A nd there is not a lot you can do about that. We accept that there is a difference. They are not breaking the law. (U K F resh Produce grower)

A third party may be employed to ensure that suppliers adhere to the standard. T his produce scheme does not lead to the type of extensive co-operation that exists

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when a retail brand product is produced. H owever, retailers may also employ more complex schemes where producers and retailers mutually set standards with the view of adopting measures to enhance environmental quality as well as the safety and sensory attributes of products, as is evident in the following case. …for own label we can direct whatever standards we actually want. Down on the ethical trading front, which is more difficult, we can in theory… theoretically we can specify whatever we want wherever we want it. N ot quite as easy when you are dealing mainland China or something like that. (UK Retailer) …we are not (audited by each customer), because… and this is where the game starts to get a bit interesting in that if you are an M&S supplier and people know you are, then they haven’t got to worry too much. (U K F resh Produce Grower)

Such arrangements require confidence and long-term relationships between the parties involved and may result in a well-differentiated product on the retail shelf (C odron et al. 2002). T he major retailers will continue to grow and therefore consolidate their share of the UK market through the opening of new store formats especially in the convenience sector. T his will further increase the pressure retailers put on the suppliers to increase efficiency. Retailers also seem to consolidate the number of suppliers they use. I think inevitably you will see consolidation in the supply bases as people pursue efficiencies in terms of costs. (UK Fresh Produce Retailer)

In the supply networks, globalization continues in terms of international retail networks. These are now often managed on a collaborative basis across both countries and continents. In search of greater efficiency, retailers are looking for stable and predictable supply chains as it enables them to drive cost out of the system. Marketing initiatives such as consistent everyday low pricing are also driving the need to have stability in the cost of goods. This drives different kinds of commercial relationships with suppliers. T he rate at which consumers’ needs are changing is accelerating and creating more flexibility and innovation in the supply chain. This means demand is becoming less homogenous and more segmented as a result of changing lifestyles, household structures and demographics. T his in turn creates the need for a wider range of product quality, price and food solutions. Literature states the existence of three models between the retailers and supplier relationship: •

A partially vertically integrated supply chain, where there is a level of retailer ownership of processors but not farms – Integration.

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A close and long term commercial relationship with processor – Partnership. A short term arrangement, with the suppliers – T rading.

T here has been a growth in the partnership model. T his includes true collaborative partnership arrangements but also encompasses pragmatic partnerships which are not necessarily long term, but are a simple way to achieve short term needs. Both, however, are driven by the need for consistency, predictability and lower prices, all of which are easier to deliver within a partnership framework. Each retailer uses a combination of these models to varying degrees. Even where there is integration, this does not represent the totality of trade in a particular sector and partnerships are often loose groupings with relatively weak formal agreements. Growth in the partnership model is a key area of opportunity for those suppliers and producers capable of delivering the requisite goods. M ost retailers see further growth in this area as a route to a more efficient supply chain. R etailers’ rationalization of their supply base and foreign competition has led to food processors consolidating through merger or acquisition. R etailers are demanding higher technical standards from their producers and traceability of supply is gaining importance. F or example, W al-M art’s N orth A merican Pallet, Carton, and Case Initiative (NAPCCI), its Radio Frequency Identification (RFID) tracking initiative seeks to supplant generic barcodes with supply chain identifiers that will result in a unique number on each pallet, carton, and case. T he initiative has put suppliers into a position, where they are attempting to understand it, and enable them to become compliant, to technologies that are largely new to their supply chains. T here has been an associated proliferation of private standards often as part of Corporate Social responsibility (CSR) or risk management initiatives. Voluntary standards and associated codes and certification schemes are emblematic of globalization, linked as they are to the growth of international supply chains, a reduced role for state organizations and recasting of regulatory systems and voluntary self-regulation (Jenkins 2001). O ne sign of the importance now being attached to sourcing is the 1999 establishment of the Euro Retailer Produce Working Group (EUREP) guidelines for Good Agricultural Practice (GAP). The GAP protocol seems likely to become the industry standard against which national assurance schemes are benchmarked. W here there is no equivalent national scheme, producers will be inspected against GAP by a EUREP accredited verification body. Central to GAP is a commitment to adopt Integrated C rop M anagement (ICM ) practices.

 ������������������������������������������������������������������������������������� RFID tags are tiny microchips, which have been shrunk to half the size of a grain of sand. T hey listen for a radio query and respond by transmitting their unique ID code. M ost RFID tags have no batteries: T hey use the power from the initial radio signal to transmit their response.

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Development of EUREPGAP Programme for Fresh Fruit and Vegetables EUR EPGA P started in 1997 as an initiative of retailers belonging to the EuroRetailer Produce Working Group (EUREP). It has subsequently evolved into an equal partnership of agricultural producers and their retail customers. T he mission being to develop widely accepted standards and procedures for the global certification of Good Agricultural Practices (GAP). T echnically EUR EPGA P is a set of normative documents suitable to be accredited to internationally recognized certification criteria such as ISO Guide 65. R epresentatives from around the globe and all stages of the food chain have been involved in the development of these documents. In addition the views from stakeholders outside the industry including consumer and environmental organizations and governments have helped shape the protocols. T his wide consultation has produced a robust and challenging but nonetheless achievable protocol which farmers around the world can use to demonstrate compliance with Good A gricultural Practices. It is possible for producer organizations to seek an independent and transparent recognition of equivalence with the EUR EPGA P standards and procedures through a benchmarking system thereby facilitating global trade and aiding the harmonization of technical criteria. EUR EPGA P members include retailers, producers/farmers and associate members from the input and service side of agriculture. Governance is by sector specific EUREPGAP Steering Committees which are chaired by an independent chairperson. Both the standard and the certification system is approved by the Technical and Standards Committees working in each product sector. These committees have 50% retailer and 50% producer representation creating an effective and efficient partnership in the supply chain. The work of the Committees is supported by FoodPLUS a non profit limited company based in Cologne, Germany. EUR EPGA P was driven by the desire to reassure consumers. F ollowing food safety scares such as BS E, pesticide concerns and the rapid introduction of GM foods consumers throughout the world are asking how food is produced; and they need re-assuring that it is both safe and sustainable. F ood safety is a global issue and transcends international boundaries. M any EUR EPGA P members are global players in the retail industry and obtain food products from around the world. F or these reasons a need has arisen for a commonly recognized and applied reference standard of Good A gricultural Practice which has at its centre a consumer focus. These factors sometimes known as ‘the triple bottom line: people, planet and profit’ recognize the importance major corporations and multinational supply bases place on ensuring agriculture is undertaken in a responsible way that respects food safety, the environment, workers welfare and the welfare of animals. Good A gricultural Practices, which are understood by producers the world over, deliver clearly defined outcomes in these areas. By adhering to good agricultural practices risks in agricultural production is reduced. EUR EPGA P provides the tools to objectively verify best practice in a

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systematic and consistent way throughout the world. T his is achieved through the protocol and compliance criteria. T here are about 214 control points divided into 49 major musts, 99 minor musts and 66 recommended, a diagrammatic representation is given in F igure 6.1. EUR EPGA P’s scope is concerned with practices on the farm, once the product leaves the farm they come under the control of other C odes of Conduct and certification schemes relevant to food packing and processing. That way the whole chain is assured right through to the final consumer. Another key goal is to provide a forum for continuous improvement. The technical and standards committees, consisting of producer and retail members, have a formal agenda to review emerging issues and carry-out risk assessments. S tages in Production of Produce C overed by EUR EPGA P C PCC

C rop

Produce

N /A A answers A llowed W hen N o Products H andled

3

4

5, 6 7, 8

9

10

S eed, N ursery

S ite S election

C rop Production

H arvest & T ransport

S torage, W ashing, T reatment

11 12 & 13

Environment, W aste & Pollution, O perator H ealth, S afety & W elfare

1, 2& 14

D ocumentation, T raceability & Quality S ystem R equirement

A dditional Quality M anagement S ystems R equired for F armer Groups

2 Product Process F low

Figure 6.1

N o EUR EPGA P C PCC S ections

A dditional EUR EPGA P R equirements

EUREPGAP’s control points and compliance criteria for fresh fruits and vegetables

Source: C ontrol points and compliance criteria, F ruit and vegetables version 2 2004 <www.eurep.org>

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T his is a rigorous process, following the principles of H azard A nalysis and C ritical Control Points (HACCP), and involves experts in their field leading to revised versions of the protocol. Other competitive strategies adopted by retailers Several supermarkets are trying to generate competitive advantage through superior environmental performance. …the main thing with retailing, because selling products and anything can be copied, then the real bit of advantage is to do whatever it is first. Industry leadership are lead first to do the right thing, which means speed of action and second-guessing what your competitors are going to do on a whole range of different issues, making sure you don’t get wrong footed and certain of our competitors where we used to just get on and trade in our own way and do our best… (UK Retailer)

A s well as being a part of EUR EPGA P, T esco, for example runs its own assurance scheme, N ature’s C hoice, which, according to the company’s strategic technical development manager, is ‘significantly broader and deeper than EUREP’. This food labelling scheme, developed by T esco is essentially a code of practice and T esco has adopted a policy that they would only accept produce accredited with the N ature’s C hoice label. T hrough this scheme, accredited growers are audited against seven criteria, one of which is that growers have to demonstrate that they are maintaining and enhancing the nature conservation and landscape values of their properties. N ature’s C hoice is underpinned by a ‘green’ philosophy of stewardship and essentially aims to combine production efficiency and conservation values through the C ode of Practice. T o achieve accreditation under N ature’s C hoice, a policy statement (effectively an action plan) needs to be developed for each of the seven elements. Grower adoption of the C ode of Practice must be demonstrated beyond a six-month period before Nature’s Choice certificates are issued. The code of practice includes guidelines on the use of chemical inputs, energy and water efficiency, worker health and safety, and wildlife and landscape conservation. At least 95% of Tesco’s fresh produce sourced in the UK is now certified under the scheme and the standards are being introduced to suppliers worldwide. S ainsbury’s, has developed a policy on the sourcing of wild products, which seeks to ensure that threatened species and habitats are not harmed, for example, shells, moss, crocodile meat, plant bulbs and sea food (based on the  ������������������������������������������������������������������������������������ T his policy recognizes that the uncontrolled harvesting of animal and plant species from the wild can have serious effects on wild populations which are under increasing pressure from both trade and land development. A ll S ainsbury’s suppliers have been provided on guidance on how to address and prevent these effects.

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CIT ES  Convention and consumer concerns). It is also working with suppliers on an initiative that encourages farm-level biodiversity action plans. S imilar views were expressed by various actors in the supply chain, as is evident from the following excerpts: …we have these games that go on, so. It’s a fiercely competitive market at the present time and that can get a little bit excited… (UK Retailer) …in terms of the salt-reduction program, Tesco’s already announced they’re doing this traffic light system on products, and that’s obviously jumping ahead of what the FSA are wanting to do. T hey (FSA ) want to develop it in conjunction with everybody so everybody’s singing off the hymn sheet. (U K F resh Produce R etailer) …that’s (self-regulation) something that we are seeing an advantage to, to our competitors. Everybody has got the same produce so in some ways we have to, it has to be competitive with the competitors, and also because it’s always important to look a little bit ahead so… (Belgian Vegetable Auction body)

Even if higher environmental standards can enhance brand reputation, retailers face another challenge getting the message across to consumers. A s one of the major retailer states: The key, is to … develop tangible, quantifiable measures that assure customers that we are taking responsible decisions with our suppliers to protect and enhance the environment. T his needs to be done in a way that customers can relate to easily. (U K R etailer)

In a culture of harsh price competition, fuelled by over supply and governed by the power imbalances of market concentration at the retail level and fragmentation at the farmer level, retailers will inevitably pass on the added costs to the weakest link in the supply chain-and that is the farmers. The following quote highlights the issue: …When they (retailers) have a problem, instead of trying to find a fundamental solution for their problem, they try to find a solution which should be placed, or the effort should come always from the grower. (Belgian Vegetable auction body)

S ome producers are calling for mechanisms to allow more transparent reciprocal auditing. This would enable them to check how their produce is being labelled and marketed. Such measures would help reassure farmers that food assurance schemes are legitimate commitments.  �������������������������������������������������� For more details see .

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Ethics, Law and Society: Volume IV …why should we risk taking the freedom of a supplier to contract with other people if there’s no need for us to do that. In a way, it would look improper to do that …. So we don’t put any restrictions on any of our suppliers as to who else they trade with. W e wouldn’t do that. Philosophically it’s not something we would do… (UK Retailer)

Consumer involvement: A vital ingredient A race to reach the top rung on the environmental performance ladder, requires not only a more equitable sharing of the costs along the supply chain, but also customers who are well informed about the food they eat. T he danger of proliferating schemes by individual supermarkets, on top of the existing national assurance programmes and umbrella initiatives such as EUR EP, is that the consumer will be left more confused than ever. Research undertaken by the National Consumer Council, shows that consumers are completely baffled by the range of schemes, logos and claims that surround the food industry. Consequently, they are just as likely to see such schemes as purely marketing hype, with nothing substantial behind it. Further, to the proliferation of such private schemes, some key definitions and legislations vary across Europe. F or example one of the Belgian fruit and vegetable auctioneers stated: It would be better if there would be one standard, one European standard. T hat would be a combination of most of the systems, because that is a problem that there are so many systems that you need so many paperwork and then so much work also for the producer… (Belgian FFV auctioneer)

Y et another Belgian fruit and vegetable auctioneer stated: …For example, the non-uniformization in Europe of food safety residue harmonization, in Europe started in 1991 to uniformise the pesticide regulations. They have not even achieved 15% of it, so there’s the problem. And that’s not only a problem for the farmers, there’s a problem for the co-ops, and there’s a problem for the retailers, too. The big discussion with the retailers now is… should there be compliance with country of production or country of destination? A nd then farmers will say, we can’t comply with country of destination because we don’t know where it will be heading to… (Belgian FFV Auctioneer)

Impact of Retail Governance on FFV Production in the Developing Countries O ver the recent years, sizeable FF V export-oriented horticulture industries have developed in some of the African countries for the European market. A similar niche is filled by Guatemala, Costa Rica, Columbia and Mexico for exports to the US (T hrupp 1995). T his is an area where the developing countries have been able

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to engage in global markets in the export of tropical crops to meet supermarkets’ demand for consistent year round supplies of fresh produce. R eturns however are highly concentrated at the end of the chain in the importing countries. D olan et al. (1999) found that for mangetouts imports from Zimbabwe, 45% of retail value is retained by supermarkets to cover costs such as wastage and to ensure a profit margin while the producer share was only 12%. The team found very similar figures for fresh vegetable exports from Kenya, with producer and supermarket shares of 14% and 46% respectively. Supermarkets’ standards focus on food quality and management of risk (safety and traceability). Pack-houses are required to have increasingly sophisticated equipment for tracing and labelling produce which increases the scale and cost of operations. T here are also standards for environmental protection and welfare of workers even specifying the brand of fire extinguisher used in packing houses, but suppliers report that these are secondary requirements of supermarket buyers. But the high capital requirements associated with meeting standards for due diligence may be a major barrier to market entry and driver of differentiation. Quality standards may improve pesticide management and also indirectly drive quality competition in domestic markets. But as Freidberg (2003) states, ‘Efforts to impose such standards on A frican horticultural exports thus respond more to the particular anxieties of corporate retail management rather than to the concerns of workers in the horticultural export industry themselves’. Based on observations in the S an F rancisco valley of post-liberalization Brazil, C avalcanti and M arsden (2004) echo this perception of retailer imposed quality protocols as a ‘R e-regulation of agriculture along private lines, around a particular construction of consumer interests which is having severe implications for farm structure’. Private and Public Systems of Regulation in the FFV Sector A wide array of both public and private safety control systems has evolved for any food product being offered for sale to consumers in retail stores or food service operations as detailed in F igure 6.2 (H enson 1997; C aswell 1997; C aswell & Johnson 1991). Public quality control systems involve direct regulation in the form of standards, inspection, product testing, and other programmes attempt to ensure the quality of the product by specifying how it is produced and/or its final quality. Product liability involves punishing companies that produce goods of insufficient quality through damage awards to those harmed by their actions. D irect regulation and product liability may complement or substitute for each other (or even conflict) in establishing incentives for companies to engage in effective quality control. Private systems include self-regulation and various forms of certification by other parties. S elf-regulation includes internal control systems that assure product quality, where the company sets, monitors, and self-certifies the control  ������������������������ U npublished II ED report.

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Public Safety Control System

Private Safety Control System

D irect R egulation

Product Liability

S elfR egulation

S tandards, inspection, product testing and specifications on how a product has to be produced

Punishing companies that produce products of insufficient quality

Internal control systems that assure product quality

Figure 6.2

Certification

S etting of product quality standard and their monitoring and certification by third parties

Food quality control systems

Source: A dapted from H enson, 1997; C aswell, 1997

parameters. It can take place at the level of the individual firm or be instituted by trade organizations that cover the predominance of market supply. Certification involves the setting of product quality standards and their monitoring and certification by parties outside the firm, for example customers, industry trade associations, or bodies such as the International O rganization for S tandardization (ISO). Such certification may be voluntarily sought by the company or required by those with whom it does business. T he relative importance of these public and private modes of food safety control will reflect, amongst other things, the nature of public regulation and the structure of the food supply chain. T he product liability system for food products in the U K has hinged on the concept of ‘due diligence’. Evidence that a company took all reasonable precautions and exercised all ‘due diligence’ to avoid commission of an offence provides a defence against liability. T his public provision has motivated extensive private quality control activity amongst food companies that want to be able to prove they have exercised ‘due diligence’, based predominantly on third party certification (Henson and Northen 1998; Bredahl and Holleran 1997; Zaibet and Bredahl 1997). T he state as a regulator in food safety is far from new; while at the same time it is known that food safety has been a concern for both public and private interests, and that the distribution of responsibility among public institutions, manufacturers, distributors and individual consumers in securing safe food has changed historically. S hifts associated with the more recent development of ‘the regulatory state’ necessitates a change in governmental control, where traditional mechanisms of government tends to be replaced by newer mechanisms, for example, privatization, contracting out and various means of standard setting linked to more or less independent agencies for monitoring and enforcement. T hese are examples of

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governing at-a-distance, often involving the ‘self-regulation’ or ‘quasi-regulation’ of businesses and consumers (M oran 2002). T he regulatory state model has been widely criticized for its centrist conception of state power (Black 2000, 2002). Private actors, like firms, industries, private associations and N GO s, regulate their own members, suppliers, costumers and internal affairs (Teubner 1998; Black 1996). The significance of this private governance will increase with ongoing organizational growth, mergers and acquisitions. T his emerging tendency is often done by means of private contracts stating the proper expectations and responsibilities of the parties involved (S hearing 1997). T he way these contracts are formulated will depend largely on the international and commercially available voluntary standards. S uch standards offer procedural norms based on ‘best practice’, third-party-based monitoring and auditing systems and procedures for the managing of deviations from norms (Brunsson and Jacobsson 2000; Power 1997; S cott 2003). It has been noted that the balance has shifted from one set of private actors (producers) to another set (retailers). T his phenomenon has been very obvious in the UK, where the big retailers have more or less taken over from farmers and manufacturers in taking the lead, both in terms of initiatives towards public authorities, in private regulatory efforts, and related to consumer trust (M arsden et al. 2000). H owever, in N orway there has not been a parallel shift (Jacobsen & Kjærnes 2003). H ence it could be assumed that these shifts are strongly country and context specific. Stigler (1971) noted that public regulations often reflect or have been ‘captured’ by private interests. Based on this perspective, according to M ajone (1994): ‘regulation is not instituted in the interest of the public at large or some sub-class of the public, but is acquired by an industry and designed and operated primarily for its benefit’. O ne of the retailers interviewed in this research had the following view: I think the driving force has to be two things. A. is product safety and the fact that obviously we have to show due diligence and B. obviously to protect the brand image, which is probably even more important nowadays. (U K F resh Produce R etailer)

Co-ordination based on an understanding of stakeholders blurs the distinction between public and private regulations. C orporative, consensus oriented processes of decision making have been very significant in Europe. The more recent stakeholder versions, including the state and usually also consumers, seem important in food safety policies both at the national and the EU levels (H éritier 2003). …we want to have it as uniform, and then our lawmakers have to provide the law for that. S o we have that for two things. W e have it for the integrated fruit production, on the one hand, and we have it also for the leafy vegetables under glass house. (Belgian FF V auctioneer)

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Ethics, Law and Society: Volume IV …by law it is required to have a pre-harvest residue analysis. So we have a preharvest residue analysis. Because 80% of the lettuce is sold through producers’ organizations and is controlled, and was controlled on voluntary basis, but 20% was not controlled and there we were afraid. People who were not in order for selling through the organised markets went to the non-organised markets, with product which is poor in quality or which had too high a residue content. If in Germany they write in the paper that the Belgian salad or Belgian lettuce has a high content in the residue our sales drop, so we want to make sure that everybody is following the same standards and that’s why we want the government to step in and to make it a governmental regulation, a regulation for everybody. (Belgian FF V auctioneer)

T he increased reliance on the part of the S tate on more indicative instruments of regulation, ‘like guidance, circulars deployed with the intention of shaping the behaviour of those to whom they are directed’ (S cott 2002), without having to use laws and direct commands means that this allows for a reduction or an escape for some of the procedural costs involved. T his points to a process whereby norms and standards are (still) decided in a public setting, but where the responsibility of market actors has become more emphasized, more visible and cost effective. S ome of the private sector respondents agreed that: …the whole regulation environment is done on a different premise than…food law traditionally was all based on legislation, and in public legislation there wasn’t anything….people weren’t expected to do anything on the basis of good will or arms research, yet on the environment side it’s been different from that in arm-twisting packaging, waste regulation, and a whole plethora of other controls and climate-change levy or whatever. There’s been lots of quasi-soft law… (UK R etailer) …we see different interpretations, you know, you can have two stores in two bordering counties and see two interpretations on a piece of legislation. (U K F resh Produce R etailer) O ne of the biggest issues I have is, is where we do transgress is trying to convince the enforcers to actually go down the route of using the enforcement concordat. (U K F resh Produce R etailer) A nd dealing with the issue through the enforcement concordat rather than the more formal route. A nd whilst everybody has signed up with the vast majority of enforcement agencies have trading standards and environmental, health labels, have signed up to enforcement concordat. It’s given lip service. T hey say that they’ve signed up to it, but in the end it still gets pushed to one side… (UK Fresh Produce R etailer)

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I mean, I would say that in that area, this has been more commercially driven than government driven. I would say government is catching up with what the commercial side of the game has actually got into. I mean, I’m very pleased that it has because it then means everybody’s, by law, has got to conform to the same standard, and we are, as far as I’m concerned, I think right at the front of the game. O ne of our objectives here has always been to provide safe food for people to eat and I don’t have any problem in anybody, who ever wanted to, coming and asking us what we’re doing, or if they wanted a traceability or whatever I wouldn’t have any problem in providing that. I don’t have any problem with that whatsoever. (U K F resh Produce grower)

F ood manufacturers and food retail outlets have a great deal of capital invested in their brand images. Legal liability and loss of consumer confidence can have devastating effects on a company’s market share and long-term survival prospects in a highly competitive market. This creates a clear incentive for firms to move towards closer strategic partnering relationships with suppliers. The current food safety legislative environment is encouraging firms to follow an organizational strategy aimed at building closer supply chain relationships. T his is occurring in a number of countries despite the differences in legislation between these countries. T he reasons for these similar strategic developments given the differences in regulation is perhaps due to the core problem at the heart of food safety, that it creates information asymmetries along the supply chain. C loser supply chain relationships are one way in which to reduce these information asymmetries and the resulting transaction costs. Conclusions T he quality and safety of FF V produce are controlled by different public and private entities at different points in the supply chain. F igure 6.3 maps the various stages of the fresh fruit and vegetable supply chain in the U K and the EU and the corresponding stages where public and private standards operate in the chain. It is very clear that in the FF V sector, more retailers have developed their own ‘codes of practice’ including good agricultural practice (GAP) and specifications related to intrinsic and extrinsic qualities. These private specifications are based on national and EU food safety and quality regulations and in most cases exceed these regulations. O ur earlier research (S mith et al. 2004 and Thankappan et al. 2004) indicated that retailers are becoming more influential in food policy-making in the UK and EU , in the name of the consumer and public interest. C onsumers are increasingly influencing the food system by selection or rejection of food considered healthy or hazardous; and large-scale retailer’s organizations acting as intermediaries between the production and consumption are both very sensitive to these and attempt to shape consumers’ preferences. T his represents the development of a

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EUR EPGA P Farming

O verseas Growers

UK Growers

Private Interest Groups

NATUR E’S CHOIC E S QF 1000

O verseas Producer C o-operatives

U K Producer C o-operatives Agricultural Logistics

PRI VAT E STANDARDS

Food Logistics

BRC C atering S uppliers

F resh Produce W holesaler

C aterers

Figure 6.3

Government/ Policy and R egulatory Groups Private Certification Bodies

W holesale Market

Consumer

S QF 2000

Vegetable Packers/ Marketers

Manufacturing

Retail/ Catering

HACC P

F arm Gate and F arm S hop S ales

FSA

IFS

HACC P Supermarkets

S QF 3000

Independent R etailers

C onsumers

RIS K COMMUNICATION

Fresh fruit and vegetable supply chain and its regulation

more complex public/private set of relationships, which now embodies new public institutions (like the EFSA and the UK FSA) and a greater competitiveness to react to consumer and media concerns. In this chapter, the case of the fresh fruit and vegetable sector is used to explore this hybrid model which is playing a pivotal role in reshaping the U K food policy.

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T his chapter has sought to provide an overview of the fresh fruit and vegetable supply chain. It has concentrated on the extent to which the retailing industry is actively managing its supply chain by the introduction of private standards to ensure food quality and safety all along the chain. O ver recent years, the U K consumers are giving more emphasis to aspects of quality and convenience than to price and quantity. F urther, there is an increasing demand for healthy foods and foods from market ‘niches’ often reflecting ethnic variety and traditions. T his change in demand is consumer-led and is articulated in the U K by the powerful retailers, who are increasingly adopting a global sourcing policy to satisfy the new demands of the consumers. Governance of the chain resides at the retail end. One example of this at work is the case of pesticides. Retailers are constantly seeking to reduce pesticide residues on the fruit and vegetable products sold in their stores and have required that the level of residues should be below what is required by regulatory standards. T he reigning position of the retailers is made possible in the FF V sector because: In the FF V sector, uniformity and high quality are necessary for further processing, branding and large-scale buying by food service and retailers. For the UK supermarkets, FFV is a key item in the competition for market share as it is not only profitable (it has some of the highest profit margins per square metre of shelf space of any product category in the store rivalled only by wine and chilled products) but is also one of the few products that influence consumer’s choice of stores. Buyer-driven chains have therefore evolved in this sector. T hese chains are more regulated and characterized by high levels of governance and long-term vertical co-ordination between the producers, supplier-integrators, processors and retailers. T he resulting chains have barriers to entry such as voluntary standards, codes and benchmarks. The growing emphasis on quality standards and public concern about food safety have led both governments and retailers to set increasingly high standards on production and processing methods. T here has been an associated proliferation of private standards often as part of Corporate Social Responsibility (CSR) or risk management initiatives. Some of the key private standards operating in the fresh fruit and vegetable sector are: EUR EPGA P, T he Global F ood S afety Initiative (GFSI ), International F ederation of O rganic A griculture M ovement (IFOAM ) and so on. T he retailers have developed their own quality assurance systems to demonstrate due diligence as a defence against any food safety breakdown. A logical sequence therefore, is to explore their integrating supplier activities and demand that they develop systems to meet retailers’ due diligence position. R etailers use private standards to standardize product requirements over suppliers. T he private quality and safety standards imposed by the retailers relate to the physical aspects of the products, as well as to cost, delivery and volume requirements, thereby enhancing supply chain efficiency and lowering transaction costs. Private standards of a given chain are also designed to ensure (at a minimum) that public standards are met in all the markets in which the retail chain operates.

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O ften, retailers design private standards as substitutes for missing or inadequate public standards (R eardon & F arina 2002). In this respect, private standards can function as a means of competition against other retail outlets by supporting claims of superior product quality attributes. It is evident from this chapter that large scale retailers are restructuring the agri-food chains from which they buy their products, in several crucial ways. T his form of ‘T op-up’ regulations by private interest groups in the name of consumer interests will have serious implications for the farm sector. T his perception of retailer imposed quality protocols is echoed by M arsden and his Brazilian colleagues based on observations from their work in Brazil, which formed an important strand of this research. A ll this boils down to the fact that sustainability as a set of quality standards may provide leverage for large enterprises to control markets and raise barriers to competition. T herefore, when a retailer develops a strategy for sourcing more sustainable products, they, as governors of the supply chain, can push all compliance costs and risks down to the suppliers. Standards and codes of practice therefore favour the well-capitalized farmers. T he efforts to catalyze a public-private response that packages sustainability into technical, regulatory and managerial frameworks has shown that supply chains respond with another drive of marginalization of small farmers (Vorley 2001). A debate therefore needs to open as to what the effects are of these private standards, and how public policy should take them into account, such as harmonizing with them. References Barrett, H ., Ilbery, B., Browne, A . and Binns, T . (1999) ‘Globalization and the changing networks of food supply: The importation of fresh horticultural produce from Kenya into the U K’. Transactions of the Institute of British Geographers 24:2, 159–174. Black, J. (1996) ‘Constitutionalising self-regulation’. Modern Law Review 59, 24–56. Black, J. (2000) ‘Proceduralising regulation: Part I’. Oxford Journal of Legal Studies 20, 597–614. Black, J. (2002) ‘Regulatory conversations’. Journal of Law and Society 29, 163– 196. Bonnano, A ., Busch, L., F riedland, W ., Gouveia, L. and M ingione, E. (eds) (1994) From Columbus to ConAgra: The Globalization of Agriculture and Food (Lawrence, KS : U niversity Press of Kansas). Bredahl, M .E. and H olleran, E. (1997) ‘T echnical R egulations and F ood S afety in NAFTA’ in R. Loyns, Knutson, R., Meilke, K. and Sumner, D. (eds) Harmonization/Convergence/Compatibility in Agriculture and Agri-Food Policy: Canada, United States and Mexico (W innipeg: U niversity of M anitoba), 71–85.

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Brousseau, E. and C odron, J. (1998) ‘La complémentarité entre formes de gouvernance: le cas de l’approvisionnement des grandes surfaces en fruits de contre-saison’. Economie Rurale 245–246:M ai-A out 1998, 75–83. Brunsson, N . and Jacobsson, B. (2000) A World of Standards (O xford: O xford U university Press). Burch, D . and Goss, J. (1999) ‘Global sourcing and retail chains: shifting relationships of production in A ustralian agri-foods’. Rural Sociology 64, 334–350. C aswell, J. (1997) Uses of Food Labelling Regulation (Paris: O rganization for Economic Co-operation and Development) . C aswell, J. and Johnson, V. (1991) ‘F arm strategic response to food safety and nutrition regulation’ in J.A . C aswell (ed.) Economics of Food Safety (N ew York: Elsevier), 273–297. C avalcanti, B. and M arsden, T . (2004) ‘T he globalised fruiti-culture system: N ew structures and agency in the north/south relationships’. Paper presented at the C onference on R esistance and A gency in C ontemporary A griculture and F ood: Empirical C ases and N ew T heories, A ustin, USA , 13–14 June 2004. Clarke, M., Godfrey S. and Theron, J. (2003) ‘Globalization, democratization and regulation of the South African labour market’. Paper prepared for the Globalization, Production and Poverty R esearch Project. Labour and Enterprise Project, Institute of D evelopment and Labour Law/S ociology D epartment. U niversity of C ape T own. C odron, J., S terns, J. and Vernin, X. (2002) ‘Grande distribution et agriculture raisonnée dans la filière fruits et légumes frais’. Document INRA-CTIFL, Paris, 26. Cook, R. (1998) ‘Production agriculture in transition: The fresh fruit and vegetable sector’. Food System of the Future Conference Proceedings, Purdue U niversity, September 28, 1998, 1–6. Paper posted on web site . D obson C onsulting (1999) Buyer Power and its Impact on Competition in the Food Retail Distribution Sector of the European Union. . D obson, P., W aterson, M . and D avies, S . (2003) ‘T he patterns and implications of increasing concentration in European food retailing’. Journal of Agricultural Economics 54:1, 111–126. D olan, C ., H umphrey, J. and H arris-Pascal, C . (1999) ‘H orticulture commodity chains: The impact of the UK market on the African fresh vegetable industry’. Working Paper 96, Inst. Developmental Studies, University of Sussex, UK. Evans, N ., M orris, C . and W inter, M . (2002) ‘C onceptualising agriculture: A critique of post productivism as the new orthodoxy’. Progress in Human Geography 26:3, 313–332. Flynn, A., Marsden, T., Carson, L., Lee, R., Smith, E., Thankappan, S. and Yakovleva, N. (2004) ‘The Food Standards Agency: making a difference?’ C ommunicated to the Journal of Public Administration.

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Freidberg, S. (2003) ‘Cleaning up down south: Supermarkets, ethical trade and A frican horticulture’. Social and Cultural Geography 4:1, 27–43. F riedland, W . (1994) ‘T he new globalization: T he case of fresh produce’ in A . Bonanno, B. Lawrence, W . F riedland, L. Gouveia, E. M ingione and K. Lawrence (eds) Columbus to ConAgra: The Globalization of Agriculture and Food (Lawrence,KS : U niversity of Kansas), 210–231. Garcia, M . and Poole, N . (2002) The Impact of Private Safety and Quality Standards for Fresh Produce Exports from Mediterranean Countries (London: F ood M anagement U nit, D epartment of A gricultural S ciences. Imperial C ollege, U niversity of London) (mimeo). Gereffi, G. (1994) ‘The organization of buyer-driven global commodity chains: How US retailers shape overseas production networks’ in G. Gereffi and M. Korzeniewicz (eds) Commodity Chains and Global Capitalism (W estport CT : Praeger), 95–122. Goodman, D . and R edclift, M . (1991) Refashioning Nature: Food, Ecology and Culture (London: R outledge). H enson, S . (2001) ‘A ppropriate level of protection: A European perspective’ in K. A nderson, C . M cR ae and D . W ilson (eds) The Economics of Quarantine and the SPS Agreement (A delaide: C entre for International T rade S tudies, U niversity of A delaide). H enson, S . (1997) ‘T he impact of regulations on consumers and the food chain industries’ in B. M arshall and F .A . M iller (eds) Management of Regulation in the Food Chain: Balancing Costs, Benefits and Effects (C entre for A gricultural S trategy, T he U niversity of R eading), 62–73. H enson, S . and N orthen, J. (1998) ‘Economic determinants of food safety control in the supply of retailer own brand products in the U K’. Agribusiness 14:2, 113–126. H éritier, A . (2003) ‘Elements of democratic legitimation in Europe: A n alternative perspective’. Journal of European Public Policy 6:2, 269–282. Ilbery, B. and Bowler, I. (1998) ‘F rom agricultural productivism to postproductivism’ in B. Ibery (ed.) The Geography of Rural Change (London: Longman), 57–84. Jacobsen, E. and Kjærnes, U. (2003) ‘Sikker mat til forbrukerne: et privat eller offentlig ansvar?’ in E. Jacobsen, R . A lmås and J. Johnsen (eds) Den politiserte maten (Oslo: Absrtakt Forlag), 245–274. Jaffee, S . (1995) ‘T he many faces of success: T he development of Kenyan horticultural efforts’ in S . Jaffee and J. M orton (eds) Marketing Africa’s High Value Foods (Washington, DC: World Bank), 319–374. Jenkins, R. (2001) ‘Corporate codes of conduct: Self-regulation in a global economy’. T echnology, Business and S ociety Programme Paper N o. 2, A pril, U nited (Geneva: N ations R esearch Institute for S ocial D evelopment). M ajone, G. (1994) ‘T he rise of the regulatory state in Europe’. West European Politics 17, 77–101.

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Marsden, T.K., Banks, J. and Bristow, G. (2002) ‘The social management of rural nature: U nderstanding agrarian-based rural development’. Environment and Planning A 34: 809–825. M arsden, T ., F lynn, A . and H arrison, M . (2000) Consuming Interests: The Social Provision of Foods (London: UC L Press), 220. M oran, M . (2002) ‘U nderstanding the regulatory state’. British Journal of Political Science 32, 391–413. Power, M . (1997) The Audit Society: Rituals of Verification (O xford: O xford U niversity Press). Qualman, D . (2001) The Farm Crisis and Corporate Power. N ational F armers U nion of C anada R eport A pril 2001. <www.policyalternatives.ca/publications/ farm-crisis.pdf>. R eardon, T . and F arina, E.M .M .Q. (2002) ‘T he rise of private food quality and safety standards: Illustrations from Brazil’. International Food and Agricultural Management Review 4, 413–421. S cott, C . (2002) ‘Private regulation of the public sector: A neglected facet of contemporary governance’ Journal of Law and Society, 29:1, 56–76. S cott, C . (2003) ‘R egulation in the age of governance: T he rise of the postregulatory state’ in J. Jordana and D . Levi-F aur (eds) The Politics of Regulation (C heltenham: Edward Elgar), 145–174. Shearing, C. (1997) ‘Unrecognized origins of the new policing: Linkage between private and public policing’ in M. Felson and R. Clarke (eds) Business and Crime Prevention (Monsey, New York: Criminal Justice Press), 219–230. Shucksmith, M. (1993) ‘Farm household behaviour and the transition to post productivism’. Journal of Agricultural Economics 44, 466–478. Skytte, H. and Blunch, N. (2001) ‘Food retailers’ buying behaviour: An analysis in 16 European countries’. Journal on Chain and Network Science 1, 133–145. Smith, E., Marsden, T., Flynn, A. and Percival, A. (2004) ‘Regulating food risks: Rebuilding confidence in Europe’s food?’ Environment and Planning C 22:4, 543–567. S tigler, G. (1971) ‘T he theory of economic regulation’. Bell Journal of Economics and Management Science 2, 3–21. T eubner, G. (1998) ‘A fter privatization: T he many autonomies of private law’ in M . F reeman (ed.) Current Legal Problems (O xford: O xford U niversity Press), 398–424. Thankappan, S., Marsden, T., Flynn, A. and Lee, R. (2004) ‘The battle for the consumers: Building relationships in a new phase of contested accountability in the U K food chain’. BRASS Working paper no. 17. Thrupp, A. (1995) ‘Bittersweet harvests for global supermarkets: Challenges in Latin A merica’s agricultural export boom’ (W ashington DC : W orld R esources Institute). UK Food Market Review, 2001 . Van der Gripp, N ., C ampins Eritja, M ., Gupata, J., Brander, L., F ernadez Pons, X., de Boer, J., Gradoni, L. and M ontanari, J. (2004) ‘A ddressing controversies

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in sustainability labelling and certification’ in M. Campins Eritja (ed.) Sustainability Labelling and Certification (M adrid: M arcial Pons), 387–404. Vorley, B. (2001) ‘Farming that works: Reforms for sustainable agriculture and rural development in the EU and US’. Background paper for the NTA Multidialogue Workshop on ‘Sharing Responsibility for Promoting Sustainable Agriculture and Rural Development: The Role of EU and US Stakeholders’, Lisbon, 24–26 January 2001. Zaibet, L. and Bredahl, M.E. (1997) ‘Gains from ISO certification in the UK meat sector’. Agribusiness: An International Journal 13:4, 375–384.

C hapter 7

Globalization and S ustainability in A griculture: R ole of Law and Ethics John H odges

Overview: Agriculture and Food are Unique A sustainable food supply is a unique, foundational human need. A mong the natural biological drivers for the preservation of life, food exceeds even reproduction. In times of starvation and limited food intake, reproduction is reduced and eventually shuts down to be revived only if a regular food supply again becomes available. T he individual body and the community instinctively recognize that in times of famine there is no merit in diverting nutrients to new babies. In affluent Western society with its highly organized food chain and abundant variety of cheap food, nations and leaders can easily forget that starvation inevitably leads to death – quite quickly. T his chapter addresses the tragic consequences of treating food as only another commodity in an economic system where public and political decisions are dominated by profit and shareholder value and where the agenda of society is shortterm material prosperity. T he new methods used for these ends by global business in the food chain that often receive the active support or passive indifference of governments, are described. In general, W estern society has lost its balance by allowing, or encouraging, the business and economic component of society to dominate the whole of life and to shape human community. Business and economics are valid parts, but only two parts of a complete civilization. Elevating them to the level of supreme arbiters of all public decisions puts community on an unsteady course into a future that already shows signs of collapse. T his chapter addresses the sustainability of agriculture and food in this new economic format for living because farming provided the launch pad for civilization and remains essential for survival today. Life can continue, though at a lower quality, without the obsessive consumption of manufactured goods characterizing life in the W est today. Life cannot continue if agriculture and food are despoiled by the ideology of globalization. In many ways agriculture and food are stormwarning indicators.  ����������������������������������������������������������������������������������� The material for this chapter is taken from the manuscript of a book by the author currently being prepared for publication.

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Globalized business aims to colonize the global food chain in the same way that a few multinational businesses possess the lucrative, guaranteed market for oil. The attack on agriculture and food uses two principal weapons to gain control: • •

T he mandatory laws of the W orld T rade O rganization (WTO ) that require member countries to open their agriculture and food to a world market already greatly influenced by subsidized, intensively produced Western food. T he new legal procedure of patenting life that is now being used by a small business elite to take ownership of the agro-bioresources of the world.

T hese new powerful weapons abuse two foundation principles and practices of civilized society: • •

T he rule of law upholding a stable society and providing for the orderly conduct of life for everyone. Ethical behaviour based upon positive values for sustaining community life.

Western society has chosen a dangerous route in seeking to globalize agriculture and food and intends to take the whole world into this high risk venture. This route is at variance with the positive experiences deriving from agriculture and food in the past and risks returning society to a hierarchical socio-economic model of enforced control by an elite, long rejected by enlightened society. In this chapter we seek to understand how this situation has come about, to assess the dangers realistically and to offer alternatives for a sane approach for ensuring a sustainable food supply for the whole world. T he chapter follows this sequence: 1. 2. 3. 4. 5.

A griculture and F ood at the O rigin of C ivilization R ise of Globalization as an Ideology O rigins of the R ule of Law and M orality The Enlightenment and its Backlash A Better A lternative for the F uture

Agriculture and Food at the Origin of Civilization The long march of humanity and food T o understand the present position of the food chain in modern society a brief look at the past is essential. A review of where humanity has come from reveals the threat of return to a more primitive life if we fail to ensure a sustainable food supply system – a great risk that we are now taking. This overview starts about 12 000 years ago at the beginning of human civilization when the N eolithic or

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Cultural Revolution broke the hunter-gatherer model with the invention of settled agriculture and civilization as we know it was launched. This civilized period is relatively short compared to the aeons of pre-history. Prior to this remarkable change, our early ancestors, the hunter-gatherers, had a very simple economic system which was labour intensive with no land ownership; and traditional knowledge was their only capital. Collecting food was their major activity. Even today, small isolated tribes of hunter-gatherers devote most of their energy to ensuring adequate food. Anyone taking the time to watch domestic or wild animals soon notices what animal behaviour studies confirm; namely, that searching for and ingesting food occupies 80% of waking time. Life is ensured only by the continuous, diligent search for food. By the wit and skill of humanity it has become possible in the West for 90% of the population to spend their energy on activities other than producing food. By contrast, depending upon the stage of development, people in poorer countries still devote 35 to 90% of their time to food production. Settled agriculture and the first domestication of plants and animals in M esopotamia, now Iraq, was a critical hinge point that was later repeated elsewhere in copycat centres of domestication. In those early days, agriculture was the focus of all socio-economic and community activity. F arming directed choice of location to settle; diets were determined by local agro-bioresources. F armers began to claim ownership of land to protect their cultivated crops, to own domestic animals and tools; and thus the socio-economic pattern of land, labour and capital was born. S ettled agriculture needs co-operation and so the human experience of community on a scale larger than close family was initiated. C ommunity became a central feature of life. R outines revolved around the seasons, religious events centred on farming activities such as harvest, and wealth was counted in animals. C ommunity became even more important as peoples migrated in different directions around the earth. Life was shaped by the cycles of nature. S ettled agriculture soon revealed the advantages of division of labour, thus liberating energy and time for an amazing burst of human creativity. A rchaeological and anthropological evidence show that these settled communities developed into a new type of society featuring art, complex language, jewellery, music, implements, trade, storage of wealth, hygiene, technology, engineering, architecture, heating, plus intellectual, artistic, economic and other social activities including religion – all evidences of a higher quality of life than Homo sapiens had previously known when living as an animal. A s humanity no longer survived in small family or extended family groups, but in larger structured communities, the emergence of moral standards and laws to guide acceptable behaviour was extremely important to sustain society, as discussed later. S ome people moved away from the land and established urban communities. A mbitious rulers realized that cities could hold power over settled farming  ������������������������������ W .J.A . Payne and John H odges, Tropical Cattle: Origins, Breeds and Breeding Problems (Blackwell Science, 1997).

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communities, controlling and taxing the flow of goods and people to and from the farming hinterland including the use of slaves and soldiers. C ities became gateways to land and food supplies and thereby grew more prosperous. F ood has always been a weapon of power and control. Take a city in war and you control the wealth from the surrounding land and population. U rban centres and especially the rulers became richer with servants, more education, resources to travel and time to engage in other activities including conquest of more territory and peoples leading to kingdoms and eventually to sovereign states. C ities began to accumulate different forms of capital: financial, intellectual, social and humans as slaves. Religious power with its roots in rural areas was also centralized in cities. R ural and urban societies grew apart while class, education and economic distinctions grew. In the flow of subsequent millennia from those early farmers to the present twenty-first century, this separation of people on the land from a powerful urban ruling class can be traced through the wide variety of socio-economic systems which humans have developed: tribal, slave, feudal, mercantile, military, fascist, communist and market economy. In the last two centuries, the West has attained the most liberal democratic system based upon equality and the rule of law. Y et, during the last decade of the twentieth century the W est introduced the most extreme and unbalanced form of market economy, itself a product of the globalization of capital, that I call ‘Elite C apitalism’. T his system increasingly permits an urban minority to direct economic development. T he W estern urban minority in the world holds power over farmers, the food chain and the poor. C ontrol is exercised through merchant banks, investment houses, stock exchanges, commodity exchanges, food futures, derivatives, advertising agencies, farm loans and credit, and so on, plus the near monopoly powers of the huge up-and down-stream companies that, by contract, dictate the management practices of the modern farm in W estern society. The movers and shakers in the boardrooms of these institutions are anonymous, largely appointed and not elected, trained not in agriculture or biology but in business schools where their skills are sharpened to seek only profit. As already mentioned, further levers of power are being added through WTO and patent laws. F or 12 000 years civilized life has been a long, slow climb upwards but reverse free-fall could be swift.  ����������������������������������������������������������������������������������� By Elite Capitalism I mean an unbalanced market economy in which financial capital has become the only arbiter of decision making. Financial capital under globalization has become highly mobile and all new and existing business opportunities are evaluated solely on the basis of return on investments. O ther resources including land, labour and other forms of capital are brought into the enterprise only as they support the single goal. T his system places major decision-making in the hands of a small elite group of executives in the business world who have power to make huge capital investments which they administer on the behalf of both large and small owners of financial capital whose only requirement of the executives is increasing profit and shareholder value. Considerations of the interests of workers, customers and citizens are not taken into the decision-making process except as they affect return on investment.

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The Rise of Globalization as an Ideology What is globalization? Globalization is a very new concept. A lthough latent in economic theory for several centuries, only since the last decade of the twentieth century has it become both an ideology and a realistic possibility. A lthough idealists may visualize a globalized world without national borders, patriotism, wars, ethnic tensions, equality and global politics together with recognition of universal human rights, in practice economic globalization is the only possibility. T he forum of the U nited N ations reveals the deep commitment that national and political leaders retain for their own power base and self-interest. UN agreements often tend to the lowest common interest and override even the ethical way forward that seems most obvious to the common man. T he European U nion started in 1948 with economic union that has gradually expanded, but extension to other areas of life remains slow and controversial. S imilarly, because globalization crosses national interests and, if applied comprehensively, would involve surrender of national power, to date it has been able to focus only upon economics and trade. T his goal suits countries whose global economic reach is already well established through several centuries of colonization, military intervention, bi-lateral trade, industrialization and support of intensive agriculture. T o consolidate and extend trade globally, W estern countries were the prime movers in 1995 in shaping previous trade and tariff agreements into one global body, the W orld T rade O rganization (WTO ), to which all countries are invited as members. Business interests with the support of W estern governments have formulated the WTO agenda upon free trade, meaning the absence of any protective measures, taxes, tariffs, subsidies, and so on, and country membership is conditional upon removal of these barriers. T he WTO mandate to exercise such vast authority on world affairs that affects far more than cheap food has not been submitted to the people; and WTO executives and counsellors, including those who impose sanctions for default, are not elected democratically but appointed by an in-house caucus. The organization lacks democratic status. U ndoubtedly, free trade based upon A dam S mith’s D ivision of Labour and D avid R icardo’s C omparative A dvantage creates more wealth and lowers consumer prices in industrial commodities and manufactured goods, although equity remains an issue as the greatest share often goes to those owning most capital. T he proponents of free trade insist on including agriculture and food on the grounds that it will produce the cheapest possible world food supply. But, as we have seen, agriculture and food are unique in social as well as economic affairs and cannot be swept into the global free trade ideology without dire societal consequences affecting the quality of life of the poor and a sustainable world food supply. Deep issues of justice must be considered when seeking to feed the world, needing a special global policy that takes account of more than simple economic growth.

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N evertheless W estern governments pressure the developing world to open their markets and drop protection of agriculture and food, while the EU and the USA take a hypocritical stance by continuing protection and support of their own domestic farmers. W ithin the WTO agriculture and food have become the most contentious issues with developed and most developing countries ranged on opposing sides. T his confrontation is a continuation of the historic divide between rich urban and poor rural societies in which the former always hold considerable power over the latter. In this case 20% of the world population in capital rich countries faces off 80% of the world population in developing economies. The gap in their standards of living is huge. Leaders of capital rich countries seek the moral high ground by arguing that the ideology of globalization is the panacea for solving world hunger. In fact most of the three billion people living in rural areas close to the land are not hungry but poor. T hose who are hungry or malnourished are mostly fed by food aid from the U nited N ations W orld F ood Programme and other aid programmes. M any are refugees and their sad condition mainly results from international or civil war, natural disasters, or corrupt political leadership, none of which will be rectified by free trade in food. T he greatest need of the three billion rural poor is empowerment, meaning they need the opportunity to produce and sell their excess food in their domestic markets. But Western business wants those markets for their subsidized, intensively produced food. O ne has to be blind not to suspect that the motives of global food businesses are colonization of the world food chain, and they see free trade as a means to that end. A ctually free trade is a formula for an unsustainable world food supply that will place consumers at risk in both developed and developing countries. W hy? Because business being business, international trade in cheap food will be dropped in the pursuit of greater profit opportunities. A sudden change of this type is already seen by the diversion of W estern food acres to biofuels. C ountries following WTO free trade laws that allow their domestic agriculture to decline in the interests of importing cheaper food are thus left hungry. T he U K was in this position in 1939 having practised free trade for 100 years by importing cheap food from the British Empire. But suddenly under war conditions it could no longer be imported. T he U K had allowed domestic agriculture to decline and was able to produce only 60% of needed food at home; rationing was introduced that lasted for 15 years while farming capacity was slowly rebuilt at considerable cost. Abuse of rule of law and violation of ethics in globalization of the food chain T wo highly important components of civilized society are being abused in the new rush to force agriculture and food into global free trade. T hey are the rule of law and standards of ethical behaviour that ensure justice and equity in economic development. It would be nonsense to pretend that the rule of law and good ethical behaviour have consistently characterized human society until now. A mbitious leaders have always threatened, sometimes ignored and occasionally deprived society of orderliness and respect for others. N evertheless history records, and we

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know from experience, that European culture has gradually moved, with hesitancy and much brokenness en route, from a primitive society based upon instinctive selfinterest to one that by the 20th century was built upon the rule of law and embraced values that recognized human rights for all and care of the disadvantaged. But, the fragility of this advanced civilization was well displayed by the gross violation of these principles in the 20th century by two European states under H itler and S talin producing periods of darkness worse than survival of the fittest in the wilderness. A s the W est now enters the 21st century supported on the luxurious litter of material prosperity that owes almost everything to previous generations, the rule of law and ethical values are being washed away, thereby eroding the twin bedrock foundations on which W estern civilized life has been built. F ree trade in food permits the abuse of the rule of law and ethical values by two mechanisms. F irst, the mandatory rules of the WTO expose the poor to exploitation instead of empowerment; second, patent law on agro-bioresources gives ownership of the world’s agro-bioresources to an elite group remote from the land. F armers are required to pay a royalty to obtain seed for crops. A pplications for patents for domestic animals are also now in the law courts. Y et from the beginning of time these resources have been held in common ownership by all humanity. T o understand better the new threat to the rule of law and ethical behaviour we next review their origins which are rooted in rural agricultural societies. Origins of Rule of Law and Morality Living in community requires laws to sustain life A s noted earlier, the advent of settled agriculture moved humans from small tribal families where life was based upon competition over largely unpopulated territory into larger rural communities where survival mode needed co-operation. T his dramatic change called for a major adjustment in the ways that people related to each other and to the natural environment. T he instinctive, self-centred law of the jungle proved to be destructive when community settled on cultivated land with boundaries. T he new communities, even at the simplest level, needed group activity to capture, domesticate and care for animals, to cultivate crops and to keep the former from grazing the latter. T he advantages of settled communities could easily be lost by selfish behaviour. The process of living together and sharing harvests not only raised the standard of living with explosive creativity, but it also raised expectations of ethical behaviour with sanctions upon anti-social actions. Inevitably these expectations were codified into laws enabling society and its resources to continue into successive seasons, years and generations without being wrecked by the selfish behaviour of a few individuals.  ������������������������������������ M ax F . R othschild and S cott N ewman, Intellectual Property Rights in Animal Breeding and Genetics, CA BI Publishing, W allingford, U K, 2002.

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Law and ethical behaviour Laws against abuse of land and natural resources are rarely needed in agrarian societies because people living close to the land know instinctively that next year’s harvest is dependent on not abusing the land this year. F or example, dairy farmers accept that they cannot milk a cow endlessly and also expect sustainable performance. A cow must have a rest period between one lactation and the next if she is to continue yielding high quantities of milk over her lifetime. The rest period is not lost time but investment in the sustainability of milk production. A s people moved into cities away from the land where the need for sustainability was so obvious, self-interest and neglect of community values became easier. A n urban society needs education in the meaning of sustainability. Intelligent leaders and law makers in all communities give top priority to sustainability of society and pass laws against anti-social behaviour. By seeking to limit selfish behaviour good laws sustain human society. T he ten commandments of M oses that have formed the moral basis of Judeo and Christian societies are also reflected in expectations of most major religions. T hese commands are prohibitions against bad behaviour. But, in recent decades in the W est, greed and self-interest have necessitated laws against overuse of the environment to limit industrial operations from spoiling natural resources. S uch laws are framed to prevent bad practices by a minority in the interests of sustainability for the whole community. T he fact that there is opposition to such laws in modern society shows how far modern W estern man has departed from his roots and reveals his abject failure to grasp the biological nature of the community of life. H istorically, laws have generally aimed to prevent bad behaviour. Legislating to enforce good behaviour is usually impossible. A law against abuse of wife or children is enforceable; but a law requiring a man to love wife and children has no teeth and cannot be enforced. F ollowing the recent spate of corrupt behaviour by business executives, new laws do not mandate ethical behaviour; rather, they require verifiable practices against lack of transparency, accountability and money laundering, etc. C ivilized societies over the centuries have used law to prevent wrong-doing defined as actions not in the best interests of society as a whole. There are many examples from the 19th century: prison reform laws to prevent violence against prisoners, abolition of the slave trade, use of the Plimsol line on ships to prevent overloading, limits on the length of the working week, safety laws in factories, children not sent to work in mines, etc. Good laws prohibit anti-social behaviour, thereby providing a stability for the whole of society rich and poor, educated and non-educated and the disadvantaged. Two views on why humans are morally responsible T oday there are two views on the origins of ethical behaviour and moral choice by H omo sapiens. O ne view is that in pre-history H omo sapiens had developed a

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genetic pre-disposition favouring group co-operation over competition that, under the new conditions of settled agriculture, caused people instinctively to co-operate and later to codify good and bad behaviour into laws. T he other view, held by the major world monotheistic religions – Judaism, C hristianity and Islam – is that God facilitated the change from animal behaviour to human community by shaping H omo sapiens into his own image. T his image includes several important traits not evident in animals, two of which are moral understanding and the ability to make decisions against the instinct of self-interest – details of which are portrayed powerfully as allegory in Genesis, the first book of the Bible. This second (theistic) view also holds that the moral law was not the result of human genetic pre-disposition but was revealed by God to humanity as guidance on how to live sustainably and peacefully in community. Those following the first view, while discarding the idea of God intervening in human affairs, nevertheless propose that the leaders of mankind quickly realised that their people were more likely to conform to the moral law if it were linked to an imaginary deity with power to reward or to punish either here and now or later. T his view requires acceptance that humanity has an awareness of the transcendent that is lacking in animals. Those on the rejection-of-God track are still searching for a rational explanation of the universal religious tendency in humanity, while those on the belief-in-God track find their explanation of religious behaviour in the image relationship of humanity and God. W hatever the view of origins, it is accepted by all as self-evident today that individuals and institutions can choose to live unselfishly and thereby promote sustainability and quality of life for all; or alternatively can choose to live selfishly and degrade the environment and life for others. As Isaak Singer pithily put it: ‘We have to believe in free will, we have no choice’. C ommonly we describe these alternatives as ethical choices between doing Good or doing Evil. T he way Europe has understood Good and Evil for nearly two thousand years has been based upon the teaching of Jesus; namely, that Good ethical behaviour means doing to your neighbour what you would like your neighbour to do to you; while Evil ethical behaviour is doing to your neighbour what you would not like your neighbour to do to you. T hus, in the best periods of European history, the rule of law has been used to prevent and punish anti-social behaviour while individuals and society have been expected to behave ethically by voluntarily choosing to do Good to others. In simple terms all public decisions should take account of sustaining the community as a whole; generally known as: ‘Doing the decent thing’ or ‘The Golden Rule’. O ver the long periods of human history until today, some societies and leaders have chosen Good and guided communities into increasing prosperity and quality of life. O ther leaders have chosen Evil and have created societies in which people and resources have been abused, enslaved, and degraded. In either case, leaders usually make laws defining what is Right and what is Wrong. Progressive societies have generally made laws that in the longer term equate R ight with Good and W rong with Evil. A s society advances, new legislation is passed to change abuses. H owever, the 20th century saw several regimes that reversed this equation; for

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example, H itler’s N azis and S talin’s C ommunism. T hose autocrats made laws in which R ight was equated with Evil and W rong with Good. W hen the W estern democracies, that historically were based upon JudeoC hristian values, defeated N azism in 1945 and then saw the collapse of S oviet C ommunism in 1989, many assumed that the W est had created the permanent socioeconomic system defined by Right and Good. Those cries of triumph frighteningly echoed the earlier proclamations that communism was the ultimate endpoint of humanity. But some in the W est saw the defeat of Karl M arx by A dam S mith and the 50-year period of prosperity in the W est as proof of the ultimate superiority and sustainability of Western democracy and capitalism. Francis Fukuyama wrote The End of History in this vein. Regrettably, in the last two decades, this remarkable combination of capitalism and democracy is showing increasing evidence of unsustainability. W hile this crumbling is fearsome in many areas, including climate change, nowhere is it more critical than the risk to agriculture and food which, from early days of civilization has been at the root of human survival and well-being. T he eyes of W estern leaders are now blinded. M ost of them have lived their whole lives in an urban environment always provided with a plentiful supply of cheap food at the local supermarket. Such isolation insulates policy leaders from the proper understanding of agriculture and food. 4. The Enlightenment and its Backlash What is the nature of the abuse? T he tragedy of the present state of W estern society, especially as revealed by its attitude to agriculture and food, is found in the willingness of leaders, legislators and the law courts to abuse two foundational principles of sustainability, namely the rule of law and ethical behaviour in the public sphere. A s discussed earlier, historically good laws have been designed to prevent and punish selfish behaviour and thus to sustain positive community values, equality and improvements in the quality of life for all. Good ethical behaviour has been expected as normal on the basis of moral choice because everyone knew the importance of sustaining community. W estern society now faces a paradigm shift in the rule of law and ethical behaviour. C rucial laws are now being put into place that reverse the long-standing principles of civilized society. T he WTO laws require the dismantling of protection of domestic agriculture and the exposure of food markets to global free trade. T hese laws do not oppose anti-social behaviour – they use legal power to provide trade and business advantages to a minority, the strong W est that wants access to the markets of the huge populations of the developing world. These WTO laws are discriminatory in favouring the rich and powerful while putting the poor at further disadvantage.

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T he patent laws, that were originally designed to protect the rights of inventors who made something novel, are now being used by multinational businesses in agriculture and food to claim ownership of agro-bioresources. T his move is a second example of the use of law to protect the interest of an elite rich group while taking away ownership from the poor whose livelihood for millennia has depended upon being able to use seed and livestock that have been domesticated by their ancestors. If anyone alive today can claim ownership of the world’s domesticated crops and animals, it is the living descendents of those early farmers who brought those species into farm use from wild varieties. In terms of ethical behaviour that has traditionally supported community, the emerging Western business model places priority on profit alone and therefore sees others people, called ‘neighbours’ in ethical terms, as competitors whose interests are antithetical to the self-interest of the successful business model. We now seek an understanding of how this reversal in the rule of law and of normal ethical behaviour in the public square has come about. The enlightenment European civilization went through a number of stages in the move from early settled agriculture to the present advanced socio-economic and political system. Probably, the most transforming and remarkable period in European history started about 700 years ago with the R enaissance, the R eformation and the Enlightenment. W hile all three had monumental effects upon the development of European society and its cultural colonies in the N ew W orld, the Enlightenment starting in the 18th century was the major hinge point with effects that lasted into the 20th century. Just as settled agriculture ended Pre-H istory enabling humanity to metamorphose into the Pre-M odern Era, so the Enlightenment ushered civilization into the M odern Era that has shaped W estern life and spilled into the rest of the world. T he Pre-M odern Era was characterized by stable infrastructures including the hierarchy of God as the S upreme Being, secular rulers with divine right, the church, limited understanding of the earth that fostered superstition, inherited class-based power and political subjection. T hat society was relatively stable reinforced by the limitations on education, travel and communications since the fastest that a man could travel was by horse. T he Enlightenment undermined those structures and started a slow cascade of innovation in society that deeply changed human perceptions about the nature of the universe and man’s place in it. Emerging consequences included social-economic and political revolution, literacy, the start of modern science, replacement of superstition by rationality, diminished authority for the church, the death of God, democracy, human rights, and many applications of technology improving the material quality of life. R elevant to the discussion here, the rule of law and independence of the judiciary were significant features to emerge together with the societal values based upon Judeo-C hristian teaching that for a thousand years had provided Europe with moral and ethical standards of behaviour. In retrospect from the 21st century, the Pre-M odern Era

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seems unattractive and needed to be replaced. Fortunately the change took place in Europe, whereas in some other parts of the world the Pre-M odern Era persists. But there are positive aspects of the Pre-M odern Era that we now despise, as now discussed. How did the West arrive at this state? The restructuring of Western society due to Enlightenment influences is very relevant to the present discussion of sustainability within a global economy. Reductionism, which breaks a system into its constituent parts, is a product of the Enlightenment and is a potent influence today permeating both world view and behaviour. Reductionism is central to the scientific method and underlies economics and capitalism as practised today, enabling both to be more efficient and effective. R egrettably our habit of seeing everything in reductionist terms has had a negative effect upon our view of community. M odern man, living in an anonymous urban society, typically owes and gives nothing to his neighbours and is unaware of the sterility of such a life. In that worldview, community does not exist independently of the personal interests of each individual; other individuals are seen mainly as competitors seeking possession of limited resources. They are therefore not seen as friends and merit no positive actions. Quality of life is measured only in financial terms which the self-sufficient, autonomous individual takes as the main factor in every decision and in any encounter with others. Ethical behaviour, born of community and for theists a moral choice given by God, finds no place in this world view. T he isolation of urban based individuals from their ancestral communities and nuclear families reinforces interest only in value now, thus removing interest in past or future generations. A nd, the condition of the majority poor in the world is irrelevant to an individual life seeking only personal gain. This individualistic worldview and these behaviours are the backlash of the Enlightenment. T he W est is a secular, self-centred society, a condition recognized in Europe; whereas even the large religious component of the USA supports a culture and practises a self-centred lifestyle better described as secular. If our forebears in Pre-M odern Europe could see us and our behaviour they would recognize instantly that our lifestyle is unsustainable. Under Enlightenment influences, Western society rightly rejected the inhumanity of man to man so evident in Pre-M odern European society; but we foolishly reject the wisdom of living in sustainable community that was built up over thousands of years of civilization. Pre-M odern society, despite all its faults, was sustainable; our way of living is not. F urther, our ambition to globalize our economic system and insist upon it being used in other nations, most of whom have not yet been through the Enlightenment experience, is a folly unworthy of enlightened humanity. In relation to the issues of sustaining agriculture and food, it is valid to ask how W estern society, at the start of the 21st century now accepts laws and ethical

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behaviour that are discriminatory by establishing rights for the strong and powerful over the poor and weak. 20% of the world uses 80% of the natural resources polluting the environment and changing the climate in the process, while 80% of the world uses 20% of the resources and half the world population lives on $2 per day. Approaching the cliff edge W estern society is poised between moral choices – powerfully presented by the allegory of the Tree of the Knowledge of Good and Evil in the book of Genesis. Selfinterest blinds individuals, leaders and societies to the reality that we are walking to the edge of the cliff. Earlier agricultural communities knew by instinct or discovered by selfishness that a society ignores the moral imperatives at its own peril. They knew that survival was precarious. We rightly threw out institutional religion that had become a vehicle for selfish power, but we have foolishly thrown out the moral codes and ethical behaviour without which human community is destroyed. Looking back even a short time confirms that the last few decades have seen W estern society embrace a self-centred, individualistic, narrow-minded worldview interested only in personal prosperity. Even today, the older generation recalls the spirit of community that brought Europe and the USA through two W orld W ars and the severe economic depression of the 1930s. D uring those times of challenge people realized the importance of community, of empowering everyone, and of preserving a domestic food supply. T he great tragedy and blindness of W estern society is to forget the liberation brought by the Enlightenment to the extent of now allowing an elite minority to abuse the rule of law and by unethical behaviour take control of agriculture and food. 5. A Better Alternative for the Future T he world enters the 21st century with gross inequality and injustice. T he existence of billions of poor and disadvantaged people cries out for remedy. T he means, facilities and wealth needed for actions are available on a global scale never seen before in human history. The West has power to take successful initiatives that cover the whole earth; for example, communication, travel, tourism, military, education, trade, fishing, energy, space exploration and travel, etc. But the acceptance of billions of poor in an age when civilization has never been richer is a blot on the moral responsibility of humanity. T he abuse of the rule of law to protect the interest of the rich and the abrogation of the ethical responsibility by leaders who have power to act in positive ways is a mark of shame on our advanced civilization. Thinking people are calling for an alternative way. It is beyond the scope of this chapter to propose detailed designs for action. N evertheless, serious proposals are given for action. Positive change will not be easy because of powerful vested interests. W e need to recall the words of Edmund Burke: ‘The only thing necessary for the triumph of evil is for good men to do

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nothing’. W e should be encouraged by the fact that great global changes affecting the poor like the Abolition of the Slave Trade in 1807 and later the Abolition of S lavery in the British Empire in 1833 were brought about by the persistent and courageous actions of W illiam W ilberforce and colleagues in the U K parliament. T he impact spread beyond the British Empire, setting a precedent for the abolition of slaves 32 years later in the USA and the end of serfdom in 1861 in R ussia. Because many leaders of large businesses can no longer be trusted to do the ethical thing voluntarily, legislation is the only positive way forward. H ere is a list of areas that would begin to empower the poor and to ensure the sustainability of agriculture and food globally. • •

•

• • • •

R emove A griculture and F ood from the free trade mandate of the W orld T rade O rganization. C reate through the WTO a levy on international trade that is used to empower poor farmers in the developing world by building infrastructures such as marketing, quality, hygiene improvements, etc. and to develop new employment in rural areas such as up-stream and down-stream services to the agricultural community. R ecognize that the agro-resources in W estern countries are also a national heritage that must not be left to market forces alone. This means continuing financial support from governments and the EU to farmers to promote the production of high quality food using sustainable methods and conserving the environment. Legislate and give financial support to encourage locally produced food on the market. R emove all life forms from the patenting process. T his means allowing patents only for new methods and for the non-living products obtained from living organisms. Introduce required courses on sustainability and community along with the existing courses on ethics in business schools. Make laws that regulate the activities of near-monopoly companies in the food chain to prevent unjust exploitation of farmers and customers.

C hapter 8

Production Economics, Markets and A ssurance Programmes for F arm A nimal W elfare M ichael C . A ppleby

Introduction Every year, around 60 billion mammals and birds are reared for food on farms worldwide; this number does not include farmed fish and invertebrates. This huge business is subject to similar financial pressures to many other businesses, and in the livestock agriculture of developed countries a predominant tendency over the last 50 years has been a drive for efficiency – for cutting the cost of producing each egg or unit of meat or milk. However, the livestock business is unusual in dealing with sentient animals, so it is a matter of concern that one result of this drive for efficiency has been the development of intensive farming and other practices causing problems for animal welfare, a pattern now also occurring in many developing countries. In parallel with and partly as a result of this intensification there has been increasing consideration in many countries for the welfare of farm animals. T his has resulted in the restriction of some practices deleterious to welfare, or conversely, has led to the introduction of standards for the protection or promotion of welfare, albeit very unevenly. T his chapter will briefly outline the economic basis and implications of such standards. It will then consider the question of whether such standards are compatible with the increase in international trade and competition between countries, which tends to increase the pressure for cheap food production. Economics and Ethics Economic theory has long been based on ethics, an issue discussed at length by A martya S en (1987). Bennett (1997, 235) explains that: Economics is not concerned with money per se, although it often finds money a useful measuring rod. Economics is concerned with how we in society make decisions about using resources to achieve the things that we want. The central problem for economics (and for society) is that we all want a multitude

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T his idea is developed further by M cInerney (1998, 115) in an article called ‘T he Economics of W elfare’: T here are two possible interpretations of ‘the economics of animal welfare.’ T he popular conception is probably that it relates to the commercial implications of welfare improvements and the financial costs and benefits experienced by those directly concerned. On these grounds one would expect to find statements about issues raised by higher welfare products. T his ‘supply side’ viewpoint puts the emphasis on animal welfare adjustments as a problem for farmers, and treats economics as relating with the monetary side of things of primary concern to the producer. T hat, however, is an erroneously narrow view of economics – a view which reduces its role to one of simply measurement and (even worse) confuses the economist with an accountant. T he more relevant interpretation is that ‘the economics of welfare’ examines the implications for the economy of the whole food system, including the way resources are used in agriculture, the effects on the real costs of food and the extent to which the outcome meets the preferences of society.

C onsideration of the economics of animal production is therefore not peripheral, but central to any serious attempt to address the welfare of farm animals, and the viability of welfare standards will be a reflection of the extent to which animal welfare is genuinely a matter of public concern. Production Cost and Welfare T he decline in cost of food production in developed countries was initiated by public policies in favour of more abundant, cheaper food. H owever, in recent years it has acquired its own momentum. C ontinuing decline in food prices is sometimes attributed to pressure from consumers, but it would be more accurate to say that it now primarily results from competition between producers and between retailers. T his competition sometimes causes problems for animal welfare, but does not always do so. F irst it must be noted that some producers claim that the welfare of their animals is satisfactory almost by definition, because poor welfare would be associated with poor production and hence would be self-defeating. T his indicates an emphasis on those physical aspects of welfare that are associated with production. H owever, people vary in their attitude to welfare, emphasizing physical aspects, mental aspects, naturalness, or a combination of these (F raser et al., 1997), and these do not all correlate with production. Furthermore, profit from

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a group of animals often does not correlate with welfare of its individual members. So there are many instances where measures to increase profit have caused welfare problems, for example decreasing space allowances for rearing pigs. O ne of the main effects of competition has been intensification of livestock farming: in the case of pigs, keeping them indoors, increasing stocking densities, using crates and stalls, selecting for growth rate and reducing weaning age. It is true, of course, that emphasis on production does militate against severe mistreatment or neglect of animals, and that conversely there are many instances where measures to reduce costs will improve welfare, for example measures to prevent disease and mortality. Nevertheless, a focus on efficiency has not always identified the best methods even to achieve its own aims. It took an alternative approach, aimed at reducing problems for the animals concerned, to identify the fact that humane treatment of livestock by workers improves growth rate and reproduction (H emsworth 2004). A similar approach showed that understanding animal behaviour can improve design of handling systems and hence efficient use of labour in handling livestock (Grandin 2004). In both cases the unit cost of producing or handling animals can be reduced, after an initial investment in worker training or facilities, while also improving animal welfare. So a positive attitude to welfare may benefit both animals and producers despite a competitive market. However, people do not always recognize or act on such opportunities, needing education and help to do so, partly because there may be a requirement for short-term expenditure to achieve long-term benefit. A positive attitude to welfare by individual farmers, then, may produce a degree of protection for farm animal welfare that is completely compatible with and potentially even promoted by competition, including that from free trade. T his is in some sense a basic farm animal welfare standard, but most discussion of standards concerns more concrete guidelines for animal welfare. Farm Animal Welfare Standards S tandards for farm animal welfare – or for other aspects of food production – operate at a number of levels of authority. S ome are informal agreements among, say, a number of producers. S ome are more formal agreements. S ome involve assurance, with measures for verification (usually by independent assessors) that the standards are being met. A further level is legislation, which should also involve verification and enforcement. S tandards may also be categorized by the type of entity setting them up, as follows. Producer group In a number of countries, farmers or production companies form associations, which may agree standards of good practice to safeguard and promote their

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behaviour, reputation and sales. In recent years these have responded to public opinion by including consideration of welfare, although they vary in how much they actually raise standards above customary practice. F or example, in the US the National Pork Board (2005) has set up the Swine Welfare Assurance Program, which encourages producers to review their practices that affect welfare but does not introduce any new criteria for housing systems. By contrast the A merican Veal A ssociation announced in 2007 that its members would phase out individual crates for veal calves (H umane S ociety of the U nited S tates 2007). Production, processing or retailing company C ompanies are also responsive to public opinion and in the US several large companies have introduced standards. In 2000 the M cD onalds C orporation started requiring its suppliers to provide laying hens with the same space allowance as in Europe, and not to practice forced moulting. O ther fast food chains followed suit, and subsequently the N ational C ouncil of C hain R estaurants (NCCR ) and the Food Marketing Institute (FMI, which represents the major supermarket chains) developed a collaborative programme, producing husbandry guidelines for their suppliers of animal products. M ore recently some large production and processing companies have acted similarly: for example in 2007 Smithfields, the world’s largest pork production and processing company, decided to phase out gestation crates for sows on all its farms (Kaufman 2007). M ore stringent standards are being developed by a company that emphasizes ethical issues of food, the US/UK chain of food stores Whole Foods Market (2007). Its A nimal C ompassionate S tandards will, for example, prohibit bill trimming in ducks. Speciality producers S ome producers also address consumer concerns about food production methods by developing niche markets, obtaining higher selling prices to offset their higher production costs – if, indeed, their production costs are really higher, which is often a matter of debate. T hey do this either because they share consumer concerns, or for business reasons, or both. A s well as welfare, such concerns include the following, and production methods that take these into account may also improve the welfare of livestock: the environment (especially organic production) (Appleby 2005), food safety and quality, food security, local food production, family farms, farm workers, rural communities and developing countries. Standards that specifically address animal welfare are generally endorsed and verified by welfare organizations: in the U K, the R oyal S ociety for Prevention of C ruelty to A nimals; in N orth A merica, the A merican H umane A ssociation, H umane F arm A nimal C are, the A nimal W elfare Institute and the British C olumbia S PCA .

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States and countries In some countries, individual states can pass their own legislation, and there are instances of legislation favouring animal welfare. In the US , F lorida banned gestation crates for sows in 2002 and C alifornia legislated in 2004 to phase out force feeding of poultry for foie gras production. However, market forces militate against such legislation because there is resistance to any measures that reduce competitiveness with other states. M any countries are developing legislation for animal welfare. T his varies from codified lists of actions that are prohibited to simple statements that animals must not be ill-treated. Both may be backed by more detailed advisory codes. In European countries, however, legislation is increasingly subject to the wider groupings discussed in the next section. Groups of countries T he European U nion (EU ) has more comprehensive legislation for animal welfare than anywhere else in the world. This is partly influenced by the wider grouping of the C ouncil of Europe, with 47 countries and the EU as members. T his has stated that ‘the humane treatment of animals is one of the hallmarks of Western civilisation’. T he EU passes D irectives, which then have to be translated into national legislation. In the current context there are two particularly relevant D irectives. A D irective on husbandry systems for laying hens was passed in 1999 (C ommission of the European C ommunities 1999), the provisions of which included phasing out barren battery cages by 2012. It promised a review, before it came into effect, taking into account ‘the socio-economic implications of the various systems’; this was produced in 2008 and confirmed all the provisions in the D irective (C ommission of the European C ommunities 2008). A Broiler D irective was passed in 2007 (C ommission of the European C ommunities 2007). T his was weaker than earlier drafts, apparently because of concerns over the pressure of imports of chicken meat and the threat to the industry of avian influenza. T here are some moves to include consideration of animal welfare in other groupings, such as F ree T rade A reas. T he EU is including measures for animal welfare in bilateral trade agreements, for example with C hile: primarily those that overlap with measures to protect food hygiene, such as controls over handling and slaughter methods. Intergovernmental organizations O n a worldwide scale, the W orld O rganization for A nimal H ealth (OI E) has recognized that animal health is affected by other aspects of animal welfare. It has therefore established the first global animal welfare standards, starting with transport and slaughter practices (OI E 2005) and following up with consideration

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of husbandry. T hese have been agreed by the 167 member countries, but many countries have not yet made progress on implementation. O ther intergovernmental organizations are recognizing the contributions of animal treatment and animal welfare to economics and to poverty and hunger reduction. F or example, the International F inance C orporation, part of the W orld Bank Group, has issued guidelines on ‘Creating business opportunity through improved animal welfare’ (2006) and on ‘Animal welfare in livestock operations’ (2007). Are Standards Compatible with Free Trade? T he multiplicity of standard-setting agencies and standards outlined in the previous section suggests that the answer to whether such standards are compatible with increasingly competitive trade is not simple, but is nevertheless in many or even most cases positive. T he main motivation for creation of standards is increasing public concern for farm animal welfare (including in developing countries, as evidenced by the unanimous support for standards from all member countries of the OIE). As such, few standard-setting agencies will back down in the face of competition, in a business environment that is increasingly requiring corporate responsibility and accountability for ethical matters including animal welfare. T hus a senior executive of Burger King commented (England 2002) that their customers expect them – the restaurant company – to ensure that the animals supplying them with food are properly looked after. Indeed, the fact that corporate decisions on animal welfare are based on consumer attitudes means that they are based on broad market considerations rather than on narrow accounting of only the cost of food animal production (which is anyway just a small component of final product price) (Appleby et al. 2004). T his grounding in consumer preferences means that availability of information on the welfare of food producing animals is often important, whether by product labelling or by other means such as company or national websites. S ome standards are neutral for production costs – although it has to be said that this includes some anodyne ‘standards’ that do little or nothing more than codify existing practices rather than actually improving welfare. S ome reduce costs – and it is important to note that, as with the work by Hemsworth (2004) and Grandin (2004) described above, this may be a surprise. W hen the US group U nited Egg Producers (2002) started to phase in larger space requirements for hens in cages, many producers introduced the final target space allowance rapidly rather than slowly. T his was because, contrary to their expectation that housing the maximum number of hens per cage would maximize profits, they found that reducing stocking density improved production and feed conversion efficiency by individual hens, saved on feed costs and improved profit overall. S ome standards do increase costs, but will survive for various reasons. S ome generate greater income, particularly in niche markets, and there is every indication

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that speciality markets will continue to grow, including for high-welfare products, becoming less of a minority ‘niche’. A s noted above, standards for welfare also overlap with those for other criteria such as organic production. T his is important both for niche sales and because wider welfare standards will be protected and even promoted by the fact that they have common characteristics with other imperatives such as environmental protection and food hygiene (A ppleby et al. 2003). T rade is thus not wholly free, and this is particularly true of international trade. A country’s own animal food products, produced to certain welfare standards, may be promoted by its authorities (by advertising, use of tariffs and so on) and favoured by its citizens both because of those standards themselves and for other reasons such as local food security. T here are also practical factors supporting incountry production, notably transport costs and hygiene controls – although these certainly do not always overwhelm other factors. T hus egg production in Europe is subject to competition from imports (partly because of costs associated with higher welfare, but more because of other costs such as labour and feed being greater than in competitor countries). T his will probably have little impact on sales of European-produced whole eggs, but more on those of liquid and dried egg products, which are both more easily transported and sterilized. W here restrictions on international trade exist, not directly warranted by the W orld T rade O rganization, they may be challenged under that authority, and the precedents for welfare safeguards being permitted are not good. H owever, no challenges on welfare grounds have yet been made, and one possible defence increasingly mentioned is A rticle XX of the General A greement on T ariffs and T rade (W orld T rade O rganization 2007), which says: ‘N othing in this agreement shall be construed to prevent the adoption or enforcement by any contracting party of measures (a) necessary to protect public morals [or] (b) necessary to protect human, animal or plant health’. N ations faced with imports from countries with lower welfare standards could argue that protecting the welfare of their farm animals was important for public morals and both human and animal health. It remains true that the pressure of increased trade, both domestic and international, makes creation, strengthening or even maintenance of animal welfare standards even more difficult than in a less competitive market. Some standards may prove incompatible with an increasingly free market, although the arguments presented above suggest that these will be few. Perhaps the strongest effect of freer trade will be a reduction in the creation of new standards, or a weakening of any created – as with the European Broiler D irective discussed earlier. Y et free trade does not occur in a vacuum: it could be argued that other changes in the environment within which food production occurs are equally important, such as information exchange. Increased communication about animal welfare is maintaining the upward trend in international awareness. People concerned for animals hope, with some justification, that the positive effects of such awareness on farm animal welfare and on welfare protection standards are accelerating (T urner and D ’S ilva 2006).

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Conclusion Programmes setting standards for farm animal welfare have increased markedly in recent years, varying in strength from cosmetic to demanding, and in the agencies establishing them from individual farmers to intergovernmental organizations. T he main motivation is increasing public concern for farm animal welfare, which overlaps with other concerns for food hygiene and environmental protection. M ost will therefore survive the pressure of increasingly free trade: indeed, some prove in practice to reduce costs or to increase or protect income in other ways. Increasing competition may prevent or weaken creation of standards in future, but the impetus for high food quality (in a broad sense, including its provenance and effects) will continue to increase worldwide, thus requiring any further freeing-up of trade to be compatible with continuing standards for farm animal welfare and other aspects of food production. Acknowledgment S ome of the material in this chapter was prepared as a contribution to a co-operative programme of universities in the Great Lakes region of the USA and the Baltic countries on Ecosystem H ealth and S ustainable A griculture (A ppleby 2008). References A ppleby, M .C . (2005) ‘S ustainable agriculture is humane, humane agriculture is sustainable’, Journal of Agricultural and Environmental Ethics, 18, 293–303. A ppleby, M .C . (2008) ‘C an farm animal welfare standards be compatible with free trade?’, in C. Jakobsson, A. Gustafsson, A. Kaasik, J. Sumelius and A. F eher (eds) Ecosystem Health and Sustainable Agriculture (U ppsala: Baltic U niversity Press). A ppleby, M .C ., C utler, N ., Gazzard, J., Goddard, P., M ilne, J.A ., M organ, C . and R edfern, A . (2003) ‘W hat price cheap food?’, Journal of Agricultural and Environmental Ethics, 16, 395–408. A ppleby, M .C ., M ench, J.A . and H ughes, B.O . (2004) Poultry Behaviour and Welfare (W allingford: CA B International). Bennett, R .M . (1997) ‘Economics’, in M .C . A ppleby and B.O . H ughes (eds) Animal Welfare (W allingford: CA B International), 235–248. C ommission of the European C ommunities (1999) ‘C ouncil D irective 1999/74/ EC laying down minimum standards for the protection of laying hens’, Official Journal of the European Communities, 3rd A ugust 1999, L 203, 53–57. C ommission of the European C ommunities (2007) ‘C ouncil D irective 2007/43/ EC laying down minimum rules for the protection of chickens kept for meat production’, Official Journal of the European Union, 12 July 2007, L 182, 19.

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C ommission of the European C ommunities (2008) ‘C ommunication from the C ommission to the European Parliament and the C ouncil on the various systems of rearing laying hens in particular those covered by D irective 999/74/ EC ’, Official Journal of the European Union, 2008. England, C . (2002) ‘Burger King and animal welfare: W hy did this company get involved?’, Proceedings, Canadian Association for Laboratory Animal Science and Alberta Farm Animal Care conference (Edmonton: C anadian A ssociation for Laboratory A nimal S cience), 13. Fraser, D., Weary, D.M., Pajor, E.A. and Milligan, B.N. (1997) ‘A scientific conception of animal welfare that reflects ethical concerns’, Animal Welfare, 6, 187–205. Grandin, T . (2004) ‘Principles for the design of handling facilities and transport systems’, in G.J. Benson and B.E. R ollin (eds) The Well-Being of Farm Animals: Challenges and Solutions (Ames: Blackwell), 145–166. Hemsworth, P.H. (2004) ‘Human-livestock interaction’, in G.J. Benson and B.E. R ollin (eds) The Well-Being of Farm Animals: Challenges and Solutions (Ames: Blackwell), 21–38. H umane S ociety of the U nited S tates (2007) ‘S tatement on A merican Veal A ssociation’s Veal C rate A nnouncement’, . International F inance C orporation (2006) ‘C reating Business O pportunity T hrough Improved Animal Welfare’, <www.ifc.org>. International Finance Corporation (2007) ‘Animal Welfare in Livestock Operations’, <www.ifc.org>. Kaufman, M. (2007) ‘Largest pork processor to phase out crates’, Washington Post, 6 January 2007, p. A 06. McInerney, J.P. (1998) ‘The economics of welfare’, in A.R. Michell and R. Ewbank (eds) Ethics, Welfare, Law and Market Forces: The Veterinary Interface (W heathampstead: U niversities F ederation for A nimal W elfare), 115–132. National Pork Board (2005) ‘Swine Welfare Assurance Program’, <www. porkboard.org/SWAPHome>. OIE (World Organization for Animal Health) (2005) <www.oie.int/eng/press/en_ 050602.htm>. S en, A . (1987) On Ethics and Economics (Oxford: Blackwells). T urner, J. and D ’S ilva, J. (eds) (2006) Animals, Ethics and Trade: The Challenge of Animal Sentience (London: Earthscan). U nited Egg Producers (2002) Animal Husbandry Guidelines for U.S. Egg Laying Flocks’ (A lpharetta, Georgia: U EP). Whole Foods Market (2007) ‘Animal Welfare’, . W orld T rade O rganization (2007) ‘WTO D ocuments’, .

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PART II BIO ETHICS

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C hapter 9

Puzzle-Solving for Fun and Profit: The A busive Potential of N on-Genetic H ealth Data in Epidemiological Biobanks Anne Maria Skrikerud and Jon Grov

Biobanks as Databases Traditionally the debate on risk of re-identification in biobanks has focused on re-identification through possible release of genetic information, and economic loss connected to such an event. The risk is real enough and has been debated on several occasions with the data connected to the publishing of genetic material in for example biobanks like the Human Genome Project or other similar projects (M cGuire and Gibbs 2006). In public debate this led to an emphasis on the potential of abuse of genetic information and the importance of protecting the privacy of donors to biobanks (Annas 1995; Annas, Glantz, and Roche 1995). In the last few years a number of very large research biobanks have been established. With several hundred thousand donors, each of these biobanks is used for present and future projects in epidemiological research on common multifactorial diseases. Examples of such biobanks are the UK-biobank, deCODE Genetics in Iceland, the Estonia Genome Project, and the M other and C hild Biobank in Norway. The information in these biobanks is based on biological tissues and other health data collected continuously from health records or based on one or several health screens or questionnaires. Thus these biobanks contain both non-genetic health information and genetic information. In contrast to traditional research where one researcher works with a set of paper-based data, researchers in epidemiological biobanks are dependent on a large staff of experts in laboratory work, bioinformatics and system administration. De-identified sensitive data is available not only to one individual but to a whole department. The time when researchers locked their results in a filing cabinet to which only they had the key is long gone. The research data is digitalized and placed on a server in an electronic database. W hat characterizes databases is that in addition to the collected dataset, an electronic database provides standardized functions to allow users to search filter and combine individual records. A modestly designed laboratory of computer hardware can perform several thousand complex requests per hour. C onsequently, discovering patterns and correlations even across large, independent datasets may be processed within a few hours, especially by

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people who know what to look for. These properties naturally create the potential for misconduct. The data connected to a population biobank is strictly speaking both confidential and de-identified. The privacy and confidentiality of the donor is therefore assumed to be protected. The effectiveness of de-identification heuristics have been evaluated in previous studies (El Emam et al. 2006; O choa et al. 2001; S weeney 2002). In ‘k-A nonymity: A model for protecting privacy’, Latanya S weeney shows how research data can be abused if the de-identification method is weak. In doing so she uses so-called ‘quasi-identifiers’. ‘Quasi-identifiers’ are variables that are not unique to one individual, but in combination with other quasi-identifiers can give a unique pattern that may be used for identification. These data are found in most population biobanks. Her example is a database used for health research in the USA. This database contained the quasi-identifiers gender, home postal-code and date of birth, together with the full medical history of 135 000 state employees. F rom the publicly available voter registry, she found that governor W illiam W eld was uniquely identified by these three values. Consequently, retrieving his medical record from the supposedly anonymized research data would be easy. Date of birth is a strong quasi-identifier, and one may ask if anonymity is ensured by removing this field. According to El-Emam and his team, combinations of for instance data such as gender, age (in years), profession and postal-code can represent an unacceptably high risk of re-identification. In addition to the quasiidentifiers listed above, biobanks will typically also include data on marital status, ethnicity and income. In this chapter we discuss how databases in epidemiological population biobanks may be used to re-identify of individual donors, and what this would mean for the evaluation of risk to the donor. Risk Scenario Keeping in mind the properties of the database, let us consider the following scenario made possible by these properties. A research fellow in a research department with access to a population biobank consisting of a couple of hundred thousand donors is unsatisfied with his financial situation and decides to take advantage of the data that is available to him. He decides to focus his financial initiative on the inhabitants of his own town, more specifically those registered in the telephone book. His skill in basic computer programming allows him to program his computer to find and register as much data as possible about his fellow town citizens available on the internet. He will typically find their gender, age and home address, together with data about what education they have, what companies they are employed in, and family relationships and hobbies. H e creates a systematized database of information, which fortunately for him is fully identified. Then, he requests from the biobank database all data belonging to donors in his hometown, and copies them to his own computer. This will make it easy for

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him to copy unnoticed all data in the biobank for donors of his hometown. The puzzle-solving can now begin. W hen the databases are joined there is good reason to believe that a sufficient number of donors will be identified to make the trouble worthwhile. The knowledge gained may be used in various ways. For example it can be sold to insurance companies and advertisement companies or it may even be used for blackmailing purposes and organized crime. The important point is; if one has access to a de-identified data set containing a sufficient number of quasiidentifiers, and the number needed is often small, identification of a significant proportion of the data set is only a question of skill and willingness to go through the trouble of re-identification. Discussion Risk–benefit Epidemiological population biobanks are characterized by having a collection of a lot of information about several hundred thousand individuals. T his information is not only related to which illnesses the donors suffer from, but also which illnesses they have never suffered from, what food they eat, what hobbies they have, what sport activities they engage in, what work they do, what chemicals they have been exposed to, where they live, and what their family relationships are. The biobank may even contain data about personality characteristics. T his information may also be saved somewhere else, but not together in the same database. Having data about a relatively large number of the population in one biobank and database, the researcher can pick out donors with one specific characteristic, for example, a disease, and compare this group with the rest of the population, looking for statistical differences. The objective is to find causes and risk factors for various multifactorial diseases. If the group is big enough and the data set rich enough, this can be done over and over again looking for various diseases and their correlations. The number of donors in the biobank, and the kind of information that is available about them, thus directly affects the utility of the biobank. In liberal utilitarianism, the benefit of an action is measured against the harm it creates. The greater the harm the more benefit the action must produce in order to judge the action as good. ‘A n act is good if it produces good to those who will be affected by it; and the more good it produces, the better’ (Takala 2003). Weighing benefit, against harm or good against bad with regard to the consequences is the essence of utilitarian thinking and thus also of liberal utilitarianism. In principle, there is no harm to the donor by donating data to the biobank. Data and tissue  ������������������������������������������������������������������������������������ W hen we use the concept ‘liberal utilitarianism’ henceforth we refer to the liberal utilitarian ethics as outlined in Matti Häyry’s book Liberal Utilitarianism and Applied Ethics (H ayry 1994).

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samples are given to the biobank and after that the donor may go happily home, knowing that he has contributed to developments in medicine. So any potential harm to the donor must be rooted in the information the biobank has collected about the donor. In Genetic Engineering and the Risk of Harm, Matti Häyry and Tuja Takala analyze the concept of risk (Häyry and Takala 1998). They define the concept risk in the following way: ‘Risk can be defined as the possibility or probability of harm – that is, of loss, an injury, an unwanted outcome or an undesired result’ (H äyry and Takala 1998). If we consider that our scenario is a possibility, and that the event of such a possibility will be harmful to the individual, this understanding of risk applies to the donors of biobanks. Our following analysis is based on Häyry and Takala’s analysis of the concept of risk and adjusted to population biobanking. The risk to privacy and confidentiality in population biobanking may be understood in two different ways. The first way to understand the risk is that personal and sensitive information can be released to the public by an accidental mistake or undesired technical event. T his is assessed rationally and technically, and measures can be taken to prevent this from happening (Häyry and Takala 1998). Donors are de-identified and strict internal and legal security measures must be followed. The second way to understand the risk reflects our scenario: the potential for abuse and private economic profit. The value of population biobanks is reflected by the utility, and thus the more donors and individual data a biobank contains the higher the possibility of harm to society by individuals’ right to privacy being endangered. ‘The danger [of harm] is that the decision-makers act immorally, not that they have miscalculated the consequences of their actions’ (Häyry and Takala 1998). To this one should add the following: we know that people act immorally, and we know that people with bad intentions are employed in the health sector. What characterizes the last aspect of risk in biobanking is that the danger of harm this constitutes may be poorly handled by yet another regulation directive or by increased security measures. In our scenario the ethical problem lies in the unforeseen and the potential for abuse by others. In epidemiological biobank research there is risk of harm, a risk of abuse and identification. This risk cannot be statistically accounted for. Rather the risk is to be understood as a hypothetical consequence, a future worst-case scenario. This may be difficult for officials to relate to, and consequently easy to ignore, while focusing on the paramount utility of the research enterprise. In addition it is an ethical problem that distinguishes itself from risks in other parts of medical research, and consequently not yet acknowledged in the same way. Privacy at risk So is epidemiological population biobanking a good or a bad thing? A good health system is one of the fundamental needs of human beings. It affects the quality of life as well as mortality in obvious ways, not needed to be elaborated further in this chapter. A health system is good when the knowledge base

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of medical practice is supported by research of an adequate scientific standard. So research on diseases and the human being is necessary to maintain a good health system. Privacy, on the other hand, is not so clearly defined. We know that people can live long lives without privacy, and that their lives can still be happy. S till, there is something about privacy that means that it is not easily given up voluntarily. T he right to privacy, together with the right to property, is one of the basic rights in our society that defines itself as democratic As an essential value of all our Western democracies, it may not easily be traded for health without giving up essential parts of our identity. Privacy involves a feeling of control and ownership of what basically constitutes our self (A lmond 1991; R eiman 2000; S umner 1987; W arren and Brandeis 2005). In a worst-case scenario in which all the donors in a biobank are successfully re-identified, we may have a society in which several hundreds of thousands of individuals are robbed of the right to privacy. S uch a situation would not be consistent with the idea of a just and egalitarian democratic society, even though the lack of privacy is due to a voluntary action. The consequence would be a divided society in which one part does not share the same privileges as the other part. ‘…[L]iberal utilitarianism states that what is good and desirable can be defined, either directly or indirectly, in terms of hierarchically ordered needs’ (H äyry 1994, 104). Health is considered to be a benefit that out-competes most other benefits apart from life, meaning that an action that is of little benefit to health, but of great disadvantage in another area, is to be preferred to an action of great pleasure, but little disadvantage to health. Häyry speaks of three basic needs that cannot be traded for less basic needs. T hese are life, health and liberty. If privacy is to be understood as a good of lesser importance than health, liberal utilitarianism sanctions epidemiological research biobanking, unless privacy is an aspect of liberty. But H äyry does not exclude the possibility that other needs or values can be on an equal level as health if they are considered basic. F or the sake of argument, one could assume that the right to privacy is such a basic need that it might qualify to be treated on the same hierarchical level as health. W e can consider what this entails with regard to another principle also relevant to this discussion that is the principle of other-regarding need frustration. T his principle states that it can never be right to expect other people to renounce their needs in order to satisfy your own needs. Liberal utilitarianism will therefore not consider an act where an agent renounces a need as a moral action or duty, in order to fulfil a lesser need of someone else. From the viewpoint of people with ill health, this means that they do not have the right to demand the donors to biobanks to jeopardize their privacy in order to obtain better health for themselves. S o, a couple of hundred thousand people may choose to waive their right to privacy to improve the health of future generations. T his may even be praiseworthy. H owever this cannot be seen as a moral duty but as an action of supererogation and voluntary altruism (H äyry 1994, 101–4). Voluntary actions though, demand that the moral agent is informed about the consequences and that the donor can

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make a thoughtful and autonomous decision about the action in question. It is clear though that the majority of donors are not fully aware of the risk to privacy. In fact, some information sheets (N orwegian Institute of Public H ealth T win S tudy 2005) to possible donors do not mention the risk to privacy. This means that the donors are not fully informed about the risk and can therefore not be said to be autonomous individuals who voluntarily waive their right to privacy. T he society that sanctions this type of research has responsibility for this, and thereby puts specific members of the population at risk in order to benefit the entire population in the future. The automatic escalator argument The scenario described above is only a hypothetical risk that might never happen. It may be reasonable to take a small risk of great harm in order to gain a great good. This is actually done every day in various activities like crossing the street, driving a car, climbing a ladder etc. T hese actions are sensible precisely because the risks are so low that they can be ignored (Häyry and Takala 1998). Population biobanking promises remarkable improvements to most people’s health prospects. T he common multifactorial diseases are the diseases that are considered most important to cure and consequently to carry out research on. T o understand the causes and risk factors associated with common multifactorial diseases, and eventually to cure these diseases, are highly valued aims in our society. Even if the worst happens, that data are stolen from a biobank and abused, research may still be considered reasonable, since the moral cost – an infringement of the privacy of a small percentage of the population – is considered low compared to the improved health of the whole population. The case for research with population biobanking may thus be argued for in the following way: 1. T here are (possible) moral costs associated with carrying out population biobank research such as risk to the privacy and confidentiality of the donors. 2. Carrying out population biobank research will lead to an understanding of the causes and risk factors for common multifactorial diseases, and eventually the prevention and cure of these diseases. 3. The understanding of the causes of and risk factors for common multifactorial diseases, and eventually the prevention and cure of these diseases is a great moral good. Conclusion: we should therefore carry out and promote population biobank research despite the possible moral costs to the donors. Holm and Takala call this way of arguing in modern biotechnology the automatic escalator argument (Holm and Takala 2007), an argument they consider often used in modern bioethical debate, ‘…invite[ing] us to incur certain moral

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costs for the mere possibility of gaining future moral benefits’ (Holm and Takala 2007). However, Holm and Takala reject the validity of the argument in utilitarian debate. T wo counterarguments to the automatic escalator argument may also be valid in the case of population biobank research. First, there is reason to believe that competing research programmes of less moral costs also concentrate on the causes of and risks factors for common multifactorial diseases, thus making population biobank research wholly or partially redundant. Second, it is reasonable to believe that the moral costs will be incurred long before we recognize any advantage of population biobanking. In addition the risk that donors take by donating data to a population biobank cannot directly be compared to the utility, since the donors are not necessarily the people who will benefit from increased knowledge about diseases or improved health of the population. T he automatic escalator argument is therefore not valid as an argument to support the practice of biobanking as such. For each biobank project, a realistic estimate must be made of the probable benefits of the specific project and this realistic estimate must be weighed against the risks to privacy involved in the project. It may well turn out that the estimated benefits of population biobanking will fail to be met. Risk estimation should take account of a situation in which population biobanking does not improve the public health at all. Re-identification from health data has already happened so the risk should not be ignored (Ochoa, R asmussen, R obson, and S alib 2001; S weeney 2002). Conclusion In Genetic Engineering and the Risk of Harm, Häyry and Takala also discuss the concept of acceptable risk, which they refer to as ‘the acceptability of expected harm and the acceptability of its probability’ (Häyry and Takala 1998). They mean that, a risk that may cause a great harm is acceptable if there is a low probability for the harm happening or if the harm would be tolerable. In our scenario this would mean that the harm caused by re-identification would be unbearable, but that the probability for it to happening is so small that it could be accepted or that the harm is actually quite probable but would not in any way be unbearable for the harmed individual. Before we ignore the risk of re-identification or deem the possible risk of harm as unbearable with the consequences to population biobanking, we have to assess whether the risk of harm would be tolerable to the donors. The ‘risk for a given group is not determined exclusively by the facts of the matter, but also by the way they evaluate them’ (Häyry and Takala 1998). If re-identification happens to one individual or a few individuals the lost privacy harms only one or a few individuals. If re-identification happens to many, it turns into a national problem and may have harming effects on the entire society. There are several ways to go about it if one wants to find compromising information about people in one’s home-town, most of them simpler than the

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method we have described here. But epidemiological population biobanks have this potential, and even if this has not happened yet, what a re-identification would mean to the individual affected should still be evaluated. T he question about whether to carry out population biobank research is really not the issue. In several countries epidemiological population biobanking has the support of both the public and governmental institutions. W e also feel a naïve excitement when it comes to biobanking and the possibilities for gaining knowledge about the common diseases that we all strive to avoid. In our opinion the risk of re-identification and biobanking must be debated and brought to the attention of research departments that use biobanking, donors, the regulating authorities, and the public in general. Acknowledgment We wish to thank the supervisor of Anne Maria Skrikerud, Professor Søren Holm, The Norwegian Research Counsel and the GenomEUtwin project for financial support, Professor T homas Pogge, Professor Vilhjálmur Árnason, and the staff at section for medical ethics for useful comments. A n early version of this chapter has been presented at the European S ociety of Philosophy, M edicine and H ealth C are’s 21st annual C onference in C ardiff, 2007. References A lmond, B. (1991) ‘R ights’, in P. S inger (ed.) A Companion to Ethics (O xford: Blackwell Publishing), 259–269. A nnas, G. (1995) ‘Editorial: Genetic Prophecy and Genetic Privacy – C an W e Prevent the D ream from Becoming a N ightmare’, AM J Public Health, 85: 9, 1196–1197. A nnas, G., Glantz, L., and R oche, P. (1995) ‘D rafting the Genetic Privacy A ct: S cience, Policy and Practical C onsiderations’, Journal of Law, Medicine and Ethics, 23, 360–366. El Emam, K., Jabbouri, S ., S ams, S ., D rouet, Y., and Power, M . (2006) ‘Evaluating Common De-identification Heuristics for Personal Health Information’, J. Med. Internet Res., 8:4, e28. H äyry, M . (1994) Liberal Utilitarianism and Applied Ethics, F irst edn (London and New York: Routledge). Häyry, M. and Takala, T. (1998) ‘Genetic engineering and the risk of harm’, Med. Health Care Philos., 1:1, 61–64. Holm, S. and Takala, T. (2007) ‘High hopes and automatic escalators: a critique of some new arguments in bioethics’, Journal of Medical Ethics, 33:1, 1–4.

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McGuire, A.L. and Gibbs, R.A. (2006), ‘Genetics: No Longer De-identified’, Science, 312: 5772, 370–371. N orwegian Institute of Public H ealth T win S tudy (2005), Invitasjon til en studie av gener, livsstil, miljø og helse. Ochoa, S., Rasmussen, J., Robson, C. and Salib, M. (Unpublished) ‘Reidentification of Individuals in C hicago’s H omicide D atabase: A T echnical and Legal S tudy’. 5-5-2001. R eiman, J.H . (2000) ‘Privacy, Intimacy, and Personhood’, in E.M . Barendt (ed.) Privacy (A ldershot: A shgate/D artmouth), 23–41. S umner, L.W . (1987) The Moral Foundation of Rights (O xford: C larendon Press). S weeney, L. (2002) ‘k-A nonymity: A M odel for Protecting Privacy’, International Journal of Uncertainty, Fuzziness and Knowledge-based Systems, 10: 5, 557– 570. Takala, T. (2003) ‘Utilitarianism Shot Down by its Own Men?’, Cambridge Quarterly of Healthcare Ethics, 12:4, 447–454. W arren, S .D . and Brandeis, L.D . (2005) ‘T he R ight to Privacy’, in A .D . M oore (ed.) Information Ethics: Privacy, Property, and Power (S eattle: U niversity of W ashington Press), 209–225.

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C hapter 10

T he Ethical T opography of Research Biobanking Jan R einert Karlsen and R oger S trand

In that Empire, the A rt of C artography attained such Perfection that the map of a single Province occupied the entirety of a C ity, and the map of the Empire, the Entirety of a Province. In time, those Unconscionable Maps no longer satisfied, and the Cartographers Guilds struck a Map of the Empire whose size was that of the Empire, and which coincided point for point with it. T he following Generations, who were not so fond of the S tudy of C artography as their F orbearers had been, saw that that vast M ap was U seless, and not without some Pitilessness was it, that they delivered it up to the Inclemencies of S un and W inters. In the D eserts of the W est, still today, there are T attered R uins of that M ap, inhabited by A nimals and Beggars; in all the Land there is no R elic of the D isciplines of Geography. (Jorges Luis Borges, ‘O n Exactitude in S cience’)

Introduction: The Problem of Mapping A map is a symbolical representation of a terrain. A ny terrain can be represented in a number of ways, depending on the function of the map along with the skills and ingenuity of the cartographer. H ence, the diagrammatic map of the London T ube devised by Harry Beck in 1933 was considered an improvement of the 1912 map, not because it offered a more accurate geographical depiction, but rather because its mode of depiction was not concerned with geography at all. In this sense Beck’s diagrammatic map represents less a reduction than an invention. C ompared to the 1912 map, which depicts London and the different subway lines and stations in geographically and proportionally correct distances from each other, Beck’s map is only concerned with three analytic parameters, namely 1) lines (represented in different colours), 2) intersections of lines and 3) sequence of stations. T he geographical order almost entirely has been replaced with an abstract, analytic order. W hile the 1912 map allows its reader to orient himself through a spatial   Borges, J. (1998), Collected Fictions (New York: Penguin Books).  �������������������������������������������������������������������������������� The London Underground maps are subject to strict copyright. Beck’s map of 1933 is readily found on URL (last accessed 14 January 2007), while the 1912 map can be found e.g. on UR L (last accessed 14 January 2007).

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correlation between the map’s symbolical representation and the city terrain, what we have in Beck’s map is a picture of an underground human conduit with entrance and exit points laid out as pure analytic sequences. H owever, by removing the geographical terrain from the map, its function also changes. The function of the 1912 map was to make travelling in London easier by providing geographical exactitude and some detail. In 1933 the traveller’s geographical mode of orientation has been replaced by the idea of transportation, that is, travelling cut down to a matter of getting from ‘a’ to ‘b’. A ccording to this latter idea, the geographically situated interval between ‘a’ and ‘b’ in itself is useless, or at least superfluous, and hence, in a sense worthless. Indeed, one could say that Beck’s improvement was to recast London travelling in terms of mass transportation – a mode of travelling that also approximated better to the ideas of progress and efficiency of the era. While travelling at least requires a judgment on how to get from one place to another, the basic idea of transportation is similar to that of logic: ‘a’ is only of interest if it leads to ‘b’. Hence, Beck’s ingenious symbolical representation of the London T ube not only changed the way entire metro systems became mapped in posterity, but also how city travelling, its planning and organization, even city life itself – at different levels and to various extents – became detached from the geographical terrain in which the citizen child or the wanderer, over time, constitutes his or her own sense of space. The superiority of a diagrammatic map lies in its increased efficiency to communicate a string of data – a procedure – purged of extraneous information (Vidler 2001). Its success, then, is as much linked to its ability to hide excess information as in its ability to show only what one needs to know. This does not mean, however, that the symbolical representation of Beck is severed from reality and should be considered ‘ideology’ in the sense of creating false consciousness. W e are not dealing with a comforting symbolical representation whose function is to hide disturbing sides of reality from those who have to endure them. In fact, the diagrammatic map of Beck redefines reality through a non-identical symbolism that is at the same time highly functional. W e only see what we need to see, relative to the diagram’s rational norm. S ubstituting geographical orientation with sequential orientation, this norm, to a certain degree, must account for the oft geographically disorientating experience of utilizing diagrammatic subway maps. Mass transportation, as envisaged in the map of Harry Beck, does not require the knowledge of how the stations, lines and the city are geographically connected as a whole. T he reason for this is that the functionality of a map is not necessarily connected to its representational force: Its usefulness is as much a function of its propensity to conceal certain aspects of reality as its ability to illustrate and hyphenate others. S imilar to an inventory or a procedure, a map therefore may give a false sense of completeness; that the order represented is identical to an existing order, or at least; that what is not represented is redundant. W hen we have chosen to introduce this chapter with some thoughts on the cartography of subway maps, it is because maps contain features that we do not normally think about when we use them. This chapter is about such tacit

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features, but of a different map. M apping the ethical, legal and societal issues (ELSI ) of emergent sciences and technologies (S &T s) has been consolidated as an institutional approach to handle complex and oft conflict-laden moral and political issues (European C ommission 2007). In this chapter we analyze how a particular ELSI map was employed to facilitate ethical and efficient mass transactions of human biological material for research purposes, so-called research biobanking. Taking the Norwegian Grey literature on biobanking and Act relating to Biobanks (2003) as our point of departure, we situate our analysis in the broader context of European policies and international ELSI research. O ur analysis suggests that the current ELSI map employed in policies on research biobanking has severe shortcomings. T hese shortcomings pertain not simply to how the map represents the complex moral and societal issues at stake, but a fortiori how the instruments it prescribes to solve these issues are allowed to take upon new and morally dubious functions. W e argue that these emergent functions not only can be attributed to the way the universal language of medical research ethics (WMA 1964; C ouncil of Europe 1997; CIOMS 2002) has been extrapolated onto the topography of research biobanking, but also to the broader institutional and political functions this odd form of cartography has attained (European C ommission 2007, 47–48). The Making of the Norwegian Act Relating to Biobanks On 28 January 2000, a committee (forthwith the Biobank Committee) was appointed to address issues pertaining to the collection, storing, processing, and destruction of human biological material in N orway (NOU 2001). S eventeen months later the C ommittee handed over their report to the N orwegian M inistry of H ealth and C are. F rom here, the 155-page long W hite Paper was sent out on public consultation to a wide range of institutions and organizations, including various research institutions; the regional and national boards on research ethics; different userorganizations such as patient’s organizations; as well as the institution responsible for overseeing data security in N orway. O f the 80 institutions that responded, 26 of them were without remarks. During the winter of 2001–2002 the issues were discussed further in the M inistry, and in M arch 2002 a Proposition was sent to T he Norwegian Parliament (Stortinget) for political discussion (Sosialkomiteen 2002). T he Proposition contained an excerpt from the W hite Paper; a brief discussion between the political parties represented in the C ommittee of H ealth and Public A ffairs; and a bill with comments and suggested changes put forth by the different political representatives of the C ommittee. N early a year later – on 28 January 2003 – the Parliament passed the bill. O n 1 July 2003, almost three and a half years after the Biobank Committee started their work, the Norwegian Act Relating to Biobanks was put into force, stating explicitly in its preamble paragraph the objective of ensuring an ethically responsibly regulation (S tortinget 2003, §1). T hough there had been little debate in the broader N orwegian public up to the enactment of the law in January 2003, the political process leading up to the final

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law was nonetheless marked by deep conflicts. These conflicts revolved around how strict consent procedures were to be applied; how and to what extent industry and commerce should be regulated, and even, down to the very question of how biobanks should be defined. In fact, these issues were so divisive that the political rematch of the law had started almost a month before the law was put into force. O n 6 June 2003, the new Government in power put up a new W hite Paper C ommittee, named after the physician who chaired it (forthwith the N ylenna C ommittee), to undo legal provisions that increasingly were seen by scientists, politicians and industrialists to be impractical, inefficient, costly, as well as negative (NOU 2005). Referring to the Act Relating to Biobanks, the new committee wrote: ‘The regulations often have other primary goals than to secure good quality research. Preventing abuse and irresponsible research seems to be of higher importance. S uch a negative angle may contribute to diminishing the trust in an activity that is of a basic value for society. H ence, there is a danger that the regulations attain unthought-of consequences and create unnecessary obstacles’ (NOU 2005, 14). The ‘danger’ alluded to was specific, written informed consent procedures. Though the law proposal put forth by the N ylenna C ommittee has not yet been passed in Parliament, this ‘danger’ already has more or less been removed by practices installed by the regional ethics committees (R EC s). A ccommodating to the needs for efficient mass transactions of biological specimen, broad consent has become practice in gene epidemiological research on human population biobanks. In the following, we will try to trace the origins and lines of conflict running through the making of the Norwegian Act Relating to Biobanks. The Norwegian Act Relating to Biobanks operates with two definitions according to the purpose of the bank: diagnostic and treatment biobanks, on the one hand, and research biobanks on the other. In ��������������������������������� the law a research biobank is defined as ‘a collection of human biological material and data obtained directly by the analysis of this material obtained from human beings’ (S tortinget 2003, §2). The reasons provided for utilizing this definitional difference were twofold. F irst, the developments within genetics, biotechnology and bioinformatics were perceived to make it increasingly difficult to uphold a strict separation between genetic material and the information obtained from it through assaying. S econd, the minority of the Biobank Committee held the view that the majority’s definition of a biobank, as simply ‘a collection of human biological material’ (NOU 2001, 18) would entail a more liberal regulatory approach to the information than to the donated material. In the end, it was the minority’s definition that came to be encoded into the final law. T o understand the concerns and worries expressed by the minority of the Biobank Committee one has to look to the underlying agendas, values and interests and how these in turn were articulated as concerns that could be approached through the language of medical research ethics. T his, however, is not enough. W e must also understand why the mapping of these concerns into an ethical language was perceived to provide solutions, and ultimately, how these solutions became constructed so as to facilitate research biobanking. As already mentioned, the

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choice of definitions was not arbitrary, but was shaped by concerns and worries of a more liberal regulation – but, concerns and worries about what? N orway has an abundance of large collections of biological material and health registries. T he meticulous efforts that have been laid down in the collection and storing of these samples and data, some of which even date back as far as the 1920s, were perceived to give N orway a comparative advantage over other countries enmeshed in the endeavour to exploit the scientific and economic values of biobanks. They were perceived to be a part of Norwegian’s common heritage (NOU 2001). In addition, N orwegian research in epidemiology was perceived to be of high international standard (NOU 2001). T he newfound interest in such registries and sample collections by venture capital, commerce and biotech-industry, meant that the resources, now perceived to be analogous with natural resources such as gas, oil, waterfalls and fish (see Annas 1999; Andrews 2001; Mander and Goldsmith 1996), had to be regulated in order to be protected from private and foreign economic interests. To fully appreciate this outlook on resources, one has to take into account that the exploitation of natural resources in Norway has, until recent moves towards privatization, been under strict state control. In fact, national control over natural resources runs parallel with N orwegian narratives of sovereignty and independence. T he sway they hold over N orwegian sentiments of national independence plays a major role in N orwegian political discourse. W hile the natural resources have been under strict state control, private interests have, under contracts and licenses, nonetheless been engaged in harvesting and exploiting them, resulting in huge revenues flowing into the treasury. Thus, the co-operation between state and private actors was deemed a necessary step from the very beginning, if the full potential of N orwegian comparative advantages was to be successfully utilized. The question of creating new biobanks also had to be dealt with. Involving private actors meant that new biobanks could be constructed in accordance with industrial and commercial interests, though these features had to be carefully weighed against the interests of individual donors and society at large. S ince the inception of the N orwegian oil adventure there has also been a debate whether the impact of the offshore oil and gas industry has eclipsed efforts to create a viable onshore industry in N orway, and currently there are but a few viable biotech companies in Norway. In this scenario, the facilitation of commercial biobanking was perceived to be a potential way to stimulate growth in this sector. O n a larger scale, these industrial agendas conformed well to the implementation of a knowledge-based society laid down by the ‘������������������������������� EU ’s 2000 Lisbon A genda, which includes the commitment to use scientific research to build the most competitive global knowledge-economy by 2010’ (European Commission 2007, 8). In other words, the complexity of the issues the N orwegian W hite Paper Committee was given the task to address, was considerable. Although Norwegian policy makers had the advantage of looking to other countries (Althingi 2000; Riksdagen 2002), some of these issues were more or less entirely new to the context of N orwegian law. N ot only did they have to identify and weigh the

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often divergent interests of science, society, research participants, industry and commerce, in a context where the interested are by no means distinct; they also had to take into account future scenarios, such as short and long term costs and benefits, expected revenues, the creation of new jobs, improved diagnostics, prevention and cures, and so on. In addition they had to approach the legal and ethical dilemmas presented by the biological ownership conundrum. In this quiet spectacle of divergent interest and problems, two main agendas were carved out from the rest: 1. One assumed that existing Norwegian biobanks, a well organized health care system with extensive health registers and databases as well as a generally trusting population gave ������������������������������������������� N orway a competitive edge in research biobanking, which���������������������������������������������������� in light of the nascent N orwegian biotech industry and of the potential interest from multinational biotech companies and pharmaceutical firms,���������������������������������������������������� could yield considerable economic revenues through the prospects of a knowledge-based industry. Regulation was deemed necessary to �������������������������������������������������������������� safe-guard the interests of science, industry and society. 2. T o protect the interests of donors. T o alleviate the concerns presented by the latter agenda, the N orwegian policies were to apply the language of medical research ethics to define the interests of donors. H ere, as elsewhere, informed consent requirements were given a central role. T he almost procedural articulation of informed consent lent it rather easily out to policymakers searching for an instrument that could codify ethical values, such as autonomy and integrity, in terms of legal rules. T hese rules would regulate the institutional interface between research biobanks and individual donors. A ccordingly, it would facilitate that the ‘collection, storage, processing and destruction of material that forms part of a biobank’ was to be ‘carried out in an ethically sound manner’ (S tortinget 2003, § 1). A s an effect, it was presumed that transactions of biological specimen, if carried out in accordance with these requirements, would gain sufficient ethical legitimacy and hence imbue research biobanking with public trust. The use of informed consent as an instrument to create public trust, however, is debatable on both moral and empirical grounds (Skolbekken et al. 2005; ������� H oeyer et al. 2005������������������������������������� )������������������������������������ . N evertheless, the perception that society at large would be reconciled by the exercise of the institutional control that such informed consent practices would warrant, seems to have pervaded the work of the Biobank Committee (NOU 2001, 50). It also meant that the legitimacy of the political macro-level of this agenda could be effectively pursued on the microlevel of the rational and autonomous individual (see Brekke and Sirnes 2006). Conversely, the course that the former agenda took provides an example that highlights the difficulties faced by the Biobank Committee. Reading the grey literature, it seems clear that the task to provide a regulatory framework for industrial and commercial biobanking, in the end, proved too difficult for the C ommittee to handle. Indeed, the law proposal put forward by the C ommittee

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included the development of industry in the preamble of its law proposal, but it is difficult to find any mechanism in the law that directly address the facilitation of such a development. O ur problem, then, concerns whether commercial and industrial interests actually were regulated, and if so, how and to what extent. T he ensuing debate in the M inistry of H ealth may shed some additional light on this problem and the subsequent course of events. T he problem pertains to the functions that medical research ethics came to adopt in relation to industrial and commercial biobanking. We must first, however, understand why the Biobank Committee didn’t reach consensus on how commercial and industrial interest ought to be regulated – or did they? An answer to this question is partly to be found in the internal conflicts on consent requirements. The minority of the committee advocated the use of written, specific and informed consent. T his precept would also apply to existing collections, which meant that new uses, not covered in the original consent, would require a renewal of the consent from the donor. In the advent of third parties accessing the material for other purposes than those covered under the original consent, this arrangement also would apply: ‘The material in such a biobank may not be lent or disclosed to others or transferred to another country unless this follows from the consent given’ (S tortinget 2003, § 12). A pplying the statutes of medical research ethics, donors were also given the right to withdraw their donated material at any given time. T he donated material would then be destroyed, along with the information stemming from it. C onversely, in instances where the donated material had become a part of a biological product or part of a process, or could not be traced back to the donor, this provision would cease to be in effect (NOU 2001). The majority of the Biobank Committee, on the other hand, was concerned that informed consent, if applied too strictly, would have the effect of impeding research efforts in this field. Invoking the notion of ‘donor fatigue’, they argued that it would put unnecessary strain on donors, and in addition be highly impractical. Potentially, it would also put Norway’s perceived competitive advantages at risk of dwindling out in the quicksand of bureaucratic peppermills. Thus, instead of a specific consent they advocated the notion of broad consent. This would allow researchers to utilize the donated material for purposes other than those specified to donors at the time of collection. It is important to remember that these consent requirements dealt with research biobanking alone. For therapeutic and diagnostic biobanks other requirements were to be followed. A lso, a complicated system of applications was constructed, partly to deal with exceptions to the general requirements of informed consent, as in the instances of deceased donors; where grave societal interests are at stake and the potential risk of donors were perceived to be equally small; but also in instances where material and information were to be transferred abroad. T hese applications would, according to their subject matter, either be sent to the M inistry of H ealth and Public A ffairs or submitted to R EC s for evaluation. A lthough the inefficient and somewhat complicated bureaucratic nature of these provisions was

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part of the agenda that inspired the rematch on biobank regulation, we will not deal any further with this here. Suffice to remember that regulatory measures were taken to address exceptions to the general provision of informed consent and – in the case of transferring information and material abroad – to retain control over national economic interests. T he question of biological property right was also discussed, though without being resolved. O����������������������������������������������������������� n the one hand, the C ommittee approached human biological material as part of our ‘common biological inheritance’ (NOU 2001, 51), in which already existing collections of such material was perceived as a ‘common good’. T his collective approach was also given moral weight by the principle of noncommodification of the human body and its parts stated in Article 21 of the Oviedo Convention: ‘The human body and its parts shall not, as such, give rise to financial gain’ (C ouncil of Europe 1997, A rticle 21). O n the other hand, the collective approach had to be balanced against the perceived interests of the individuals from whom these materials originated, as well as the interests of private actors, science and society. T hough nobody can be said to own their own biological material in an ordinary sense of the word, they argued, it is nonetheless the donor who should be considered the proper owner, if this question is to be pressed any further (NOU 2001, 64). R eiterating the precepts of the O viedo C onvention, the committee rejected ‘the notion that human biological material can be commercially exploited by the person that this material originates from’. W hile following up: ‘A t the same time, it must be accepted that human biological material is used in medical research and development of commerce. H uman biological material as such shall, however, not be subjected to buying and selling, or other forms of economic gain’ (NOU 2001, 52). T hough selling and buying human biological material as such would not be allowed, donors were given dispositional rights over their own biological material. In addition, if such materials were in any way transformed or were to become an intrinsic part of biological product, they could be sold. In practice, however, dispositional rights of donors were to be exerted mainly through informed consent. On ������������������������������������������������������� this regulatory backdrop, the inclusion of commerce and industry in the preamble of the proposed law, as put forth by the Biobank Committee, may not be so strange as first suspected. Indeed, the ingenious columbi egg of the N orwegian solution, as well as similar solutions from other countries and international bodies, is that the answer to the second agenda – that of utilizing medical research ethics to protect citizens’ interests – at the same time provides the mechanisms that facilitate the scientific, medical and economic objectives of research biobanking. It is in this sense we talk of the ‛ethical map’ of biobanking: the novel phenomenon of research biobanking was mapped in the language of medical research ethics in order to provide functional solutions to impossible problems: to facilitate mass transactions of gratis human biological material with potential economic value, in an ‛ethically sound manner’. Due to the excess of detail required by specific consent requirements, this regulatory mechanism, at first, proved to be inefficient. It was this inefficiency, among other perceived institutional obstacles, which paved the way for the political rematch on the A ct

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of 2003 and the R EC ’s acceptance of broad consent practices. H ence in this sense, the work of the Nylenna Committee was as much an extension of these policies as it was a corrective. In the next section we shall enter into the elements and origins of this ethical map in some more detail. The Ethical Map of Research Biobanking: Representations In employing analogies borrowed from cartography (map, diagram, topography), a possible misinterpretation of our methodological perspective is that we claim that others have produced a non-representational map of the ethical topography of biobanking, while we describe this topography as it is. N either do we have access to such privileged perspectives, nor is it our intention to pretend that we do. O ur perspective and description can also be viewed as a map with its functionality, its simplifications and limitations. T his does not, however, preclude us from criticizing other maps for their specific flaws and lack of detail. Moreover – and again from one’s own perspective – it is interesting to let the analysis make the step from a map to its topography, tracing the effects of the use of the map into the topography. A ccordingly, as was mentioned in the introduction, the success of Beck’s 1933 map of the London Tube has had consequences for life and transport in London. Likewise, the kind of normative maps we discuss here do not only depict a section of reality, they are a fortiori made to alter reality. T he topography will therefore to some extent conform to the map, as a result of being mapped. T his is true when the ethical issues are transformed into regulatory instruments and given the institutional authority of laws. Even though one should not exaggerate the effects of top-down policies to ethical problems, the ethical topography to be examined is not a terra nullius, a blank spot on the map to be filled in. F urthermore, in the case of maps it is possible to argue that some are more representational than others and carry more geographical detail. T he whole idea of scientific progress relies on this possibility; in optimistic moments one might hope for the same for the study of ethical, legal and social aspects and issues of technology. T he current section has been written in such an optimistic moment. T he inventory, as shown in T able 10.1, is not comprehensive. S till, it provides some of the most important cartographical elements of the ethical map in question. O n closer inspection, however, the elements seem to have been extrapolated from other topographies than research biobanking. Documenting that these concepts and precepts were developed to bear on other topographies with different ends, we ask to what extent these elements actually do represent the complex moral and societal issues of research biobanking. Moreover, we will ask whether their functions must not also change, as an effect of being extrapolated onto a new terrain. T o put it in more concrete terms: W hat happens when concepts and precepts extrapolated from medical ethics, biomedical research ethics, and the ethics of transplantation medicine are used to map the ethical issues of research biobanking? The former

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Table 10.1

Inventory of cartographical elements of an ethical map of biobanking

Concepts Biobank D onor and altruistic donor

Precepts Informed consent and broad consent The principle of non-commodification of the human body and its parts D ispositional right and the right to withdraw

H uman biological material as such Confidentiality and privacy

question on representation will be addressed here, the latter question pertaining to functions will be asked in the next section. Though existing definitions vary, the concept of ‘biobank’ relies on an obsolete understanding of biobanking that is derived from ‘repository’, ‘collection’ or ‘bank’, that is, spatially confined locations where human biological specimen are stored. While traditional biobanks, such as pathological collections, were localized at hospitals, contemporary biobanks often extend beyond the spatial confines of the localized repository and are linked together in infrastructures. This means that biobanks do not necessarily follow the geopolitical borders of local communities and national states. T hese matters are already inscribed in a globalized reality, both in terms of research and capital in order to construct the adequate infrastructures. This globalized characteristic is especially true if one also takes into account the digitalized datasets containing the genetic information stored on powerful servers, which have endless linking possibilities. Indeed, to harness the full potential of extant and future biobanks, connecting them in such bio-infrastructures will add tremendously to their scientific and economic value. It will also increase the probability of delivering health-related commodities such as improved diagnostic and therapies. T he concept of ‘donor’ is tied irrevocably to the concept of ‘gift’ and corresponding social institutions (altruism, reciprocity, swapping). H ence, the concept of the ‘altruistic donor’ gains its meaning when practices of giving biological material become governed by altruistic social institutions, such as those developed in transplantation medicine, viz. organ donation from deceased relatives. Contrary to the nebulous prospects that research biobanking will have on medicine, therapeutic biobanking involves the collection, storing and use of biological material to accommodate immediate and concrete human needs (organ transplantation, stem cell transplantation, blood transfusion). H ence, donating to therapeutic biobanks has a different moral dimension attached to it, which does not entail that donating to research biobanks is rid of such dimensions. The question is rather, while these policies evoke the concept of the altruistic donor, do they at the same time facilitate altruistic social institutions? W hereas extant pathological collection used for research purposes, for instance, also can be said to contain

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‘donations’, this would entail that we draw conclusions based on the similarities of words, rather than on underlying concepts, institutions and practices. T he former status of human biological material as residue, or even waste (A nnas 2004), must account for the fact that biological specimens often were taken by physicians, who would have found the precept, to ask before taking, tacitly meaningless. The changed status of human biological material, writ large, as an entity of potential and actual economic value is fundamental to the context of research biobanking. H owever, as long as one of the involved actors, that is, the donor, is not recognized as a contributing party to the economic aspects of research biobanking, the concept of the ‘altruistic’ donor, instead of being governed by an institution of altruism, will be governed by an institution more similar to colonialism (see M ander and Goldsmith 1996). T he concept of ‘human biological material’ utilized in national and international biobank policies involves a distinction between ‘human biological material as such’ and ‘human biological material that has become a product, part of a product or part of a process’ (NOU 2001). While this distinction can be traced back to Locke’s philosophical reflections on the nature and origins of property (1884), his philosophy lacks concepts for dealing with the philosophical challenges posed by the biological ownership conundrum (Karlsen 2006). According to Locke, property rights are natural derived rights. It is individual effort – or labour, in the words of Locke – that provides the essential basis for legitimate claims to property when commodities are manufactured from natural resources. W hat is interesting about this philosophy is that it prescribes almost all the value of a commodity to that added by labour. N atural resources, in themselves, are almost worthless (Locke 1884). Similarly, human tissue, cells and DNA as such are represented as if they were economically and technologically worthless until a certain point – a threshold – from where they ‘become a product, part of a product or part of a process’. A simple counter argument can be made against this distinction: if all types of human biological material as such are equally worthless, in pecuniary terms, which seems to follow from the very definition; then they also must be equally valuable, which would lead to the absurd conclusion that the value of the cells from M r M oore’s spleen, in the infamous Moore v. Regents of the University of California case, was equally valuable, or worthless, for M oore as they were for his treating physician, which de facto was not the case. R ather, the distinction seems to hinge more upon an asymmetry in technological access, reach and mastery than in any natural division between nature as such and human made artefacts. A lso, taking into account that the efficiency of transaction enabled by the infrastructure itself adds value, the model of individual effort is made even less reasonable. A t a glance, the obstacle to research biobanking seems to be that the ‘natural resource’ in question, is located in the human body. In fact this obstacle was mapped so as to emerge as an advantage. By utilizing ‘the principle of non-commodification of the human body and its parts’, bioethicists as well as policymakers have extrapolated a precept from the ethics of transplantation medicine to the ethics of research biobanking. Originally

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articulated to protect vulnerable individuals and groups (patients, prisoners, soldiers) from having their bodies turned into commodities, the precept itself nonetheless has been made the object of occasional controversies, especially connected to the heated debates on remuneration of blood donors (Andrews and Nelkin 2001), and in recent years, its failure to provide sanctions to an increasingly globalized market in human organs and tissue (Mander and Goldsmith 1996). Thus, when the members of the Norwegian Biobank Committee noted that ‘[i]t has also become more evident that collections of human biological material have great value, scientifically as well as economically, in connection with medical examination, treatment, research, and commerce’ (NOU 2001, 14), they could do this knowing that this precept, together with the aforementioned conceptual distinction, would protect donors from sharing the same interests that these policies would facilitate for others. As a first approach, we think that these ethical challenges would have been better addressed, if policies are sought to facilitate for practices of coproduction and deliberative democratic processes that would encompass a broader range of stake holders (Strand 2002), rather than symbolically representing them as issues of human dignity. Dating back to Antiquity, the precept of ‘confidentiality’, construed as a personal and professional relationship between physician and patient, is still thought to be a centrepiece of medical ethics. In its seventh paragraph the H ippocratic O ath reads: ‘W hat I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about’ (H ippocrates). T he precept addresses the challenges of building whilst maintaining a personal and professional relationship of trust. In contrast to the almost vernacular language employed by the H ippocratic O ath, the D eclaration of Helsinki is cast in the universal language of human rights: ‘The right of research subjects to safeguard their integrity must always be respected. Every precaution should be taken to respect the privacy of the subject, the confidentiality of the patient’s information and to minimize the impact of the study on the subject’s physical and mental integrity and on the personality of the subject’ (WMA 2004, B. 21). T he relationship, here, is professional, not personal. T he difference is that between the man of art (techne) and the man of science (theoria). In research biobanking, however, essential features of this relationship are neither personal, nor professional. T hey are rather technical, procedural and organizational. T he concept of confidentiality, understood as an unbreakable and sacred relationship existing between a treating physician and her trusting patient, is obsolete in this newfound context. F or instance, in genome-wide association studies conducted on population biobanks, most donors will never meet the team of epidemiologists, statisticians, computer scientists, data security officers and lab technicians working on the assaying, handling, processing, accessing and analyzing the vast amounts of digitalized datasets. Hence, the construction of biobanks – conceived of as bioinfrastructures rather than localized repositories and traditional health registries

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– entails that trust and mistrust now are being produced in a triangle between donor, society and bio-infrastructure. W hen represented as an issue of protecting the physical integrity of donors, it is surprising how research biobanking should inspire to ethical reflection at all. T he miniscule intervention needed to collect a biological sample from which genetic information can be sequenced and digitally stored, hardly constitutes a risk for anyone’s ‘��������������������������������������������������������������� physical and mental integrity���������������������������������� ’ (WMA 2000), except perhaps from severe cases of decidophobia, or depending on the method of harvesting, even aichmophobia (needle anxiety) and haematophobia. H ence, in the absence of the tangible physical and mental risks usually associated with human experimentation, a lot of the ethical babble on research biobanking has gravitated around issues on how much information should be given to donors, and how specific it needs to be for the consent to be ethically justified, or at least legally valid (see Hansson et al. 2006). T hough the precept of ‘informed consent’ provides some protection against bioprospecting of unknowing citizens, we are far from the atrocities it was devised to counter. ‘Informed consent’ was developed as a response to clinical experiments being conducted on unknowing, or even unwilling patients. D epending on research design, donors are often required to consent between different degrees of anonymization when signing the consent contract. H owever, there serious doubts can be raised over the extent to which donors actually read, less understand, the information folders distributed to them (H oeyer et al. 2005). In huge biobank projects, the sheer number of potential research participants often renders standardized letters the interface of communication between biobank and donor. T hese letters balance their wording between that of informing and that of recruiting. ‘T he right to withdraw’ addresses the ethical issue of self-determination in experimentation involving human subjects. Interestingly, in research biobanking this right has been reified and displaced by a right extrapolated from property law, namely the ‘dispositional right’. The globalization of biobank infrastructures renders the dispositional rights held by donors obsolete, as the biological sample and the information attached to it has been fragmented and dispersed throughout the infrastructure. T he historical ground for the dissemination and status of informed consent in medical research ethics was laid down in the decades following the S econd W orld War and the growing public awareness that scientific progress carries with it stakes for citizens and society that are not scientific in nature, but which nevertheless need to be addressed. Some of these stakes had already become evident in the years following the S econd W orld W ar and the up-scaling of medical research, which inaugurated so-called ‘Big M edical S cience’. Being modelled on the M anhattan Project, ‘Big M edical S cience’ does not only involve a shift in scope and scale of scientific experimentation, diagnostics, and treatment, it also entails a mode of industrial planning that requires a regulatory framework as well as institutions to harmonize and facilitate the interactions between science, society, markets, citizens, industry and political decision-making. Although a broad array

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of research institutions experienced a rapid expansion in budgets and available funds during these pioneering years, the build-up of this mode of science is a resource consuming, demanding and discontinuous process. T he more recent upscaling of biology that commenced with the H uman Genome Project, so-called ‘Big Biology’ marks a continuation of this historical process. A n initial challenge of the early phases of this build-up was to recruit enough willing research subjects to the rapidly increasing amounts of experiments – some of which were both unbeneficial and dangerous for those enrolled. According to H enry Beecher, the expansion of available funds was ‘of transcending importance’ for the increase in unethical experimentation conducted on humans and maltreatment of unbeknownst patients. Not only did available funds surpass ‘the supply of responsible investigators’, it also created an incentive system for young investigators to bypass ethical standards. (Beecher 1966, 367–368) Beecher’s diagnosis of the challenges this situation posed to medicine, is interesting on several accounts, but mostly because he articulates the up-scaling of medical science as a conflict between scientific progress and ethics. ‘Ordinary patients will not knowingly risk their health or their life for the sake of “science”. Every experienced clinical investigator knows this’ (Beecher 1966). As long as progress and not ethics was the value non plus ultra of science, then the entire moral basis for medical activity would be at stake. T he sheer number of declarations, guidelines and conventions articulating this basis is considerable: T he European C ouncil’s C onvention on H uman R ights and Biomedicine, International guidelines for biomedical research involving human subjects (CIOMS), the Declaration of Helsinki and numerous other documents all state the axiological primacy of the human individual over that of science and society. F rom the beginning of the 1990s and onwards, however, these declarations and conventions increasingly came to be institutionalized as the moral basis of European biopolitics and R &D policies (European C ommission 2007). H ence, seemingly without asking whether these documents’ claims to universal validity in human experimentation indeed were identical to the universal validity of these claims, they have been extrapolated to almost any emerging science and technology terrain. The Ethical Map of Research Biobanking: Functions The renewed interest in biobanks only came after a series of technological upheavals had recast the scientific and economic value attached to repositories of human biological material and their concomitant databases – even to human biological material itself. Although a field still in the making, the strategic importance of these repositories and databases for genetic research, industrial development, prevention, diagnostics, economic growth, and future medical treatments, is thought to be considerable (NOU 2001). Linking an unfathomable amount of genetic and phenotypic data in huge information infrastructures, research biobanking may

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yield scientific results and open up for new technological possibilities that at present remain unknown. On a semantic level, a symptom of this transformation can be observed in that specimens of human biological material are increasingly being referred to as raw materials or natural resources (A nnas 1999; NOU 2001). The cause of this transformation, however, can be observed in the growing market of human body parts, as well as in current policies on patents, which facilitate ownership claims on biological products, biological processes and in some cases even living organisms (M ander and Goldsmith 1996). A ccess to the information infrastructure can be bought and sold. T he raw material for this industry is found in the lives (biographic health information) and bodies (DNA , cells, tissues) of citizens. T his new industry amounts to a commodification of the human body, and is made possible by an ethical mapping that portrays the practices as being consistent with the principle of the non-commodification of the human body and broad consent. T he effect is that the functionality of the map is severed from its ethical representation. What makes the biobanks so valuable in the genomic era? In part, the answer is that they allow so-called ‘brute force’ methodologies in which large numbers of genes or genetic activities can be correlated with large numbers of phenotypic features through multivariate analysis. In a sense, this represents an advancement of science that escapes the old trade-off or even dilemma in biomedicine, already understood by Bernard (1865): O n the one hand, epidemiological approaches may provide representativity through large numbers of real patients, but tend to be too crude to cast light upon causal mechanism. O n the other hand, physiology, biochemistry and molecular biology provide causal understanding, but at the cost of studying simple and idealized (sub)systems that often were little more than artefacts in the biomedical sense. The combination of biobanks and health registries apparently allows for the combination of molecular rigor with epidemiological comprehensiveness. T his is how they may create value: they may give rigorous, representative medical knowledge of the population. Furthermore, the comprehensiveness also means that unique biological features will be found: the needle in the haystack, be it a variant form of a gene, enzyme or cell tissue, does no longer represent a near-impossible task as it can be found by automated routine techniques. In other words, human biological material can be bioprospected in a comprehensive manner. T wo conditions must be met, though, for these values to be created. F irst, the research needs access to extensive, well-characterized and high quality collections of human biological material and health information: S ize matters. S econd, the research is both capital-intensive in the sense that the necessary technical rigor and excellence is (also) a matter of investment; but it is also attractive to investors because of the expectations of new powerful medical technologies. A ccordingly, there is a focus on international collaboration to facilitate exchange and combination of data and material through the construction of the adequate infrastructures. In our view, the biobanks as well as the attempts at harmonization of their regulation across borders may both be seen as parts of the venture of providing such infrastructure.

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In other words, what is needed is a large-scale availability of human biological material at low cost, gained from a trusting and willing public who does not put a high price on their body samples. The ethical map of (non-existent) patient risk and a donating, non-commodifying and altruistic act of providing samples is clearly functional in this sense: with the ethics in place, the citizen may trust in the research and should give his material freely for the benefit of all. Hence, mapping these issues in terms of ‘the principle of non-commodification of the human body and its parts’ means that an economic line of demarcation can be drawn, between human biological materials as such and human biological material that has become a product, process or part of a product. Providing an ethical representation of the sanctity of the human body, the precept’s function, in biobank policies, carries with itself some paradoxical implications: While these policies recognize and actively facilitate the economic exploitation of human biological material, they can only do so if the person from whom the material is harvested is exempt from having legitimate claims to property rights over his or her biological material, thus sneaking a commodification of the human body through the back door, so to speak. Even though the donor’s contribution is an essential part of the process of commodification, the line of demarcation still applies, which seems intuitively unfair. Indeed, the function of the ethical map is facilitating even in a legal sense: Biobanking entails a kind of working and trade upon body parts that is not legally possible without a specific legal grounding. Hence, regulation must at least legalize the acts of providing biological samples from citizens (‘donors’) and storing, manipulating, analyzing, moving, processing and exploiting such samples. It is in this context that informed consent can play a double function: O n the one hand by mapping the transaction of biological material as a kind of contractually defined gift from the individual to the particular research institution, on the other hand by protecting the perceived interests of donors, dictated to them, by the very definitions of these precepts. Furthermore, we may recall how the Norwegian debates sought a ‘balancing’ between the protection of the individual and the facilitation of scientific progress. Our analysis of the functionality of the particular ethical map of research biobanking dominating in regulation, however, shows that its main function is to the regulate the interface between donor and biobank in a way that facilitates mass-transactions of human biological material with potential economic value. ‘T he committee was appointed due to the increased interests in medical applications of human biological material. T he interest is a result of recent developments within medicine in general, and within bio/gene-technology in particular. T hese developments have made visible the value and potential that human biological material may have in connection to medical examination, treatment, research and development of industry’ (NOU 2001, 11). In this sense,  S ee ‘It has also become more evident that collections of human biological material have great value, scientifically as well as economically, in connection with medical examination, treatment, research, and commerce’ (NOU 2001, 14).

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informed consent was not utilized to protect donors from callous scientists, but from greedy biobankers. The Norwegian grey literature on biobanks is interesting on these accounts. The high level of conflict persisting throughout the political process has the unintended advantage of revealing aspects that otherwise would have been hidden in the usual monotony of this literary genre. A t the same time, the institutional level in which these conflicts were fought provides an attack vector to these issues that may not necessarily pertain to the cultural, historical and geo-political contexts in other countries. T he Icelandic debate, for instance, involved the whole community in ways that no one, except for a few bioethicists, would even consider addressing solely in terms of medical research ethics. H ence, when M erz et al. reproach Icelandic policies on the grounds that ‘[a]mong those who have studied the GGPR project, no scholar of research ethics has argued in print against informed consent, and it is difficult to see how such an argument could be made’ (Mertz et al. 2004, 1207), they incidentally deliver the best argument against informed consent themselves. H aving no choice but to settle for less convincing arguments, we nonetheless have tried to articulate how, and even more importantly why such an argument should be made. A n expert group reporting to the European C ommission wrote the following on the function of ethics: [T ]he ethical discourse has been introduced in Europe as a warrant for, and a putative regulatory control over, scientific and technological power – and as a means to establish a closer link between science and society. H owever, ethics has played other political roles in a much less explicit way, as an instrument which effectively de-politicises some highly sensitive issues involving science and technology. T hus ethics has become a self-legitimating way to serve the same functions as politics and law, but with neither the democratic deliberative mechanisms nor the warrants required by legal systems to protect citizens against state power. Ethics has been used at times by EU institutions to neutralise political issues, to introduce norms outside the traditional process of law-making, to evoke society without involving it, to pay lip service to democratic concerns while only expert processes were taking place, to control citizens’ behaviour and even to allow direct intervention into their bodies, and to exempt the market from ethical criticism and debate. (European C ommission 2007, 47)

H ence, a main function of ethics, according to the expert group, has been to depoliticize controversial issues. W e believe this might be a latent function of ethics in biobanking as well. However, as will be evident from the above  ����������������������������������������������������� T he Genealogy, Genotype, Phenotype, R esource project.

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exposition, the function of the particular ethical mapping of research biobanking is more extensive and more ambitious than ‘just’ preventing public controversy: it has had a facilitating function in a more direct sense. T o understand that, one will have to recall the point that representational force is not the essential property in order for a map to be functional; at times, on the contrary. T he function of a map is also the tacit interests – or way of seeing – it conveys to its user. F or instance, using existing collections of human biological material as a model for their understanding of research biobanks, most policies have adopted a definition of biobank as a spatially confined repository. In contrast research biobanking comes with the possibility of hardwiring such biorepositories and concomitant databases into vast information infrastructures with endless linking possibilities. W ith a focus on the practices rather than the particular vision of a biobank, it is imaginable that ethical issues relating to information would have created more controversy. By approaching biobanks in terms of infrastructures, and not spatially confined repositories and registries, we may get a glimpse of some implications of the underlying complexities pertaining to research biobanking: 1. The globalization of biobank infrastructures renders the dispositional rights held by donors obsolete, as the biological sample and the information attached to it has been fragmented and dispersed throughout the infrastructure. 2. The concept of confidentiality, understood as an unbreakable institution existing between treating physician and their trusting patient, are obsolete in this newfound context. R ather, trust and mistrust are now being produced in a triangle between donor, society and bio-infrastructure. H ow will these globalized infrastructures affect the trust in healthcare and medical technology? 3. Any models of benefit sharing must take into account that the infrastructure itself adds value, which makes the model of individual effort even less reasonable. 4. T hese infrastructures and results being generated from them may create new group identities that are hidden for the individuals defined as belonging to the group. R eturning to H enry Beecher’s early doubts and concerns on the unambiguous benefits of scientific progress to mankind, we may ask whether the current ethical justification, construction and proliferation of these infrastructures, in the long run, will pose a similar threat to the moral basis of medical science and care. It may be best to remain agnostic in that regard: not knowing, and not wishing to take for granted, that scientific progress in the area of research biobanking uniformly and unconditionally is a good thing for public health, human society and the world. T he experience is that already that seemingly innocent agnosticism is perceived as a controversial position among many scientists and ethicists. T his is believed to be a source of bias in the ethics discourse.

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The amount of available funds for ELSI research going into this field is considerable. Beginning the authors of this chapter, who admit that their attention was initially directed into the field by the specific availability of public research funding. In their view, too much of the ELSI research in this field suffers from a tacit acceptance of current political and academic consensus on what the ethical issues are, and a tacit acceptance of being useful to one’s employers, by their criteria. H ence, in this respect, the ELSI research community is inundated with questions on what they ought to do, when perhaps the real question to be asked is: What are the ethical issues of research biobanking? Conclusion: From the Deserts of the West It has been stated that the prevailing ethical map is to be seen as functional – for a given purpose – and not as ideology, in the sense of intentionally producing false consciousness. The purpose, however, of medico-scientific progress, needs its own justification, although in large parts of contemporary society it may feel as if this justification is too evident to need explication. It is as if it is unthinkable that the expected and unexpected collateral effects of new medical knowledge, technology and practice can ever outweigh the benefits. From such a perspective, ‘ethics’ is invoked to produce techniques, practices and tools to ensure a balancing of economic, scientific and ethical interests; the latter defined as the protection of the individual as conceived of in classical medical ethics. By ‘balance’ it is implied that something, or someone, may stand above ethics and judge upon its right place. F rom the perspective of classical moral philosophy, however, it is hard to accept that ethics is used instrumentally for other purposes. It is seen as excessive functionalism and pragmatism. The alternative, however, is to expose the uncertainty of the scientific ventures undertaken in the name of biobanking, and to admit that there is no certain way to achieving the good, nor any obvious right answer as to what should be done. T he issues revealed in this chapter may, and should, be described, analyzed and acted upon – however, the prescribed action is likely to be incompatible with the current primacy given to science, technology and innovation policies in industrialized countries. In that sense, one might paraphrase S tephen T oulmin and say that the liberal ideals of the Renaissance are lost to those of the scientific counterrevolution. A gain, in optimistic moments, the ethicist might hope for a politically less severe regime, both in terms of public and political debate, regulation, research funding and academic ethics discourses, in which the functionalities of the currently prevailing ethical maps are rendered suitable. H owever, when opening the chapter with Borges, the intention was to portray the unhappy location of the D eserts of the W est, and play the role of the A nimals and Beggars who did not accept, or have access to, the prevailing political regime.

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S till, the aim is to encourage a change in medical research ethics by whoever accepts the position of the periphery, or of critical distance, as it has been called. To conclude, look to the vision of philosophy of Deleuze and Guattari, not that of analysis on given terms, but that of producing ideas for new modes of action: People are always thinking of a majority future (when I’m grown up, when I’m in power . . .). W hen really the problem is one of a becoming-minority: not to act like, not to do like or imitate the infant, fool, woman, animal, stutterer, or foreigner, but to become all that, in order to invent new forces or new weapons. (D eleuze and Guattari 1977)

Acknowledgments We are immensely grateful to Jan Helge Solbakk and the entire project group of the project Mapping the language of research biobanks and health registries – From traditional biobanking to research biobanking for the numerous discussions over previous drafts. T he R esearch C ouncil of N orway and the EU F P6-funded project GeneBanC are acknowledged for their financial support. References A lthingi (2000) Act on Biobanks, Iceland N o 110/2000. Andrews, A. and Nelkin, D. (2001) Body Bazaar (New York: Crown Publishers). Annas, G. (1999) ‘Waste and longing: The legal status of placental-blood banking’, New England Journal of Medicine 340:19, 1521–1524. Beecher, H . (1966) ‘Ethics and clinical research’, New England Journal of Medicine 274:24, 1354–1360. Borges, J. (1998) Collected Fictions (New York: Penguin Books). Brekke, O. and Sirnes, T. (2006) ‘Population biobanks: The ethical gravity of informed consent’, BioSocieties 1, 385–398. D eleuze, G. and Parnet, C . (1977) Dialogues (Paris: F lammarion), p. 11; cited and translated by Jardine, A . (1984) ‘W oman in limbo: D eleuze and his br(others)’, SubStance 13, 46–60. C ouncil for International O rganizations of M edical S ciences (CIOMS ) (2002) International Guidelines of Biomedical Research Involving Human Subjects. C ouncil of Europe (1997) ETS N o. 164, Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (O viedo). European C ommission (2007) Taking European Knowledge Society Seriously, Report of the Expert Group on Science and Governance to the Science, Economy and Society Directorate, Directorate-General For Research, EUR 22700, Luxembourg: Office for Official Publication of the European Communities.

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H ansson, M . D illner, J., Bartram, C .R ., C arlson, J.A . and H elgesson, G. (2006) ‘Should donors be allowed to give broad consent to future biobank research?’, The Lancet Oncology 7:3, 266–269. H ippocrates The Hippocratic Oath (last accessed on 15 January 2008). H oeyer, K., O lofsson, B.O ., M jorndal, T . and Lynoe, N . (2005) ‘T he ethics of research using biobanks’, Arch Intern Med. 165, 97–100. Karlsen, J.R., Faria, P.L. and Solbakk, J.H. (2006) ‘To know the value of everything: A critical commentary to B. Björkman and S.O. Hansson’s “Bodily rights and property rights”’, Journal of Medical Ethics 32, 215–219. Locke, J. (1884) Two Treatises on Civil Government (London: George R outledge and S ons). M ander, J. and Goldsmith, E. (eds) (1996) The Case Against the Global Economy (San Francisco: Sierra Club Books). Merz, J.F., McGee, G.E. and Sankar, P. (2004) ‘“Iceland Inc.”?: On the ethics of commercial population genomics’, Social Science & Medicine 58:6, 1201– 1209. N orges offentlige utredninger (NOU ) (2001) N orway NOU 2001:19 Biobanker. N orges offentlige utredninger (NOU ) (2005) N orway NOU 2005:1 God forskning – bedre helse. O nora, O . (2001) ‘Informed consent and genetic information’, Studies in History and Philosophy of Science 32:4, 689–704. Riksdagen (2002) The Swedish Act on Biobanks, S weden SF 2002:297. Skolbekken, J.-A., Ursin, L.Ø., Solberg, B., Christensen, E. and Ytterhus, B. (2005) ‘Not ������������������������������������������������������������������� worth the paper it’s written on? Informed consent and biobank research in a N orwegian context’, Critical Public Health 15(4): 335–347. Sosialkomiteen (2002) Ot. prp. nr. 56 (2001–2002) Om lov om biobanker (biobankloven). S tortinge (2003) Act Relating to Biobanks, N orway N o. 12 21.2 2003. S trand, R . (2002) ‘C omplexity, ideology and governance’, Emergence 4:1/2: 164– 183. Vidler, A. (2001) ‘Diagrams of Utopia’ in Zegher, C. and Wigley, M. (eds) The Activist Drawing: Retracing Situationist Architectures from Constant’s New Babylon to Beyond (New York and Cambridge, Massachusetts: The Drawing C enter), 83–91. W orld M edical A ssociation (WMA ) (2000) Declaration of Helsinki.

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C hapter 11

F uzzy Law Encountering Life, D eath, and M orality: A R eport on N ine C linical Ethics C ommittees’ Legal C onsiderations R eidar Pedersen and R eidun F ørde

W ithholding or withdrawing life-prolonging treatment represents important moral and legal challenges in modern healthcare services (Emanuel 1988; van der H elde et al. 2003). M any countries have changed their legal regulations over the last decades to protect patients’ rights or to clarify healthcare providers’ responsibilities. In N orway, healthcare has become regulated by a number of new laws during the last decade. F rom being autonomous professionals regulated mainly by professional and ethical codes, doctors today find their clinical practice increasingly regulated by law. However, we have sparse knowledge about how the numerous new health laws have influenced the quality of the healthcare services. A nother important trend over the last decades is the development of clinical ethics consultation services in hospitals in many countries (Borovecki, Oreskovic, and ten H ave 2005; M cGee et al. 2001; M cGee et al. 2002; M cN eill 2001; S imon 2001; S lowther et al. 2004); and abatement of life-prolonging treatment is one of the most important issues facing these services (H urst et al. 2005; M cGee, C aplan, S panogle, and A sch 2001; M cGee, S panogle, C aplan, Penny, and A sch 2002; Pedersen and F ørde 2005). O ne important reason to establish ethics consultation services (for example, ethics consultants, teams, or committees) is to avoid unnecessary litigations (President’s C ommission for the S tudy of Ethical Problems in M edicine and Biomedical and Behavioral R esearch 1983). Ethics consultations often include legal issues and have ‘become a channel through which law enters the clinical setting’ (S pielman 1993). T here is a consensus that any person providing clinical ethics consultations should have at least basic knowledge of health law (such as end-of-life, care issues, surrogate decision making, informed consent, and confidentiality) (Aulisio, Arnold, and Youngner 2000). Some commentators have emphasized that although the ethics consultation services certainly should pay attention to ‘due process’, rules of procedures, and legal constraints, such services should avoid becoming ‘mini-courts’ or a substitute for courts (M cLean 2007). H owever, empirical research on the role of health law in clinical ethics consultations is sparse, for example, how existing legal regulations are interpreted and what role do legal regulations play in clinical ethics consultations? A qualitative study on the role of health law in clinical practice concluded that legislation alone

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was insufficient to handle ethical conflicts (Roth and Harrison 1994). Other research exploring the impact of legal factors on physicians’ treatment decisions for dying patients, indicate that better knowledge of medical law correlates to lower levels of legal and medical defensiveness (for example, providing futile treatment due to perceived legal constraints) (M cC rary et al. 1992; M cC rary and S wanson 1999). H owever, in the presence of a very restrictive legal regulation – for example, setting up very strict and largely unattainable criteria to be fulfilled before life-prolonging treatment may be lawfully withheld – exact knowledge of medical law correlates with higher levels of legal defensiveness (M cC rary et al. 2006). In this article, we explore how legal regulations are brought into play when nine N orwegian clinical ethics committees deliberate a paper case about withholding life-prolonging treatment, that is, whether to opt for a ‘do not attempt resuscitation (DNAR ) code’. H eart and lung resuscitation is a type of life-prolonging treatment frequently considered to be withheld (M cGee, C aplan, S panogle, and A sch 2001; M cGee, S panogle, C aplan, Penny, and A sch 2002; M cN eill 2001; Pedersen and F ørde 2005). T his chapter is part of a national research project initiated in 2004 to assess the quality of the Norwegian hospital ethics committees’ work and to facilitate exchange of experiences. O ther results from this project are published elsewhere (Akre, Pedersen, and Førde 2008; Førde, Pedersen, and Akre 2008; Pedersen, Akre, and Førde 2008; Pedersen and Førde 2005). Relevant Regulations in Norway A ccording to the N orwegian H ealth Personnel A ct ‘H ealth personnel shall conduct their work in accordance with the requirements to professionally justifiable and diligent care’ (2002). T he N orwegian Patient’s R ights A ct assert that ‘H ealth care may only be provided with the patient’s consent, unless legal authority exists or there are other valid legal grounds for providing health care without consent’ (2003). H owever, in the case of emergency healthcare, for example, resuscitative attempts, healthcare personnel have a duty to provide healthcare, regardless of the patient’s preferences or competence: § 7 Emergency health care H ealth personnel shall immediately provide the health care they are capable of when it must be assumed that the health care is of vital importance. Pursuant to the limitations laid down by the Patients R ights A ct section 4-9, necessary health care shall be given, even if the patient is incapable of granting his consent thereto, and even if the patients objects to the treatment. (2002)

T he Patients R ights A ct section 4–9 entitles dying patients to object to lifeprolonging treatment (emergency healthcare or any other life-prolonging

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healthcare), however only if there is no chance of a cure or improvement, and the only prospect is a kind of life-prolonging that in reality prolongs an ongoing process of dying (T he D irectorate for H ealth and S ocial A ffairs 2004). In N orway advanced directives are not legally binding, but when a patient is deemed incompetent, healthcare personnel should respect previously expressed patient’s preferences if pertinent to the situation. H owever, the patient or relatives may not demand professionally unjustifiable or futile treatment (Pedersen, Bahus, and Kvisle 2007; Pedersen, H ofmann, and M angset 2007). In 2002 the N orwegian Board of H ealth issued a legal directive addressing do not attempt resuscitation orders emphasizing the above mentioned legal regulation (N orwegian Board of H ealth 2002). H owever, this directive does not address resuscitation considered futile by the clinicians and how to make a DNAR decision in such situations. R ather, the directive explicates when the patient has a right to opt for a DNAR code in situations where the clinicians would make a resuscitation attempt. U nfortunately, the fact that the legal directive does not apply to situations in which resuscitation is considered futile was not communicated clearly. T hus the directive has been misunderstood – for example, that the patient and relative always have to consent before a DNAR code can be made – and heavily criticized (Markestad 2003; Pedersen 2004). A ccording to the legal directive all somatic hospitals in N orway should have guidelines addressing DNAR codes, and most hospitals have such policies (F ørde et al. 2007; S ommer et al. 2007). A lthough the local guidelines are motivated heavily by the need to avoid excessive or meaningless treatment, communication and decision-making in a situation where resuscitation is considered futile or meaningless this is very rarely explicitly addressed in these guidelines (S ommer, Pedersen, H oie, and N ortvedt 2007). Case Study Method A n invitation was sent by mail to all established C linical Ethics C ommittees (CEC) (24) in Norway in May 2004. We asked the committees if we could observe the committee while deliberating a paper case (see Box 11.1) and then perform a semi-structured interview summarizing the deliberation and the committees’ experiences. T he whole session was recorded digitally and transcribed verbatim. A detailed description of the methods used (for example, interview guide and the qualitative analysis) and the observations not presented in this chapter, are given in another publication (Pedersen, Akre, and Førde 2008). In eight out of nine of the deliberations, the committees introduced legal issues in their deliberations. Before the study, we did not expect that legal considerations would play a major role in the deliberations. T hus, questions about law were not

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Box 11.1  Paper case*

T he patient is a 55-year-old man with lung cancer who initially responded to chemotherapy but has now relapsed. H e is now nearing the end of a trial of a new chemotherapy regime (part of a clinical trial) with no sign of remission of his cancer. In discussion with the medical team the patient expresses a belief that he may respond to treatment although his consultant has told him that effective treatment is not available, that further chemotherapy will have no effect, and that he has only a few weeks left to live. As a result of his cancer it is likely that vital organs, such as kidneys and heart, will fail. T he consensus of opinion from the medical team is that if the patient has a cardiac arrest while on the ward, resuscitation should not be attempted. This is because it would probably be futile and it could inflict damage because of the patient’s fragile ribs (he has secondary deposits of cancer in his ribs) and because he is likely to die shortly from his cancer. A fter discussion with his consultant the patient says he wants everything done for him, including C PR (cardio-pulmonary resuscitation). T he patient’s wife supports him in this view. T he healthcare team is unsure about what should be done and approaches the hospital trust’s clinical ethics committee. * This is an adapted version of a case published at the UK Clinical Ethics Network’s webpage in 2004 .

included in the interview guide. H owever, in four of the committee interviews time permitted that we introduced a question about the role of law in this kind of deliberation. The participants Nine committees representing three out of five health regions were included in the study. A ll the committees were interdisciplinary, with physicians and nurses making up well over half of the members. Two of the committees had a jurist member, but only one of them was present during the case deliberation. F urther details on the committees’ composition are given in another publication (Pedersen, Akre, and Førde 2008). O f the nine committees that participated, the youngest was established one year before the interview, while the oldest had ten years of experience. O n average the committees had more experience than the N orwegian C EC in general. S even out of nine of the committees had experience with case consultations involving a particular patient, and all considered this to be part of their mandate. Eight out of the nine committees functioned in hospitals which had implemented a local DNAR guideline ������������������������������������������������������������������� (F ørde, Berner, Pedersen, and F ørde 2007; Pedersen and F ørde 2005; S ommer, Pedersen, H oie, and N ortvedt 2007). S����������������������������������� ix out of the nine committees had

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been involved in the development of such guidelines – four as a consultative body and two had been in charge of developing such a guideline. Results In most of the committees some members asked what kind of actions can be justified within the law, for example, is it lawful to make a DNAR decision unilaterally by the healthcare team if resuscitation is considered futile? In some of the committees legal questions and the above mentioned legal directive resulted in lively debate and sometimes considerable frustration. O nly one committee did not include any legal considerations (the only committee with a jurist present). H owever, legal considerations did not play a prominent role in any of the deliberations, and legal questions were sometimes not answered or answered erroneously (see below). O nly three committees mentioned that they would have considered seeking legal advice. In the following we first present how the committees discussed some of the most pressing ethico-legal questions in the case, and then we present how the committee members perceived the role of health law in this kind of deliberation. Legal Duty to Provide Futile Treatment if the Patient Wants it? This question was discussed in five of the nine committees from various angles. F or example, some committee members wanted to clear up whether the clinicians could refuse to start futile treatment, whether the patient was entitled to treatment regarded as futile by the clinicians, or whether the physician had the authority to decide when the patient disagreed. Other members asked whether a DNAR code may be made lawfully only if the patient or relative consents. A s mentioned above, these questions were sometimes not answered. In a few committees, it was made clear that clinicians cannot be required to perform futile treatment. H owever, in four committees, it was asserted that the patient’s or relative’s consent is always legally required before any treatment – regardless of its effect – can be withdrawn or withheld, or before a DNAR code can be written. This kind of seemingly ‘unlimited’ patient autonomy seemed to emerge at least partly due to the legal directive issued by the N orwegian Board of H ealth in 2002, as the following excerpt indicates: X – Is it legal to write DNAR when the patient does not want this code? […] Y – I have tried to read the legal directive, to see if there is an answer there .. It says a lot about the patient’s right to say no, but I can’t find very much help when it comes to the clinicians’ rights to abstain from resuscitating patients. X – I can’t stop thinking about whether we can write DNAR if the patient does not want the code. Reading the legal directive I think we can not. Legally, a consent is required, right?

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Ethics, Law and Society: Volume IV [T he committee agrees that consent is required] Z – But who pays the price if DNAR is not written; maybe it is the nurse on call the night it happens…

S ometimes relevant legal concepts were applied wrongfully – however sometimes with reservations due to lack of legal knowledge: … but what may be regulated by law is exactly emergency health care. Because if he is dying, then we have to, then we have a duty to provide emergency health care. Is he defined as dying or not? For there is something about active and passive euthanasia … now I am on thin ice because I never remember these things. (C omment: A dying patient is entitled to refuse emergency healthcare of vital importance (see relevant regulations above), thus in such situations the duty to provide emergency healthcare may be set aside by the patient’s preferences.)

Legal Duty to Inform the Patient about a DNAR Decision in Case of Futility? F our of the committees mentioned that it may not be appropriate to discuss treatment options regarded as futile with the patient, and two of the committees raised the question whether one is legally obliged to inform the patient or the relative about a DNAR decision if resuscitation is considered definitely futile. The N orwegian law does not regulate this question (that is, there is no duty to inform about futile treatment), but neither of the committees had a clear cut answer to this question, but found it deeply problematic if there was a legal duty to inform and discuss any treatment considered definitely futile with all patients. Again, the legal directive issued by the N orwegian Board of H ealth in 2002 at least sometimes seemed to result in perceived legal constraints or interpretations that may result in medical defensiveness: …are we obliged to discuss treatment, which we are convinced will not work with all patients? A ccording to the legal directive from the Board of H ealth, which has caused enormous amounts of frustration in the clinics, where physicians actually believe that this is what we must do since the Board of H ealth has said so.

Some Key Concepts: ‘Futility’ and ‘Dying’ O ften the committees’ deliberations touched upon the concept of ‘futility’, and the foregoing sections indicate that the concept of futility is relevant to the case – medically, ethically, and legally. (If resuscitation is definitively futile, the clinicians can not be forced to perform this treatment; if it was not, the patient preferences ought to be given a more prominent place in the decision making process). H owever, only a few of the committees attempted to clarify or mentioned

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the need to clarify whether resuscitation in the described case could or should be regarded as futile. In one committee one member mentioned that ‘T here is a disparate evaluation of the utility, and…’, but never got the possibility to complete the sentence or discuss the complex issue of futility. S ome committees implicitly approached the question of futility through a discussion about possible causes of death. O ne committee reasoned that if the cause of heart arrest was cardiac, and the patient’s condition was still not very poor and the patient’s vital organs had not yet failed, cardio-pulmonary resuscitation could certainly be indicated. In other committees it was assumed that the patient’s general condition was very poor, that cardiac arrest would be caused by lung failure due to the cancer. C onsequently, the patient would either die or become an intensive care patient who would be impossible to wean off the respirator. A nother important concept in the N orwegian legal directive on DNAR orders is ‘dying’ – primarily to decide whether the patient is entitled to refuse resuscitation attempts. H owever, in the present case where the patient wants treatment regarded as probably futile and harmful by the clinicians, the patient’s legal rights do not depend upon whether the patient can be defined as ‘dying’ or not (rather the key question is whether the treatment is professionally justifiable). N evertheless, two committees did discuss whether the patients could be considered ‘dying’ or ‘terminal’. In both committees, the members were reluctant to define the patient as dying, due to the inherent uncertainty in estimates of life expectancy exceeding hours or a few days, and since the patient’s vital organs had not yet failed. O ne of these committees also emphasized the patient’s relatively young age: X – …I suppose there are some days remaining before he is dying. Y – H e is not dying. X – N o, he is not terminal. Y – H e has not had any effect of the treatment, but he is not dying when he is 55 years old. [T he committee agrees]

When the Law does not Make Clinical Sense In the four deliberations where it was asserted that the law requires the patient’s or relative’s consent before a DNAR code can be made, none concluded that resuscitation should be attempted. R ather no substantial consensus emerged (in three committees), or the committee recommended only defibrillation in the case of continued disagreement between the clinicians and the patient. T wo of the four last mentioned committees discussed whether the clinicians – in the absence of a DNAR code – still may forgo resuscitation attempts in the case of cardiac arrest. In both committees some committee members regarded this as the best or most likely solution given the perceived legal constraints. Thus the absence of a DNAR code to respect the patient preferences did not necessarily

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imply a duty to attempt resuscitation. This kind of strategy did seem to result at least partly because the committee regarded that a written DNAR code was only lawful if the patient consented: …do not write DNAR without discussing it with the patient and the relatives, right? So they have done it legally right. But … one thing is to say that the patient does not want a DNAR code to be written; that we will respect. But this does not imply that we should grovel for any patient who says that we should attempt resuscitation … The patient has his right to say I don’t want DNAR written in my file. But the patient do not have the same right to say – you have to start if may heart stops.

In one of the committees where it was asserted that the law requires the patient’s or relative’s consent before a DNAR code can be made, it was added that the legal directive concerning DNAR was not accepted by the physicians and that these legal regulations did not influence clinical decision making: T he legal directive is not accepted by physicians in N orwegian hospitals. It is, to be sure, regarded as an opinion. But, for example in our hospital we have not accepted this. A nd clinical practice in our hospital has not changed after the directive came.

H owever, in one of these two committees a concern was expressed that patients were no longer allowed to die in the absence of a DNAR code: I think this is a sort development in the society where one need a DNAR code to be allowed to die … I worked at another ward eight years ago … then it was not necessary to write DNAR on all cancer patients … usually these patients were allowed to die without having to write a DNAR code in advance. I don’t think it is like that any longer.

In three of the committees the possibility of a ‘yellow code’ or ‘half-hearted’ attempt were mentioned, but this kind of strategy was never explored or discussed any further. Use of the legal directive and local DNAR guidelines? F ive of the nine committees did mention the legal directive issued by the N orwegian Board of H ealth in 2002 in their deliberations. H owever, as indicated above, quite a few of the committee members were critical of this directive. O nly one committee explicitly referred to local DNAR guidelines in their deliberation. T hese guidelines had been developed partly in opposition to the national legal directive, for example, emphasizing the physician’s decision making authority to a greater degree as the legal directive.

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The role of law in this kind of deliberation? A s already mentioned, legal considerations did appear in most of the committee deliberations, but legal considerations did not play a prominent role in any of the deliberations. To further explore this observed tendency, we explicitly asked four of the committees what kind of role health law generally played in this kind of deliberation. T he responses indicate that many of the committee members regard that health law does and should play a subordinate role in clinical decision making, for example, compared with professional and moral considerations, for example, as expressed in the following excerpt: Personally, I feel rather detached when it comes to legal regulations. It is not that the law is irrelevant, but in my relations with jurists, e.g. in legal cases involving compensation, then I experience very clearly that our perspective on human conflicts and suffering is very different, and I doubt that the legal perspective is very important in an existential human-to-human-problem – such as we encounter. And very often … one has to use one’s head, one has to use one’s heart, one has to think together and then make a decision, and this one has to answer for – and then – for me what is written in a law section is of less relevance if we together have reached the conclusion that this is the way to go. C ertainly, the relevance of the law is not experienced as very big.

S till, in some committees, some of the members were concerned about legal defensiveness in clinical decision making, for example, in the form of loading information or decision making responsibility onto the patient and relatives: …I have registered a sort of reluctance among clinicians; that one loads responsibility onto the patient and relatives to make decisions that in opinion often are medical decisions, that one needs medical competence to make. … I experience … a lack willingness to assume responsibility …

Discussion O ur study is a qualitative study including nine committees deliberating a particular paper case within restricted time limits. T hus, generalizations to other contexts, e.g. to other committees and real case consultations, should be made very cautiously. N either the paper case nor the interview guide were developed specifically to study legal considerations, and health law did not play a prominent role in any of the nine committee deliberations. H owever, this qualitative study indicates that many committees at least sometimes do include legal considerations in their deliberations. F urthermore, this study indicates that some changes may be considered both within the N orwegian legal regulation concerning withholding and

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withdrawing life-prolonging treatment, and within the clinical ethics committees attempting to cope with this regulation. W hen it comes to the legal regulation, it should be made more explicit that whether to involve the patient or relative when treatment is regarded as futile, is by and large beyond the scope of the existing legal regulation in N orway (except regulations on second opinion and complaints) – and thus professional and moral reflection is highly recommended where the law stops. Furthermore, fuzzy concepts like ‘dying’ should either be avoided or an attempt made to define them more clearly. These findings and suggestions are corroborated by another study analyzing the content of local DNAR guidelines in N orwegian hospitals – which are largely influenced by the Norwegian legal regulations (Sommer, Pedersen, Hoie, and N ortvedt 2007). T his other study revealed the same challenges, for example, unclear or non-existing guidance concerning information and involvement of patients and relatives when resuscitation is considered futile and no attempt made to define the concept of ‘dying’, although the concept often had a prominent position (S ommer, Pedersen, H oie, and N ortvedt 2007). C onceptual and ethicolegal challenges related to the concept of ‘dying’ has also been emphasized in relation to other countries’ health laws (T he D anish C ouncil of Ethics 2006; van O orschot and S imon 2006). When it comes to the ethics committees, we think that the most important step may be to seek legal expertise when in doubt about the legal regulations and when the perceived legal constraints seem unreasonable. Legal considerations may not be the most important part in ethics committees’ deliberations, but health law is still an important aspect of clinical ethics – and should not be left unsettled or muddled. We have no reason to believe that the knowledge of health law is any worse within clinical ethics committees than outside. In this study we believe that most or all the committees had some knowledge about relevant legal regulation, but relevant details and interpretations were often not brought into the deliberation, and there was quite a lot of frustration when considering what were unreasonable regulations – and this was sometimes due to misinterpretations of fuzzy legal regulations. We do not think that committee members need to be legal experts. H owever, we regard that clinical ethics committees are important arenas to discuss the scope and implications of health law in clinical practice, and to identify unreasonable or unclear regulations, especially in countries with sparse legal usage (such as N orway). O nly one of the committees referred to local DNAR guidelines in the deliberation. A s mentioned above, the legal directive and many of the local DNAR guidelines do not give relevant guidance in the present case (where treatment is regarded as futile by the clinicians) (S ommer, Pedersen, H oie, and N ortvedt 2007). H owever, another study exploring the prevalence of any type of local ethical guidelines indicate that there is a general lack of overview in Norwegian hospitals (F ørde, Berner, Pedersen, and F ørde 2007). T hus, there seem to be a need both to improve the local guidelines and to develop more adequate implementation processes.

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T he legal directive issued in 2002 has been the only national guidelines dealing with DNAR -codes in N orway. O ur study indicates that fuzzy and perplexing legal regulations may have the potential to contribute to professional insecurity, practices colloquially known as ‘flying under radar’ (McCrary, Swanson, Coulehan, FaberLangendoen, Olick, and Belling 2006), truth dumping, legal defensiveness, and excessive treatment. H owever, in the observed deliberations, the perceived legal constraint tended to influence the procedures (for example, not writing DNAR) rather than the choice of treatment (for example, attempt resuscitation) when the legal constraints were perceived as unreasonable. H owever, as some committee members pointed out, verbal or non-documented consensus among the clinicians may not reach the nurse on call. F urthermore, such ‘secret’ decisions may deprive the patient or proxy of the possibility to a second opinion or to lodge a complaint. Earlier research indicates that experienced clinicians have a lower tendency to legal defensiveness (McCrary, Swanson, Perkins, and Winslade 1992; McCrary, Swanson, Coulehan, Faber-Langendoen, Olick, and Belling 2006). In the committees observed, experienced clinicians made up the majority of the members. Thus, it seems likely that perceived legal constraints may have a greater impact in other clinical contexts as some of the committee members indicated. O ne may also speculate whether unreasonable or fuzzy legal regulation may trigger distrust, conflict, and even unnecessary litigation. It seems likely that inappropriate practices may be triggered by fuzzy legal regulations giving the impression that consent is required to withhold futile treatment – for example, loading excessive responsibility or information on the patient or relatives, making a feint of an intent to do as the patient says through not making a written DNAR code while still planning not to attempt resuscitation, or avoiding shared decision making altogether because of uncertainty about what to do if the patient disagrees. This kind of fuzzy legal regulation may have the potential to trigger suspiciousness and distrust among clinicians towards law makers and health bureaucrats, or at least increased moral distress due to perceived legal constraints regarded as contrary to ethical and professional judgements. F urthermore, some of the solutions or practices recommended by the committees surely have the potential to trigger suspiciousness and distrust in the public, for example, if portrayed as hidden agendas or wilful deception. T his study indicates that there is a need for more empirical research scrutinizing the relations between health law, professional judgement, and ethics. A lthough health laws may seem reasonable and well-intended, we need to evaluate what happens when these regulations encounter the complexities of clinical reality and are applied by legally ‘illiterate’ clinicians or ethics consultants. Health law includes many concepts which have to be interpreted or defined to be applied coherently in the clinical decision making, for example, in Norwegian health law words like ‘professionally justifiable’, ‘emergency health care’ and ‘dying’ play a prominent role. N orwegian health law leaves quite a lot of definitional power and responsibility to the physician in charge, for example, to

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define what is professionally justifiable and to a large extent also to define when treatment should be regarded as futile. T he deliberations show that there may be various perspectives and interpretations concerning the utility or futility of resuscitation in this case. H owever, the committees did not pay much attention to discussions of ‘futility’. For example, is it ‘definitely’ futile or some kind of the ‘gray zone’; for example, evaluating benefits versus burdens (for example, broken ribs) or quality of life; is it the probability of reaching a certain outcome (for example, resuscitation) that point to futility, or is it the value of the likely outcome that is judged as futile (for example, alive but unconscious and dependent on a respirator) (British M edical A ssociation, the R esuscitation C ouncil (U K), and the R oyal C ollege of N ursing 2007; M ohindra 2007). W e regard that the paper case used in this study does not provide enough information to conclude that any kind of resuscitation attempt would be definitively futile. Conclusion A lthough health law is generally made to improve healthcare services and clinical decision making, this study indicates that the opposite may be the result when fuzzy legal regulation encounters clinical realities. In the type of case deliberated in this study, the existing legal regulations were not directly relevant, but this has not been clearly communicated. T he existing legal directive concerning DNAR regulates the patient’s right to refuse indicated or professionally justifiable treatment, while the case deliberated was about treatment regarded as futile or not indicated by the clinicians. H owever, the legal directive seems to have the potential to exaggerate the duty to inform the patient and to result in a belief that informed consent is always required to make a DNAR decision. The belief that informed consent is required to make a DNAR decision even when treatment is regarded as futile, may have the potential to push clinicians to perform futile treatment or to overcharge the patient with information about possible futile treatments. H owever, the deliberations indicate that clinical ethics committees’ deliberations do not necessarily succumb to legal regulations when these are perceived as very unreasonable by experienced clinicians (for example, provide resuscitation with no indication). R ather than changing the treatment decision radically, the procedures sometimes seemed to be adjusted to fuzzy legal regulation – for example, no written code without intending to attempt resuscitation. W e regard that fuzzy or very controversial legal regulations may be worse than no legal regulations, due to possible misunderstanding, conflicts and moral distress. However, the professional power or authority to define futility and the ‘gray zones’ requires humbleness towards the complexity and uncertainty involved in such evaluations. T hus, more explicit and thorough discussions of futility than have been demonstrated in these deliberations are needed.

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Clinical ethics consultation services ought to seek legal advice when in doubt about the legal regulations and when the perceived legal constraints seem unreasonable. In this way such services may help to reveal possible challenges in interpreting health law, to correct misinterpretations of the law, suggest where legal regulations create unintended and unwanted consequences, and clarify the need for careful and explicit moral and professional considerations – for example, in areas where no or sparse legal regulations exist. In this way clinical ethics committees and other consultation services may contribute to the interdisciplinary dialogue needed to evaluate health law. However, this does neither exempt the law makers from responsibility for developing reasonable laws nor the clinicians from knowing and discussing relevant legal regulation. W hen legal considerations lead to morally questionable results, one should carefully investigate whether it is the law or the interpretation of the law that are inadequate. O ur study indicates that there possible improvements on both sides. Acknowledgment We are grateful to Dr. Med. Victoria Akre who conducted the interviews together with the first author. This research is funded by The Norwegian Ministry of Health and C are S ervices. References A ct of 2 July 1999 N o. 63 relating to Patients’ R ights. UNOFFICIA L TRANS LATION . . Accessed 27-11-2007. A ct of 2 July 1999 N o. 64 relating to H ealth Personnel etc., UNOFFICIA L TRANSLATION.. . Accessed 27-11-2007. Akre, V., Pedersen, R., and Førde, R. (2008) ‘Barriers and challenges in clinical ethics consultations: T he experiences of nine clinical ethics committees’. Unpublished Work. A ulisio, M .P., A rnold, R .M ., and Y oungner, S .J. (2000) ‘H ealth care ethics consultation: N ature, goals, and competencies. A position paper from the Society for Health and Human Values-Society for Bioethics Consultation Task F orce on S tandards for Bioethics C onsultation’, Annals of Internal Medicine, 133:1, 59–69. Borovecki, A., Oreskovic, S., and ten Have, H. (2005) ‘Ethics and the structures of health care in the European countries in transition: H ospital ethics committees in C roatia’, BMJ, 331: 7510, 227–229.

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British M edical A ssociation, the R esuscitation C ouncil (U K), and the R oyal C ollege of N ursing (2007) ‘A joint statement from the British M edical A ssociation, the R esuscitation C ouncil (U K) and the R oyal C ollege of N ursing’. . Accessed 27-11-2007. T he D anish C ouncil of Ethics (2006) ‘End of life: Ethical challenges and problems’ . Accessed 27-11-2007. T he D irectorate for H ealth and S ocial A ffairs (2004) ‘T he patients rights act: Legal directive IS-12/2004’ [in Norwegian]. . A ccessed 27-11-2007. Emanuel, E.J. (1988) ‘A review of the ethical and legal aspects of terminating medical care’, American Journal of Medicine, 84:2, 291–301. Førde, I.S., Berner, M., Pedersen, R., and Førde, R. (2007) ‘Insufficient overview of ethical guidelines’, Tidsskrift for Den Norske Laegeforening, 127:10, 1394– 1396. Førde, R., Pedersen, R., and Akre, V. (2008) ‘Clinicians’ evaluation of clinical ethics consultations in N orway: A qualitative study’, Medicine, Health Care and Philosophy, DOI 10.1007/s11019-007-9102-2. H urst, S .A ., H ull, S .C ., D uVal, G., and D anis, M . (2005) ‘H ow physicians face ethical difficulties: A qualitative analysis’, Journal of Medical Ethics, 31, 7– 14. Markestad, T. (2003) ‘CPR and do-not-resuscitate orders [in Norwegian]’, Tidsskrift for Den Norske Laegeforening, 123:22, 3179. M cC rary, S .V. and S wanson, J.W . (1999) ‘Physicians’ legal defensiveness and knowledge of medical law: Comparing Denmark and the USA’, Scandinavian Journal of Public Health, 27:1, 18–21. McCrary, S.V., Swanson, J.W., Coulehan, J., Faber-Langendoen, K., Olick, R.S., and Belling, C . (2006) ‘Physicians’ legal defensiveness in end-of-life treatment decisions: Comparing attitudes and knowledge in states with different laws’, Journal of Clinical Ethics, 17:1, 15–26. McCrary, S.V., Swanson, J.W., Perkins, H.S., and Winslade, W.J. (1992) ‘Treatment decisions for terminally ill patients: Physicians’ legal defensiveness and knowledge of medical law’, Law, Medicine and Health Care, 20:4, 364–376. M cGee, G., C aplan, A .L., S panogle, J.P., and A sch, D .A . (2001) ‘A national study of ethics committees’, American Journal of Bioethics, 1:4, 60–64. M cGee, G., S panogle, J.P., C aplan, A .L., Penny, D ., and A sch, D .A . (2002) ‘S uccesses and failures of hospital ethics committees: A national survey of ethics committee chairs’, Cambridge Quarterly of Healthcare Ethics, 11:1, 87–93. M cLean, S .A . (2007) ‘W hat and who are clinical ethics committees for?’, Journal of Medical Ethics, 33:9, 497–500.

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M cN eill, P.M . (2001) ‘A critical analysis of A ustralian clinical ethics committees and the functions they serve’, Bioethics, 5:5–6, 443–460. M ohindra, R .K. (2007) ‘M edical futility: A conceptual model’, Journal of Medical Ethics, 33:2, 71–75. N orwegian Board of H ealth (2002) ‘A dvanced planning and documentaion of do not attempt resuscitation decisions’ [in N orwegian]. . Accessed 2711-2007. Pedersen, R . (2004) ‘H igh-level confusion’ [in N orwegian], Dagens medisin, 411-2004.M agazine A rticle. Pedersen, R., Akre, V., and Førde, R. (2008) ‘What is happening during case deliberations in clinical ethics committees? A pilot study’. U npublished Work. Pedersen, R ., Bahus, M .K., and Kvisle, E.M . (2007) ‘W ithholding and withdrawing treatment, ethical and legal aspects’, Tidsskrift for Den Norske Laegeforening, 127:12, 1648–1650. Pedersen, R . and F ørde, R . (2005) ‘W hat are the clinical ethics committees doing?’, Tidsskrift for Den Norske Laegeforening, 125:22, 3127–3129. Pedersen, R ., H ofmann, B., and M angset, M . (2007) ‘Patient autonomy and informed consent in clinical practice’, Tidsskrift for Den Norske Laegeforening, 127:12, 1644–1647. President’s C ommission for the S tudy of Ethical Problems in M edicine and Biomedical and Behavioral R esearch (1983) Summing Up (W ashington, D .C .: US Government Printing Office). Roth, P.A. and Harrison, J.K. (1994) ‘Ethical conflict in long-term care: Is legislation the answer?’, Journal of Professional Nursing, 10:5,. 271–277. S imon, A . (2001) ‘Ethics committees in Germany: A n empirical survey of C hristian hospitals’, HEC Forum, 13:3, 225–231. S lowther, A ., Johnston, C ., Goodall, J., and H ope, T . (2004) ‘D evelopment of clinical ethics committees’, BMJ, 328:7445, 950–952. S ommer, I., Pedersen, R ., H oie, A .G., and N ortvedt, P. (2007) ‘Guidelines on do-not-resuscitate orders in N orwegian hospitals’, Tidsskrift for Den Norske Laegeforening, 127: 10, 1368–1369. Spielman, B. (1993) ‘Invoking the law in ethics consultation’, Cambridge Quarterly of Healthcare Ethics, 2:4, 45–467. van der H elde, A ., D eliens, L., F aisst, K., N ilstun, T ., N orup, M ., Paci, E., van der W al, G., van der M aas, P.J. and EUR ELD consortium (2003), ‘End-of-life decision-making in six European countries: Descriptive study. [see comment]’, Lancet, 362:9381, 345–350. van O orschot, B. and S imon, A . (2006) ‘Importance of the advance directive and the beginning of the dying process from the point of view of German doctors and judges dealing with guardianship matters: results of an empirical survey’, Journal of Medical Ethics, 32:11, 623–626.

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C hapter 12

Bioethics, Biopower and the Post-Genomic C hallenge Kjetil R ommetveit

Introduction T hroughout much of the history of bioethics criticisms have been raised against the field for being negligent of social forces and overly focused on the singular individual. The critique has come from inside the ranks of bioethics (Callahan 1999) as well as from outside (D e W ries and S ubedi 1998). In general, there seems to be a wide gap between bioethics and the social sciences that cannot easily be bridged (D e W ries et al. 2007; H oeyer 2006). W ithin such a situation, a growing literature on biopolitics (see, for instance, O ng and C ollier 2005) could offer valuable supplements, both to the bioethical literature as such and as a means for bridging the gaps between social science and bioethics. In this chapter some of the broad challenges facing health care and bioethics in the wake of the ‘genomic turn’ in medicine are discussed, and the analysis is used as a possible entry-point for inserting the biopolitical analysis into the bioethical discourse. T hen, there is an overview of some main positions within the ‘field’ of biopolitics, and a critical assessment of the possible contributions such perspectives may offer concerning the challenges posed by genomic medicine. T he chapter reaches the conclusion that there is still some way to go before the two can engage in fruitful exchange. T o start with there is a brief exposition of ‘biopolitics’ and ‘bioethics’. T he concept of biopolitics was coined by M ichel F oucault in the 1970s in The History of Sexuality Part 1. O ne important reason why the F oucauldian analysis is so instructive is the way in which it connects politics with knowledge, technology and power. Indeed, the notion of biopolitics can hardly be separated from the accompanying notion of biopower. In a well-known quote, Foucault refers the concept to developments in the eighteenth and nineteenth centuries in which the biological existence of man, that is, life processes themselves, were introduced into the political and legal domains, for the first time a matter of state interference: ‘F or millennia man remained what he was for A ristotle: a living being with the additional capacity for political existence; modern man is an animal whose politics calls his existence as a living being into question’ (F oucault 1978, 143). T he emergence of biopower resulted in ‘an explosion of numerous and diverse techniques for achieving the subjugations of bodies and the control of populations’ (Ibid., 140). F oucault was pointing towards a new sort of power over bodies and

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populations that could only rise along with systematic knowledge in the human sciences, among them biology and scientific medicine. For instance, the rise of statistical and geographical knowledge about diseases rendered state interventions with the health of populations possible. H ygiene, social medicine and epidemiology are all central expressions of biopower and biopolitics. ‘Bioethics’, on the other hand, is perhaps best described as a multidisciplinary field of theoretical approaches and practices, coming out of philosophical, theological and legal thought in the 1960s and 1970s, trying to come to terms with central scientific and technological developments in medicine. By focusing mainly on the rights of individuals, bioethics sought to establish protection for human subjects of medical research and for patients in the face of a fast-growing and increasingly powerful medical system. Patient’s rights as we know them today are a concrete outcome of bioethical and legal interventions with research and clinical practice. D uring the 1970s the concept of informed consent emerged as a central tool for regulating the relations between biomedicine and research subjects, and the concept is now also finding its way into clinical practice in general, then as a tool for including patients in the medical decision-making process. In a central document, The Belmont Report, from 1978, the philosophical concept of autonomy was instigated at the centre of bioethical theory and practice, where it came to function as the ethical and philosophical justification for the requirement to take the patient’s or research subject’s informed consent. By the mid 1980s, bioethics had established itself as central to the regulation of the relation between the healthcare system, research, patients and research subjects. It did so through its widespread use in a number of old and new institutions, like courts, ethical review boards, hospital committees and genetic counselling (Jonsen 1998). In the following years, as bioethics has continued to expand, there has been a growing criticism, from central actors within the discipline itself (Veach 1984, 1995), from sociologists (W olpe 1998) and healthcare personnel (T auber 2005), of bioethics both as theory and practice. T he strong emphasis on rights and on the value of individual choice entailed by the central concepts in the field, it is argued, covers up many of the institutional, technological and economical power-relations in which bioethics and biomedicine increasingly find themselves. This has been particularly so in the U nited S tates, where the concept of autonomy holds a particularly strong position, but it is also true of Europe. T he main relevance of the concept of biopolitics in today’s bioethics, therefore, would be to illuminate and articulate the power relations in which the practices of bioethics and medicine contribute to the improvement of those practices (see W ynne, C allon and Goncalves 2007).  ���������������������������������������������������������������������������� More accurately, one specific notion of autonomy, psychological rather than philosophical in its basic assumptions, was put forward (Kristinsson 2007). A ccording to the view of the Belmont report, as well as the more elaborate but closely related account given in (Beauchamp and C hildress 2001), autonomy emerges as an ability of single individuals for making rational choices. In the Kantian tradition, for example, autonomy is not an ability of a single individual, but rather a quality of any rational being (O ’N eill 2002).

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If such an undertaking is to make sense, we should first consider the different standings, academically and institutionally, of the two positions. T he F oucauldian analysis of biopolitics is primarily restricted to academic analyses in the fields of the history of ideas, philosophy and sociology. A lthough this may be about to change due to increased interest in biopolitics, we may still take as our starting point that it will not carry direct implications in the lives and practices of people outside the academic world. That is one of the defining characteristic of bioethics: as an academic discipline it was always something of a strange creature, its central task being to assist scientists, medical doctors, politicians, lawyers and patients in concrete moral dilemmas. T hus it seems that we are dealing with a classical philosophical problem in a new setting: how to move from theory to practice. In more institutional terms, it is the question of how to apply insights from a mainly theoretical discipline within a field of study that also has a strong practical side. Towards the end of this chapter, a critical balance is struck between the need for practical application and theoretical mediation. It is argued that this is most likely to succeed if the analysis is cast in terms that are as near as possible to those applied in actual action, and that this is a weak point within the Foucauldian and neo-Foucauldian traditions. T o start with the discussion is situated within the context of genetic diagnosis and counselling, where it is shown how the notions of informed consent and autonomy emerge as central policy-tools. T hen it is argued that the post-genomic era raises serious challenges for bioethics, and that these challenges articulate and strengthen already existing weaknesses in the field’s central concepts. Following this, some (mainly) neo-F oucauldian conceptions of biopolitics and their possible contributions to the problem complex, significantly that offered by Nikolas Rose, are considered. F inally, the chapter returns to the issue of a critical mediation between the two fields. Genetic Diagnosis, Counselling and Informed Consent A genetic diagnosis can be defined as ‘the analysis of human DNA, RNA, chromosomes, proteins, and certain metabolites in order to detect heritable disease-related genotypes, mutations, phenotypes, or karyotypes for clinical purposes’ (Burke 2002). So far, the scope of genetic medicine has been limited by the tests available: they have been used to diagnose a number of low-prevalence, rare heritable disorders. O nly in a very small percentage of these cases, of which Huntington’s is the prime example, do such diagnoses yield secure knowledge. Concerning many other diseases, such as sickle cell disease, Canavan disease and cystic fibrosis, screening practices take place at the level of populations at risk, significantly delineated by ethnicity. When applied to individual cases, such practices, combined with other risk factors such as age, sex and family history, can be used to construct risk profiles for single individuals.

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Genetic diagnosis often comes along with genetic counselling, in which a geneticist or a genetic counsellor helps patients understand and come to terms with genetic information. T o ensure that the rights of the patient are protected, the geneticist or counsellor informs the patient of possible consequences: possible diagnoses and their further medical implications, possible therapeutic measures, implications for other members of the family and so on. On the background of understanding the information supplied by the counsellor, the patient gives their consent to continuing the diagnostic process or they abstain from it. It is then supposed that the patient understands the genetic information so as to be able to make sufficiently informed choices regarding future treatment and/or changes in lifestyle (C layton 2003). The combination of genetic information, genetic counselling and the taking of the patient’s informed consent has been conceived of as one complex through which the interests of the patient as well as the regulatory interests of society have been taken care of. The process is regarded as strengthening, helping and facilitating the capacities of the patient for rational decision-making in the process of shaping their life project. Philosophically speaking, this amounts to a strengthening of the patient’s autonomy. A s stated in one central (A merican) policy document: In sum, the fundamental value of genetic screening and counselling is their ability to enhance the opportunities for individuals to obtain information about their personal health and childbearing risks and to make autonomous and noncoerced choices based on that information (T he President’s C ommission 1983).

A s already argued in the more general context of informed consent and autonomy, this quote must be seen against the social and historical background in which the power of medical research and a rapid expansion of the healthcare system had been radically questioned and proven to be a danger to the single patient or research subject (Beecher 1966; F oucault 1973; Jonas 1969). In the context of genetic screening programs similar problems had made themselves manifest due to the experimental character of the programs, sloppy routines and the mandatory character of research directed mainly at ethnic minorities (N ational A cademy of S ciences 1975). O ut of this context genetic testing, counselling and informed consent emerged as a more robust regulatory, ethical and scientific complex of decision-making. However; these developments did not simply turn out to be precautionary measures for protecting the patient in the face of a growing healthcare and research system. R ather, a new science/policy complex emerged that also constructed the genetic patient in a certain manner: Genetic testing and counselling do not merely protect the autonomy of the vulnerable patient; they positively enhance the potential for autonomy. T he main reason for this, as can be seen from the above quote, is that they increase the possibilities of the single patient for free choice through providing them with an increased amount of information. N ow, as already mentioned, there are reasons for doubting the general validity of such projections of human agency. H ere are two that have by now become wellknown in the bioethical literature:

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W here the information obtained is particularly grave, the response of the patient may be anything but well informed and ‘rational’ in the ordinary sense of the word (T auber 2000). S tudies of patient’s perspectives of genetic counselling reveal that patients do not generally respond to the giving of information, genetic or otherwise, as prescribed by the notion of the autonomous decision-maker (Saukko et al. 2007; S cully, Porz and R ehmann-S utter 2007). T he patient, it seems, is not all that different from the airplane passenger being treated to the safety instructions of the air hostess: much of the information is lost.

There thus seems to be a certain misconstrual of agency at work in the projection of the patient as an informed decision-maker about their genetic future. There are important institutional uncertainties as well. A s pointed out by O nora O ’N eill, the notion of informed consent proceeds on a general supposition of the patientphysician relationship as an ‘I-thou’ relation (O ’N eill 2001). H owever, in many cases the patient is only one among many interacting agents: cadres of health personnel, family and relatives, administrators, ethicists and lawyers may all be involved in the decision-making process. This places the patient within a complex web of relations in which the old image of the face-to-face encounter is illusive. In this section we have seen how autonomy and informed consent have emerged as necessary although somewhat problematic policy tools on the interface between biomedicine and society. W hereas the notion of informed consent initially was conceived of as a way of protecting the vulnerable subject of research, the insertion of autonomy, understood as the right to choose, has entered into the equation and redefined the medical and genetic decision-maker. I now continue by arguing that these features of bioethics and biomedicine can be expected to be further accentuated now that the post-genomic era is upon us. The Post-Genomic Challenge F ollowing the mapping of the human genome, futures are projected in which the limited diagnostic and screening practices that have so far made up genetic medicine are radically expanded. T hrough the sequencing of individual genomes mutations will be discovered at the level of individual DNA : in single polymorphisms or in more complex associations, so-called haplotypes (Guttmacher and C ollins 2003). D iagnosis at this level will be aimed at all or most of the common diseases, hence a move from the classical, single-gene disorders to complex disorders such as cold, obesity, lung cancer, alcoholism, asthma and depression. W e may foresee that developments come in three related dimensions: first, the new medicine will be predictive, insofar as it aims to foresee risks to the future health of persons that are not presently ill. S econd, it will be preventive, insofar as it tries to avoid that these risks materialize. Third, it will be personalized, insofar as it is aimed at the genomic constituency, the environment and lifestyle of the single individual.

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Pharmaceutical companies hold out the promise of tailor-made treatments suited to the genomic make-up of the individual patient, and biomedical geneticists promise individualized diagnosis and treatment adjusted to the genomic make-up of the individual patient (Collins and McKusick 2001; Lesko 2007). By sticking to the account of genetic decision-making given by The President’s C ommission, then, there is every reason to expect that these developments will further advance and enhance the autonomy of patients. But, as argued, there are good reasons for doubting such projections. T his is particularly so when trying to integrate sociological insights into the bioethical analysis, and even more so when the central tenets of the broader socio-technocratic and industrial apparatus generated by post-genomic research are considered. Broadly speaking, problems may be seen to heap up along two different though related axes: scale and time. In this section, I will argue that the issues generated by post-genomic research, especially those concerned by largescale epidemiological studies and biobanks, are much broader, both politically and ethically, than grasped in the general bioethical debate. Because bioethics in most cases keeps its eyes firmly on the single individual, it risks losing out on broader developments and ethical dangers. T he greatest challenge, I will argue, lies in the radically transformative potential of the new (diagnostic) technologies that we are bringing about. Insofar as informed consent becomes a vehicle for the transformation of healthcare, it does take on a political role. It is, however, to be doubted that informed consent can do the job that is demanded of it (Brekke and S irnes 2006). F irst, for the purported advances to individual autonomy to come about, a rather large and complex detour must be made. ‘C lassical’ clinical genetics would concentrate on the correlations between single mutations and their phenotype expression in limited communities or families exposed to one particular disease (M ueller 1998). Post-genomic research, however, is directed at large cohorts or whole populations, and at the statistical correlation of genetic variations with non-genetic information such as dietary and lifestyle factors, taken for instance from individuals’ medical records or through questionnaires. H ence, postgenomic medicine depends on the participation, understanding and trust of general practitioners, national healthcare systems and, most importantly, the groups and populations to be studied (Godard et al. 2004; Knottnerus 2003). A lthough accompanied by other measures such as Ethical R eview Boards and legislation to protect the privacy of individuals and promote data security, the main regulatory tool for legitimizing this detour remains the informed consent of the individual research subject (Clayton 2003; Greely 2001; Maschke 2006). O ne central question concerns the capacity of informed consent to accomplish this task. It has already noted how genetic information may elude the attention of patients undergoing diagnosis and counselling. T his is no less so when applied to the much more elusive context of population-based epidemiological research: A s the scale of these projects is so big, the procedure of informing critically relies upon information to be conveyed in the form of written declarations of the content and

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character of the research. T here are, however, strong limitations on what people actually grasp from written information sheets, or on how much they actually read (D ixon-W oods et al. 2007). Results from studies of consent procedures in biobank research show that people generally take a low interest in the research to which they consent, and that the information turns out as too dense, too technically and institutionally complex (D alsgaard 2007; H oeyer 2003; H ofmann 2006). H ow come, then, that people still participate? Evidence from sociological research indicates that participation of the general populations is not primarily founded in critical assessments of the content and character of the actual research; people do not carefully assess the pros and cons of participation. They do not first and foremost ask ‘what’s in it for me?’ People participate for much broader, harderto-grasp, perhaps also more valuable reasons. T he relation between society and medical research is primarily one of trust, not one of rational calculation (O ’N eill 2002). So also in the case of biobank research, the donation of biological material or information generally takes place within a meaning-universe of altruism in which the donation is seen more as a gift to a common good, ‘research’ (Busby 2007; D alsgaard 2007). It builds on pre-established practices such as the donation of blood, organs and semen, and it feeds into very broad and general understandings of the value of contributing to science, to the common good and to society. H ence, large-scale participation thrives more upon established bonds of trust than upon carefully read and studied information. T his is not a strange thing, people are usually caught up in a number of concerns and doings, and cannot be expected to make political evaluations about the future of healthcare while reading an informed consent sheet or answering a questionnaire. A n example is the Norwegian network Biobanks for Health, which will soon comprise biological samples and other information on 450 000 persons, roughly 10% of the Norwegian population. O n the web pages of Biobanks for Health, it is stated that the goal of the research is to ‘provide knowledge that can lead to better prevention and treatment of disease. This knowledge comprises the demonstration of new genes associated with complex diseases and new information about the interactions between genetic and environmental factors’. N otions of discovering the ‘causes of disease’ are frequent. Here are some examples of questions taken from the Norwegian CONOR-study, which makes up one central pillar of the overall network of Biobanks for Health: ‘H ow has your physical activity during leisure time been over the last year?’; ‘Do you smoke?’; ‘How many cups of coffee do you drink per day?’; ‘Have you in the last two weeks felt: Nervous or worried; Anxious; Confident and calm; Irritable; Happy/optimistic; Down/depressed; Lonely’; ‘What is your current work situation?’ (CONOR 2007). In most cases the participant is asked to give estimates; hours of physical activity, number of cigarettes, and so on. T hese are just a few examples; all in all there are nearly 60 questions, ranging from subjects such as disease to family and friends, living conditions, work and nutrition.  �������������������������������������������������������������������� My translation, quoted from <www. fhi.no/eway> accessed 06.12.2007.

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Now, the point is this: People participate in biobank research on the background of very general, diverse and vague notions of the relation between medical research and society. It is hardly likely, however, that what they are consenting to and contributing to is to change that very relation itself. A t the same time the potential for such change is strong within large epidemiological studies in the postgenomic age. Indeed, a certain vision may be identified within the field in which the whole of society, healthcare, human relationships and moral responsibility itself, is redefined. Much of it hinges upon the kind of knowledge that will emerge from these studies: A ccording to the general meanings described above, what one might expect is new forms of treatment and therapies to emerge along with the new diagnoses. However, the knowledge to be gained from post-genomic research is first and foremost risk information, that is, information about possible futures. This kind of knowledge may, along with the many institutional, economic and technological reconfigurations accompanied by it, radically transform society, ethics and the legal order. T hese are transformations that will be brought about through a strengthened emphasis on the single individual, in scientific and ethical terms alike. Take the following quote from one of molecular biology’s grand old men, S ydney Brenner: the individual…does understand gambling. We should say to him: “I’ve looked at your genome, and I can tell you that you have a 90% chance of dying of cardiac disease by the age of 60. H owever, if you stop watching television, and start exercising and eating properly, give up M acD onald’s, go through all these remedial therapies, then your chance of dying will fall from 90% to 5%”…I once said that what we need to do is tell people that they do not own their bodies; they have merely leased them from the human germline. If they’re not prepared look after them, then they could be taken away from them. Of course we can’t do that, but we could envisage a time in which we might think differently about the moral responsibility of a person to look after his or her body…This suggests a future in which our knowledge about ourselves produces what we might call the new public health…Perhaps we are now on the brink of creating a new public health that will treat all of humanity and redefine the relationships between individual persons, the bodies they inhabit and the societies they create (Brenner 2006).

A n old enigma of philosophical ethics is here recast in genetic clothing: S ocrates asked whether it is possible to know the true and the good and still do that which is wrong. Brenner’s ‘scientific ethic’, as he calls it, does not purport to answer that question. H owever, it does convey the strong prescriptive notion that when people are informed about their future risks through genetic testing, they also ought to act upon that knowledge. Clearly, Brenner is talking about an emerging ethic, and he explicitly rejects the possibility that third parties, such as insurance companies, should also be granted access to the information about the single individuals. But that is sociologically, politically and philosophically naïve. In the tradition of legal philosophy from Kant to Dworkin there is an explicit emphasis on ethics

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as a sort of blue-print for legislation. According to Dworkin there is no clear line to be drawn between ethics, politics and law, and that is particularly so in fields of no or little precedence (Dworkin 1977). Therefore we cannot expect that significant parts of the ethical and the moral fields change, without changes to the legal and political order as well. Brenner projects a future ethics, but he does it on the basis of the present legal and political order, and he assumes that this will remain constant. But there is no way of guaranteeing that if genomics reform our notions of ethical responsibility, this will not also influence our notions of legal responsibility. Quite the contrary, with the emergence of a new ethics of personalized genetic responsibility, the chance is increasing that these other institutions will also change. T he relation with insurance; the rights to healthcare and social security: none of these should be regarded as outside the field of possible reform. If there is a general change in ethics and societal norms, these may very well follow. W ith this in mind we may cast another glance at the questionnaire from the N orwegian CONOR study. T his time, however, our pre-understanding is not that of contributing to ‘research’, to ‘finding the causes of disease’, or the like. Instead, the questions are viewed as blueprints for the healthcare system and the society that is being brought into existence. A time may be envisioned, not so distant, when these questions will be posed, not from a researcher, but from a medical geneticist, a lawyer working for the social service, or even an insurance agent, and where humans, as autonomous beings, will be made legally and economically responsible for our choices, our failures and our shortcomings. If the above sketched developments are real possibilities, and I think that they are, then there is a huge amount of critical issues that are not communicated in the bioethical and regulatory debate, and so talk of ‘informed consent’ becomes illusory. C omplex political, legal and socio-economic restructurings are legitimized by recourse to an ethical and legal institute that was conceived in a different context and for a different purpose (Brekke and Sirnes 2006). The story of bioethics and medical research has been referred to briefly. It was seen how informed consent came to be inserted into basic biomedical research and, following that, how it also came to be included in clinical contexts of genetics research, diagnosis and counselling. T hese developments were driven by the recognition that the interests and rights of individual subjects had been unduly subordinated to the interests of science and society, indeed an ‘unfortunate separation between the interests of science and the interests of patients’ (Beecher 1966). H ans Jonas stated this separation of interests in even clearer terms, and he further placed it within the classical political relation of the individual to society: …we require a careful clarification of what the needs, interests, and rights of society are, for society – as distinct from any plurality of individuals – is an abstract and, as such, is subject to our definition, while the individual is the primary concrete, prior to all definition, and his basic good is more or less known. Thus the unknown in our problem is the so-called common or public good and its potentially superior claims, to which the individual good must

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or might sometimes be sacrificed, in circumstances that in turn must also be counted among the unknowns of our question… (Jonas 1969, 221).

When measured towards these basic lessons from early bioethics, it may be asked whether policy and bioethics are going down the slippery slope. S uch a ‘diagnosis’ does not hinge upon any established knowledge that catastrophic events will arise from post-genomic epidemiological studies. T he point is rather that there are good reasons for doubting that bioethics does, at present, possess the conceptual or theoretical means for dealing with these new and fast developments. T hese are developments that pose threats to the general trust between physician and patient, between science and society, but also, more radically, to the privacy and autonomy of citizens in general. One sign of this is to be found within the bioethical debate on biobanks and informed consent, where it is argued that informed consent in its present form is ‘unethical’ because it poses hindrances to biomedical progress (H ansson et al. 2006). F or the moment disregarding the general inability of the concept as a regulatory tool, this is a clear-cut example of the logic that Jonas was reacting against. It is the greater good of ‘research’, ‘the health of all’, of ‘society’, overriding the interests of the concrete individual. It has been argued in this section that the political and ethical issues inherent in large scale population research are indeed constructed too narrowly by bioethicists and regulators alike. It has also been stated in the beginning that these are problems of both scale and time. F irst, the technical complexity and the institutional implications render informed consent near to meaningless. Even defenders of biobank research admit that ‘R esearch into human genetics has stretched current regulations of human subjects research beyond the breaking point’ (Greely 2001). Second, the general debate presupposes the present status of legal and political institutions, those that go with today’s ethical norms and standards. What is not taken into account, however, are the mechanisms by which we are already changing the presuppositions, ethical and legal, of the very same debate. T herefore, if bioethics is to maintain its general mandate, it needs to reflect on the protection of the single individual in ways that are also inherently political and dynamic; and it needs to come to terms with the complex power/knowledge relations in which patients, researchers, medical doctors, and indeed every citizen, find themselves. With that in mind we return to the F oucauldian analyses. Analytics of Biopolitics/Biopower To start with some brief remarks on the relations between knowledge, power and sovereignty as seen by F oucault himself. T hen the discussion turns to more recent  ���������� cf. Jonas.

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authors who have addressed the issues of late modern biomedicine more explicitly. T wo different political strains are described, one radically critical of modernity, as offered by Giorgio Agamben and Zymunt Baumann, and one liberalist, given by Nikolas Rose and Paul Rabinow. The central difference between the two strains of thought hinges on the characterizations they give of power/knowledge relations in late modernity. A lthough critically engaged and concerned with the many encroachments made possible by modern technologies and knowledges, Foucault did not see power/ knowledge as necessarily negative, or even as oppressive. True, in books such as Discipline and Punish, he showed how regimes of discipline, surveillance and constraint, enabled by the new human sciences, achieved unprecedented levels of control with individual bodies. T hose subjected to such regimes were frequently social deviators such as criminals, the mentally ill, the poor, the contagious or homosexuals, to be isolated from society at large. H owever, these techniques of control were de-institutionalized and found their ways into many of society’s other domains. Knowledge practices of objectification and control were dispersed among a great number of actors, and in the process they also probed into the lives of ‘normal’ citizens. A new kind of subjectivity became possible through ‘the formation of procedures by which the subject is led to observe itself, to analyze itself, to decipher itself, to recognize itself as a domain of possible knowledge’ (F lorence 1994). T hrough such developments power was also dispersed among a greater set of actors, no longer residing in one place only, that is, with the sovereign body of the state. T he same, in effect, also happened with the language of sovereignty, that is, appeals to legitimacy and to rights. T he language of rights, F oucault surmised, was at once situated within complex relations of knowledge and power, whereas (paradoxically) at the same time making reference to a position outside of such relations. F oucault believed political theorists and ethicists to be scratching the surface of power only, insofar as they remained preoccupied with the universality of right rather than the many differing practices within which rights and sovereignty were played out (R ouse 1994). T he crucial point here is that the language of rights and the mechanisms of power are intrinsically connected: ‘sovereignty and disciplinary mechanisms are two absolutely integral components of the general mechanisms of power in our society’ (F oucault 1980, 108). Foucault’s point about the distribution of power is reflected in the language of modern knowledge practices. Because citizens themselves take part in their own lives’ constitution, and because the techniques for doing so are dispersed within complex webs of power and knowledge, the state cannot rely upon its authority in order to govern. T he control that authorities exert over their citizens is framed in a positive language, like that of promoting health and strengthening life, in which the state seems to become more of a facilitator or co-constructor of the life politics of the  ������������������ S ee F oucault 1975.

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citizens (Foucault 1986). Significantly, although biopolitics is thus made possible through the human sciences, the main language of governance and sovereignty is that of rights. For the sake of biopolitical governance, then, science and law are complementary forces. Radical critique However, the distributions of power and knowledge in democratized societies may become uprooted, and knowledge may be subordinated to the precepts of total power. Ideologies of race, purity and natural order may be used by the authorities to cleanse the general population from unwanted individuals who are seen to pollute and break down the normal and the healthy. In cases such as these, biopower turns dark and destructive. Nowhere was this more clearly seen than in the concentration camps of the Third Reich. According to the works of Giorgio Agamben and Zygmunt Bauman, the totalitarian control with the purity of the population resides at the very heart of modernity. F or A gamben, the concentration camp makes up the ‘biopolitical paradigm of the modern’ (Agamben 1998, 119). W ithin this paradigm individuals, minorities and groups of the population may be sacrificed for the sake of the greater good of the nation’s health or of the race. S uch historical phenomena will not be discussed in particular here, but there will be more detail on how A gamben and Bauman arrive upon such radical and, for most, counter-intuitive, notions about modernity, knowledge and power. Among the two, A gamben may be seen to be the one who follows most directly up on the Foucauldian challenge, insofar as he draws an even closer link between life and state politics than does F oucault. A s referred to in the introduction in the classical world, the biological existence of man was beyond the realm of the political. F oucault’s analysis hinges on the removal of this barrier between man as a biological being (zoe) and as a political being (bios) that came about with the modern human sciences. In the account given by A gamben, which relies more upon arguments from political theory and philosophy, a much more direct link is made between the power of the sovereign and the bare life of the human being. Significantly, Agamben does not ground his analysis in modern disciplines, but rather in an argument that goes all the way back to ancient Rome. There, in the figure of Homo Sacer, he discerns the origin of an enigma of W estern history and of democratic politics. Homo Sacer is banned by the law, and so can be killed by everyone. Still, he cannot be sacrificed in a religious ritual. Homo Sacer exists within the law but still he has no rights (one parallel drawn by A gamben is to modern-day refugees). T here is a foundational paradox inherent in this character that has its counterpart in sovereignty itself: T he rule of law can only be guaranteed insofar as there is somebody who, in states of exception, can set that rule aside in the name of the greater good of all, of society. Being the final guarantee of the rule of law as against the state of nature, sovereign rule finds itself both outside and inside the legal order. Sovereignty sets itself through insofar as it has the power to suspend this order under the state of

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exception. In that case, governance no longer abides by the civil rights of the citizen (bios), but rather by pure power over life itself (zoe). T his paradox, says Agamben, runs as a red thread through the history of the West, finally to unfold in the concentration camps. The camp, therefore, exemplifies the hidden truth of all sovereignty, a space of lawlessness within the law that makes possible the pure domination over bare and vulnerable life by sovereign power. T his challenging starting point may then be transferred to other contexts in which the over-all health of the population has been sought improved, for instance the eugenics movements or the hygiene movements. It also plays out within differentiated and modernized disciplines in the shape of the pastoral power of experts: ‘…the sovereign is entering into an ever more intimate symbiosis not only with the jurist but also with the doctor, the scientist, the expert, and the priest’ (A gamben 1998, 122). T he rights of the citizen become highly ambivalent phenomena insofar as they accommodate a ‘tacit but increasing inscription of individuals’ lives within the state order’ (ibid. 121). T o be the bearer of rights, in other words, is simultaneously to be rendered accessible to intervention from state-sanctioned expertise. Insofar as experts increasingly come to exercise greater discretion and power, the state of exception also seeps into these other systems. The analysis of Zygmunt Bauman (1989), which is not strictly speaking F oucauldian, describes and explains the H olocaust as the ultimate expression of technical rationality and its de-coupling from any sphere of intrinsic value. T hrough entering into large, impersonal and bureaucratic systems in which the values of the undertaking resides more within the means-to-an-end logic of the system, the moral agent is distancing himself from the consequences of his actions: ‘T he more rational is the organization of action, the easier it is to cause suffering’ (Bauman 1989, 155). W ithin such a process, science may occupy a privileged position: more than any other authority science is allowed by public opinion to practice the otherwise ethically odius principle of the end justifying the means. S cience serves as the fullest epitome of the dissociation between the ends and the means which serves as the ideal of rational organization of human conduct: it is the ends which are subject to moral evaluation, not the means (ibid.159).

The arguments will be known to most political scientists, highly inspired as they are by M ax W eber’s analysis of bureaucratization and of H anna A rendt’s analysis of N azism and evil. T he H olocaust, says Bauman, was made possible due to a lack of other mechanisms that could keep state power in check. Hence, where Agamben posits a direct link between bare life and sovereign power, Bauman posits a direct link between the sovereign state and technology. To be sure: on both accounts, other (historical, contingent) factors had to contribute as well; the significant point here is that such abuses of power always reside within the modern project as inherent to modernity itself. N ow, although it is by no means clear how these analyses should be incorporated into bioethical analyses: they do deal with some of the same problems as referred

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to in the above analysis: Early bioethicists like Henry Beecher and Hans Jonas specifically posed the issue of human experimentation as an ethical and political relation between the individual, science and society. A gamben and Bauman deepen this analysis by pointing to underlying political, technological, scientific and legal dynamics, to mechanisms of governance that facilitate the subordination of the individual to the precepts of power and knowledge. To the conscious understanding of agents, such as researchers, medical doctors or lawyers, these phenomena will appear more as blind zones and un-intended consequences than as intended action. In the previous section we saw how a new ethic may be emerging along with new technological and medical constellations of personalized medicine. W e also saw how scientists tend towards framing these developments in utilitarian terms, that is, as discovering the causes of disease, of improving the health for all, and so on. Bioethics and law, through their strong emphasis on the (autonomous) choices of individuals, are likely to confirm these developments rather than question them. W ith recourse to A gamben, we are made aware of the double character of law: even where it seeks to protect the individual, it may actually serve as a tool for further entrenching themselves within mechanisms of power/knowledge. Where informed consent and rights to privacy and data protection are used to enrol and legitimize the participation of large segments of the populations, there is, as seen, also a very real possibility that these developments themselves feed back into the normative and legal systems. T he effect may be encroachments on what is today termed privacy and autonomy. F rom Bauman similar lessons about the doubleedged character of technology are drawn: where increasingly greater resources are assembled and invested in the post-genomic enterprise, the risks of goalsjustifying-the-means types of logic are indeed increasing. T his has been seen in calls for broad and future consent. However, as may also be glimpsed from these accounts of knowledge and power: if the inclusion of biopower into bioethical analysis is to facilitate and promote necessary action, accounts such as these may be stifling rather than helpful. Especially in the case of A gamben it is hard to see where to turn: every action is already within the scope of sovereign power, and any appeal to the rights of man may strengthen that grasp. T hat is also the argument of Paul R abinow and Nikolas Rose: ‘Surely the essence of critical thought must be its capacity to make distinctions that can facilitate judgement and action’ (R abinow and R ose 2006, 201). We turn now to the liberal account of biopower/bioknowledge before any further judgements are passed. Liberal biopolitics W hereas Bauman and A gamben do not touch directly upon the issues of genomic medicine and bioethics, R abinow and R ose, as long-standing observers of the biological and human sciences, specifically do. From the above quote it also emerges that they take the radical critique to be flawed, and that, as a consequence, the analytic potential for judgement and action inherent in the notions of biopower/

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biopolitics has not been adequately developed. R abinow and R ose therefore enter on the project of freeing the concepts of biopower and biopolitics from the grasp of radical critique. In the process of doing so, they discover a new sort of ethic emerging within the late modern production of knowledge in the biosciences. Probably for that reason, Rose’s last book carries the description of ‘sociology/ bioethics’ on the cover (R ose 2007). T he main part of the next section will deal with some of the arguments from this book. T he main problem with the radical critique, according to R abinow and R ose, is that it operates with too narrow and undifferentiated conceptions of power and knowledge. The indisputable fact of the Holocaust, or of other incidents of genocide, does not amount to a general account of the complex dynamics of power, sovereignty and subjectivity: power was always, also in ancient societies, highly dependent upon a number of contingent and contextual factors that simultaneously made it possible and kept it in check. Referring to the Foucauldian concept of ‘governmentality’, they show how the life sciences now enter into complex webs of relations constituted by pharmacological companies, patients’ groups, bioethicists, governmental bodies, ethics boards, medical doctors, scientists and venture capitalists, in which the state is but one, although significant, actor. In short, it becomes highly problematic to imagine how, within such highly complex constellations of actors, one agent should be capable of raising above all the others so as to gain sovereign power. C learing away such misconceptions, the way is open for us to conceive of new and emerging forms of life: A qualitative shift has occurred within the life sciences and the general production of knowledge through which more ethical forms of life emerge, say Rabinow and Rose. The molecularization of life is intimately linked with significant technological and scientific developments throughout the second half of the twentieth century. D uring this period biology adopted the language of information and it also became a constructive and synthetic enterprise, no longer simply describing and representing life but also modifying it and creating new forms of life (Rheinberger 1997). These developments, it is surmised in well-known F oucauldian language, opened up new spaces of possibilities and reorganized the relations between central actors such as states, patients, industry, science and public organizations, in which a new and more positive ‘will-to-health’ came to the fore. T he main site of this production is the body (zoe), which is now becoming the main locus for the work of the single individual. The body is simultaneously merging with the economy, establishing biopower as ‘bioeconomics’, in which the creation of surplus value from vitality enters as a central parameter for measuring the health of the population and the economy. T he molecularization of life is creating new subjectivities and new forms of self-governance connected to renewed versions of ourselves as bodily beings in which genetic diagnosis enters the lifeproject of the individual, in ways similar to non-prescription medicines, cosmetic surgery, tattoos, health insurance, exercise, private health care and vitamins (R ose 2001). H ere, then, enters the positive ethical shift within the biopolitical analysis, one which has its counterpart within the F oucauldian analysis itself: ‘F oucault

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also distanced himself from the view that such power over life is unambiguously nefarious. T his is also the turning point that leads F oucault to a fascination with ancient modes of subjectification and the possibilities of freedom’ (Rabinow and Rose 2006, 200). The shift referred to here was undertaken by Foucault during the passage from The History of Sexuality Vol. 1 to Vol 3, during which he went from analyzing the ways in which discourses of truth and sovereignty worked the lives of the populations, to analyses of the ways in which individuals work on themselves (through techniques of the self). C learly, the two are interconnected: ‘subjectification’, the creation of new forms of subjectivity, is the outcome of both: the individual deploys techniques of the self supplied by scientific, legal and governmental discourses, in the process also creating new forms of self and society that could not be predicted by any single discipline. A t the same time, it is not altogether clear how to strike the critical balance between the two, that is, between the critique of power and the ethical valuation of the creative powers of free individuals (R ouse 1994). R abinow and R ose undertake the project of transforming the ethical analysis of single individuals back into a biopolitical one. That is, through a number of works on new forms of governmentality and sociability, they attempt to demonstrate the political and ethical significance of the changes enabled through the molecular turn. This work, which has attracted significant attention within the social sciences (Gibbon and N ovas 2008; O ng and C ollier 2005), centres around the notions of ‘biosociality’ (R abinow 1996) and ‘biological citizenship’ (R ose 2005). In short: if it can be demonstrated that the F oucauldian analysis of disciplinary power could be coupled to processes of subjectification that feed back into the political and social regulation of genomics in positive and constructive ways, then this could possibly also help mediate between bioethics and biopolitics. T he notion of ‘biosociality’ was developed by R abinow during his studies of the Human Genome Project (Rabinow 1996). During that work he observed how the radically constructivist nature of molecular biology provided for the creation of nature modelled after cultural practice: ‘nature will be known and remade through technique and will finally become artificial, just as culture becomes natural’ (ibid.). T his also opened up for the ‘ethicalization’ of genetics. Borrowing from F oucault, Rose describes genes as an ‘ethical substance…that one works in relation to the self (genetic identity, reproduction, health) and in relation to others (siblings, kin, marriage, children). And this ethical work framed in terms of genetics intersects with, and becomes allied with, a more general style of work on the self in contemporary advanced liberal democracies that construes life as a project, framed in terms of the values of autonomy, self-actualization, prudence, responsibility, and choice’ (R ose 2007, 125). F ar from reducing the human being to its genetic make-up, genetics induces new ethical and social relations. These do not stop with the family: building on studies by C arlos N ovas, R ose goes on to argue that new types of patient communities are formed around common diagnoses, H untington’s disease serving as his prime example. R eferring to studies of on-line chat rooms for H untington’s patients, to HI V and AIDS activist groups and groups for people

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with bipolar disorders, R ose argues that a new form of ‘biological citizenship’ is emerging. N o longer the passive objects of medical authority these groups and individuals are actively re-working the creation of new knowledge, healthcare and the self. By actively entering upon alliances with pharmaceutical companies, and by engaging in, participating in and financing research, they also become co-producers of genetic knowledge and new forms of socializing, hence also of ‘genetic citizenship’ (H eath, R app and T aussig 2004). W e may let R ose himself draw the conclusions of these observations for the field of bioethics. Following up on a passage about bioethics as part of the machinery of governance, he turns to the more substantial side of the issue: T his other sense concerns the ethical considerations deemed relevant by participants – not just patients and their families, but also researchers, clinicians, regulators, and even those working in the world of commerce – in their actual conduct of themselves and their lives in relation to the dilemmas that they face and the judgements and decisions that they must make. We can learn much about this ethic from all the detailed ethnographies of biosocial communities that I have drawn on in previous chapters. T hese demonstrate the ways in which those who I have termed ‘biological citizens’ are having to reformulate their own answers to Kant’s famous three questions – What can I know? What must I do? W hat may I hope? – in the age of molecular biopolitics of life itself (R ose 2007, 257).

By that statement a synthesis of biopolitics and bioethics has nearly been reached. T he discussion now turns to the question of how to evaluate, not just this statement, but all of the biopolitical approaches here described. Summing Up the Arguments In the sections on bioethics and genomic medicine three related though different problems were singled out: first, it was noted how informed consent had come to be reinterpreted through a certain notion of autonomy, and how the vulnerable patient thereby was substituted for the rational decision-maker. When applied to the context of genetic choice, this had the effect of framing genetics as an enhancement of moral agency rather than a threat to such agency. T here is a description of how this ‘ambiguity of agency’ gets further accentuated as problems of time and scale in the post-genomic era. T hese arguments were next used to favour an expansion of bioethics towards biopolitical analyses. H owever, although the accounts given by the radical critique and the liberalist accounts certainly draw the attention towards many issues that should be of concern to bioethicists, it is not likely that they can contribute significantly to good solutions to the problems that have been identified.

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F irst, R abinow and R ose are probably right in their critique of the radical accounts. Critiques of biopower mounted on analyses of the Holocaust run the risk of themselves becoming totalizing and of losing sight of the many complexities, interdependencies and different practices through which genomic medicine is acted out. Even granted that they are correct about the H olocaust, they cannot without further ado be extrapolated from one context to the other. In a sense, these analyses almost exclude themselves by definition. If they are to serve their critical function, they cannot be caught up in a practice that ultimately serves to legitimate biopower. To keep their value and function they must remain outside of the practices they criticize. T he critique offered by A gamben and Bauman may seem extreme and obsolete, but the intrinsic dynamics of modernity carry with them new risks of disaster and so the project of radical critique should never be irrelevant to the concerns of bioethicists. H owever, something similar to these shortcomings may also, in the next resort, be directed at R abinow and R ose: in spite of empirical accounts of new forms of life, of biosociality and biological citizenship, the descriptions given are themselves not sufficiently grounded within the different practices that go to make up the post-genomic complex. T hey do not rely upon any articulated notion of action, agency or the internal norms of those practices, but rather take as their clue an emerging Zeitgeist: ‘something novel that is arising from the intertwining ways of thinking and acting in a range of practices – medical, legal, economic, political, ethical – while not being posited directly by any of them’ (R ose 2007, 80–81). T here is a strange leap in the analysis from the liberating dissociation from phenomena such as eugenics and racism to the affirmation of biopolitical action within ‘contemporary advanced liberal democracies’. How this move is undertaken is never made explicit, but it is suggested that it has its roots within an ambiguity within the Foucauldian analysis itself. As briefly described, Foucault passed from descriptions of the power of regulatory discourses to an ethics of the self. H e never really connected the two, however, and so an ambiguity remained between the critical and the ethical perspectives. R ose’s (and R abinow’s) accounts thrive on this ambiguity, but they do not overcome it. Instead, the potential of the ‘biological citizens’ for reinventing themselves in the face of new knowledge regimes gets extrapolated onto the biopolitical domain, the result being the effective covering up of the many problems brought abut by post-genomic biopower. In essence R ose commits much the same error as does S ydney Brenner (cf. earlier section): H e is projecting a future ethic, but he is also projecting the future on the basis of today’s legal and political order. H owever, as argued earlier, the possibility is real that if the social norms change, so will the legal and political orders. T his is possibly due to economical reasons: scarcity of resources within health care systems; the costliness of the new technologies and the need to include private risk capital as well as the clinical resources needed for implementing the new genomics; an increased number of professions and disciplines such as genetic counselling, bioinformatics, systems biology, proteomics, pharmacology, bioethicists and lawyers. Due to factors such as these it is likely that economic restrictions will

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impose themselves on the field of genomic medicine, thereby forcing new lines of exclusion and categorization, for instance between those with sufficient cultural and economical capital to engage critically with the new genetics, and those who do not have such resources. We already know that such differences play a role for the efficiency of genetic counselling (Saukko et al. 2007). C oupled to the new ethics of genetic responsibility, there are good chances of new legal norms arising in which the autonomous individual is made responsible for their own future health, and that these will also be related to institutions such as social service and insurance. It is strange that a scholar in the F oucauldian tradition does not place greater emphasis on these dynamic aspects of knowledge and power, but rather chooses to freeze the analysis in an idealized version of the present. S o, even though the notions of radical oppression entailed by A gamben and Bauman are rejected (or defered), we should not therefore commit the opposite error of assuming that no new forms of oppression and exclusion are made possible through genomic medicine. T hese may, however, be harder to see, as they will relate more to the use and abuse of information than to actual physical abuse. Concluding Remarks It is possible to draw some more general conclusions concerning the field of biopolitics as here described. The dynamics of knowledge and power entailed by F oucauldian and post-F oucauldian analyses enables a grasp of some of the wider dynamics within which bioethics operates. T his was seen both in the radical version, where some of the dangers of modern knowledge-based practices were highlighted, and it was seen in an emerging ethic described by the liberal version. However, there can be no talk of directly applying such insights to bioethics. Significantly, the notions of agency entailed by the Foucauldian framework, or (more to the point) the lack of such, renders it unsuitable for application to the practical field of bioethics. T his suggests that bioethicists, in addition to biopolitical analyses in the tradition from Foucault, should also look to political theory in the more traditional sense of the word. N otions of autonomy and informed consent should not (and will not) be abandoned in the face of regulatory problems; they should be expanded. H ence, one way of relating the problems discussed in this article to such theory formation would be to invoke the notion of the public sphere as the paradigm case of informed consent (H abermas 1989/1962). Public debate has, since the seventeenth century, been regarded as a form of ongoing evaluation and consent to processes of social development. T his is another way of saying that the transformation to genomic medicine is far from un-problematic, and that its scale and scope requires a much wider public debate than has been seen so far.

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References A gamben, G. (1998) Homo Sacer (S tanford, CA : S tanford U niversity Press). Baumann, Z. (1989) Modernity and the Holocaust (O xford: Polity Press). Beauchamp, T .L. and C hildress, J.F . (2001) Principles of Biomedical Ethics (Oxford, New York: Oxford University Press). Beecher, H . (1966) ‘Experimentation and human subjects’, N. Engl. J. Med., 274, 1354–1360. Brekke, O.A. and Sirnes, T. (2006) ‘Population biobanks: The ethical gravity of informed consent’, Biosocieties, 1, 385–398. Brenner, S. (2006) ‘Genomics and a scientifically responsible ethics’, BioSocieties, 1:1, 7–12. Burke, W. (2002) ‘Genetic testing’, N. Engl. J. Med., 347:23, 1867–1875. Busby, H. (2007) ‘Biobanks, bioethics and concepts of donated blood in the UK’, in R. De Wries, L. Turner, K. Orfali and C.H. Bosk (eds), The View from Here: Bioethics and the Social Sciences (Malden, Oxford, Carlton: Blackwell). Callahan, D. (1999) ‘The social sciences and the task of bioethics’, Daedalus, 128:4, 275–294. C layton, E.W . (2003) ‘Ethical, legal, and social implications of genomic medicine’, N. Engl. J. Med., 349, 562–569. Collins, F. and McKusick, V.A. (2001) ‘Implications of the human genome project for medical science’, JAMA, 285, 540–544. CONOR (2007) Questionnaire, N orwegian Institute of Public H ealth. D alsgaard, S . (2007) ‘“I do it for the chocolate”: A n anthropological study of blood donation in Denmark’, Distinktion, 14, 101–17. D e W ries, R . and S ubedi, J. (eds) (1998) Bioethics and Society: Constructing the Ethical Enterprise (Englewood C liffs: Prentice H all). De Wries, R., Turner, L., Orfali, K. and Bosk, C.H. (2007) The View from Here: Bioethics and the Social Sciences (Malden, Oxford, Carlton: Blackwell). Dixon-Woods, M., Ashcroft, R., Jackson, C.F., Tobin, M.D., Kivits, J., Burton, P.R. and S amani, N .J. (2007) ‘Beyond “misunderstanding”: W ritten information and decisions about taking part in a genetic epidemiology study’, Social Science and Medicine, 65, 2212–2222. Dworkin, R. (1977) Taking Rights Seriously (London: Duckworth). F lorence, M . (1994) ‘F oucault, M ichel, 1926–’, in G. Gutting (ed.), The Cambridge Companion to Foucault (C ambridge: C ambridge U niversity Press). F oucault, M . (1973) The Birth of the Clinic (London, New York: Routledge). F oucault, M . (1975) Discipline and Punish (London: Penguin). F oucault, M . (1978) The History of Sexuality, Vol. 1: The Will to Knowledge (London: Penguin). F oucault, M . (1980) Power/Knowledge (New York: Pantheon). F oucault, M . (1986) The History of Sexuality, Vol. 3: The Care of the Self (London: Penguin).

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Gibbon, S . and N ovas, C . (2008) Biosocialities, Genetics and the Social Sciences. Making Biologies and Identities (London and New York: Routledge). Godard, B., M arshall, J., Laberge, C . and Knoppers, B.M . (2004) ‘S trategies for consulting with the community: T he cases of four large-scale genetic databases’, Science and Engineering Ethics, 10:3, 457–477. Greely, H .T . (2001) ‘Informed consent and other ethical issues in human population genetics’, Annu. Rev. Genet., 35, 785–800. Guttmacher, A .E. and C ollins, F .S . (2003) ‘W ellcome to the genomic era’, N. Engl. J. Med., 349:10, 996–998. H abermas, J. (1989/1962) The Structural Transformation of the Public Sphere: An Inquiry into a Category of Burgeois Society (C ambridge, MA : MIT Press). H ansson, M .G., D illner, J., Bartram, C .R ., C arlson, J.A . and H elgesson, G. (2006) ‘Should donors be allowed to give broad consent to future biobank research?’, The Lancet Oncology, 7, 266–269. H eath, D ., R app, R . and T aussig, K.-S . (2004) ‘Genetic citizenship’, in D . N ugent and J. Vincent (eds), Companion to the Anthropology of Politics (O xford: Blackwell), 152–167. Hoeyer, G. (2003), ‘“Science is really needed – that’s all I know”: Informed consent and the non-verbal practices of collecting blood for genetic research in S weden’, New Genetics and Society, 22, 229–244. Hoeyer, K. (2006) ‘“Ethics wars”: Reflections on the antagonism between bioethicists and social science observers of biomedicine’, Human Studies, 29, 203–227. Hofmann, B. (2006) ‘Consent to biobank research: One size fits all?’, unpublished, S ection for M edical Ethics, U niversity of O slo. Jonas, H. (1969) ‘Philosophical reflections on experimenting with human subjects’, Daedulus’ Journal of the American Academy of Arts and Sciences, 98:2, 219– 237 reprinted (1970) in P.A . D reund (ed.) Ethical Aspects of Experimentation with Human Subject (New York: George Braziller). Jonsen, A .R . (1998) The Birth of Bioethics (New York, Oxford University Press). Knottnerus, J.A . (2003) ‘C ommunity Genetics and C ommunity M edicine’, Family Practice, 20, 601–606. Kristinsson, S. (2007) ‘Autonomy and informed consent: A mistaken association?’, Medicine, Health Care and Philosophy, 10:3, 253–264. Lesko, L.J. (2007) ‘Personalized medicine: Elusive dream or imminent reality?’, Clinical Pharmacology and Therapeutics, 81:6, 807–816. Maschke, K.J. (2006) ‘Alternative consent approaches for biobank research’, Lancet Oncology, 7:3, 193–194. M ueller, R .F . and Y oung, I.D . (1998) Emery’s Elements of Medical Genetics (London: H arcourt Publishers Ltd). N ational A cademy of S ciences, N . (1975) Genetic Screening: Programs, Principles, and Research (W ashington, D .C .: N ational A cademy Press). O ’N eill, O . (2001) ‘Informed consent and genetic information’, Studies in History and Philosophy of Science, 32:4, 689–704.

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O ’N eill, O . (2002) Autonomy and Trust in Bioethics (C ambridge: C ambridge U niversity Press). O ng, A . and C ollier, S .J. (eds) (2005) Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems (Oxford: Blackwell). R abinow, P. (1996) Artificiality and Enlightenment: From Sociobiology to Biosociality. Essays on the Anthropology of Reason (Princeton: Princeton U niversity Press). R abinow, P. and R ose, N . (2006) ‘Biopower today’, Biosocieties, 1:1, 195–217. R heinberger, H . (1997) Toward a History of Epistemic Things: Synthesizing Proteins in the Test Tube (S tanford, CA : S tanford U niversity Press). R ose, N . (2001) ‘T he politics of life itself’, Theory, Culture and Society, 18:6, 1–30. R ose, N . (2005) ‘Biological citizenship’, in A . O ng and S .J. C ollier (eds), Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems (Oxford: Blackwell), 439–463. R ose, N . (2007) The Politics of Life Itself. Biomedicine, Power, and Subjectivity in the Twenty-First Century (Princeton: Princeton U niversity Press). R ouse, J. (1994) ‘Power/Knowledge’, in G. Gutting (ed.), The Cambridge Companion to Foucault (C ambridge: C ambridge U niversity Press), 92–114. Saukko, P.M., Ellard, S., Richards, S.H., Shepherd, M.H. and Campbell, J.L. (2007) ‘Patients’ understanding of genetic susceptibility testing in mainstream medicine: qualitative study on thrombophilia’, BMC Health Services Research, 82: 7. Scully, J.L., Porz, R. and Rehmann-Sutter, C. (2007) ‘You don’t make genetic test decisions from one day to the next: U sing time to preserve moral space’, Bioethics, 21:4, 208–217. T auber, A . (2000) Confessions of a Medicine Man: An Essay in Popular Philosophy, (C ambridge, MA , London: MIT Press). T auber, A . (2005) Patient Autonomy and the Ethics of Responsibility (C ambridge, MA : MIT Press). T he President’s C omission (1983) Screening and Counselling for Genetic Conditions: A Report on the Ethical, Social, and Legal Implications of Genetic Screening, Counselling and Education Programs (U .S . Government Printing Office). Veatch, R .M . (1984) ‘A utonomy’s temporary triumph’, Hastings Center Report, 14, 38–40. Veatch, R .M . (1995) ‘A bandoning informed consent’, Hastings Center Report, 25:2, 5–12. W olpe, P. (1998) ‘T he triumph of autonomy in A merican bioethics’, in R . D e W ries and J. S ubedi (eds), Bioethics and Society: Constructing the Ethical Enterprise (Englewood C liffs: Prentice H all), 38–59. W ynne, B., C allon, M . and Goncalves, M .E. (2007) Report of the Expert Group on Science and Governance to the Science, Society and Economy Directorate, D irectorate-General for R esearch, European C ommission. EUR 22700.

C hapter 13

W hat’s W rong with Genetic Inequality? C laudio T amburrini

Gene technology is a promising research area. R ecent developments within this particular field of medicine give us reason to expect that, in a not so far ahead future, we will be able to treat seriously sick people and cure them from already declared pathological states or even to prevent disease. In theory, all existing protein levels in the body may be changed by using gene therapy. A s a matter of fact, several sick people have already been treated with genetic therapy with positive results and practically no negative side-effects. T he possible uses of the new genetics however are not limited to maintaining or restoring health in sick people. At present there is increasing scientific evidence that in a not so far ahead future the new medical technologies, particularly genetics, will most probably come to be used to improve different human capacities in healthy people as well. In our assessments of medical interventions, a distinction might be made between: (a) negative interventions, which are performed with the aim of curing or preventing a disease, or eliminating a handicap or disability; (b) positive interventions aiming at improving the functioning of a human organism within a natural variation; and (c) enhancements proper, that aim at taking an individual beyond normal functioning of a human organism. T o provide antibiotics to a person suffering from pneumonia in order to cure them from this disease would be a typically negative intervention. T o give human growth hormone to an unusually small child (merely) in order to increase this child’s length would be a positive intervention. T o reduce a person’s need of sleep to, say, two hours a day would be an example of enhancement proper. O bviously,  ��������������������������������������������������������������������������� In a paper presented at the Stockholm Bioethics Centre workshop within the Enhance-project on 5 M ay 2006 at O xford, H .J. H aisma stated that ‘U p to now, more than 3000 patients have received some form of gene therapy, with very little side effects. Patients suffering from different diseases, ranging from cancer to heart failure, were treated. R ecent clinical data show encouraging gene therapy results in three major diseases: patients with x-linked severe combined immunodeficiency disease [Cavazzana-Calvo, M. et al. 2005] and patients with haemophilia B [M anno et al. 2003]. In addition, angiogenic gene therapy with vectors expressing the human vascular endothelial growth factor for the treatment of coronary artery disease, showed improvement in angina complaints [R eilly et al. 2005]. T hese studies show that gene therapy is a safe treatment, capable of curing patients with, in some cases, life threatening diseases with no other treatment alternative available’.  ���������������������������������������������������������������������������������� T here are of course no clear boundaries between curative, restorative and clearly enhancing genetic interventions. O ccasionally we will have to deal with some hard cases

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the most interesting ethical challenges are posed by what are called ‘enhancements proper’, that is, improvements in people’s physical, cognitive or mood conditions beyond species normalcy. T he three types of enhancement usually discussed in the literature are: physical, cognitive and mood enhancements. Enhancing someone’s physical capacities might stand, for instance, for providing the individual with larger muscle mass or more endurance in the face of physical effort. Enhancing someone’s cognitive capacity on the other hand stands for increasing their IQ-level or providing them with a more effective memory. Finally, improving someone’s mood means making the subject feel happier, or adopting a more confident or more optimistic attitude at work or in life in general, and so on. T he notion of ‘enhancement’ however is in some sense misleading. U sually the term is associated with improving or bettering one’s life situation. R egarding negative medical interventions (type (a) above), it is difficult to deny that they directly render a better quality of life: health is no doubt a good condition, whatever normative stance is adopted regarding what it is that makes life valuable. S omething similar could be said regarding positive interventions (type (b) above), at least when they are directed to improving the way a human organism functions in order to preserve a healthy condition. But can enhancements proper (type (c) above) always be seen as improvements in life conditions? Reflection on this question leads to the realization that the answer will depend on the normative stance that is embraced. W ithin a perfectionistic ideal, for instance, developing human capacities (either physical, cognitive or mood related) will most probably be seen as betterments in the sense of realizing a more fulfilled life. Related to a different normative approach, however, the kind of enhancements usually discussed in relation to genetic interventions might or might not have this effect. S atisfying the desire of an individual for a better memory might count as an improvement for a preferentialist, while not necessarily for a hedonist. As is well known, to provide someone with a more effective capacity to recall past events and situations might actually become quite painful. S o, it remains to be seen whether the improvements in human capacities usually discussed in relation to genetic enhancements actually are conducive to a better human condition (happier, more fulfilled, more satisfied lives). Therefore, throughout this chapter the term ‘enhancement’ will be understood in a morally neutral way, semantically nearer to ‘increases’ than to ‘improvements’. T hus, in this context, getting enhanced denotes ‘getting more of a thing’ (for instance, some physical, cognitive or mood characteristic) rather than ‘getting better’. where it will be difficult to decide which one of the above mentioned categories they belong in. S uch cases will simply have to be decided on a case by case basis. T his circumstance however might not affect the viability of the system, as there will certainly be a number of cases in which the distinction might be made without difficulty.  ����������������������������������������������������������������������������� A particular difficulty is caused by so called mood enhancements. Even if we concurred in that, say, improving one’s oxygen uptake capacity or one’s short-term

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Genetic enhancement, particularly of the third kind described above (that is, enhancement beyond what is perceived or has hitherto been considered as normal for the human species) is seen by many critics as a serious threat to society. T he reasons for this reluctance are varied and many times grounded on a general, and often unsubstantiated, mistrust in technological solutions. H owever, there is a question that has been raised by many objectors and that, at least apparently, expresses a legitimate concern with genetic technology. M ost of the new therapeutic and enhancement techniques will probably be quite expensive. S o it has been asked whether all people in the future actually will have equal access to the beneficial effects of genetic technology in general and medical genetics in particular. A nd, if not, what are the consequences for the social body – as a matter of fact, for the whole future of humanity – of a practice in which available genetic enhancements are only accessible to the rich? In other words, how should equality be valued and does this have a direct bearing on how genetic enhancements should be regulated, or even whether they should be implemented at all. In this chapter the question is asked whether the fact that the worse-off groups in society might be hindered from enjoying the benefits of the new genetics is a good reason to oppose the development and utilization of the new techniques. In the first section, a (modified) Rawlsian Difference Principle that includes the benefits of the new genetic technologies among the social goods to be distributed in society is analyzed. T he view is that the healthcare inequality that most probably will follow from the adoption of genetic technology is hardly a conclusive reason to reject its implementation. R elated to this position, the objection is also made that, if not justly distributed, the new genetics might give rise to new social (genetically caused) castes. F ollowing this line of reasoning a particular egalitarian position (welfare egalitarianism) that might be formulated as an alternative to a R awlsian inspired distributive scheme is also discussed, and it is concluded that it cannot reasonably provide any powerful limitation to genetic enhancements. F ollowing on from that the new genetics in the light of some objections formulated memory does not per se amounts to an enhancement, things appear to be different regarding improvements in our mood. H ow could we possibly deny that ‘feeling better’ or ‘more satisfied’ actually represents an enhancement (betterment) of our life condition? Having as I do an inclination for hedonistic utilitarianism, I am disposed to accept this claim. T his notwithstanding, it has to be kept in mind that a preferentialist or a perfectionist might not agree with the normative judgment above. F or her, whether or not getting one’s mood enhanced through genetic intervention renders a better life will depend on whether the agent desired such a change or, alternatively, on whether it can be included among the objectively good things in life.  ��������������������������������������������������������� See, for instance, Mehlman, Maxwell and Botkin, Jeffrey. Access to the Genome: The Challenge to Equality. W ashington, DC : Georgetown U niversity Press, 1998. A lso the Nuffield Council on Bioethics report. Genetics and Human Behaviour: the Ethical Context. London: Nuffield Council on Bioethics, 2002 and Buchanan A, Brock D, Daniels N and Wikler, D. From Chance to Choice: Genetics and Justice. C ambridge: C ambridge U niversity Press, 2000.

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in consequentialist terms are scrutinized. In particular there is an attempt to try and ascertain whether inequalities in the genetic constitution of individuals might contribute to the erosion of social harmony and cause social tension and resentment. T he conclusion in this regard will be that the worries of those who are opposed to a widescale implementation of the new genetic technologies are probably exaggerated. F inally, in the last section, the conclusions arrived at so far are summed up. Genetic Technology Accessible to All? A considerable number of people fear that, as getting the necessary or desired genes either into somatic or germ cells will most probably be very expensive, only those who can afford it will be able to benefit from the new technologies. This might be expected to exacerbate current social and economic inequality, adding biological disadvantages to the already existing inequalities between the poor and the rich. C onsequently, it is hoped that genetic technology will be accessible to all as a necessary condition for its implementation. M. Mehlman and J. Botkin, for instance, believe that: … with the possible exception of slavery, [genetic technologies] represent the most profound challenge to cherished notions of social equality ever encountered. D ecisions over who will have access to what genetic technologies will likely determine the kind of society and political system that will prevail in the future.

T he practical consequences of this egalitarian position, however, have seldom been clearly spelled out. T he demand for genetic equality might for instance be seen (a) as an absolute requirement or (b) as a desirable, though not absolute, condition for the implementation of genetic modifications. In the first case, the failure to distribute genetic assets equally among the population will block using the new technologies. In the second case instead the new genetics might be implemented even when not equally distributed, provided necessary steps are taken towards a more equal distribution in the future. A further distinction to be made among the different egalitarian positions concerns the reasons why genetic assets should be distributed equally. A rough distinction could be drawn between authors who postulate genetic equality as (c) a means to securing equal opportunity for jobs and positions in society, and those who see genetic equality as instrumental to (d) equality of welfare (happiness, well-being) among people.  �������������������������������������������� Mehlman, Maxwell and Botkin, Jeffrey (1998) Access to the Genome: The Challenge to Equality (W ashington, DC : Georgetown U niversity Press), 6. (Quoted in F arrelly, C . ‘Genes and equality’, <www.jmedethics.com>.)

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In the following sections the feasibility of these four different positions will be discussed. Genetic Equality as an Absolute Requirement Although egalitarians are not always sufficiently clear regarding the strength of their demand, an author who seems to embrace the stronger position (a) above is W alter Glannon. In Genes and Future People, he explicitly states that genetic enhancements should be impermissible if they cannot be granted to all. In his view, although it might seem that there is nothing unfair and hence nothing morally objectionable about enhancements that made some people better off than others above a baseline of physical and mental needs, N evertheless, this could undermine our belief in the importance of the fundamental equality of all people, regardless of how well off they are in absolute terms. Equality is one of the social bases of self-respect, which is essential for social harmony and stability. A llowing inequalities in access to and possession of competitive goods at any level of functioning or welfare might erode this basis and the ideas of harmony and stability that rest on it. A lthough it would be difficult to measure, this type of social cost resulting from genetic enhancement could constitute another reason for prohibiting it.

T hus, according to this position, failing to distribute genetic assets equally among the population should be a sufficient reason to block the implementation of the new medical technologies. For this kind of egalitarianism equality trumps the eventual gains of the new genetics. However, it is difficult to grasp why a medical technique should not be used simply on the grounds that it cannot be offered to all. T o begin with, such a scenario, although perhaps realistic, is not even new. H istorically, the adoption of new medicines and medical techniques has often taken place in a socio-economic situation of inequality. A ntibiotics, to name an example, were not available to the poor when they were discovered. But after decades of expansion and development of medical and pharmacological techniques, together with the consolidation of the welfare state, antibiotics are now available to the majority of the world’s population, regional inequalities notwithstanding. By the same reasoning, genetic technology will most probably be available to the poor, although not for the contemporary poor. D isadvantaged groups, as well as developing countries, might not have access to the new technology at the moment of its introduction, and perhaps this will remain so for decades. But in the future, the use of medical genetics will probably reach the poor strata of society, who will then be able to enjoy the benefits of the new  ������������������� Glannon, W . (2001) Genes and Future People – Philosophical Issues in Human Genetics (W estview. Boulder, CO : W estview Press), 100.

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techniques. T hus, even if the terms in which this position is cast are accepted, the poor will not be sacrificed only for the benefit of the rich: future poor people will benefit as well. Seen from this perspective, the absolute requirement advanced above loses much of its intuitive appeal. N ormally, there are no objections to a practice that implies ignoring the current people’s interests to benefit the worst-off in the future. Short of making the new technologies available to all, such a radical egalitarian position implies that there would need to be a choice between either prohibiting the new genetic technology (as Glannon proposes), or waiting to use the new genetics until it can be offered to all social groups on equal terms. In the first case, the interests of current poor people would be honoured, but at the price of renouncing to benefit future poor and better-off people; in the second case, current better-off people would not benefit from the implementation of an already existing technique, if it was simply to honour a principle of distributive justice which is far from being embraced by all. N one of these positions seems defensible. There seems to be no strong enough reason to grant the contemporary poor a right to veto a development that will be positive for all at a later stage of social development. T he appeal to social harmony and stability referred to by Glannon cannot do the job either. A s he explicitly recognizes in the quotation above, short of provoking a situation of deep social disruption, these feared consequences are indeed very difficult to measure. The objection from social stability will be returned to later in this article. Genetic Equality as a Desirable Goal In line with the second interpretation (b) of the egalitarian position, Buchanan, Brock, Daniels and Wikler developed a Rawlsian approach including healthcare resources in the further distributive scheme of social commodities. T hey say: If society is ever in a position to ´distribute´, through genetic engineering or genetic pharmacology, characteristics stemming from genes that have been classified as ´natural` assets, it is not clear that redistributive principles permit inequalities.

Buchanan et al. judge this redistribution to be essential to secure individuals equality of opportunity to compete for offices and positions in society. In line with the R awlsian ideal of corrective justice, when this aim cannot be obtained  ��������������������������������������������������������������������������� A lthough they do not clearly state the strength of their requirement on redistribution of genetic assets, I interpret their position as one that would not block the initial implementation of the new medical techniques.  ����������������������������� In Buchanan A., Brock, D.W., et al. ������� (2000) From Choice to Chance – Genetics and Justice (C ambridge: C ambridge U niversity Press), 320.  ������������� Ibid. p. 312.

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(for instance, because of resource shortages or lack of medical knowledge), then society should compensate the individual endowed with deficient natural assets, in the same way as there are compensations for inequalities stemming from how social institutions work. F rom the way in which they have formulated their position, Buchanan et al. seem solely concerned with curative or restorative genetic interventions.10 T hus, their proposal cannot help to decide what to do in relation to genetic enhancements proper, which (it should be recalled) imply raising individuals’ condition beyond normal species functioning. S o, the question remains: should these kinds of enhancement be implemented, even when they cannot be provided to all? At least at first sight it is not obvious that the distributive model advanced by Buchanan et al. might be extended to cover enhancements proper. A s these genetic interventions go beyond normal species functioning, their probable effect would be disrupting equality of opportunities radically among individuals. N or could enhancements proper be dealt with either by means of compensation granted to those who do not get enhanced. Genetic technology is different in a very substantial way. Particularly when applied to germ-line cells, unequal access to the new technologies might provide social challenges of a magnitude never experienced before. A s enhanced personal traits will be inherited by genetically modified individuals’ off-spring, a new class of human being might develop with cognitive, emotional and physical characteristics clearly superior to those possessed by non-enhanced exemplars of the human species. A s a matter of fact, they could even be endowed with phenotypes and genotypes not shared with their genetically contemporary ‘ancestors’ with whom they might not be able to mate. T hus, the unequal implementation of the new genetic technologies might engender a new trans-human species living simultaneously with human exemplars of the old, unenhanced kind. Unlike differences in education or income level, or even genetically induced disabilities or diseases, such differences can hardly be compensated for. S o, regarding enhancements proper, the model advanced by Buchanan et al. is likely to collapse into the first position discussed above, as it most probably would recommend blocking the implementation of this kind of genetic intervention.11 T his present objection is troublesome enough at a domestic level. But it is even more difficult to handle in the international scene. An appropriate redistributive scheme might perhaps allow the poor in a particular society to have some access to genetic technology. This, however, might prove to be much more difficult to achieve when this kind of resource transfer has to be implemented between rich and poor countries. Given the present state of the world, genetic enhancement will most probably not become a real possibility in the developing world for a long 10 ����������������������������������������������������� F or a similar restriction, see also D aniels, N orman, Just Health Care, C ambridge University Press, first published in 1985. 11 ������������������������������������������������������������������������������������� T his question will be returned to in the next section where there is a discussion of a more specific objection to genetic inequality in terms of genetic castes which has been formulated by one of the proponents of this model.

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while. T he argument over unfairness in the distribution of genetic assets becomes therefore even more difficult to counteract when it is seen from an international perspective. W hile there might be good consequentialist reasons for accepting such a scenario (for instance increasing the absolute – as different from relative – general level of well being for all parties involved), this objection cannot be properly dealt with within an egalitarian framework of the genetic market. Genetic Equality as a Means to Jobs and Positions A s seen above, some egalitarians defend the view that genetic assets should be distributed equally among the population in order to secure equal access to career and job opportunities for all. It might however be asked why equal access to jobs and positions should be given such a central role in the distributive scheme of society. A ccording to Buchanan et al., for instance, equal opportunity is essential for individuals to choose and realize their own life projects and consolidate a feeling of self-respect. Dan Wikler, one of the proponents of the Rawlsian model discussed here, goes so far as to affirm that the transformations introduced in the genetic makeup of future generations will crystallize in new castes, that is, genetically consolidated social classes with little or no social mobility at all. O ne’s life chances would then be determined at birth by the circumstances of one’s family or origin. According to Wikler, even if the poor of the future might get some access to genetic enhancements, one or two generations’ time lag would be sufficient to allow the (now even genetically) better-off to solidify their privileged position and monopolize most of the skills and capacities required to be successful in the market, to have a meaningful life and to gain self-respect. Somehow it is presupposed in Wikler’s criticism that having a fair chance to compete for job positions and career possibilities is a necessary condition for achieving these two latter states.12 M aybe it is true that, psychologically, how people value others depends to a high degree on what career and job options are open to them. O ther people’s judgment no doubt has an affect on well being (or happiness, or welfare). A ccording to R awls, this is also one of the conditions upon which people’s self-respect (perhaps the most important primary good, according to R awls) rests. S een from this perspective, the case might be made that lacking the genetic capacities necessary for professional options might be negative for an individual’s self-respect, as they would perceive themselves (through others’ judgment) as genetically, not merely circumstantially, inferior in comparison to other members of society. T his objection, if true, would be highly relevant for the unequal distribution of genetic enhancements. But is it tenable? T here are strong reasons that suggest it is not. 12 ������������������������������������������������������������������������������������� This objection was raised by Dan Wikler to a first version of this article presented at the International A ssociation of Bioethics (IA B) S atellite C onference on H uman Enhancement at Beijing, on 5 A ugust 2006, within the 8th W orld C ongress of Bioethics.

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T o begin with, egalitarians’ account of how people relate to their life choices and circumstances is not nuanced enough. A ccess to genetic technology may in some cases be directly related to equal career opportunities, and this might in some sense also be related to one’s possibility of achieving well being and self-respect. Equal opportunity to achieve a reasonable level of well being will therefore probably demand corrective measures regarding some of the traits directly relevant for career opportunities, such as IQ-level, learning capacity, mathematical skills and even memory. But this corrective programme does not seem to be equally compelling regarding physical traits, others than those directly related to the preservation of health: they simply (no longer) are much relevant for individuals’ possibilities of living worthwhile lives in modern society. F urthermore, although equal career opportunities might be important for the possibility of having a meaningful life and strengthening one’s self-esteem, this circumstance should not be exaggerated. A s a matter of fact, there seems to be no factual support for the empirical claim advanced by R awlsian egalitarians in the sense that such feelings as well being and self-respect (to a certain degree? for the most part?) rest on individuals’ chances of competing for the most requested and best rewarded jobs and positions. R ather, what apparently lies at the basis of people’s well being is a feeling of satisfaction with the kind of (working, social, family, and so on) life they have, with no direct relation to the level of success they attain in professional life. In this regard, the egalitarian argument against an unequal distribution of genetic assets rests on a culturally (that is, W estern) and socially (that is, upper middle class) bias. Provided people do not suffer from scarcity and infirmity, they should not exaggerate the role played by job and positions, as well as other forms of material recognition, for individuals’ well being and self-respect. It is a fact that not all people value demanding jobs and bearing heavy professional responsibilities. T he way to happiness is indeed much more diversified than egalitarians seem to perceive. Perhaps the above answer does not pay sufficient attention to ‘how noxious bad jobs actually are’? A fter all, having a fair chance to compete for the best positions in society is an indivisible part of whatever it is that grounds people’s well being. O r so it has been argued.13 But what does it mean to say that a job is ‘bad’? This might be taken to stand for two different things: (1) jobs that cause direct physical or psychological suffering to those who perform them (like for instance working in the mining industry and the military, or engaging in prostitution),14 and (2) jobs whose content does not contribute to developing workers’ full human potential (like for instance… most jobs!). The objection above must reasonably be meant in the sense of (2). 13 ��������������������������������������������������������������������������������� T his objection was raised by M argaret Battin at the Beijing conference mentioned before. 14 ������������������������������������������������������������������������������ S ome radical feminists resent labelling prostitution as a job. H owever, as in some countries prostitutes are organized in unions and pay income taxes, the use of the terminology is felt to be justified.

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Nobody would seriously compare a simple and one-sided job with the kind of psychologically and physically destructive activities named in the first place. So understood, however, the present criticism becomes toothless. T o begin with, everyone is different. A s a matter of fact, many people today who actually are in the position of choosing otherwise prefer a calm professional life free from heavy demands and responsibilities. T hey do this because they are convinced such a choice is conducive to a happier, more meaningful existence. In that regard, even simpler jobs might be conducive to a good life, provided workers are reasonably paid and have enough free time to cultivate their further interests in voluntary association with others. R ather the objection to bad jobs should be seen as a warning that a policy of unrestricted genetic inequality might create a working market in which the genetically deprived are compelled to take directly destructive jobs like those of the first kind above. As a matter of fact, there seems to be some factual support for this warning. Miners, soldiers and people working in the sex industry seldom come from the economically and socially best situated classes in society. T hus, a certain re-distribution of genetic assets seems to be justified in order to avoid a situation in which the most genetically deprived strata of society are left without any other professional choice than engaging in self-destructive activities. In line with the egalitarian demand, this genetic re-distribution programme might be financed by charging the rich for enhancements proper (that is, for non-curative and nonrestorative genetic interventions). T he revenues of this paid-for healthcare system could then be used to finance genetic enhancements for the poor, both at a national and international level. But what in that case would justify this redistribution is increasing welfare (or, alternatively, neutralizing the negative welfare impact of directly destructive jobs), not any egalitarian endeavour whatsoever. A ccordingly, there should be an effort made to distribute genetic assets (more) equally among the population solely up to the point required to secure an optimal level of well being.15 N or does it seem necessary in the scenario depicted here to equalize all the genetic traits relevant for career opportunities either. T rade-offs appear as a real possibility in this context. One could for instance think of a situation in which some individuals lack certain cognitive traits other people possess, which might leave them outside competition for the best positions. But this might be outweighed by, say, mood enhancements performed on them as a compensation for the cognitive enhancements they were denied. S omeone might not qualify for a top job, but they could still feel happy with a lower-status one, thanks to mood enhancement! So, once again, short of falling into simple genetic libertarianism (which would leave the outcome to be decided by unrestricted market transactions), a policy might be designed that contributed to maximizing well being for all present and future parties. 15 ������������������������������������������������������������������������������ In that sense, the demand of charging the rich for enhancements proper is not strictly egalitarian, nor is it grounded on (any version of) the D ifference Principle either. R ather, this restricted distributive programme of genetic assets rests on pure and straight consequentialist considerations.

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S ometimes, this goal will require a more equal distribution of genetics assets. But sometimes an optimal level of well being could be actualized through other distributive schemes. Unlike the Difference Principle, such a policy would not rule out the unequal distribution of genetic assets on principled grounds. W hen equality is important, I submit, it is only because of its instrumental value for people’s well being. A nd even if sometimes equality of opportunity can have instrumental value towards this goal, it cannot reasonably be promoted as a necessary condition for the introduction of a particular genetic distributive scheme. As a matter of fact, the kind of ‘genetic trade-offs’ described above are not just the product of a philosopher’s mind but rather an accurate description of the diversity in life choices witnessed among people all around. S ome individuals choose less demanding career paths and simpler life styles. F urther, what is more to the point in the present discussion, many among them happily accept the kind of life they inherit from their family background or their social and economic circumstances. M aybe a certain degree of genetic mobility would still be desirable in the future. F or instance, we should see to it that it did not become altogether impossible to choose a different path in life than the one determined by one’s genetic makeup. A nd, as stated above, it is also desirable that genetically inferior individuals are not left without other professional options than the kind of physically and mentally destructive jobs depicted above. T his, however, is compatible with the existence of a considerable amount of genetic inequality, particularly regarding enhancements proper. Unlike curative and restorative medical interventions, genetic modifications beyond species normalcy have scarce, if any, relation to individuals’ level of happiness. Excepting improvements in people’s mood (which per definition render increased well-being), it is highly unlikely that, say, getting a ‘superhuman’ memory or increasing one’s oxygen intake capacity or muscle mass beyond normal levels will directly – if at all – contribute to making people happier. It is to be concluded therefore that egalitarians present a scenario that is just too dark, as it also is the supposition (suggested by Wikler) that the enhanced social classes of the future will invariably make use of their genetic superiority to exploit the genetic have-nots. T here is, no doubt, a need to secure the necessary democratic mechanisms to guarantee that the rights of the worse endowed will be respected in the future. But what is required to achieve that goal is to enter into social and political action, rather than refraining from applying the new discoveries of bio-technology. Welfare Egalitarianism Other authors might find this response to radical egalitarians insufficient and would object to the arguments in this chapter on empirical grounds. Ingmar Persson for instance believes that there are other alternatives to genetic inequality than simply postponing the implementation of the new genetics. W hat he envisages is a situation in which the S tate controls most of the more expensive medical care

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and distributes it according to other criteria than wealth, mainly need.16 A ccording to this position, what needs to be set out to maximize is not the opportunity to get equally good jobs or positions, but well being. S o, the welfare egalitarian position Persson would like to consider as an alternative to letting the rich buy genetic technology not available for the poor comprises two goals: (1) to maximize well being and (2) to equalize its distribution as much as possible. Persson also draws attention to the fact that the development of this sophisticated technology will take resources that might be used for finding cheaper treatment of diseases which kill millions in the Third World. This he finds questionable even if, once it is perfected, gene technology could be distributed in accordance with the goals of welfare egalitarianism. A nd, if the human race is for some reason placed in the dilemma depicted above (either let the rich have this technology or leave it unused), then it is not only questionable but patently false that this technology ought to be developed. O r so Persson has argued. Against this line of argumentation it could be stated that the kind of enhancements addressed in this chapter are ‘enhancements proper’, that is genetically induced improvements of the physical constitution beyond what is (has been) normal for the species. S een from this perspective, the approach of ‘giving to each one according to her need’ does not seem totally appropriated to deal with these kinds of enhancement, as most of them cannot reasonably be seen as a necessary condition for living a life that is worth living. F urthermore, regarding ‘welfare egalitarianism’, the original claim that in order to be able to distribute according to such a framework the new technologies would have to be implemented, is, of course, a factual claim. A s such, it can only be contested on factual grounds. H owever, it is hardly the case that public funds alone will suffice for financing the scientific work that is required for the new genetics to develop fully. A s a factual claim, this seems to be indisputable. If it is decided not to let private actors invest in – and then sell – the new technologies, thus leaving them at their first stage of development, will be contributing to the actualization of welfare losses, both for present and future rich people but, more important, for future have-nots as well. T he choice stands therefore between creating and distributing a certain amount of welfare equally or creating a larger amount of welfare in which all parties involved will be better off than in the first scenario, although they do not get equally as much of it.17 Persson has not put forward an argument in support of choosing the former rather than the latter. H is welfare egalitarianism remains therefore unsubstantiated. 16 ����������������������������������������������������������������������� Persson’s critical comments were delivered at the Stockholm Workshop – ‘Enhancing Physical C apacities: Ethics, R egulation and European Policy’, organized by Stockholm Bioethics Centre at Stockholm University on 29/30 March 2007, within the framework of the Enhance-project. 17 ������������������������������������������������������������������������������� W ith the exception, of course, of the contemporary poor who will not get their situation improved. H owever, it will not be worsened in absolute terms either, as they obviously cannot get genetically enhanced if it is decided not to develop the new technologies.

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A s a matter of fact, is not only that welfare egalitarianism has not been properly substantiated; it suffers also from some fundamental flaws that render it inappropriate as a distributive justice ideal. W elfare egalitarians want well being to be equally distributed among people. T his is obviously compatible with huge inequalities in resource allocation and in job and careers opportunities. It should not be forgotten after all that life projects, plans, and so on, vary widely among individuals, and that whatever social good (in R awls’s sense) might be required to actualize a particular person’s goal might turn out to be totally superfluous in actualizing some other individual’s life plans. F urthermore, what is even more relevant to this discussion, welfare egalitarianism does not presuppose an equal distribution of genetic assets at all. U nless of course welfare egalitarians would argue that not having the same (equally valuable?) genetic assets than others in society necessarily and directly affects one’s well being negatively. But how could that claim be substantiated? Perhaps R awlsians can do it by postulating the instrumental value of equality of opportunities for the achievement of one life’s goals (which in its turn might be thought of as improving one’s well being). But this is exactly what welfare egalitarians try to avoid! So there only seem to be the initial alternatives on offer: either a R awlsian inspired healthcare egalitarianism such as Buchanan et al.’s or a consequentialist account instead. F urther, another reason to criticize welfare egalitarianism rests on the fact that it seems irrational to keep on investing resources in people who repeatedly fail to transform resource allocations into well being. S uppose for instance that some people (say, the severely disabled) are far worse off than others? T hrough no fault of their own, these people are also extremely poor transformers of resources into well being. A society based on sustaining equality of welfare for all as its first (unique?) priority would be compelled to continually transfer resources to this group, no matter how large the social losses of this policy might be. S uch a policy might even oblige us to severely decrease the well being of the better off simply to achieve a tiny increase in the well being of one single individual within the group of the have-nots! F inally, regarding Persson’s last objection on alternative cures for T hird W orld population’s afflictions, the issue is not whether to develop the new genetics or use those resources for other social or medical laudable goals. T his chapter began with the explicit assumption that if a certain technique is available, it will be both developed and applied. T his is also an empirical claim. H owever, given how the history of humanity has evolved so far, the burden of proof should be put on those who, according to Persson, believe that it is possible to stop developing an already available, and quite promising, technique such as genetics. Genetic Inequality and Broad Consequentialism It was stated in the argument above that, as future poor people also will be included among the beneficiaries of a wide scale application of genetic technologies, the contemporary poor should not be given a right to veto that development.

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O therwise, not only they, but also their off-spring in the future, will remain unenhanced. T o this it might be added that although the poor of the future will be enhanced in comparison to today’s have-nots, they will not get enough benefits from the introduction of the new techniques. Even when enhanced, they will in relative terms still be genetically inferior to the rich, endowed with better skills and capacities. H ow serious is this objection? T o be sure, this genetic inferiority cannot constitute a violation of a right supposedly held by the poor to (even better) genetic endowments. T here should be an awareness that, if we chose not to implement the new genetic technologies, the have-nots of the future would not even be born. T his is a direct consequence of the influence of both technical and economic development on society’s reproductive habits.18 T he inappropriateness of honouring such a right is made still more evident when reflecting on the fact that those future (poor) people would be in a better position (among other things, more enhanced) than not only the contemporary poor, but probably than present rich people as well. Taken together, these two circumstances indicate that by introducing genetics on a wide scale now, no one will be negatively affected in the future. By looking for some grounds upon which to reject the new genetics, it is essential to resort to other reasons than right-based arguments. N or should there be an objection to such a development relying on impersonal utilitarian considerations either. Even if the normative importance of taking into consideration not only actual (that is, present and future) but also possible people is underlined,19 the sum total of happiness enjoyed by future generations (at least within a relatively foreseeable future) would be lowered if there is an attempt to secure access to the new genetics for all before applying it on a large scale. S uch a choice will result in a world where nobody (either haves or have-nots) would get enhanced, which has to be ranked against an alternative world in which a particular segment of society (the rich) gets many, and other segments, some genetic enhancements. S o, if the prospect of distributing genetic assets on an unequal basis can be dismissed at all, it seems as though it will be necessary to lean on general consequentialist arguments. C ould genetic inequality be objected to on the grounds of the broader consequences for society which might be expected to follow from it? A s seen at the beginning of this chapter, W alter Glannon fears that genetic inequality might erode the idea of social harmony and stability. T hus, the prospect that genetic inequality might contribute to create social tension and resentment among different groups in society might turn the balance against the 18 ������������������������������������������������������������������� This point has been convincingly argued for by Derek Parfit in his Reasons and Persons, particularly in Part 3 of the book, in which the issue of personal identity is discussed. 19 ��������������������������������������������������������� The terminology adopted here is used by Derek Parfait in Reasons and Persons, when he distinguishes between actual people (which include both existing individuals and those who will exist in the future) and possible people (that is, all those who might have existed in the future but who will actually not exist, given the choices that are now made).

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new technologies, no matter how beneficial for each of the individuals enhanced they might be. C an genetic inequality be objected to on these grounds? The Argument from Social Tension A further attack on the above position might be launched in the following terms: might not the unequal distribution of the benefits rendered by the new genetics cause social tension? And, even if future poor people also are benefited by the application of the new genetic techniques, will they not still feel resentment on the grounds of their genetic inferiority compared to the rich? If either of these two negative social scenarios takes place, the prospective advantages of the new genetics in terms of alleviating suffering or enhancing social capacities might be annulled by the negative consequences of genetic inequality. S o perhaps it would be better to be cautious and wait to use the new techniques once it is guaranteed they are available to all. O r so the egalitarian objection, now recast in consequentialist terms, be reformulated. Concerning the first aspect of this objection, it is not easy to see why the poor would revolt on the grounds that a new benefit is being denied to them. The history of social revolutions suggests that people are prone to rise when they are submitted to further deprivations, implying that they lose what they possessed before. But it would be difficult to find an example of a social convulsion caused by the fact that the disadvantaged groups do not get access to a new commodity previously unknown to them. This observation seems to apply in particular to the new genetics, which cannot be expected to be fully implemented at once, but instead successively introduced into the healthcare system during a long period of time. Such a circumstance might reduce the eventual social conflictive potential that usually follows from an unfair distribution of a commodity. But what about the have-nots of the future? T hey will in fact witness the full blooming of the new genetics, and will therefore be in a position to grasp the magnitude of the deprivation they are made victims of. Will that not be a sufficient reason to feel resentment towards the rich and a whole social order that sanctions privileges for a part of the population simply on the grounds that they can afford them? It is of course very difficult to predict how future generations will react to inequalities in the distribution of goods. T he only available guidance in that regard is what current society shows. This is obviously not firm ground to stand on. But, given the circumstances, it is the best guidance available. A nd what such a comparison suggests is that the fear for social tension in an unfairly enhanced world is probably exaggerated. In contemporary developed societies, the worstand the better-off live together without serious social conflicts taking place. Leftist interpretations of this state of political harmony often refer to the oppressed people’s false consciousness, in the sense that they have incorporated the wrongful belief (induced by the dominant classes) that the present social order is the best

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possible one. H owever, a much simpler, and apparently more tenable, interpretation would be to say that, as even the lower classes in developed countries benefit from the unequal distribution of world resources between rich and poor countries, they do not feel they have any reason to revolt. If this is so, then the prospect that the (genetically) worst-off in the future will rise to overthrow ‘the tyranny of the genetically superior’ seems rather unrealistic, at least as long as they also are benefited by the new techniques. After all, if they did rise, they might risk losing much more than just their chains. Starting All Over Again? This chapter cannot be concluded without making some general comments on the socio-political framework presupposed by a policy that allowed for unequal access to the new genetics. It might for instance be asked whether the new genetic inequality would imply that the worse-off needed to start fighting for their rights, in the same way that their ancestors fought for privileges that were only enjoyed by the best situated classes in society. W ould that be starting all over again? In a certain sense, this is the scenario that could be visualized once the new genetics is applied on a wide scale. S ocial processes appear to repeat themselves, though not in a cyclical, identical manner. In another sense, however, it might be said that there is no need to start all over again after all. The fight for equal genetic distribution in the future would be carried out against the background of centuries of cultural openness, social mobility and political democracy. T herefore, and contrary to what critics fear, this time might be easier to move on to a situation of relative equality than before, for instance when the industrial and technological revolutions took place. D oes this mean that, if possible, it would be preferable to have a world in which genetic assets are equally distributed among the population to a world such as the one that has been depicted (and defended) in this chapter? W ell, that depends on the overall consequences for all the involved parties, present and future. W hat has hopefully been substantiated is the view that, at the current historical crossroads, the implementation of the new genetics should not be delayed (not even in the sense of enhancements proper defined at the beginning of this chapter) simply on grounds that those benefits cannot be (more) equally distributed among the present day population. If that was done, there would be a risk of considerable welfare losses. Conclusions H umans have always striven to improve their physical condition. In the past this was done by following dietary prescriptions or performing physical training. M ore recently, the possibility arose of achieving physical improvements by

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resorting to different drugs and surgical interventions, as the flourishing of the pharmaceutical industry and cosmetic surgery bear witness to. In the wake of new medical technologies, there is now a prospect of attaining the same results, or probably even better, in this eternal quest for improvement by means of genetic enhancement. In this chapter, it has been argued that a traditional objection to such a development, namely, that it adds an unequal distribution of genetic assets to already existing socio-economic inequalities, is not strong enough to block the implementation of the new techniques. U sually, there is approval for policies that imply putting reasonable burdens upon present generations in order to benefit future people. Particularly, this seems ethically recommendable when the poor are among those who will be benefited in the future. This applies, it has been argued, to the implementation of the new genetics. A nd to the extent that inequalities in genetic assets might affect the general level of well being in society, a corrective policy could be implemented consisting of charging the rich for enhancements proper (neither curative nor restorative) and using those revenues to give the poor (both at a national and international level) a better chance to live meaningful and happy lives. In this regard, however, it has been emphasized that there should be no exaggeration of the role played by job and positions, as well as other forms of material recognition, for individuals’ well being and self-respect. It is an unquestionable fact that not all people value demanding jobs and bearing heavy professional responsibilities. T he way to happiness, it has been stressed, is multifaceted. A mong other things, this means that eventual re-distributive measures, if necessary at all, should be motivated by a consequentialist striving to maximize general well being, not by any egalitarian endeavour to equalize individuals’ positions, not even well being, in society. T his, it is concluded, is the main reason why no devastating objection to genetic technology can be formulated on distributive grounds. Acknowledgment I would like to thank both Dan Wikler for commenting on a first draft of this chapter at the International Bioethics A ssociation (IA B) S atellite C onference on H uman Enhancement at Beijing, on 5 A ugust 2006, within the 8th W orld C ongress of Bioethics, as well as Ingmar Persson for his comments at the Stockholm Workshop – ‘Enhancing Physical Capacities: Ethics, Regulation and European Policy’, organized by Stockholm Bioethics Centre at Stockholm University on 29/30 March 2007, within the framework of the European Enhance Project. I have benefited enormously from their criticism, as well as from the comments of other participants at both conferences.

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References Buchanan, A., Brock, D.W., Daniels, N. and Wikler, D. ������� (2001) From Choice to Chance: Genetics and Justice (C ambridge: C ambridge U niversity Press). Cavazzana-Calvo, M. (2002) ‘Sustained correction of X-linked combined immunodeficiency by ex vivo gene therapy’, N.Eng.J.Med, 346:16, 1185– 1193. D aniels, N . (1985) Just Health Care (C ambridge: C ambridge U niversity Press). F arrelly, C . (2004) ‘Genes and equality’, Journal of Medical Ethics, 30, 587–592. <www.jmedethics.com>. Glannon, W . (2001) Genes and Future People: Philosophical Issues in Human Genetics (W estview. Boulder, CO : W estview Press). H aisma, H .J. and de H on, O . (2006) ���������������������� ‘Gene doping’, International Journal of Sports Medicine, 27, 257–266. Kay, M .A ., M anno, C .S ., R agni, M .V., Larson, P.J., C outo, L.B., M cC lelland, A ., Glader, B., C hew, A .J., T ai, S .J., H erzog, R .W ., A rruda, V., Johnson, F ., Scallan, C., Skarsgard, E., Flake, A.W. and High, K.A. (2000) ‘Evidence for gene transfer and expression of factor IX in haemophilia B patients treated with an AA V vector’, Nature Genetics, 24, 257–261. Mehlman, M. and Botkin, J. (1998) Access to the Genome: The Challenge to Equality (W ashington, D .C .: Georgetown U niversity Press). Parfit, D. (1984) Reasons and Persons (O xford: C larendon Press). R awls, J. (1971) A Theory of Justice (C ambridge, MA : H arvard U niversity Press). R eilly, J.P., Grise, M .A ., F ortuin, F .D ., Vale, P.R ., S chaer, G.L., Lopez, J., Van C amp, J.R ., H enry, T ., R ichenbacher, W .E., Losordo, D .W ., S chatz, R .A . and Isner, J.M . ������������������������������������������������������������������� (2005) ‘Long-term (2-year) clinical events following transthoracic intramyocardial gene transfer of VEGF -2 in no-option patients’, Journal of Interventional Cardiology, 18:1, 27–31.

C hapter 14

Public and Private Interests in the Genomic Era: A Pluralist A pproach M argit S utrop and Kadri S imm

Introduction T he history of traditional medical ethics, and of bioethics more recently, demonstrates how different values have been upheld at different times – how ethical frameworks have developed, how certain arguments have risen to prominence and others fallen into disrepute. W hile the present chapter pertains also to the value debates in bioethics more generally, a more specific focus shall lie in human genetics. In relation to the advancement of human genetics and its various applications, it has recently become commonplace to argue that the individual-centred framework should be replaced or at least complemented by one where more collective values and public interests are represented. Principles of informed consent and privacy can seriously hamper medical research that aims to further the common good – for example restrictions requiring new informed consent on the re-use of biological samples and data within biobanks severely limit research. Thus, while technologies to gather and analyze information have rapidly evolved, the strict regulations protecting individual interests have obstructed the use of that information (for example, epidemiological research is more difficult since without a subject’s informed consent it is impossible to gather statistical data). In addition to these more instrumental arguments about the need for effective exploitation of genetic data, there are also more substantial reasons presented for re-thinking ethical frameworks in this field. Genetics has demonstrated our profound connectedness to our siblings, parents, other humans and even animals, raising questions about the very possibility of drawing a line between what is mine and what is the other’s. This points to the relevance of values like solidarity,  ������������������������������������������������������������������������������������ By traditional medical ethics it is meant a set of principles and values of W estern medicine, derived from various historical sources, from the oath of H ippocrates to the latest declarations of the W orld M edical A ssociation.  ��������������������������������������������������������������������������� T he expressions of private, personal and individual interests will be used interchangeably, unless otherwise specified.  ������������������������������������������������������������������������������������ S ee ‘Personal data for public good: using health information in medical research. A R eport from the A cademy of M edical S ciences’, 2006, p. 17 ff.

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responsibility and global justice in genetic research. S uch communitarian values might seem more suitable to act as a guide when dealing with the serious challenges of genetic testing and screening, gene therapies, biobanks and pharmacogenetics (Chadwick and Wilson 2004) . In the present article the focus will be on the examples of informed consent, confidentiality and the sharing of data as exemplary concepts within these shifting ethical frameworks. O f course, nobody is arguing for the abandonment of individual rights in research, but perhaps these should not be viewed as absolutes and a balance should be found between the principles of autonomy and privacy, on the one hand, and the risks and benefits of genetic research, on the other. If there is a clear need to undertake research for the public good, rather than for individual benefit, it may be decided that individual autonomy has only relative importance. T oo much focus on privacy could lessen people’s motivation to participate in research. S everal authors (Knoppers 2000, Chadwick and Berg 2001, Knoppers and Chadwick 2005) have insisted on the need to develop new ethical frameworks focusing on values like reciprocity, solidarity and universality, that reflect better the need to ‘encourage, not prevent, civic participation for the public welfare’ (Knoppers 2000). O thers (Goldworth 1999; Takala 2004) claim that since the right to individual autonomy is so important for both the individual and the community, one should not sacrifice individual autonomy for the well being of others, as is often the case in utilitarian decision making and generally with appeals to the common good. T he claim here is that there is no need to set liberal and communitarian frameworks in opposition to each other. First, this is simply unhelpful as it ultimately turns the debate into an argument about ideologies. S econd, it is also a restricted view raising concerns that the replacement of one framework with another could, for example, leave individual rights unprotected, or allow for potential misuse of the public interest argument. T his is not an either/or issue. Public interest is not by default in conflict with private interests and these can often overlap – in fact, one might reasonably have a private interest in the common interest being respected. A s people have personal interests as individuals and as members of a community, an appropriate balance between individual and public interests must be maintained. Often so-called public-private conflicts of interest could be reconceptualized as simply conflicts between two personal interests (for example, a personal interest in protection of confidentiality, on the one hand, and a personal interest in promotion of health and public safety, on the other, and so on). T hird, the traditional liberalcommunitarian watershed should be viewed in a pluralist setting. Instead of choosing  �������������������������������������������������������������������������������������� In this chapter the highly important problem of the definition of the public interest is largely set aside.����������������������������������������������������������������������� T he public interest argument is often used when overriding individual interests need to be justified. But who defines what is in the public interest? The chapter refers to R ichard E. A shcroft’s (2004) analysis of the concept of ‘public interest’ that distinguishes between six variants of public interest justifications and points to the politically contestable nature of the concept. ����������������������������������������������������������������� T here is an attempt to proceed with examples that are relatively uncontroversial in this regard.

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between ethical theories, frameworks or ideologies, it is important to notice that the problem is caused by the fact that there exist several key objective values (for example, privacy, autonomy, solidarity, reciprocity, benevolence) that cannot be respected simultaneously. It is believed that the values which are cared about are plural and contextual. Value conflicts are frequent mostly because there is a desire to realize incompatible goals and incommensurable values. S ince there is no one highest value, value conflicts cannot be solved by authoritatively ranking all other values in relation to the overriding value. In a pluralist approach rankings of values are reasonable only in particular situations because they depend on both facts of reality as well as on the traditions upheld and individual conceptions of a good life. Liberal Individualism as the Medico-ethical Framework Generally, medical ethics, and more recently bioethics, have in the W est largely been guided by values of liberal individualism, thus stressing every person’s voluntary decision-making capacity as the supreme value in research and medical practice. While several values like beneficence and non-maleficence have characterized medicine and medical research for hundreds of years, there are some values that were introduced much later. F or example, the concept of autonomy and respect for the patient’s privacy and the inviolability of their informed consent are much more recent phenomena and were only codified after the Second World War to denounce the practices of N azi medicine. If eugenics was ‘an applied science that seeks to maintain or to improve the genetic potentialities of the human species’ (A llen 1972), then post-war genetics was keen to substitute the collective ‘species’ with the more respectable authority of the ‘individual’. T he problem with eugenics seemed to lie in the fact that it harnessed a scientific discipline before the cart of collective socio-economic goals (involving decisions from abortion to immigration). In order to avoid the consequent injustice done to the many individuals in the name of social progress, the new genetics was proclaimed to always be in the service of individual choices. A fter the S econd W orld W ar, then, there was a need to disentangle genetics and medicine more generally from the oppressive history of eugenics and to disassociate the rhetoric and practices of the eugenic movement from the ‘brave new individualism’ of genetics. The linguistic skin-shedding illustrated by the renaming of certain scientific journals (for example, in 1954 Annals of Eugenics became Annals of Human Genetics; in 1969 the Eugenics Quarterly became the Journal of Social Biology (Proctor 1992, 6)) was a sign that certain labels had become unsavoury and yet these pointed to an underlying continuation of a certain academic discipline. It is the core notion of the potentiality of better health (and arguably consequently of better life) through genes/gene manipulation that links eugenics with genetics. It is important to decide whether such a stand is morally acceptable because, if it is, then the lesson is to be learned from the application of this idea to the society and not from the very basic eugenic idea itself.

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The relatively novel interdisciplinary field of bioethics thus promised to pay the highest respect to the autonomy, privacy and equality of each person. R elying on the post-war principles of medical ethics outlined in various international declarations, it was argued that respect towards individual interests and choices would be the key in never allowing the social interests or the paternalistic impulses of the medical community to override individual interests in medicine. The first formulation of informed consent can be found in the Nuremberg Code, where the first sentence claims that in human experimentation ‘the voluntary consent of the human subject is absolutely essential’(1947). Informed consent is based on the Kantian ethical principle that protects human dignity and always requires the treatment of each individual as an end in itself and never merely as a means. C onsent is seen as an expression of individual autonomy; it protects selfgovernance based on adequate understanding and information. T he N uremberg C ode was followed in 1954 by the W orld M edical A ssociation’s Resolution on Human Experimentation, and then by the Helsinki Declaration in 1964. In contrast with the N uremberg C ode, the resolution also allowed for proxy consent in the case of children and patients mentally or physically unable to give consent, and differentiated between therapeutic and non-therapeutic research. Informed Consent in the Genetic Age: A Communitarian Turn in Bioethics T he developments in genetics and related disciplines during the last decades of the twentieth century increasingly called into question the applicability or rather the sufficiency of the individual-centred value discourse as the sole ethical framework of guidance in these areas. A s genetic research moved from M endelian genetics to sequence maps to the study of natural human genetic variation at the level of genome, it demonstrated our relatedness across families, communities and populations. M any individual-centred norms and principles simply seemed not to be very useful or even applicable in dissecting and governing developments in (human) genetics. F or example, genetic information is by nature shared among relatives, thus raising doubts about the traditional applicability of concepts like ownership and privacy. A potential for conflict with the conceptual building blocks of traditional medical ethics – notions like autonomy and privacy – clearly arises. Delineating ‘self’ from ‘other’, ‘my’ interests, risks and rights neatly from ‘yours’ might well become an insoluble exercise. Genetic testing can create conflicts between privacy and confidentiality and the well being of others since a person’s genetic disposition may indicate that their relatives may also be similarly affected (Goldworth 1999).   The Helsinki Declaration has been updated five times since its first version was accepted by the WMA in 1964. T he latest version is from 2000, but some paragraphs were also clarified in 2002 and 2004. In 2007, a new revision was undertaken that should result in a new version during 2008. T he full text is available from .

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Besides demonstrating familial ties, genes are also very much shared among local populations, ethnicities and ultimately humans as such. Genetic databases, especially large population-based ones (D eC ode in Iceland, the Estonian Genome Project Foundation, the UK Biobank, Uman Genomics in Sweden, the Singapore Tissue Network, the Public Population Project in Genomics in Canada), also pose new challenges to the traditional medical ethics framework centred on the individual and their informed consent. Genetic databases are nothing new in themselves – collections of biological samples have existed in a number of countries for many decades already – but knowledge of genetics allows scientists to research these biobanks differently and to derive conclusions that might have diverse consequences for those whose genetic information has been included. F or example, much has been written about the potential of genetic information to create novel ethical, legal, economic (insurance-related) and social dilemmas (C ambon-T homsen et al. 2007; A ustin et al. 2003a, 2003b; H irtzlin, Isabelle et al. 2003; S imm 2005; S imm 2007a; S imm 2007b; S utrop 2004a; S utrop 2004b; S utrop 2007). Because genetic information is shared, such consequences are often not individual but familial, or even communal. Participation in research databases also often means that the traditional individual informed consent process might be burdensome or even impossible to follow within each separate research project, as the very rationale of the biobank is to provide means for multiple distinct projects (Árnason 2004; Kaye 2007, O ’N eill 2002, 2003; N õmper 2005). C urrently there is growing support for broad consent (also described as open, generic, or blanket consent) to be used for population genetic databases. T wo main arguments have been used to justify the use of broad consent rather than informed consent. T he first argument points to the fact that it is impossible to obtain informed consent as at the time of collection one does not know what kind of research will be done on the samples. The second argument stresses that there is a public interest in keeping the samples for an unlimited time and using them for different research projects. H owever, the debate continues as to whether broad consent meets conventional requirements for informed consent (competence, disclosure, understanding, voluntariness, consent) (Kaye 2004, 2007; O ’N eill, 2001, 2002, 2003; T horgeirsdóttir 2004), what the moral status of broad consent is (Kristinsson 2004), and which form broad consent should take. O’Neill (2004) has argued that although participants cannot give informed consent in the case of large-scale database research, there need to be technical, procedural, and supervisory mechanisms   A number of different definitions of genetic databases exist. Since the database projects vary, different terms are also used. Some authors speak about genomic or genetic databases, others about gene banks or biobanks. Here, the term used is ‘genetic database’ as defined by the HUGO Ethics Committee, designating ‘a collection of data arranged in a systematic way so as to be searchable. Genomic data include inter alia, sequences, mutations, alleles, polymorphic haplotypes, SNP’s, and polymorphisms, The work associated with a database includes collecting, annoting, curating, storing, validating and preparing specific sets for transmission’ (HU GO 2002).

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to maintain the security of the data and public confidence in population genetic databases. S utrop has shown (2007) that authentic trust is especially important in the context of population-based human genetic databases; this includes an understanding that the public be aware of not only the promises and potential benefits of research but also of the potential hazards and risks. Árnason (2004) has argued that with biobanks one should still give ‘explicit, written authorization’ which would respect the autonomy of patients. C onversely, N õmper (2005, 2007) claims that ‘open consent’ is sufficient for participation in genetic databases. Feminist and communitarian theories de-emphasize the importance of individual autonomy as the central criterion for valid consent and instead suggest a community-based model which takes into account the individuals’ ways of existence and the social contexts in which people make value decisions (Lipworth et al. 2006). A similar question, as to whether informed consent is deemed mandatory for the handing over of data to the population-based databases, has recently been raised in the context of the creation of databases of electronic health records. A s with the creation of the highly controversial H ealth S ector D atabase in Iceland in 1998, several countries (Denmark, the UK, Estonia) are planning to collect medical data without the explicit informed consent of patients. Electronic health records databases will collect and hold electronic health records about citizens in a national computer system. It should improve the quality of care and efficiency and reduce paperwork, as all necessary medical data, often located in various doctors’ offices and hospitals across the country or even countries, would be accessible at all times. N aturally, easier access to such a complex resource also creates vulnerabilities for patients – health records contain sensitive private information, the disclosure of which can potentially harm the patient. T he essence of the ethical dilemma is claimed to lie in the fact that ‘explicit informed consent preserves freedom of choice at the cost of less health and welfare while strong paternalism, without the possibility to opt out, promotes health and welfare at the cost of freedom’ (N orheim 2006). H ere we seem to have a clear opposition between the individual-centred values of liberalism, on the one hand, and the public interest argument, on the other. T he ‘opt-in’ model would respect the lessons learnt from the history of medical ethics – that efforts to promote the common good must be constrained by liberty and informed consent, that those affected have the right to accept or reject the programme, and that patients have a legitimate interest in privacy and preventing third parties gaining access to sensitive data. T he ‘opt-out’ policy of data sharing, whereby an individual will still have a right to prevent disclosure to treating physicians, will most likely guarantee that the data of the majority of the population will be available in the database. A s regards the ‘opt-out’ model, it has been argued by the NHS C are R ecords D evelopment Board Ethics A dvisory Group that ‘whilst the right to refuse recording might put the interest of the patients first, and supports patient choice, the patient will be faced with a tension between the desire for confidentiality and the expectation of receiving high quality

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care’ (Ethical Issues of C onsent 2004, 3). T here is also a broad public interest in social uses of databases – the exploitation of health data for scientific purposes and statistics, for the auditing, planning and management of healthcare services. The strategy of recording but controlling disclosure of identifiable data would still permit access to anonymous data for administrative and statistical purposes and will guarantee the availability of a sound research base. Different countries have proceeded differently. IZIP – the Czech nationwide electronic health record system – uses the ‘opt-in’ option: citizens are free to decide whether they want their data to be included in the database. S tressing that ‘the patient owns the medical file, and as such it is their decision only’, this model therefore favours strong autonomy. T he other extreme would be where the state paternalistically decides that it is better for the health of individuals, welfare of the state and overall research potential to have everybody’s data available, and thus to not even ‘opt-out’ would be an option. Between these two extremes there lies an approach of ‘soft paternalism’. T his has been favoured by both the U K and Estonia, which have voted for the ‘opt-out’ system approach. In Estonia the participants are not allowed to make a decision about whether to allow recording and storing of their data, but they are guaranteed a choice about sharing their data (in case of non-disclosure the data will be contained within a ‘sealed envelope’ which can be opened subsequently by the patient or by a physician, if the patient is in a life-critical situation). T his is an attempt to balance individual and collective interests by promoting public health and preserving a certain degree of freedom of choice. We see here how certain communitarian or collective values (efficient healthcare, solidarity and security) can be prioritized over the individual values of liberty, privacy, autonomy and self-determination. T his also shows clearly a turn from right-based discourse to common-good based discourse. T he rationale for giving up the requirement of obtaining informed consent and preferring an ‘optout’ policy to data sharing is that an appropriate balance between individual and public interests should be maintained. Revisiting the Personal vs the Public Divide Perhaps it is possible and even useful to reconceptualize this debate in less dichotomized terms. W e often hear that the H uman Genome Project has raised  ������������������������������������������� IZIP: .  ����������������������������������������������������������������������������������� T he Estonian E-H ealth project is regulated by the A ct to amend the H ealth S ervices O rganization A ct and other related A cts (E-health A ct) adopted by the Estonian Parliament on 20.12.2008. . Read more about the principles of E-health: .

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two conflicting social reactions: ‘On the one hand, there is very strong public support for breakthroughs promising better medical diagnosis and treatments…; on the other there are anxieties about increased loss of privacy and the potential for genetic discrimination, as well as about the capacity to regulate genetic science in the public interest’ (Essentially Y ours 2006). But isn’t it possible to express the argument concerning public interest in efficient healthcare as simultaneously one concerning personal interest in better health? People have personal interests as individual users of healthcare services and also as citizens. Why do we think that it is (solely) public interest in security that makes us consent to all the security measures adopted in airports? Perhaps we also agree to give up our right to privacy because we value our own security more than our privacy. A s regards electronic health databases, we might care more about health than privacy and think that asking for explicit consent will cost a lot of resources (both time and money) which could be used for medical treatment. W e also understand that if too few patients are included, the social uses of the databases will be lost and we thus voluntarily give up our privacy in order to promote health – our own as well as that of others. Participation in population-based genetic databases can further our own health prospects (if personal feedback is foreseen), while we are also motivated by altruistic impulses to promote scientific research that ultimately benefits mankind. T hus, the choice is often not between two opposing values of individual and communal kinds, but between values that can be conceptualized in both ways. As another example of value-conflict, let’s look at problems surrounding health insurance in the genetic age. Generally, discrimination in insurance is understood as the inclusion of non-relevant information about a person (or group) for actuarial calculations. Based on this assumption, insurance companies and some philosophers (Lemmens 1999; Radetzki et al. 2003) have argued that the use of genetic information does not imply discrimination since it is relevant to a person’s future health status and thus it would be unfair towards other insured persons to disregard that information. A n individual who has learnt of their genetic disposition has a personal interest in receiving economical coverage for potential health costs. C oncealment of the results of genetic testing from insurers or a general ban on genetic discrimination in insurance would personally benefit them. O n the other hand, there is a danger of the insurance industry ultimately collapsing as a result of adverse selection, whereby high-risk individuals purchase insurance providing high benefits while keeping the risk information to themselves. H owever, at the same time, the public has an interest in a functioning insurance industry and ultimately the individual with private gene test results also has the same interest. W e see here a complex mixture of individual and public interests, and the opposition is not necessarily between these two but also between several personal interests and values (for example, privacy and health). But even if the line between individual and communal values is rethought, this does not remove the problem of value conflict – respect towards two individual values simultaneously is often impossible. How is decision making to proceed then?

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Plurality of Values The proposal presented here is that value conflicts in the framework of pluralism are dealt with. T his maintains that values are objective, but conditional and contextual. A lthough pluralists deny that there is one authoritative way of resolving value conflicts, as there is no overriding value, they still do not succumb to relativism. On a pluralist approach, rankings of values are reasonable only in particular situations because they depend on traditions and individual conceptions of the good life (Kekes 1993). D rawing on the arguments of C hang (2004), it is proposed that even if value comparisons at the general level (in the whole range of situations of choice and comparison where the values figure) are not possible (‘strong incommensurability’), there may be possibilities for relating conflicting values to further values (moral or non-moral) which would help to rank the realization of one value above that of another (‘weak incommensurability’). Often there is incommensurability of values at the general level, but this does not necessarily mean that values cannot be compared in specific socio-political contexts. Bioethics debates usually get embedded in specific contexts, but these have not received enough consideration alongside highly abstract ethical principles. A s shown above, often the conflicts which are seen as private versus public or as individual right versus common good are in reality conflicts between two individual values. In this case, decision making relies on the consideration of a specific sociopolitical context that includes facts about the specific situation, on the one hand, and the established value system and conception of the good life, on the other. S uch reflection could provide the basis for weighing two or more objectively valid and important but conflicting values. The solution of the value conflict lies in giving preference to one value in a single specific situation, but it does not entail final adherence to an absolute hierarchy of values or an ethical framework. However, it may well be the case that the value systems change because of the development of socio-political contexts or self-understanding. F or example, the shift towards more communal values, such as solidarity and reciprocity, in the field of genetic research can be explained through changes in the conception of the human being, in understanding their relatedness to other living beings. A similar contextualized approach can be applied in the case of a conflict between two different value systems (for example, liberal individualism and communitarianism). Instead of debating whether one should prefer individual rights or common-good based arguments, one should rather consider the value conflicts in specific socio-political situations and keep in mind the larger picture and the long-term perspective. A dditionally, it is always helpful to attempt to reconceptualize the values under consideration. F or example, often an individual interest in privacy can also be regarded as a public interest in protecting individual autonomy and confidentiality (Ashcroft 2004, 23). Similarly, a public interest in scientific progress can be seen as an individual interest in health, or a substitution of informed consent with an open consent defined as ultimately serving private

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interests. O f course, a common good or public interest is not simply the sum of private interests, it is important to emphasize that often it is not in fundamental opposition to individual interests either. T he problem is that public interest is an extremely vague concept and famously difficult to define. History has shown that it can be easily manipulated and used in order to further particular interests under the label of common interests. Although it is thought that the definition of the public good is a worthy philosophical and maybe even political goal to pursue, it may often be more useful to reconsider the dichotomy between public and individual interests as less oppositional than is traditionally thought. References T he A cademy of M edical S ciences (ed.) (2006) Personal Data for Public Good: Using Health Information in Medical Research: A Report from the Academy of Medical Sciences. A llen, G. (1972) ‘Eugenics’, in D .L. S ills and R .K. M erton (eds), International Encyclopedia of the Social Sciences (NY : M acmillan), 5–6. Árnason, V. (2004) ‘C oding and consent: M oral challenges of the database project in Iceland’, Bioethics, 18, 36–61. A shcroft, R .E. (2004) ‘F rom public interest to political justice’, Cambridge Quarterly of Healthcare Ethics, 13, 20–27. Austin, M.A., Harding, S.E. and McElroy, C. (2003a) ‘Genebanks: A comparison of eight proposed international genetic databases’, Community Genetics, 6, 37–45. A ustin, M .A ., H arding, S .E. and M cElroy, C . (2003b) ‘M onitoring ethical, legal and social issues in developing population genetic databases’, Genetics in Medicine, 5:6, 451–457. A ustralian Law R eform C ommission (2003) Essentially Yours: The Protection of Human Genetic Information in Australia: Report (A LRC 96). C ambon-T homsen, A ., R ial-S ebbag, E. and Knoppers, B.M . (2007) ‘T rends in ethical and legal frameworks for the use of human biobanks’, The European Respiratory Journal, 30: 2, 373–382. C are R ecords D evelopment Board Ethics A dvisory Group (ed.) (2004) Ethical Issues of Consent to Recording and Disclosure of Health Records (London: D epartment of H ealth). Chadwick, R. and Berg, K. (2001) ‘Solidarity and equity: New ethical frameworks for genetic databases’, Nature Reviews: Genetics, 2, 318–321. Chadwick, R. and Wilson, S. (2004) ‘Genomic databases as global public goods?’, Res Publica, 10: 2, 123–134. C hang, R . (2004) Putting Together Morality and Well-Being, in P. Baumann and M . Betzler (eds), Practical Conflicts (C ambridge: C ambridge U niversity Press), 118–158.

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Goldworth, A . (1999) ‘Informed consent in the genetic age’, Cambridge Quarterly of Healthcare Ethics, 8, 393–400. H irtzlin, I., D ubreuil, C ., Préaubert, N ., D uchier, J., Jansen, B., S imon, J., Lobato de F aria, P., Perez-Lezaun, A ., Visser, B., W illiams, G.D . and C ambonThomsen, A. (2003) ‘An empirical survey on biobanking of human genetic material and data in six EU countries’, European Journal of Human Genetics, 11, 475–488. HUGO Ethics Committee Statement on Human Genomic Databases (2002). Kaye, J. (2007) ‘T he legal jigsaw governing population genetic databases: Concluding remarks on the ELSAGEN legal findings’, in M. Häyry, R.Chadwick, V. Árnason and G. Árnason (eds), The Ethics and Governance of Human Genetic Databases: European Perspectives (C ambridge: C ambridge U niversity Press), 141–145. Kaye, J., H elgason, H .H ., N õmper, A ., S ild, T . and W endel, L. (2004) ‘Population genetic databases: A comparative analysis of the law in Iceland, S weden, Estonia and U K’, Trames, 8, 15–33. Kekes, J. (1993) The Morality of Pluralism (Princeton, N ew Jersey: Princeton U niversity Press). Knoppers, B.M . (2000) ‘F rom medical ethics to “genethics”’, Lancet, 356 S upplement, s38–s38. Knoppers, B.M. and Chadwick, R. (2005) ‘Human genetic research: Emerging trends in ethics’, Nature Reviews: Genetics, 6, 75–79. N orheim, O .F . (2006) ‘S oft paternalism and the ethics of shared electronic patient records’, BMJ, 333, 2–3. Kristinsson, S . (2004) ‘D atabases and informed consent: C an broad consent legitimate research?’, in G. Árnason, S . N ordal and V. Árnason (eds), Blood and Data: Ethical, Legal And Social Aspects of Human Genetic Databases (Iceland: U niversity of Iceland Press), 111–120. Lemmens, T . (1999) ‘Private parties, public duties? T������������������������������� he shifting role of insurance companies in the genetics era’, in A.K. Thompson and R.F. Chadwick (eds), Genetic Information: Acquisition, Access, and Control (New York, Boston, D ordrecht, London, M oscow: Kluwer A cademic /Plenum Publishers), 31–39. Lipworth, W .R . and Kerridge, A .I. (2006) ‘C onsent in crisis: T he need to reconceptualize consent to tissue banking research’, Internal Medicine Journal, 36, 124–128. N õmper, A . (2005) Open Consent: A New Form of Informed Consent for Population Genetic Databases (T artu: T artu U niversity Press). N õmper, A . (2007) ‘T ransforming principles of biolaw into national legislation: S ome comparative notes regarding the law in Estonia’, in M . H äyry, R . Chadwick, V. Árnason and G. Árnason (eds), The Ethics and Governance of Human Genetic Databases: European Perspectives (C ambridge: C ambridge U niversity Press), 120–131. O ’N eill, O . (2001) ‘Informed consent and genetic information’, Studies in History and Philosophy of Biological and Biomedical Sciences, 32: 4, 689–704.

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O ’N eill, O . (2002) Autonomy and Trust in Bioethics (C ambridge: C ambridge U niversity Press). O ’N eill, O . (2003) ‘S ome limits of informed consent’, Journal of Medical Ethics, 29, 4–7. O ’N eill, O . (2004) ‘Informed consent and public health’, Philosophical Transactions of the Royal Society: Biological Sciences, 359: 1447, 1133–1136. Proctor, R .N . (1992) ‘Genomics and eugenics: H ow fair is the comparison?’, in G.J. A nnas and S . Elias (eds), Gene Mapping: Using Law and Ethics as Guides (New York: Oxford University Press), 57–93. Radetzki, M., Radetzki, M. and Juth, N. ������� (2003) Genes and Insurance: Ethical, Legal and Economical Issues (C ambridge: C ambridge U niversity Press). Simm, K. (2005) ‘Benefit-sharing: An inquiry regarding the meaning and limits of the concept in human genetic research’, Genomics, Society and Policy, 1:2, 29–40. Simm, K. (2007a) ‘Benefit-sharing: A look at the history of an ethics concern’, Nature Reviews Genetics, 8: 7, 496. Simm, K. (2007b) ‘Benefit-sharing and biobanks’, in M. Häyry, R. Chadwick, V. Árnason and G. Árnason (eds), The Ethics and Governance of Human Genetic Databases: European Perspectives (C ambridge: C ambridge U niversity Press), 159–169. S utrop, M . (2004a) ‘H uman genetic databases: Ethical, legal and social issues. Preface’, Trames 8: 1-1, 5–12. S utrop, M . (2004b) ‘Pharmacogenetics: Ethical issues’, Bioethics, 18:4, III –VIII . S utrop, M . (2007) ‘T rust’, in M . H äyry, R. Chadwick, V. Árnason and G. Árnason (eds), The Ethics and Governance of Human Genetic Databases: European Perspectives (C ambridge: C ambridge U niversity Press), 190–198. Takala, T. (2004) ‘Why we should not relax ethical rules in the age of genetics?’, in G. Árnason, S . N ordal and V. Árnason (eds), Blood and Data: Ethical, Legal And Social Aspects of Human Genetic Databases (Iceland: U niversity of Iceland Press), 135–140. T horgeirsdóttir, S . (2004) ‘T he controversy on consent in the Icelandic database case and narrow bioethics’, in G. �������������������������������������������� Árnason, S . N ordal and V. Árnason (eds), Blood and Data: Ethical, Legal And Social Aspects of Human Genetic Databases (Iceland: U niversity of Iceland Press),������� 67–77.

C hapter 15

C hallenging S cience: Public Views of Personalized M edicine Elisa Pieri

Introduction Personalized medicine promises to deliver better healthcare that is targeted to patients’ individual needs and genomes. T his promise is also endorsed in the U K Government W hite Paper Our Genes, Our Inheritance (D epartment of H ealth 2003) setting out the agenda for pharmacogenetics within the N ational H ealth S ervice in Britain. Pharmacogenetic solutions are also increasingly advocated to treat complex conditions and behaviours, including psychiatric and personality disorders. W hile the appeal of this promise may not be the same for all patients and healthcare consumers, little attention has been paid to accessing the views of citizens on pharmacogenetics (PGx). T his chapter discusses some public views on the genomic knowledge claims around personalized medicine, in the context of wider developments in new genetics and in relation to issues of accountability and trust. Personalised Medicine Pharmacogenetics can be defined as the study of how genetic variations affect an individual’s response to medicines. Pharmacogenetics uses genetic testing to prescribe and develop drugs. T he W hite Paper published by the U K D epartment of H ealth capitalizes on the possibilities and expectations surrounding pharmacogenetics, by envisaging ‘prescribing which is more effectively tailored to the needs of the individual’ (D epartment of H ealth 2008). It also promises a ‘more personalised healthcare with prevention and treatment tailored according to a person’s individual genetic profile’ (Department of Health 2003, 5). W hile the promises of this new genetic technology continue to be investigated, possible applications have been envisaged in areas where medication can and often does result in serious adverse drug reactions (ADR s). C onsequently, some of the medical domains that have first welcomed research into pharmacogenetics have included those that currently devise treatment and therapies for epilepsy (Sloeke et al. 2006), HI V (T elenti, A ubert and S pertini 2002), and liver diseases (Blum et al.  ����������������������������������������������������������������������������� Pharmacogenetics is used for instance in treating HIV with Abacavir (Ziagen).

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2007). T he drugs currently prescribed in these areas in fact can lead to side effects with serious outcomes, including death. S imilarly, where the cost of providing treatment is extremely high, it has been suggested that pharmacogenetics could help decision making. It could be used to weigh up the costs of a medication more precisely against its odds of efficacy in a specific patient. This is why personalized medicine has been hailed as the way forward in some areas of oncology (R oses 2004), for instance in relation to the drug H erceptin. Significant research and resources are currently committed to conducting clinical trials with a view to validating pharmacogenetics and its cost-effectiveness within the U K N ational H ealth S ystem. S imultaneously, debates have started to be conducted over professional training and changes to practice that will need to be implemented, as well as the new links that will need to be forged between disciplines, to maximize the reach of pharmacogenetics. T hese discussions are conducted in the traditional channels – medical publications and conferences – but also through the creation of consortia and networks of those active in the field, such as the North West Pharmacogenetics Research Network, and the six UK Genetics Knowledge Parks created by the Department of Health in 2002. T he promissory aspects of this technology have been eloquently documented elsewhere (Hedgecoe 2003, 2004; Hedgecoe and Martin 2003; Hopkins et al.  ������������������������������������������������������������������������������������� S ee T he R oyal S ociety article ‘W hat is pharmacogenetics?’A vailable on (and accessed on 7 January 2008): .  ������������������������������������ T hese include the following studies: – – – – – –

Pharmacogenetics of GABAergic mechanisms of benefit and harm in epilepsy (Principal Investigator: Professor David Chadwick, University of Liverpool); Variability in response to W arfarin: a prospective analysis of pharmacogenetic and environmental factors (Principal Investigator: Professor M unir Pirmohamed, U niversity of Liverpool); A prospective randomized controlled trial of T hiopurine M ethyltransferase (T PMT ) genotyping in the management of patients, prior to commencement of A zathioprine treatment (Principal Investigator: Professor Bill O llier, U niversity of M anchester); Pharmacogenetics of antimicrobial drug-induced liver injury (Principal Investigator: D r A nn D aly, U niversity of N ewcastle-upon-T yne); T he pharmacogenetics of A nthracycline mediated cardiotoxicity (Principal Investigator: D r H ugh M ontgomery, U niversity C ollege, London); T he development of DNA -based screening for presymptomatic diagnosis of malignant hyperthermia (Principal Investigator: Professor Philip Hopkins, St James’ U niversity H ospital, Leeds).

Further information available on (accessed 7 January 2008).  ������������������������������������������������������������������������ London IDEAS Pharmacogenetics Workshop , 19 December 2005, Institute of C hild H ealth, London.  ��������������������������������������������������������������������������� For further information please see .

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2006; H edgecoe and M artin 2007). C ommentators point to the fact that while most of the possible benefits are not yet achieved (or achievable), very real trade-offs – for instance in terms of resource allocation – are being made today, on the basis of some of these promises. O n the other hand, one of the main fears related to personalized medicine has not materialized – that of an excessive fragmentation of the market into small patient groups, whose needs would not be met by big pharmaceutical companies always in pursuit of blockbuster drugs (Pieri and Wilson 2004). Instead, big pharmaceutical companies (so far) appear to mainly make use of PGx to inform decision making for phase 2 drug trials, rather than for their commercialization strategies (S purr 2006). Pharmacogenetics is, however, being uptaken in other areas, such as psychiatry, and the study and treatment of complex behaviours, such as addiction, depression or obesity (M cM ahon 2006; N urnberger 2006; Bierut 2006; M uglia 2006; S erretti 2007; R oses 2007). W hile it is interesting to observe the trajectory of pharmacogenetics within medical practice and professional associations, as well as within the NHS , it must be noted that there have been a series of applications that have been envisaged to be available over the counter and without professional referral, and the NHS altogether. Some of the latter are already marketed and on sale, and examples include pharmacogenetic tests available on the internet, such as those offered by Genetic H ealth. F or £180 this U K-based company offers Pharmaco Gene, which ‘provides information about your personal genetic tolerance of medications’ and which studies selected polymorphisms that ‘strongly influence the speed of metabolism of very many prescribed drugs’. These tests are directly marketed to individuals and not only suggested to check responses to those drugs that can cause serious and lethal adverse drug reactions. In some cases they are marketed as assisting individuals in making health-related lifestyle choices, such as quitting smoking, as in the case of the pharmacogenetic test NicoTest. Assessing the Impacts of Pharmacogenetics While a number of reports have looked at the possible impacts of pharmacogenetics (M elzer et al. 2003; R oyal S ociety 2005b), and others have highlighted some  ��������������������������������������������������������������������������������� F urther information on Genetic H ealth is available on (last accessed 10 December 2007).  �������������������������������������������������������������������������� (last accessed 10 December 2007). According to the website, this programme involves the application of pharmaco-genetic diagnostics technology developed by O xford U niversity, as well as G-N ostic, a ‘diagnostic web-based infrasctucture’, which is provided and hosted by Van M ierlo C ommunications C onsulting Inc (see ). NicoTest is advertised as combining ‘pharmacogenetics and O nline C ognitive Behavioural T herapy (CCT B) to deliver Personalised Treatment’ (see ).

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of the possible ethical concerns (Nuffield Council on Bioethics 2003), little attention is generally paid to accessing public views and priorities on the topic. A n exception was a short commissioned study conducted by the R oyal S ociety, which reported public support for pharmacogenetic tests, despite participants being opposed to the idea of ‘over-the-counter’ access to them (R oyal S ociety 2005a, 10). T he literature on public debate on these issues remains thin, and in 2005– 6 a qualitative study was conducted in the N orth W est to explore public views of personalized medicine. The study also aimed to highlight salient knowledge and neglected questions, and understand public framings, in relation to issues of resource allocation. It was conducted at the ESRC C entre for Economic and S ocial A spects of Genomics (C ESA Gen), and funded in collaboration with the N orth West Genetics Knowledge Park, one of the six parks recently created by the UK D epartment of H ealth. T he project involved carrying out 14 focus groups with sections of the public traditionally deemed hard to reach – such as parents of young children, young people and senior citizens – as well as citizens with a C hinese and A frican C aribbean H eritage. T he project aimed to involve citizens who normally are under-represented in similar studies. Group discussions were intended to be exploratory and conducive to opening up further debate, and, as in all qualitative research, the views and values of participants were not taken to be representative samples of the thoughts and values of the larger groups and communities with whom they may affiliate. Nonetheless, the study explored whether there was any group specific focus to the discussion, which could have been anticipated by theoretical sampling of participants. F or instance, whether the senior citizens would be more interested in the historical changes introduced by the new genetics of personalized medicine, or whether parents of young children would be discussing at greater length possible implications for future generations. However, there were remarkable overlaps on the issues raised by the different groups, and clusters of concerns and priorities that were being put forward by all groups, some of which are presented elsewhere.10 This chapter aims to unpack and critically analyze some of the claims made and shared by participants over issues of procedure within science and genetics. It discusses issues of trust in scientific institutional practices and goals, the challenging of knowledge claims on pharmacogenetics, and the wider (and commercial) contexts in which personalization is taking place.  ���������������������������������������������������������������������������� The work described was conducted by Elisa Pieri and Brian Wynne at the ESRC C entre for Economic and S ocial A spects of Genomics (C ESA Gen), Lancaster U niversity. For further information please see and (both accessed 8 January 2008).  �������������������������������������������������������������������������������� Nowgen is one of the six parks recently created by the UK Department of Health. Further information is available on (accessed 8 January 2008). For information on the other five genetics knowledge parks, please see footnote 6. 10 �������������������������������������������� .

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Challenging Knowledge Claims As work involving public views of pharmacogenetics remains limited, most of it tends to focus on assessing perceived impacts of personalized medicine and tends to assume that the technology works and will be implemented (Royal Society 2005a). Instead one of the most interesting dimensions emerging from our study was the challenging of scientific claims and a reflection on the contingencies of science more generally. Participants discussed at length whether the knowledge potentially derivable from personalized medicine and predictive genetic testing was indeed ‘personalized’ or whether it would affect other ‘collectives’ too (such as one’s family, larger networks, groups with whom one is affiliating). They debated whether such knowledge would be burdensome or empowering, how they would access this type of knowledge, their trusted sources of health information, the uneven access to the internet and the changing role of general practitioners. Participants expressed concerns over the possibility of external access to this genetic information (for instance by employers or insurers), its relative weight vis-à-vis other environmental factors, as well as possible obstacles (socio-economics mainly) preventing some individuals from taking up this type of genetic knowledge in making lifestyle changes in their everyday habits. H owever, members of the public devoted a considerable part of the focus group discussion to the context of the technological issue they were presented with. W hile none of the participants claimed to have any expert knowledge of pharmacogenetics, they reflected on ‘the science culture’ behind personalized medicine, seen as that of a community of practice that pursues its own interests and conventions. A mong the contingencies of science that were mentioned by members of the public, some lamented the (real or perceived) thin evidence base for claims of personalized medicine, and hence called into question the rigour of science itself. T his is illustrated in the example below, where the idea of predicting a genetic response to an agent is problematized in the light of the various other factors that may intervene. A t the same time, doubts are cast by the participant over the statistical power needed to make similar genetic predictions. As mentioned before many clinical trials are still being conducted, and some of these debates – over statistical power but also over pharmacokinetic, pharmacodynamic and other non-genetic factors that cause adverse drug reactions – are also ongoing amongst experts: [F ]or a start it’s a genetic predisposition, but how strong a predisposition is that? And then when it talks about determining which method is best for the people with that genetic predisposition, you’ve got all the different kind of parameters that you’d have to take account of, people’s whole lifestyle situation and things like that, as well as just the gene factor, and trying to factor everything out across all the range of different groups, and other factors that come into it. I think they’d have to be very careful about how they did that, and you know, whether their results are really significant or not for anyone, because you know I think

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M any commentators have highlighted citizens’ loss of trust in expertise generally, and have often associated this trait with postmodernity tout court, which is described as an era where authority and science have lost their privileged status. U nder this account of postmodernity, science would have undergone a process of democratization and been exposed to the scrutiny not just of peer experts but also of any citizen (Beck 1992; Beck and Giddens 1994; Irwin 1995). As will be argued later, claims that this has taken place and that, as a consequence citizens are now empowered expert patients, seem to be overoptimistic. Indeed, the members of the public involved in this study’s focus groups seem to suggest a different view, one where scientists are seeking status and prestige, and are doing so precisely by embracing research in areas that are perceived to be cutting edge and innovative, such as pharmacogenetics. M embers of the public discussed this claim with reference to the deployment of personalized medicine over the counter and within the N ational H ealth S ervice (NHS ). In the example below a member of the public voices his concern that one of the drivers behind implementing personalized medicine within the NHS may be the pursuit of personal professional recognition. H e also suggests that the commercial interests of big pharmaceutical companies may prevail in determining the framing of the problem – for instance as one of genetically regulated adverse drug reactions – and the framing of the solution, as one requiring the use of pharmacogenetics: there are many inconsistencies with a lot of it but there will always be those experts who are kind of pushing it to be in service for the public because they often get quite sort of narrow focused on what they’re doing, and don’t think about some other aspects (…) some other expert in the field could see, or they’re actually often I think pushing it because it’s their research they are working on and there’s more money and kudos in coming up with it, and also I think a lot of pharmaceutical companies will also push things quite heavily because they see there will be lots of money to be made out of it. W hile sometimes there’s no real basis there for thinking that or working that way. They’re quite happy to sell something whether there’s a real demand for it or not, but experts will try and push demand for their particular area of expertise. (F ocus group with parents of young children, 16.08.05, L1136-1149)

T he relationship with industry and the use of what was described earlier on in the chapter as promissory science (H edgecoe & M artin 2003) also acquire relevance when scientists are engaged in securing funds for their research or in contributing to setting priorities for public health. Indeed, the feeling of the participants in the groups was that the process of setting priorities and deciding about research agendas is still quite opaque and removed from public scrutiny:

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A: I think also other times with sort of science, the individuals develop this particular form of study and follow it and sometimes they’re following it because they want to follow it, and you ask yourself ‘well what’s at the end, what are they trying to achieve?’ (…) B: But some of it you think well C : W hat are they wasting the money on that for? A: Yes, they can get a professorship out of this but… (F ocus group with senior citizens 27.09.05 L1176-1188) A: You don’t find out what some bunches of scientists want to experiment on, you don’t find anything out unless they make a breakthrough, and then you get it all on the television, ‘oh we’ve made a breakthrough for this’. B: Exactly A: So I don’t think we can be responsible for it, because we don’t know what the heck they’re doing (…) You get a bunch of scientists saying oh we’re going to look into such and such a thing. (F ocus group with senior citizens 27.09.05 L1494-1507)

R ather than describing themselves as empowered patients, the members of the public in our groups reported that citizens were faced with a democratic deficit in terms of contributing to the setting of priorities for science and healthcare. S tudies that focus on the views of scientists often report that scientists think allowing members of the public to participate – with others, including experts – in science policy (Cook, Pieri and Robbins 2004; Robbins, Pieri and Cook 2004; Cook, Robbins and Pieri 2006) would stifle innovation and restrict options. Scientists fear members of the public would be pushing for scientific commitments that are conservative and relatively risk-free. On the contrary, the concern of the members of the public in our groups was precisely that scientists themselves were not best placed in making those decisions about research agendas on their own. Members of the public thought scientists’ promotion of certain areas (of interest to them) would result in a lack of diversification and a poor exploration of alternatives. Again, this suggestion challenges the ‘scientific method’ and ‘rigor’ of a community that should in principle encourage triangulation and an open exploration of alternatives and of expert disagreement: It’s almost kind of like a new trend at the moment, you know genes and genetics, and you know it’s the new ‘in’ theory basically, it seems like, you know, for everything. But I suppose because it’s kind of like the theory that people see the most and hear the most about at the moment, it means that perhaps they take that, they kind of rely on that a lot more than they would do anything else because they don’t have any, they don’t have access, or they don’t hear about any good alternative theories, medical theories, it’s just you know, if you keep hearing something over and over again it’s going to kind of sink somewhere. (F ocus group with C hinese women 03.03.05, L1460:1469)

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People may be blaming on genetics things that are just to do with environmental things, and therefore they’re going about their own method to secure sorting of things. I mean there’s a debate about what things are due to genetics and what things are due to environmental issues, and if there’s too much emphasis on genetics it could just cloud the issue. (F ocus group with young people 10.08.05 L287-290)

It appears that genetic technologies including pharmacogenetics, are seen as ‘trendy’ and that this allure partly emanates from their promissory science claims. Equally, they appear to be entities with a fetish value in themselves, and some of the citizens in the study suggested that the scientists promoting personalized medicine may be taking this approach. This is not to say that participants saw no benefits emanating from personalized medicine and other associated technologies, but rather that they were conscious that in promoting these technologies the case for them is often overstated, the benefits, when these will accrue, will most possibly be unevenly distributed and more modest than anticipated. T hey also saw a need for opening up debates about the trajectories of science, including pharmacogenetic science, both in its clinical applications within the NHS , and in the context of commercialization of pharmacogenetic tests and information, as illustrated in the quote below: I think people are sort of in danger and in delusion that they know more than they do, about thinking genetic tests hold more answers than they really do, and more solutions about problems than they really do. And I think that’s certainly the sort of flavour that people that have waited for it, it’s the way forward to them, and I’m sure probably there will be some advances in the ways to treat people, but there aren’t very many now, certainly not anything to do with the amount of fuss that’s been made about it. And I don’t think that genes are as good predictors of many things as some people like to think they are. But at the same time I think people will use this information, like insurance companies and that, to pass a lot of decisions that will probably, could probably have serious adverse affect on people’s lives. I think the benefits are probably, I think the benefits seem quite thinly spread at the moment and possible sort of pitfalls could be quite serious for some individuals, if not now, a bit further down the road. (F ocus group with parents of young children 23.08.05 L2096-2105)

Conclusions This chapter has argued that while pharmacogenetics is finding clinical applications in an increasingly large number of medical fields, including psychiatry, research into public views over personalized medicine is still relatively scarce. The work conducted in the U K often overemphasizes the promises of pharmacogenetics, and rarely contextualizes this technology either in terms of the general allocation of

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healthcare resources – in a national health service such as the NHS – or in terms of commercialization of tests and information over the counter or on the internet. T he qualitative research conducted and presented in this chapter argues for an approach that takes into account that technologies such as pharmacogenetics are not developed in a vacuum. T hey are seen by citizens as part of the same scientific machinery often considered by members of the public to operate out of self-interest and undemocratically. While the scientific community is trying to focus debate around ‘scientific issues’ only – often to the exclusion of some socio-political aspects of a technology – much social science research has been suggesting that this simply alienates the public and increases their distrust (Irwin and W ynne 1996; W ynne 2006). T he ‘scientific issues’ are, on close inspection, found not to be ‘a mere fact of science’ but to contain also judgments and assumptions. It is in fact typical of any community of practice to embed its own values in its procedures and institutions. R ather than shying away from this, authors have claimed that the scientific community ought to reflect on that, and try to enhance the transparency of its procedures. This chapter calls for a move in this direction, adding the voice of the citizens involved in the study to this call, and analyzing the ways in which some lay people reflect and distance themselves from the machinery of science, with its knowledge claims. Paradoxically, the members of the public in this study pointed to the contingencies of science, while also acknowledging that the scientific community still holds its place on a metaphorical pedestal: You wonder who would actually be there to question the science? (…) I think a lot of people wouldn’t because it would be a scientific claim. (Parents of young children 23.08.05 L1143-58)

Indeed, genetic technologies are sometimes seen as assisting the scientific community in asserting such leverage. It has been suggested here that some commentators envisage a new role for the patient, and that the government, at least on paper, is using this rhetoric too. T he personalization of medicine can be portrayed as a move towards attributing greater responsibility and choice to the empowered individual (Pieri 2006, 2007a, 2007b). H owever, what is argued in this chapter is that citizens may feel trapped between this rhetoric of empowerment and the reality that they reported of their little impact on agendas and priorities for their healthcare. Acknowledgments This work was conducted at the ESRC Centre for Economic and Social Aspects of Genomics (C ESA Gen), as a collaboration between C ESA Gen and the N orth W est Genetics Knowledge Park (NOWGEN), which funded the study. The support of the ESRC is also gratefully acknowledged.

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References Beck, U. (1992) Risk Society: Towards a New Modernity (London: S age). Beck, U., Giddens, A, and Lash, S. (1994) Reflexive Modernisation: Politics, Tradition and Aesthetics in the Modern Social Order (C ambridge: Polity Press). Bierut, L.J. (2006) ‘Genetics of nicotine dependence – genome wide association and candidate gene studies’. W ashington U niversity, S t Louis, USA . Paper given at XIV W orld C ongress on Psychiatric Genetics. C agliari, 28 O ct–1 N ov 2006. Blum, H.E., Cox, D.W., Häussinger, D., Jansen, P.L.M. and Kullack-Ublick, G.A. (eds) (2007) Genetics in Liver Disease Series (Freiburg: Falk Symposium). Cook, G., Pieri, E., and Robbins, P.T. (2004) ‘The scientists think and the public feels: expert perceptions of the discourse of GM food’, Discourse and Society, 15:4, 433–449. Cook, G., Robbins, P.T., and Pieri, E. (2006) ‘Words of mass destruction: British newspaper coverage of the genetically modified food debate, expert and nonexpert reactions’, Public Understanding of Science, 15:1, 5–29. D epartment of H ealth (2003) ‘O ur Inheritance, O ur F uture: R ealising the potential of genetics in the NHS ’. W hite Paper, CM 5791-II . London: T he Stationery Office for The Crown. Available on (as accessed on 7 January 2008) . Hedgecoe, A. (2003) ‘Terminology and the construction of scientific disciplines: T he case of pharmacogenomics’, Science, Technology and Human Values, 28:4, 513–537. H edgecoe, A . (2004) The Politics of Personalised Medicine: Pharmacogenetics in the Clinic (C ambridge: C ambridge U niversity Press). Hedgecoe, A., and Martin, P.A. (2003) ‘The drugs don’t work: Expectations and the shaping of pharmacogenetics’, Social Studies of Science, 33:3, 327–364. Hedgecoe, A. and Martin, P.A. (2007) ‘Genomics, STS and the making of sociotechnical futures’, in E.J. Hackett, O. Amsterdamska, M. Lynch and J. W ajecman (eds) The Handbook of Science and Technology Studies. 3rd ed. (C ambridge, M ass.: MIT Press), 817–839. Hopkins, M.M., Ibarreta, D., Gaisser, S., Enzing, C.M., Ryan, J., Martin, P.A., Lewis, G., Detmar, S., Van den Akker-Van Marle, M.E., Hedgecoe, A.M., N ightingale, P., D reiling, M ., H arting, K.J., and Vullings, W . (2006) ‘Exploiting pharmacogenetics and pharmacogenomics: F rom promise to pragmatic policies’, Nature Biotechnology, 24, 401–410. Irwin, A . (1995) Citizen Science: A Study of People, Expertise and Sustainable Development (London: R outledge). Irwin, A ., and W ynne, B. (eds) (1996) Misunderstanding Science? The Public Reconstruction of Science and Technology (C ambridge: C ambridge U niversity Press).

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M cM ahon, F .J. (2006) ‘A pharmacogenetic study of treatment outcome and adverse effects in the STAR *D cohort’. NIMH , Bethesda, MD , USA . Paper given at XIV W orld C ongress on Psychiatric Genetics. C agliari, 28 O ct–1 N ov 2006. Melzer, D., Raven, A., Detmer, D.E., Ling, T., Zimmern, R.L., and Jillions, D. (2003) ‘My very own medicine: What must I know? Information policy for pharmacogenetics’ (C ambridge: D epartment of Public H ealth and Primary C are, U niversity of C ambridge). R eport available on: (accessed 8 January 2008). M uglia, P. (2006) ‘A ddiction enabling drug discovery and development’ (GS K, Verona, Italy). Paper given at XIV W orld C ongress on Psychiatric Genetics. C agliari, 28 O ct–1N ov 2006. Nuffield Council on Bioethics (2003) ‘Pharmacogenetics: Ethical Issues’ (London: Nuffield Council on Bioethics). Report available on: <www.nuffieldbioethics. org/go/ourwork/pharmacogenetics/publication_314.html> (accessed on 8 January 2008). N urnberger, J.I. (2006) ‘S eparate developmental pathways for single genes associated with alcohol dependance’ (Indiana U niversity S chool of M edicine, USA ) Paper given at XIV W orld C ongress on Psychiatric Genetics. C agliari, 28 O ct–1 N ov 2006. Pieri, E. (2006) ‘C itizenship, responsibility and the promise of personalised medicine’. Paper given at 11th H uman Genome O rganization M eeting (HUGO), Helsinki 25–28 Aug 2006. Pieri, E. (2007a) ‘Issues in Public Engagement and A ccountability: A U K qualitative study of personalised medicine’. Invited presentation at “Kyoto U niversity 21st C entury C EO Program 5th ISS S ymposium. Japan, 28 F eb–2 M arch 2007. Pieri, E. (2007b) ‘Pharmacogenetics: T he personal is political’. Paper given at the N owgen A cademic S eminar S eries. T he presentation was webcast. N orth W est Genetics Knowledge Park, Manchester 20 March 2007. Pieri, E., and W ilson, S . (2004) ‘Pharmacogenetics: D rugs and treatment specifically tailored to our needs’, Genomics Network, 1. A vailable on: (accessed 8 January 2008). Robbins, P.T., Pieri, E., and Cook, G. (2004) ‘GM scientists and the politics of the risk society’,. in A.K. Haugestad, and J.D. Wulfhorst (eds) Future as Fairness: Ecological Justice & Global Citizenship (Amsterdam/New York: Rodopi Press), 85–102. R oses, A .D . (2004) ‘Pharmacogenetics and drug development: T he path to safer and more effective drugs’. Nature Reviews Genetics 5, 645–656. A vailable on: (accessed on 7 January 2008). Roses, A.D. (2007) ‘Industry-academia collaborations to find genes for complex disorders’ (GSK and Duke University, USA). Paper given at XV World

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Congress on Psychiatric Genetics: Bridging Genes to Behaviour. New York, 7–11 O ct 2007. R oyal S ociety (2005a) ‘Pharmacogenetics D ialogue: F indings from public workshops on personalised medicines held by the Royal Society’s Science in S ociety programme’ (London: T he R oyal S ociety). R eport available on: (accessed 8 January 2008). R oyal S ociety (2005b) ‘Personalised medicine: H opes and realities’ (London: The Royal Society). Report available on: (accessed 8 January 2008). R oyal S ociety ‘W hat is pharmacogenetics?’. A vailable on (and accessed 7 January 2008) . S erretti, A . (2007) ‘Pharmacogenetics of antidepressants in mood disorder: A proposal for methodological guidelines’ (U niversity of Bologna, Italy). Paper given at XV W orld C ongress on Psychiatric Genetics: Bridging Genes to Behaviour. New York, 7–11 Oct 2007. Spurr, N. (2006) ‘Pharmacogenetics and decision-making in the drug industry’ (U K: GlaxoS mithKlein). Paper given at N owgen A cademic S eminar S eries. M anchester, 6 F eb 2006. Szoeke, C.E. Newton, M., Wood, J.M., Goldstein, D., Berkovic, S.F., Obrien, T.J. and Sheffield, L.J. (2006) ‘Update on pharmacogenetics in epilepsy: A brief review’. Lancet Neurol., 5:2, 189–196. T elenti, A ., A ubert, V. and S pertini, F . (2002) ‘Individualising HI V treatment: Pharmacogenetics and immunogenetics’, The Lancet, 359:2, 722–723. W ynne, B. (2006) ‘Public engagement as a means of restoring public trust in science: H itting the notes but missing the music?’, Community Genetics, 9(3), 211–220.

C hapter 16

T herapeutic C loning and the Protection of Embryonic Life: D ifferent A pproaches, D ifferent Levels of Protection – A View from the U nited Kingdom S øren H olm

Introduction Commentators in the rest of Europe often have difficulty in understanding why the U nited Kingdom has a very liberal regulation of embryo research and often misinterpret it as based on the view that embryos are not morally important. In this chapter an attempt is made to explain how the U K reached its present regulatory position, and what it implies about the status of the embryo. In the U nited Kingdom somatic cell nuclear transfer (SCNT ) for research, and potentially in the future therapeutic purposes, is legally permitted if it falls within the purposes specified in Schedule 3 of the Human Fertilization and Embryology Act 1990 as amended in the HF E (R esearch Purposes) R egulations of January 2001. The original 1990 purposes are all linked to the reproductive sphere: • • • • • • • • •

promoting advances in treatment of infertility; increasing knowledge on causes of congenital disease; increasing knowledge on causes of miscarriage; developing more effective techniques of contraception; developing methods for detecting gene/chromosome abnormalities in embryos prior to implantation; increasing knowledge about development of embryos; additional 2001 purposes: increasing knowledge about serious disease; enabling any such knowledge to be applied in developing treatment for serious disease.

 ������������������������������������������������������������������������������������� T he initial version of this chapter was prepared for the ‘Judging Values’ conference in Karlsruhe, Germany, M ay 2007.  ������������������������������������������������������������������������������ T he author’s own views on embryo research and SCNT can be found in the papers numbered 1–3 in the list of references.

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A ll research on human embryos, and therefore also all research on embryos derived by SCNT requires a specific licence from the Human Fertilization and Embryology A uthority (HF EA ) and the A uthority has to be convinced that the research is within the allowed purposes and that it is necessary or desirable. T he test for necessity is not what could be called ‘absolute necessity’, that performing SCNT is the only way of answering the research question, but some kind of relative necessity, that performing SCNT is a much better way to answer the research question than any other current method, therefore its use can be justified. T he HF EA has currently issued two licences for SCNT . In one case the purpose is to develop stem cell lines from persons with motor neurone disease to be used in basic research, in the other the purpose is to investigate the derivation of immunologically compatible cells for the treatment of diabetes. The HFEA makes it a condition of the licences that all derived stem cell lines must be deposited in the UK National Stem Cell Bank, where they will be available to other bona fide researchers in the U K and abroad. W hat can we deduce about the protection of embryonic life from the present U K legislation and regulations? T he seemingly most obvious deduction is that there is no significant protection of embryos and embryonic life, since it is possible both to destroy embryos during research and to create embryos (including by SCNT ) for research. The problems with this deduction are: 1) that it only looks at the current end stage of regulation and not the complicated path by which it was reached; and 2) it ignores the terminology of the U K debate where ‘protection of embryonic life’ is not a dominant theme. So first a look at how the UK got to its current relatively liberal legal regime for embryo experimentation. The Development of UK Embryo Experimentation Policy In understanding the development of U K embryo experimentation policy we need to keep a number of historical facts and some features of UK society in mind. The following is not an exhaustive list, but it lists things that most would agree have been important:  ����������������������������������������������������������������������������������� A legal challenge was mounted by Bruno Quintavalle, a well known pro-life activist and director of the Pro-Life A lliance claiming that embryos derived by SCNT did not fall under the HFE Act’s definition of embryo, but this was rejected by the House of Lords. R (on the application of Quintavalle) v Secretary of State for Health [2001] 4 A ll ER 1013, [2002] 2 A ll ER 625, [2003] 2 A ll ER 113.  �������������������������������������������������������������������������������������� W hen the approach is characterized as ‘relatively liberal’ the comparison is not with other legal regimes in Europe or elsewhere, but with the kind of legal regime that would follow from the analysis of contemporary consequentialist and libertarian bioethicists.  �������������������������������������������������������������������������������������� In this chapter arguments based on slippery slopes from ‘therapeutic’ to reproductive cloning are not discussed. T hese have been prominent in the debate but do not directly engage issues concerning the status of the embryo. R eproductive cloning is currently banned in the U K by the H uman R eproductive C loning A ct 2001.

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• • •

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A lthough England has an established church, and 26 bishops have seats in the H ouse of Lords (the U K second chamber of parliament) the U K is a very secular society with a low percentage of people engaging on a regular basis with their religious tradition. T he U K has no written constitution and the European C onvention on H uman R ights was only incorporated directly into U K law in 1998. Louise Brown the first ‘test tube baby’ was the result of UK science and although her birth occasioned considerable ethical and societal disquiet, it also engendered pride in relation to the role of U K scientists. Between the birth of Louise Brown in 1978 and the final legal regulation of IVF practices including research 12 years elapsed, this meant both that certain practices had been routinized and were thereby difficult to abolish and the public perception of IVF as a medical treatment option had been stabilized.

With this background in place the legislative and regulatory history and the language involved in the debates is now studied. T he history begins before the birth of Louise Brown when embryo research was taking place in an essentially unregulated environment. Steptoe and Edwards conducted many experiments involving human embryos before finally reaching an IVF method that worked in humans. Whether these embryos were created for reproductive or research purposes is a moot point, but whatever the analysis is on this point their creation was in a legal vacuum. Embryos have never been legal persons in English or S cottish law and before Louise Brown there had, very understandably been no interest in regulating the in vitro embryo. With the birth of Louise Brown all of this changed and it was quickly realized that regulation was necessary, but given the contentiousness of the issue and the unavailability of a deduction from a constitution or a more general human rights framework it was argued by many that the issues required societal deliberation and not rash legislation. T he government therefore decided to establish an expert committee to consider the issues and propose regulation in 1982. The eminent philosopher Mary Warnock was chosen as its chairperson and the committee came to be known as the Warnock Committee. At the same time the emerging IVF field established a voluntary  ������������������������������������������������������������������������������� England is the only part of the U nited Kingdom that has an established church. T here is no established church in S cotland, W ales or N orthern Ireland.  �������������������������������������������������������������������������� The UK signed and ratified the ECHR much earlier, but it was not directly incorporated into U K law and could not be directly pleaded in U K courts.  ���������������������������������������������������������������������������� T his is not an attempt to provide a full legal history but just an overview.  ���������������������������������������������������������������������������������������� It is not being claimed that it is actually possible to logically deduce policy towards in vitro embryos from any extant constitution or human rights convention. T here are, however, some who claim that it is possible and the point is simply that even the possibility did not exist when U K policy was formulated.

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regulatory body, the Voluntary Licensing A uthority with support from the M edical R esearch C ouncil and the R oyal C ollege of O bstetrics and Gynaecology. In 1984 the expert committee reported and three of its recommendations are relevant here, all endorsed by a large majority on the committee: • • •

embryos do not have legal rights, but they do deserve our special respect; research with embryos is acceptable until 14 days after conception (with various restrictions) (three members opposed this); if necessary for scientific reasons it can be acceptable to create embryos specifically for research (five members opposed this).

T he 14-day limit was mainly supported on the basis of the argument that until the appearance of the primitive streak at about day 14 there is still a possibility of homozygous twinning, so it is only at this point that we can be certain that we are dealing with one individual. Because of the contentiousness of the issues it took six years to get legislation through parliament and it was not until 1991 that the HF E A ct came into force establishing the HF EA . A fter the demonstration in 1998 of the possibilities for the derivation of human embryonic stem cell lines and of reproductive (and by implication ‘therapeutic’) cloning in mammals it became clear that the derivation of stem cell lines was not an allowable purpose under the HFE Act. The government therefore asked the Chief Medical Officer (the main government adviser on matters of health and public health) to convene an expert group to consider the new ethical issues. T he report from this group was published in 2000. The group conceptualized its task in the following way in the chapter on the ethical issues: T he purpose of this C hapter10 is not to revisit that earlier debate. It focuses only on whether research involving the extraction of stem cells from embryos, or the creation of embryos for such research using cell nuclear replacement, raises any new ethical issues, as the terms of reference of the Expert Group required.11 In particular it considers whether these new possibilities for research cross a new moral boundary, representing an unjustified extension of the uses of embryos already authorised by the 1990 A ct.12 (4, p. 37, author emphasis)

10 �������������������������������� A nd presumably the whole report. 11 �������������������������������������������������������������������������������� It is questionable whether this is actually what the T erms of R eference require since the relevant sections there talk about assessing the risks, benefits and any alternative approaches that might be pursued: and in light of this to consider whether there are any new ethical and social implications. N ew ethical implications are not the same as new ethical issues. T he issue might be the same, but if the balance between positive and negative ethical considerations shift the ethical implications might be quite different. 12 ������������������������������������������������ T he H uman F ertilization and Embryology A ct 1990.

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In regard to cell nuclear replacement the report concludes, using the language of necessity also used in the HF E A ct, that: For some people, particularly those suffering from the diseases likely to benefit from the treatments that could be developed, the fact that research to create embryos by cell nuclear replacement is a necessary step to understanding how to reprogramme adult cells to produce compatible tissue provides sufficient ethical justification for allowing the research to proceed. (4, p. 40, author emphasis)

T he group therefore recommended that the allowable purposes in the HF E A ct should be extended to allow for the derivation of stem cell lines and that the use of SCNT to produce embryos for research should be allowed. T he government responded positively to these recommendations and they were implemented through the HF E (R esearch Purposes) R egulations in 2001 (5). Throughout this development three main positions can be identified in the public debate, a pro-life position focusing on the right to life of the embryo, a pragmatic13 position endorsing what we could call ‘the special respect but no rights’ view, and a radical position claiming, on consequentialist, ultra-liberal or libertarian grounds, that embryos warrant no special status whether in respect or rights terms. O ne difference between the U K debate and the debate in some other European countries is that the concept of ‘dignity’ has not been prominent in U K discourse, probably due to the fact that Kantian philosophy has never had a major influence on UK philosophy, legal scholarship or jurisprudence. Many UK philosophers claim not to be able to understand the concept of dignity, or to find it so vague that it has no normative import. U ntil 1990 it was at times unclear which of the three positions would ‘win’, or perhaps more accurately exactly which of the possible set of implications of the middle position would be implemented in legislation. Because of the close connection between embryo research and IVF practice it was always unlikely that research would be completely banned, but the U K might have ended up with a prohibition on the creation of embryos for research and a more narrowly circumscribed set of allowable purposes for research. A fter the passing of the HF E A ct in 1990 it has been clear that the two radical positions have been rejected as the basis for public policy, although they persist in the public debate. W hat decides whether a new research or therapeutic option will eventually be allowed is the kind of analogical reasoning employed by the CMO’s expert group in the quote below: …whether these new possibilities for research cross a new moral boundary, representing an unjustified extension of the uses of embryos already authorised by the 1990 A ct. 13 ���������������������������������������������������������������������������������� Pragmatic here used in its normal meaning, not to describe a particular school of philosophy.

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Note: Where crossing new moral boundaries is understood as unjustified extension of the uses already allowed. Given this approach after 1990, allowing the creation of embryos by SCNT can be seen as an almost inevitable side-effect of the original decision in 1990 to allow embryo creation, given that the embryos produced are similar. How is Respect for the Embryo Expressed in UK Regulation? T he main expression of the notion of respect for the embryo in U K regulation is the simple fact of the existence of a restrictive regulatory scheme. A lthough the permitted uses of embryos are wider than in many other jurisdictions they still significantly curtail the use of embryos. To put it very simply embryos can only be created and used for what is perceived as valuable and non-frivolous goals, and the values that are measured when deciding whether something counts as a valuable goal are circumscribed to what we could call scientific and healthcare values. T his for instance entails that a license cannot be issued for a valuable commercial purpose, even if it was objectively more valuable than some of the health research projects where licenses have been issued. It might also be possible to conceptualize the 14-day limit for embryo experimentation as a way to express respect for the embryo, or if we are convinced by the individuation argument an expression of respect for the embryonic individual proper that can only be said to exist from this time. From the point of view of decision making a regime built on the respect view has two advantages. It is more flexible than a view built on a right to life of the embryo, and it can justify the creation and eventual discarding of supernumerary embryos during IVF procedures which is difficult to justify on a right to life view. But its flexibility is also the main problem of the approach. Exactly what does respecting the embryo prohibit the profession from doing, apart from totally frivolous acts? An obvious criticism of the UK position is that it is difficult to keep together the concept of respect and the legal possibility to create and destroy for the purposes of others. Is it not a basic aspect of respecting another individual that someone refrains from killing them, or at least only kills on the request of the individual in question? T his argument, which can also be found in the U K debate, is correct in the sense that one, very important way of respecting a biological entity is by not destroying it, but it overstates the case in various ways. T he recent discussion of the manner in which S addam H ussein was executed for instance shows that it might be possible to make sense of a distinction between a respectful and a nonrespectful execution of the death penalty.

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Conclusion It is clear that in the U K the law has not and will not adopt a position based on a conception of rights of the embryo. T his does not mean that anything goes. T he U K probably has the world’s most exacting licensing, inspection and audit regime for IVF clinics and researchers using embryos in their research. A nd within the scheme embryos enjoy a high level of protection (the issue of IVF clinics ‘losing’ or ‘mislaying’ embryos is, for instance taken very seriously). However, the dominant analogical approach to analyzing new issues will probably in the long run give rise to a development towards a more and more liberal regulatory regime with regard to both treatment and research. T he only thing that could lead to embryo derivation by SCNT for research purposes to be banned in the U K is the complete failure of the technique as a research tool, but in that case a ban would not be needed. Bibliography D epartment of H ealth (2000) ‘S tem C ell R esearch: M edical Progress with Responsibility: A Report from the Chief Medical Officer’s Expert Group R eviewing the Potential of D evelopments in S tem C ell R esearch and C ell Nuclear Replacement to Benefit Human Health’ (London: Department of H ealth). D epartment of H ealth (2000) ‘Government R esponse to the R ecommendations made in the Chief Medical Officer’s Expert Group Report Stem Cell Research: M edical Progress with R esponsibility’ (London: D epartment of H ealth). H olm, S . (2003) ‘T he ethical case against stem cell research’, Cambridge Quarterly of Health Care Ethics, 12:4, 372–383. H olm, S . (2004) Does the End Sanctify the Means? Cloning in Biomedical Research and Reproduction (Bonn: Bonn U niversity Press), 427–436. H olm, S . (2005) ‘Embryonic stem cell research and the moral status of human embryos’, Reproductive Biomedicine Online, 10: S upp 1, 63–67.

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Informed C onsent, T rust and Virtue in C zech M edicine Jiri Simek, Eva Krizová, Lenka Zamykalová, Marie Mesanyová

Introduction A ncient R omans used to say ‘historia magistra vitae’. H istory can be seen as a big sociology laboratory which proves or disproves various theoretical thesis and concepts. F or example, the history of the rise and fall of the R ussian F ederation of S oviet S ocialist R epublics and its satellites disproved the main concepts of egalitarian M arxist philosophy and economy. Profound societal changes in European post-communist countries and the ongoing process of democratization of these countries can test some concepts used traditionally in W est Europe. S tephen T oulmin (1982) wrote that ‘medicine saved the life of ethics’ and we can agree that medicine which cannot be concerned with abstract speculations and which needs decisions done here and now can also test the applicability of some theoretical concepts. In the last 17 years several post-communist countries, now members of the EU , accepted many rules and concepts in their healthcare, which were common in traditional EU countries. T he implementation of many rules in legislation and in everyday practice was not simple. T here were differences in understanding and sometimes even misunderstandings of some concepts. These difficulties can be understood as signs of retardation of development in post-communist countries. But it is also possible that some difficulties in the application of traditional Western concepts could be the occasion for rethinking them and asking questions on limits of their universality. T he European U nion is multicultural; each region has its cultural specificity. Therefore also the value systems and perception of ethical principles is different in various countries (Leino-Kilpi et al. 2003). F or this reason many differences in the organization of healthcare systems across Europe can be seen. It is another justification to ask questions about the limits of traditional concepts. Survey of Attitudes of Czech Patients T he concept which was found to be most controversial and which became the starting point of the considerations is informed consent. In developed countries informed consent is generally accepted as a tool for asserting the autonomy of patients. It is based on the generally accepted liberal concept of the self-determination of

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individuals who follow their own individual goals. M aybe for this reason in ethnic groups with different cultures there can be difficulties in the application of informed consent (M cC abe et al. 2005). In this text some reflections about experiences with informed consent in a post-communist country are presented: this means a country in a transition period. The reflections are based on results of the research project ‘Informed consent in the C zech R epublic’ carried out in 2004–2006 at the Institute for M edical Ethics and N ursing T hird F aculty of M edicine, C harles U niversity in Prague. It was sponsored by the Grant A gency of the C zech R epublic. T he C zech R epublic is a typical post-communist country so it serves as a good example. F or centuries the C zech Lands were an essential part of Europe, their culture tightly bound with that of other European countries. Its development was interrupted for 50 years by totalitarian regimes. T he C ommunist regime was characterized by a strong paternalism of political and state administration. S ome positive human rights such as a right to healthcare, to a job and to accommodation were fairly met. S ocial security was available at a good level. The cost for this was almost complete lack of civic freedoms. N egative human rights with regard to a right to free speech, to free association and to free movement were abolished. F rom an ethical point of view the most devastating effects of that regime were the breakdown of public debate and the disregard of language. F rom 1989 the C zech R epublic has been a country in transition from a totalitarian to a democratic system. T he restoration of democratic institutions was quite a simple task, much more difficult is the restoration of civic society, the cultivation of political culture and the exercise of public debate. T he main obstacle in democratic development is the inability of people to provide everyday democratic negotiation in common life. C zech society is traditionally quite egalitarian with a strong aversion to big social differences (Patocka 1992). These tendencies have been strengthened by the communist regime. In 1989 Czech healthcare was strongly marked by paternalism and sometimes even the authoritarianism of physicians which was due to the ascribed development in previous years. Elements of democratic negotiation were introduced into C zech healthcare only gradually. In 1992 an Ethical C ode of the R ights of Patients (Haskovcova 1996) was drawn up and officially adopted by the Central Ethical C ommittee of the M inistry of H ealth. In 2001 the European C onvention on H uman R ights and Biomedicine (C ouncil of Europe 1999) was accepted by the C zech Parliament. A cceptance of the C onvention brought new items into the C zech Legislation and gave new directions to its development. In the early 1990s the main problem identified in Czech healthcare was communication between physicians and patients. T elling the truth was regarded as the main part of communication and ‘medicine of secrecy’ was identified as one of the biggest faults of the system (Haskovcova 1994). Since that time great progress has been made and even if not all physicians provide adequate information to their patients, it can be concluded that Czech healthcare has definitely left the ‘medicine of secrecy’. In following this course the most active and progressive were paediatricians and oncologists, but other specialists and general practitioners also started to inform their patients better.

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Surprisingly shared decision making was not an issue at that time. University hospitals introduced informed consent as a way to document a patient’s consent to more invasive examination and therapy procedures. It was done mainly thanks to regular contacts with W est European physicians and healthcare management. In smaller hospitals and healthcare facilities no signs of any attempt to introduce such a procedure were observable. S tarting from about 2002 informed consent was also slowly introduced in smaller and rural hospitals���������������������� (Zamykalováand Simek 2007��������������������������������������������������������������������������������� ). There were two stimuli for its introduction. At first accreditation processes for C zech hospitals were introduced and an essential part of accreditation conditions was the implementation of informed consent in clinical work. Second, the just mentioned acceptance of the European C onvention on H uman R ights and Biomedicine initiated progress in the C zech healthcare legislation and the legal introduction of informed consent was part of this process. N evertheless changes in legislation came very slowly. It is true that we can find the term ‘informed consent’ in A ct no. 79/1997 on drugs (§ 33 and § 34 – C linical T esting of H uman D rugs and Protection of S ubjects of T ests), but it had nothing to do with clinical medicine. In clinical medicine the legal provision of informed consent was introduced as late as 2007 in the M inisterial D ecree N o. 64/2007 on healthcare documentation. T herefore accreditation processes represented more important stimuli for the implementation of the procedure of informed consent in C zech healthcare. T he implementation of informed consent is an example of a ‘reversed’ process in the development of rules. R egulatory and legal measures from the EU were accepted first and then discussion started about their meaning and sense. No wonder that various versions of the functioning of informed consent are found. Quite often informed consent is understood as a tool for the protection of physicians from patients’ complaints and litigation. It is not rare that informed consent is presented as merely a matter of formalities and therefore patients sign informed consent sheets without any further explanation during admission process in the hospital. T he new D ecree on H ealth documentation aroused a lively discussion about duties stemming from the decree regulating informed consent procedure and documents. T he dominant issues in the debate are the formal aspects of informed consent – the length of texts, its content, its storage in charts, which therapeutic and diagnostic procedures are subject to this provision. D iscussants are mainly healthcare providers; interest in the lay public is quite low. The low interest of the lay public in informed consent was confirmed in interviews with physicians, nurses and patients. T he majority of patients understood signature of the informed consent sheet as merely a formality. T hey wished to have a conversation with their physicians and they did not feel that conversation with the physician is necessarily linked to the signature of a document. In conversations with their physicians they did not seek information first. Information is available on the internet and also in books and journals. Czech physicians quite often complained that patients were not interested in medical information which they tried to give them. Instead, patients demanded the interest of physicians in their case, preferably personal interest and not only in their body and disease. T hen

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they asked for assurance. Patients are usually full of anxiety and they need to be reassured that the physician will do everything that they can. S hared decision making was not an issue raised during interviews with patients. They mainly stated that in fact there is no choice. ‘If I wish to live, to work and to be useful in my family, I must follow physician’s advice’. T he common issue underlying everything is trust. A statement about trust or at least the question of whether the physician is trustworthy was the most common topic in interviews. O ur general impression was that patients behave as if the English word ‘consent’ had the original Latin meaning – ‘con –sentire’, ‘feel together’����������������������������� (Zamykalová and Simek 2007)�. O f course, this is only a crude summary. In fact all possible versions of physician–patient communication are to be found. There are ‘clients’ who ask for information and then agree to therapy in the same manner as a machine being repaired. S ome patients wish to have detailed information about everything, others deny any co-operation. T he most frequent or ‘typical’ attitudes of C zech patients have been ascribed here. In 2004 a survey was conducted among the C zech lay population. Via an agency 1,619 people were addressed, a representative set of the population of the C zech R epublic. O ne open question and four questions with the option of giving an answer on a four point scale were presented: definitely yes/probably yes/probably no/definitely no (�������������������������������������������������� Krizova and Simek 2007)��������������������������� . H ere are a few data from three questions, because data from this survey are in accordance with results of the interviews with patients. The first question was an open one: ‘How do you understand “informed consent”? Express it in your own words’. Only 42% of respondents gave the correct answer (filled the criteria of both ‘informed’ and ‘consent’). At least 31% of respondents admitted that they did not understand the term at all. T he second question was: ‘“I consent to the performance of an operation of the kind and of the extent that the surgeon shall decide according to the need that emerges during the operation”. Do you find this kind of formulation acceptable?’ Surprisingly, 65% of respondents answered definitely yes or probably yes. To test the rationality of respondents the third question was asked: ‘Sometimes during gynaecological operations or appendix operations surgeons unexpectedly find it necessary to remove an ovary. Do you think that it is right if surgeon takes out an ovary without the prior express consent of the patient?’ And here only 40% answered definitely yes or probably yes. Discussion How can the experiences be interpreted? The first idea could be that the Czech R epublic is still behind in its development and that it is only a matter of time until the C zech public will appreciate informed consent procedure adequately. A nother possibility is to ask some further questions.

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It looks as if Czech patients do not need informed consent. Maybe this is the reason why they do not understand the role of this imported procedure. Informed consent has its origin in conflicts between physicians and patients and even in litigation between them (A ppelbaum and M eisel 1987). Informed consent is a good solution to such conflicts. As a legal instrument informed consent impels both to sit down together and search for a common solution. It is hard to recall notable conflicts between physicians and patients in the Czech Republic. Czech patients complain quite a lot, but litigation is rare. In the interviews patients emphasized trust as an important part of their relationship with physicians. What kind of experiences are behind this attitude? In the totalitarian regime public control was weak. Politically strong management could work inefficiently; it enabled the existence of bad institutions. Some schools, shops, and hospitals worked well, some others functioned much worse. Of course, the outcomes of good institutions were better and differences were really big. Education and healthcare were free, so the most important question was about the quality of a given school, hospital or physician in charge. F rom this perspective the division line is not between patients and physicians but between well and badly working healthcare facilities. Information about the objective outcomes of C zech hospitals (mortality rates, waiting lists, and so on) is still secret. Patients themselves must assess the quality of healthcare providers. S o assessment of the quality of a physician is much more important than information given. U nder these conditions the claim for a good and sensitive expert physician survived. Czech patients know that a physician of a high quality necessarily is not paternalistic. T hey can be attentive and they can use ‘hermeneutic competence’ together with ‘expertness’. A n important reason for the non acceptance of informed consent by C zech patients could be their wish to have physicians of high quality. Informed consent is a good instrument to preserve the self-determination of patients accessing medical technology, but the question of the quality of physicians should not be forgotten. F rom the C zech perspective both are equally important. Preserving the right of self-determination is a problem in post totalitarian C zech medicine and a lot of work is required in this area. The almost forgotten question on the personality traits of a good physician should be asked too. So it can be believed that Czech patients have good reason not to fully accept the original W estern meaning of informed consent. F rom this perspective it can be accepted that in the C zech R epublic informed consent is predominantly a formal affair. T hrough their signatures patients simply confirm that they trust their physicians or healthcare facilities. Theoretical Considerations In theoretical reflections of the process it is necessary to refresh an old problem from medical deontology: what does it mean to be a physician of high quality? In which physician can the contemporary patient trust? In the last decades many things have changed in medicine therefore it is useful to reopen the debate.

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It is a difficult task to discuss the problem of a good physician in a world where there is no agreement about good and evil. M oreover medicine is a highly demanding profession and therefore the claims of patients first of all must be realistic. N evertheless it is possible to summarize old and new demands of the profession and outline some traits, which may be seen as necessary to be a good physician in contemporary medicine. T here is no doubt that a good physician must be an excellent expert in biological medicine. T o become a medical expert requires a certain level of intelligence, good memory and a strong will to learn hard and then, later on, to also work hard. A physician needs sound reason for clinical thinking and the flexibility necessary for lifelong learning. W illingness to help suffering people is a traditional constituent of a physician’s personality. In contemporary medicine it is more important to have special skills for the appropriate use of medical technology than compassion. S ome other demands on the relationship with a patient become more prominent. F irst of all powerful physicians must respect the patients’ will and at the same time they must not give up their own conscience. S o they must be able to ‘act so as to use humanity, whether in his own person or in others, always as an end, and never merely as a means’. It is a very difficult task to respect patients’ end goals in medicine, which is based on biological laws (and business). Physicians must learn to accept that patients can have a very special set of values and they must learn how to make agreements with patients. F or this purpose two strengths are necessary: ability to listen and ability to explain. Listening needs interest and attention. Explanation represents a special problem in medicine. It is necessary to translate expert knowledge into the common language of a given patient. Dirk Lanzerath (Lanzerath 2003) uses the term ‘hermeneutic competence’ and this strength can not be overestimated in today’s world. Empathy and emotional neutrality are closely connected to respect for a patient’s self-determination. Physicians should be able to understand what is going on in a patient and should abstain from any judging a patient’s behaviour. What are the ethical theories that would fit these experiences? Kant’s universal categorical imperative is fairly applicable. H abermas’ discursive ethics can help to understand that in this world and in medicine it is necessary to negotiate many things. But it seems to us that the best way to grasp the problem of defining a good physician is virtue ethics. The behaviour of physicians cannot be interpreted in terms of decision making only. Not only skills but also attitudes and relationships are important. Therefore this phenomenon can be better ascribed in terms of virtues. M any A ristotelian virtues are applicable here. H ealthcare providers should have courage, justice, generosity. They should have some virtues which Aristotle did not know. At least some of them that can be defined according to the same scheme. Empathy represents the mean between compassion and dispassionateness. Emotional neutrality is an attitude in between personal engagement and rejection. Prosocial attitudes represent the mean between dependency and detachment. H ermeneutic competence is the mean between telling everything and telling nothing.

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M cIntyre’s effort to introduce virtues (M cIntyre 1985) in contemporary philosophical ethics aroused many objections (for example, T ugendhat 1993). McIntyre himself did not believe that his theoretical reflections would be widely accepted. In the last chapter of his book he calls for the creation of local communities which would keep virtue ethics. Physicians (and nurses) constitute distinct professional communities. S ome guiding principles of these communities are different to those principles common in the majority of society. An important principle in healthcare is beneficence. It means ‘act in the best interest of your patient’. It clearly differs from a common rule of market (and consumer) society ‘following your own interests you will help the well being of the whole society’. A good member of a medical community should possess special skills or strengths. Here McIntyre’s definition of virtues can be applied in close connection with the practices of a given profession or community. Eventually C hris Gastmans et al. (1998) in their effort to grasp the fundamentals of nursing ethics came to similar conclusions. T hey understood caring behaviour as the integration of virtue and expert activity. Conclusions T he survey done in the C zech R epublic in recent years has shown that C zech patients did not accept informed consent in its original meaning. T his could be due to retardation of democratic processes in a post-communist country. A n alternative interpretation leads to an understanding this non acceptance as call for physicians of high moral quality. In this context we should consider some revival of medical deontology and virtue ethics. F unding: T he research project is supported by the Grant A gency of the C zech R epublic (GA CR ), contract N o. 406/07/0257. References A pplebaum, P.S . and M eisel, A.�������� (1987) ������� Informed Consent: Legal Theory and Clinical Practice (New York: Oxford University Press). C ouncil of Europe (1999) Convention on Human Rights and Biomedicine. C onvention for the Protection of H uman R ights and D ignity of the H uman Being with regard to the A pplication of Biology and M edicine. . Gastmans, C ., de C asterle, D . and S hotsmans, P. ������������������������������ (1998) ‘N ursing considered as moral practice: A philosophical-ethical interpretation of nursing’, Kennedy Institute of Ethics Journal, 8, 43–69. Haskovcova, H. (1994) Lekarska etika ��������������������������������� [M edical Ethics] (Prague: Galén�� ������� ). Haskovcova, H. (1996) Práva pacientů [T he R ights of Patients] (H avirov: Nakladatelstvi A. Krtilove).

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Leino-Kilpi, H ., Välimäki, M ., D assen, T ., Gasull, M ., Lemonidou, C .P., S cott, A ., S chopp, A ., A rndt, M . and Kaljonen A . (2003)��������������������������� ‘Perceptions of autonomy, privacy and informed consent in the care of elderly people in five European countries: C omparison and implications for the future’, Nursing Ethics, 10:1, 58–66. M cC abe, M ., M organ, F ., C urley, H ., Begay, R . and Gohdes, D .M . (2005) ‘���� T he informed consent process in a cross-cultural setting: Is the process achieving the intended results?’, Ethnicity and Disease, 15, 300–304. M cIntyre, A . (1985) After Virtue: A Study in Moral Theory ��������� (London: Duckworth). Patocka, J. (1992) Was sind die Tschechen? Kleiner Tatsachenberich und Erklärungsversuch ������������������� (Prague: Panorama). T oulmin, S . (1982) ‘H ow medicine saved the life of ethics’, Perspectives in Biology and Medicine, 25:4, 736–750. T ugendhat, E. (1993) Vorflesungen über Ethik (Frankfurt am Maine: Suhrkamp). Zamykalová, L. and Simek, J. (2007) ‚Informovany souhlas v praxi na ceskych klinikach. �������������������������������������������������� [������������������������������������������������� Informed consent in practice at C zech clinics���� ]��� ’, Prakt. Lek, 87:7, 406–413.

PART III ETHICS AND SOCI ETY

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A merica and the C ase for Just W ar A gainst Iraq C hris J. D olan

T his chapter applies jus ad bellum principles in the just war tradition to the Bush administration’s case for war against Iraq. Just war is grounded on the concept that war must be restrained and directed toward establishing a lasting peace. S t A mbrose and S t A ugustine believed that C hristians have a moral obligation to use force to protect the innocent (A mbrose 2002; A ugustine 1972). S t T homas A quinas put forth the argument that war should only further ‘the advancement of good or the avoidance of evil’ (A quinas 1952). But with the rise of the sovereign state, scholars recognized that universal principles are unknowable. Vitoria argued, ‘there is no inconsistency, indeed, in holding the war to be just on both sides’ and asserted that while warring parties must appeal to just cause, this does not necessarily mean that one is justified in waging war (Vitoria 1934). Grotius supplied legal justification for what would come to define contemporary interpretations by contending that the causes invoked for war may not necessarily be equivalent to the causes that prompted the hostilities (Grotius 1999). A lthough A yala agreed that a just war must be initiated by a legitimate authority he claimed that rulers must also possess rightful intentions, which must include ‘an entire absence of passion to do hurt and of vengeful savagery and of the lust of conquest’ (A yala 1912). S uárez added that a just war must represent a proportional response to the wrong a state is attempting to right (S uárez 1944). T he dilemma is ‘simultaneous ostensible justice’ or the idea that war could appear just to all sides parties (Johnson 1998). Just war is a living tradition because it is linked to theological, philosophical, and secular claims about violence and peace. T he goal here is to tap this tradition, which at times allows for the use of force with limitations, in observing and assessing jus ad bellum considerations in the Bush administration’s case for war against Iraq. The Case for War The US-led invasion of Iraq is an attractive case to assess against the framework of just war theory. In general, the just war tradition has developed with a rich historical significance when it comes to evaluating the moral and political implications of warfare. It also allows scholars to observe the moral strength of the A merican case

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for war against Iraq with the jus ad bellum principles that have developed over time. Last R esort demands that a state exhaust all available measures before using force (R egan 1996; Glover 2001; Baldwin 1999/2000; W alzer 1977; Johnston 1999). A s W alzer contends, ‘It is obvious that measures short of war are preferable to war itself whenever they hold out the hope of similar or nearly similar effectiveness’ (W alzer 1977, 81). A ccording to W iegel, Last R esort is a ‘moral threshold crossed by political leaders … only with great reluctance and trepidation’ (Wiegel 1992). But when confronted with an imminent attack, it is not unreasonable to suggest that a state is justified in waging a preemptive war. O nly hostile intent coupled with a capacity to do immediate harm on the part of the aggressor represents a credible threat (C rawford 2003a). A s W alzer suggests, ‘states can rightfully defend themselves against violence that is imminent but not actual; they can fire the first shots if they know themselves to be attacked’ (Walzer 1977, 74–75). H owever, simple fear or suspicion may lead a state to interpret adversaries to the point of hypervigilance where threats are overblown and war is unjustifiably placed ahead of other available mechanisms. A distinction must be made between credible threats and irrational fear. D uring the Cold War, the likelihood of nuclear warfare dissuaded the US and USSR from directly engaging one another on both conventional and unconventional levels; annihilation was allayed when it was realized that deterrence was the only morally acceptable strategy (Goodwin 1982; C arr 1945; M earshimer 1994/1995; M orgenthau 1995; W altz 1979). A s C rawford contends that the threshold separating credible threats from simple fears should be lowered in A merica’s wars against terrorists and rogue states, the threshold for credible fear cannot be too high where those who may be about to do harm cannot be stopped (C rawford 2003a). T he Bush administration claimed that failing to confront S addam H ussein increased the danger and framed its case for war in terms of urgency and uncertainty: ‘The greater the threat, the greater the risk of inaction – and the more compelling the case for taking anticipatory action to defend ourselves, even if uncertainty remains as to the time and place of the enemy’s attack’ (Bush 2002d). F or Bush, not using force was calamitous: ‘we have an urgent duty to prevent the worst from occurring’ (Bush 2002a). In effect, the president claimed that 12 years of sanctions, no-fly zones, and weapons inspections could not guarantee Iraqi WMD compliance. T he A merican argument was not only made prior to the passage of UN Resolution 1441, it flew in the face of the International Atomic Energy A gency, which declared that Iraq no longer possessed a nuclear programme (U nited N ations S ecurity C ouncil 2002). T he US also downplayed the utility of deterrence and containment in dealing with S addam’s Iraq. Bush’s National Security Strategy determined ‘deterrence based solely on the threat of retaliation is less likely to work against leaders of rogue states more willing to take risks, gambling with the lives of their people, and the wealth of their nation …’ (Bush 2002c). Bush even declared that ‘Containment is not possible when unbalanced dictators with WMD can deliver those weapons or missiles or

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secretly provide them to terrorist allies’ (Bush 2002d). H owever, the mere labeling of leaders as rogues or tyrants does not prove that they are equally grandiose in their design or that they are immune to the constraints of a countervailing power. N o state in Bush’s ‘axis of evil’ came close to equaling the global threats A merica confronted from H itler’s Germany, S talin’s USSR , or M ao’s C hina, all of which wielded significant power on the international landscape (Glad 2004). In addition to war as a last resort, A quinas has argued that ‘a just cause is required namely that those who are attacked deserve it for some wrong they have done’ (A quinas 1952). Grotius claimed that just cause must be declared publicly for all to judge, thereby imposing moral restraints on a legitimate authority’s claim to serve as the definitive arbiter (Christopher 1999). Although aggressive action is unjust, A rticle 51 of the UN C harter holds that nothing ‘shall impair the inherent right of individual or collective self-defence if an armed attack occurs against a member of the U nited N ations’ (U nited N ations C harter). The use of preemptive force may be legitimate when invoked to obviate an imminent threat that has yet to strike. Wirtz and Russell describe preemption as ‘upon detecting evidence that an opponent is about to attack, one beats the opponent to the punch and attacks first to blunt the impending strike’ (Wirtz and Russell 2003). Grotius claims that while the use of preemptive force against attacks still in preparation is justified, the right is not absolute: ‘The danger [to be defended against] must be immediate, and as it were, at the point of happening … If my assailant seizes a weapon with an obvious intention of killing me, I admit too that I have a right to prevent the crime’ (Grotius 1999, 2, 1–2, 1) Preventive war is the use of force to eliminate a perceived threat that is not yet imminent (W alzer 1977, 21). W alzer claims that threats must represent ‘a manifest intent to injure, a degree of active preparation that makes that intent a positive danger, and a general situation in which waiting, or doing anything other than fighting greatly magnifies the risk’ (ibid., 81). A lthough he asserts that just war legitimately supports preemption, W alzer puts forth a ‘moral necessity of rejecting’ preventive war since it is based on suspicion (ibid., 81). R egarding the use of force against Iraq, Iraq had to possess hostile intentions and be in active preparation to engage in aggressive action against the US and its allies. However, uncertainty is a significant obstacle as we sometimes only have probable rather than certain knowledge of hostile intent and active preparation. Evidence suggests that the Bush administration was certain in its conviction that Iraq had hostile intentions by claiming that it demonstrated an ‘unrelenting hostility toward the U nited S tates’ and was a ‘grave and gathering threat’ (CIA 2002). Bush argued Iraq ‘aids and protects terrorists, including members of A l Qaida’ and that ‘you can’t distinguish between Al Qaida and Saddam when you talk about the war on terror’ (Bush 2002b; Bush 2002e). T he administration was also certain in its confidence that Iraq was in active preparation to produce weapons of mass destruction (WMD ): ‘F acing clear evidence of peril, we cannot wait for the final proof – the smoking gun – that could come in the form of a mushroom cloud …’ (Bush 2002a). In referring to Saddam’s nuclear capabilities, Bush even claimed

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that Saddam was ‘six months away from developing a weapon’ (Milbank 2002). Vice-President R ichard C heney further asserted: ‘there is no doubt that S addam Hussein now has weapons of mass destruction …’ (Cheney 2002). Secretary of D efense R umsfeld even boldly asserted that: ‘A ny country on the face of the earth with an active intelligence program knows Iraq has weapons of mass destruction’ (C ullihan 2002). In making its accusations, the administration weakened the imminence criterion in Just C ause by considering unaccounted for WMD as imminent threats. A ccording to the United Nations Monitoring, Verification, and Inspection Commission (UNMO VIC ), ‘up until they were withdrawn from Iraq on 18 M arch – the day before the armed action began – U nited N ations inspectors had found no continuation or resumption’ of a WMD programme in violation of its international obligations (UN S ecurity C ouncil 2003). Blix claimed that the US jumped to ‘the conclusion that something exists just because it is unaccounted for’ (UN S ecurity C ouncil 2003). W ar also cannot be just if it is not waged by legitimate authorities (C oates 1997; Krasner 1999). W hile the principle refers to state institutions as legitimate authorities, legitimacy does not primarily derive from national interests. In particular, a state’s right to wage war has also come to be drawn from its international legal commitments to maintaining global peace and collective security (C oates 1997, 126–127). As Grotius claimed, only ‘by the law of nations it is right to take up arms in order to weaken a rising power, which, if it grew too strong, might do us harm …’ (Johnson 1998). A lthough a state can legitimately wage a preemptive war against a threat with hostile intent and in active preparation to attack, in the absence of an imminent threat or an actual armed attack the use of offensive force must be authorized by the UN . T he UN C harter obligates that M ember S tates ‘settle their international disputes by peaceful means in such a manner that international peace and security, and justice, are not endangered’ (UN C harter, A rticle 2, S ection 3). F urthermore, ‘A ll M embers shall refrain in their international relations from the threat or use of force against the territorial integrity or political independence of any state …’ (ibid., Section 4). To resolve disputes that may lead to armed attacks, Member S tates must bring their disagreements before the S ecurity C ouncil, which can authorize states, coalitions, or regional organizations with ‘all necessary means’, including sanctions, embargoes, or force to resolve a conflict (ibid.). T he formal endorsement of the UN C harter by M ember S tates does not resolve the question of where legitimate authority in waging preemptive war resides. O ne position is that the S ecurity C ouncil retains exclusive authority, since it represents all sovereign states. A second position holds that the right to wage an offensive war is vested primarily, although not exclusively, in the S ecurity C ouncil given that regional organizations and other informal coalitions can legitimately act in an autonomous fashion. Ramsey refers to the lack of an ‘exercise of real power’ by the S ecurity C ouncil and W alzer cites the failure of the UN to at times act in a ‘willing and able’ fashion (C oppetiers and F otion 2002). Bush held a third position: ‘when it comes to our security, we really don’t need anybody’s permission’ (Bush 2003).

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As much as Iraq had to fulfill its commitment to disarm, the US had to fulfill its own commitment to adhere to UN restrictions on authorizing war. A rticle 39 gives the S ecurity C ouncil the power to ‘determine the existence of any threat to the peace, breach of the peace, or act of aggression and shall … decide what measures shall be taken … to maintain or restore international peace and security’ (UN Charter, Article 39). In the absence of an armed attack or an imminent threat, the US does not possess Legitimate A uthority to unilaterally enforce UN resolutions against Iraq unless the C ouncil determines there has been a breach or explicitly authorizes military force. M oreover, since Iraq did not carry out or possess the means to engage in an armed attack on the US or its allies, an appeal to self-defence in Article 51 does not hold. Resolution 1441 did supply ‘Iraq … a final opportunity to comply with its disarmament obligations’ (UN S ecurity C ouncil 2002). T he resolution further stated that should Iraq fail to comply with disarmament, the C ouncil would: convene immediately … to consider the situation and the need for full compliance with all of the relevant C ouncil resolutions in order to secure international peace and security … [and] … recalls, in that context, that the Council has repeatedly warned Iraq that it will face serious consequences as a result of its continued violations of its obligations. W hile the resolution did not authorize military force, if Iraq did not take its ‘final chance’, ‘serious consequences’ would follow (ibid.). R ightful intentions involve genuine goals and the means by which they are achieved (Christopher 1999). St Augustine warned against the influence of personal intentions in waging warfare: ‘the real evils of the war are love for violence, revengeful cruelty, fierce and implacable enmity, wild resistance, and lust for power’ (Augustine 1972, 22, 74). Any state can attack another with just cause, but not go to war intending to occupy territory or exploit resources. O n the whole, a state’s intention to wage war should be directed at promoting just cause (Coppetiers and Kashnikov 2002). It cannot be overlooked that Iraq possesses the world’s second largest proven oil and natural gas reserves (EIA 2004). Prior to the war, Vice President C heney’s Energy Task Force declared that ‘The [Persian] Gulf will be a primary focus of US international energy policy’ (W itt and Kemper 2002). A report by the C ouncil of F oreign R elations (CFR ) and endorsed by the Bush administration’s D epartment of Energy asserted that ‘the US should conduct an immediate policy review toward Iraq including military, energy, economic and political/diplomatic assessments’ (M orse 2001). O n 16 January 2003, the administration met with oil executives to plan the post-war expansion of Iraqi oil production (W alsh, M acalister et al. 2003). A hmad C halabi, leader of the Iraqi N ational C ongress, was even quoted as saying: ‘A merican companies will have a big shot at Iraqi oil’ (C ollier 2002). Grotius identified likelihood of success as a force that states had to contend with when making the decision to go to war or in response to an ongoing attack (Grotius 1999, 2, 24, 280–284). T he problem lies with the term ‘success’, which can mean almost anything (Coates 1997; Regan 1996, 17–18). The US appeared confident that the military would succeed on the battlefield and that Iraqis would aid coalition

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forces. O n 6 F ebruary 2003, C heney contended, ‘the read we get on the people of Iraq is there is no question they would like to get rid of Saddam Hussein and they will welcome as liberators when we come to do that’ (Milbank 2003). T he probability of a stable Iraq after S addam would be determined by two elements. F irst, the military presence during the occupation would have to be strong and large enough to secure Iraq’s borders, patrol the cities, conduct raids into insurgent areas, and deliver humanitarian assistance to civilians. A rmy C hief of Staff General Eric Shinseki and Army Secretary Thomas White argued that a smaller force would make it difficult to stabilize Iraq and provide humanitarian relief. T hey favoured roughly 400 000 troops, which was far more than the 75 000 troops R umsfeld was willing to provide (F allows 2004). It was highly debatable as to whether or not the 130 000 US troops the administration deployed would serve as an effective occupational authority to win over the populace and construct a democratic Iraq (A nderson, Bennis et al. 2003; Norton-Taylor and MacAskill 2004; W right and Graham 2004). S econd, the campaign to overthrow S addam would entail a large-scale military operation, in which A merica would have to assume most of the burden without the UN . A mong the 32 nations contributing 154 363 combat troops to the ‘coalition of the willing’, US troops numbered 130 000 or 84% of the total strength. The remaining nations contributed a total of 24 363 troops or 16% of the overall force (W right and Graham 2004). T he invasion was not only US -led, it had an A merican face. M oreover, any dwindling of the coalition in the post-invasion phase could complicate the job of establishing a lasting peace in a post-S addam Iraq (W right and Graham 2004). For what does it mean to be successful when it is difficult to perceive how destructive a war will really be? A ccording to Paul R amsey, a state achieves legitimate proportionality when ‘more good will be done than undone or a greater measure of evil prevented’ (R amsey 1968). F or James T urner Johnson, applying proportionality means ‘determining what are the upper limits of the use of force that may rationally be employed’ in achieving just war goals (Johnson 1984). T hus, the goal is to apply the minimum force necessary to achieve one’s legitimate objectives. T he most important question was not if US -led forces would prevail in toppling S addam, but if regime change would deter other rogue states in the ‘axis of evil’ from engaging in hostile behaviour toward the US . C ertainly, regime change against rogue states presented the Bush administration with more clearly identifiable targets than obscure terrorists. The risk was that a war against Iraq could encourage others to accelerate weapons development (H offman 2003). Preventive War T he A merican invasion, occupation, and military presence in Iraq demonstrates that preventive war against potential threats that could materialize sometime in the future may not adhere to several just war principles. T he preventive war against Iraq

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undermined morality, international law, and diplomacy because it is inconsistent with the legitimate bounds of self-defence and rushes to eliminate deterrence, containment, and economic means of solving problems. M ore important, the line between preemptive military force and preventive war has been blurred by the invasion itself. If all states reacted to adversaries as if they faced a clear and present danger of imminent or future attack at any time, global tensions would escalate, just cause could be invoked in any circumstance, and the principle of Last R esort would become non-existent. M oreover, A merica’s long support of A rticle 51 of the UN C harter would also lose its legitimacy. In sum, preventive war moves states away from the constraints of international law. Preventive wars are imprudent because they bring about violent conflicts that may not be necessary and have a strong likelihood of fostering resentment. They are also unjust because they assume complete assessments of an adversary’s future motivations and intentions and are based on a presumption of guilt. By contrast, preemption can be justified if it is undertaken against an immediate and imminent threat, when diplomacy cannot be attempted, and where the violent action is limited to reducing that threat. T here is a great temptation, however, to step over the line from preemptive to preventive war, since the line is vague and because the stress of living under a possible threat is great. O ffensive warfare may seem to be a legitimate method for dealing with terrorism. Terrorists are extremely flexible and, unlike conventional militaries, they can project power with great efficiency: they do not have to develop weapons and delivery vehicles; they may live among their target populations; and they require comparatively little in the way of logistical support. In other words, terrorists act beyond the legitimate constraints of just war, whereas states are expected to wage just wars. H owever, the dual threats of terrorism and the spread of WMD do not mean that offensive warfare is the only solution. F or example, terrorists’ sources of funding, often tied to illicit transactions and black market economies, are vulnerable to disruption through determined law enforcement. And while terrorists can piggyback on the infrastructure of their targets, they are also vulnerable to detection via that same infrastructure as they use phones, faxes, the internet, and other electronic media. Finally, many WMD are still relatively expensive to acquire and difficult to produce and reproduce in any quantity. S till, if all possible scenarios are imagined, the potential for devastation seems limitless and it ostensibly makes great sense to get them before they get us. O n the whole, the just war analysis presented here allows us to clearly differentiate between how the Bush doctrine perceives intentions and actual capabilities. In estimating potential threats, the intentions of a likely adversary are much more important than capabilities that ‘might’ be employed by someone. S o the assertion that the US faces rogue enemies who ‘hate everything’ about it must be carefully evaluated. T he Bush administration made a questionable leap when it assumed that so-called rogue states desire to harm the US and pose as imminent military threats.

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T he Bush administration blurred the distinctions between intentions and actual capabilities. C onsider the arguments about the threat posed by Iraq’s potential to acquire WMD . Vice President C heney argued that Iraq posed a threat to the US : ‘M any of us are convinced that S addam H ussein will acquire nuclear weapons fairly soon. ... D eliverable weapons of mass destruction in the hands of a terror network or murderous dictator or the two working together constitutes as grave a threat as can be imagined’ (C heney 2002). But was Iraq really in possession of actual WMD programmes or did S addam simply fool the US into believing that his cat-and-mouse game with UN weapons inspectors meant that he did? In the end, the US launched a preventive war against S addam’s Iraq simply to bring an end to the confusion. In the A merican case for war against Iraq, mechanisms short of war were clearly not sufficiently exhausted and the risks of inaction did not outweigh the risks of using force. T he US prematurely resorted to war when other non-lethal choices remained available to reduce the threat. A lthough the Bush administration sought to make a moral and political case for a justified preemptive attack, the result was a preventive invasion that failed to satisfy jus ad bellum considerations. References A mbrose (2002) De officiis, D avidson, I. J. (trans.). ��������������������������� (O xford: O xford U niversity Press). A nderson, S ., Bennis, P. and C avanagh, J. (2003) A Coalition of the Willing or a Coalition of the Coerced? (W ashington DC : Institute for Policy S tudies), 26 F ebruary. A quinas, T . (1952) Summa Theologiae 2a2ac, Fathers of the English Dominican Province (C hicago: W illiam Benton) XL, 1. A ugustine (1972) De civitate Dei contra paganos [Concerning the City of God against the Pagans]. H . Bettenson-H armondsworth (trans.) (Baltimore: Penguin Books). A yala, B. (1912) On the Law of War and on the Duties Connected with War and on Military Discipline. J.P. Bate (trans.) (W ashington: C arnegie Institution of W ashington), 10–11. Baldwin, D .A . (1999/2000) ‘T he sanctions debate and the logic of choice’, International Security 24:3, 87–92. Bush, G.W . (2002a) ‘President O utlines Iraq T hreat’, 7 O ctober 2002, . Bush, G.W . (2002b) ‘President Bush, C olombia President U ribe D iscuss T errorism’, 25 S eptember 2002, . Bush, G.W . (2002c) ‘T he N ational S ecurity S trategy of the U nited S tates of America’, 17 September 2002, .

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Bush, G.W . (2002d) ‘Graduation S peech at W est Point’, 1 June 2002, . Bush, G.W. (2002e) ‘President’s Remarks at the United Nations General A ssembly’, 12 S eptember 2002, . C arr, E.H . (1945) Nationalism and After (London: M acmillan). C entral Intelligence A gency (CIA ) (2002) National Intelligence Estimate on Iraq’s Continuing Programs for Weapons of Mass Destruction, . Cheney, R. (2002) ‘Vice President Speaks at VFW 103rd National Convention’, 26 A ugust 2002, . C hristopher, P. (1999) The Ethics of War and Peace: An Introduction to Legal and Moral Issues (U pper S addle R iver, N J: Prentice H all). C oates, A .J. (1997) The Ethics of War (M anchester: M anchester U niversity Press). C ollier, R . (2002) ‘O il F irms W ait as Iraq C risis U nfolds’, San Francisco Chronicle, 29 S eptember, 1. C oppieters, B. and F otion, N . (2002) Moral Constraints on War: Principles and Cases (Lanham, MD: Lexington Books), 50. Coppieters, B. and Kashnikov, B. (2002) ‘Right intentions’, in B. Coppieters and N . F otion (eds), Moral Constraints on War (Lanham, Boulder, New York and London: Lexington Books), 459–477. C rawford, N . C . (2003a) ‘Just war theory and the US counter terror war’, Perspectives on Politics 1:1, 5–25. C ullihan, J. F . (2002) ‘Preempt Iraq’, National Review, 16 D ecember 2002, 5. Energy Information A dministration (EIA ) ‘Iraq C ountry A nalysis Brief’, M arch 2004, . F allows, J. (2004) ‘Blind into Baghdad’, Atlantic Monthly, January/F ebruary, < http://www.theatlantic.com/doc/200401/fallows>. Glad, B. (2004) ‘C an tyrants be deterred?’, in B. Glad and C .J. D olan (eds), Striking First: The Preventive Doctrine and the Reshaping of US Foreign Policy (N ew York: Palgrave Macmillan), 51–52. Glover, J. (2001) Humanity: A Moral History of the Twentieth Century (London: Pimlico). Goodwin, G. (1982) Ethics and Nuclear Deterrence (New York: St Martins Press). Grotius, H . (1999) The Rights of War and Peace: Including the Law of Nature and of Nations, A .C . C ampbell (trans.) (W ashington: M . D unne), 174. Hoffmann, S. (2003) ‘America goes backward’, New York Review of Books 50(12), 12 June. Johnson, J.T . (1984) Can Modern War Be Just? (N ew H aven: Y ale U niversity Press), 120, 145.

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Johnson, J.T . (1998) ‘Just cause revisited’, Ethics and Public Policy Center, 1 S eptember 1998, online at . Johnson, J.T . (1999) Morality and Contemporary Warfare (N ew H aven: Y ale U niversity Press). Krasner, S .D . (1999) Sovereignty: Organized Hypocrisy (Princeton, N J: Princeton U niversity Press). M earshimer, J.J. (1994/1995) ‘T he false promise of international institutions’, International Security 19:3, 5–49. Milbank, D. (2002) ‘For Bush, Facts are Malleable’, Washington Post, 22 O ctober 2002, 1. Milbank, D. (2003) ‘Upbeat Tone Ended with War’, Washington Post, 29 M arch 2003, 1. M orgenthau, H .J. (1995) ‘T he intellectual and political functions of theory’, in J.D . D erian (ed.), International Theory: Critical Investigations (H oundmills and London: M acmillan), 36–52. Morse, E. (2001) ‘Task Force Report, Council on Foreign Relations’, Strategic Energy Policy: Challenges for the 21st Century Independent Task Force Report (W ashington DC : C ouncil of F oreign R elations). Norton-Taylor, R. and MacAskill, E. (2004) ‘3000 More UK Troops for Iraq’, The Guardian, 19 June, 1. R amsey, P. (1968) The Just War: Force and Political Responsibility (New York: C harles S cribner’s S ons). R egan, R .J. (1996) Just War Principles and Cases (W ashington DC : T he C atholic U niversity of A merica Press). Suárez, F. (1944) ‘A work on the three theological virtues: Faith, hope and charity’, in G.L. W illiams, A . Brown and J. W aldon (eds), Selections from Three Works of Francisco Suárez (O xford: C larendon Press-H umphrey M ilford), 805–817. United Nations Charter . U nited N ations S ecurity C ouncil. ‘R esolution 1441’, 8 N ovember 2002, . U nited N ations S ecurity C ouncil. ‘Press R elease: SC /7777 (5 June 2003): UN Inspectors F ound N o Evidence of Prohibited W eapons Programmes as of 18 M arch W ithdrawal, H ans Blix T ells S ecurity C ouncil’, S ecurity C ouncil 4678th Meeting, New York, . Vitoria, F . (1934) ‘O n the Indians lately discovered’, in J.B. S cott (ed.), The Spanish Origin of International Law. Vol. III . Francisco de Vitoria and His Law of Nations (O xford: C larendon Press-H umphrey M ilford), XL, 6. Walsh, N.P., Borger, J., Macalister, T. and MacAskill, E. (2003) ������������������������� ‘US begins secret talks to secure Iraq’s oilfields; Fears that wells will be torched if regime falls’, The Guardian, 23 January, 1.

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W altz, K. (1979) Theory of International Politics (R eading, MA : A ddisonW esley). W alzer, M . (1977) Just and Unjust Wars: A Moral Argument With Historical Illustrations (New York: Basic Books). W iegel, G. (1992) ‘F rom Last R esort to endgame’, in D . D eC osse (ed.), Reflections On the Morality of the Persian Gulf War: But Was it Just? (New York: D oubleday), 6. W irtz, J. and R ussell, J. (2003) ��������������������������������������������������� ‘Viewpoint: US policy on preventive war and preemption’, Non-Proliferation Review, July/A ugust, 4. W itt, H . and Kemper, B. (2002) ‘US C laim to Iraq O il is N o S ure Bet’, Chicago Tribune, 20 N ovember, 1. Wright, R. and Graham, B. (2004) ‘US Works to Sustain Iraq Coalition’, Washington Post, 15 July, 1.

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C hapter 19

Childhood in Conflict: Can the Real Child S oldier Please S tand U p? Helen Brocklehurst

It is a paradox that even very familiar phenomena can remain partially unknown. War, like childhood, does not report itself directly. Notwithstanding the obvious horror of war and the preciousness of children, ������������������������������������� ‘war affected’ children has remained a curiously monolithic��������������������������������������������������������������� , and undisturbed���������������������������������������������� ��������������������������������������������������������� ‘�������������������������������������������� issue area’, except in it’s spawning of the equally ����������������������������������� singular category of child soldier. A recent U nited N ations report by the Special Representative for Children and Armed Conflict, acknowledges that despite ‘clear and strong, children and armed conflict protection standards, and important concrete initiatives, particularly at the international level, atrocities against children and impunity for violators continue largely unabated on the ground’ (U nited N ations 2005, 14). T his ‘cruel dichotomy’ then forms the basis of an ‘A ction plan for the establishment of monitoring, reporting and compliance mechanisms on children affected by armed conflict’. Importantly, it lays claim to ‘greatly increased visibility, global awareness and advocacy on children and armed conflict issues’. H owever, there is a related issue here of how these war-affected children have been ‘firmly placed on the international peace-and-security agenda’ as well as questions about these ubiquitous, singular, agendas. T he report is in direct response to S ecurity C ouncil R esolution 1539 (2004), and ‘draws on extensive consultations on this issue conducted among all stakeholders, particularly Member States, United N ations entities, regional organizations and N GO s’. T ellingly, children are not listed stakeholders. This chapter will consider if this new international ������������ policy area masks a diversity of conflicts and childhoods and if this creates further issues����� ���� for all children, both at war and on other, closer, home ������������ fronts. War and Children It is not only the U nited N ations, but a proliferation of international organizations that have sought to raise awareness of ‘war affected children’, particularly since the ending of the cold war (M achel 2001; ���������������������������������������� Brett and M cC allin 1996; ��������������� U nited N ations  ������������������������������������������������������������������������������� A nother recent ‘composite’ issue area is that of ‘war babies’, which considers practices such as mass rape and sexual violence, motherhood, infancy, trauma, and the intergenerational impact of war.

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1989). T he rapid transmission of these children as a human interest story, may partly be explained by the appeal of children per se and also the growth of the internet and civil society. T he currency of particular ideas and images of childhood, to all forms of media, regardless of a related context, is well documented (H olland 2001; M oeller 2002; W ells 2005). Y et it is children with heightened physical power, and especially those who can, and do kill in war, who seem to create the most interest (Gray 2003, 222; M essenger D avies 2005). Indeed the presence of ‘an estimated 300,000 child soldiers’ has created substantially more attention than millions of ‘civilian’ children killed and affected by war in Iraq for example. R esearchers too have been moved to explore the phenomena of child soldiers, their condition and roles, and especially their legal status and its humanitarian implications (���������������������������������� Kuper 1997;����������������������� Goodwin-Gill ���������������������� and C ohn 1994). H��������������������������������������������������������������������������������� owever it is interesting to note that this interest is also asymmetrical to its military reach, as S inger’s examples of practical and doctrinal ‘unpreparedness’ for engagement with child soldiers amply illustrate (2005). Another example of superficial engagement is demonstrated in the reportage of child soldiers. Publishers, editors and photographers prominently illustrate newspapers, book jackets and websites with photographs of child soldiers. Peering defiantly back at the camera, they may be male or female, aged between six and 18, classified as adults, armed, unarmed, victims, perpetrators or both, to name but a few permutations. H owever, joining the visual collective of ‘child soldier’, does not mean that permission has been sought for subsequent circulation of their identity. In this one respect, we may afford young people in the theatre of conflict, a premature and disproportionate/dispassionate degree of independence and rationality. But even for children who do take pride in this venture, it is possible that some degree of fear or shame may not yet be felt or not be communicable. In addition, young people often equate the exercising of power (especially criminal, violent or military activity) with the crossing of the threshold into adulthood (Marks 2001). This is well documented in conflicts and public protests from Northern Ireland to Gaza and South Africa. The acknowledgment of their role, via the opportunity to pose and record it, can further cement this status. It also poses further risks. Responsibility here, for their long-term welfare may lie with the image-catcher. And it is not a responsibility to be taken lightly. We do not typically compromise adult combatants by circulating their iconographic portraits. In turn, very few humanitarian agencies digitally obscure the faces or eyes of such children so that recognition is impossible. Given that hundreds of thousands of these images alone can be found on the internet today, the potential problem is not insignificant. In this way, the ‘child soldier problem’ is unwittingly perpetuated and complicated by well meaning accomplices. This lack of responsibility towards children perhaps reflects an intervention that is child-centred but ultimately pro-adult (A rchard 1993; W yness et al. 2004).  ��������������������������������������������������������������������������������� My own textbook editor selected from a dozen images cleared for copyright, which included many portraits and full frontal shots. A small child in a balaclava was selected.

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C hildhood is our flexible friend and we have created the versions we need. We have had little need or space to consider a true hybrid: part child, part soldier, as a brief exploration of the concept demonstrates. Child Soldiers C hild soldiering has frequently been described as a recent phenomenon (R osen 2007, 304). A typical ‘imagined’ child soldier, built up from composite media images which accompany this digital decade of concern, is male, armed, and of teenage years. Posing in confrontation or perhaps pausing in near-childlike apprehension, such a soldier is typically photographed outdoors, as if actually belonging to a street battle on the A frican continent. But as UNIC EF note: whilst the term ‘child soldier’ conjures up images of gun-toting adolescent boys, the reality is very different. A number of the world’s child soldiers are actually girls – in some countries up to 40% – and many are as young as seven or eight years old (������������� UNIC EF������� 2007).

R ecognition of girl soldiers has come very late in the day (������������������������ Keairns 2002). H��������� owever, when we������������� think about any of these child soldiers, we also barely disturb the historical artifice that is young people’s participation in conflict and their preparation for war. T his false memory serves well the contemporary lexicon that ‘soldiers’ are not children. The prefix ‘adult’ to ‘soldier’ is after all unnecessary. The arrival of the pejorative prefix ‘child’ to ‘soldier’ does not indicate the beginnings of the practice of soldiering by children. It marks the point at which a society’s conception of childhood became incommensurable when harnessed to its concepts of warfare. A s R osen notes ‘this child-soldier “crisis” is also a modern political crisis, which has little to do with whether there are more or fewer children in wars today’: International law abstractly theorizes that child soldiers are victims of adult abuse and criminality. Like the concepts of the ‘child laborer,’ ‘child bride,’ or ‘child prostitute,’ the ‘child soldier’ is conceived of as a deviant product of adult abuse; such a conception presupposes that children are dependent, exploited, and powerless (2007, 297).

Previous time spans of childhood reveal that children have often been trained and engaged in warfare separately to adults. Evidence of such labour and heroics survives but recognition of this contribution generally has not. F or an issue that has emerged within the last 20 years of the so-called information age, a little knowledge has gone a long way. Until recently the political will has not existed to track even the number and extent of the majority of recognized child soldiers������������������������������ . Even ���������������������������� t���������������������� he origin of the most quoted statistic on child soldiers in humanitarian circles remains uncertain.����� T he

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most accepted definition of a child soldier was borne of an attempt by NGOs to better identify soldiers through a more accurate and less weapon-centric interpretation of soldiering. T hese ‘��������������������������������� C ape T own Principles’ state that: Child soldier means any person under 18 years of age who is part of any kind of regular or irregular armed force or armed group in any capacity, including but not limited to cooks, porters, messengers, and those accompanying such groups, other than purely as family members. It includes girls recruited for sexual purposes and forced marriage. It does not, therefore, only refer to a child who is carrying or has carried arms (UNIC EF , 1997).

A definition of a ‘child soldier’ can be considered through legislation that serves to protect or prevent them. T his is problematic however as ‘child soldier’ has no straightforward legal meaning in the same way that combatant for adults is afforded legal significance. Here the ‘politics of age’ (Rosen 2007, 296) really comes into play as various instruments and examples illustrate. A majority of influential humanitarian organizations and the U nited N ations, through its C onvention of the R ights of the Child, define a child as any person under the age of 18 (1989, Article 1). Universal recognition of soldiering during childhood is arguably also indicated by blanket immunity from war crime prosecution and also the death penalty until the age of 18. H owever, t����������������������������������������������������������������������������� h���������������������������������������������������������������������������� ere is as yet no universal obligation to prevent all children below the age of 18 from enlisting. The Rome Statute of the International Criminal Court (1988) bans the conscription and enlisting of children under the age of 15 years. U nder the Optional Protocol to the Convention on the Rights of the Child on the Involvement of Children in Armed Conflict (U nited N ations 2000) states must ensure that no persons under 18 are ‘forcibly’ recruited. Voluntary recruitment above 16 is acceptable. T he U K, for example,������������������������������������������������������������� has the lowest age of recruitment among European states and actively targets future recruits. Its success rate is suggested by the 6000–7000 under 18s who currently serve there. ������������������������������������������������� A rmed groups are treated separately and must not allow any persons to be recruited under the age of 18. �������������������������� T he U K has, however, also reserved the right to deploy under 18s where there is a ‘genuine military need’. C���������������������������������������������������������������������� hildren who are deployed may be valued simply in the absence of older combatants, to make up the numbers, or because they offer another valued capacity. C hildhood and soldiering can be extremely compatible. Positive aspects of childhood may be relied upon – youthful and valued aspects of pro-ability such as dexterity and vitality. T o a degree many children’s roles or functions may also be based on qualities of weakness or innocence afforded by their status. A contemporary example is that of ‘spies’, nicknamed ‘dickers’, by British solders in Iraq. On bicycles and using radios, they trail the Multi National Forces tank patrols in order to guide ambushes, just minutes and streets away. They skirt the risk of being ‘engaged’ through their inconspicuousness and related ambiguity over their status in the minds of those they threaten. C hild soldiers may also be used because  ��������������������������������������������������������������������������������� Confidential interview and images provided by serving British Army patrol member.

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of their inferior development and susceptibility to fear or drugs. In either case, recognition of their contribution to conflict is being demonstrated. The role of a combatant does not of course mean that that person is experiencing elements of their occupation knowingly or effectively or with compliance. Child/Soldiers Y et as explored elsewhere, we still downplay or deny the political and military agency that children themselves have been shown to accept (Boyden 2003; Boyden and Levison 2000). C hild soldiers cannot easily challenge additional assumptions about their experiences, just as childhood stands in poor relation to the master narrative of adulthood. A nd the dominant �������������������������������������������������� paradigm of child soldiers, as corrupted and traumatized (passive/aggressive), male ‘non-children’ dwarfs observations that such������������������������������������������������������������������������� young people may also be weak, vulnerable, confused, dependent, caring, moralistic and providing security or well being for others. ����������������������� T he exceptional nature of armed conflict and its elevation above other forms of violence also assists in making the child soldier a uniquely constructed problem and goes some way to explain their presumed trauma and also their alienation from more familiar and effective routes of assistance. A telling example is A ngola, where 10 000 former girl soldiers escaped the attention of child protection officers because they did not elect to register for demobilization (Ochien 2007). This small act marked their resistance and in some ways also their childhood. C hildren have vital political capital and agency within the international political system ������������������������������������������������������������������� as threats, ���������������������������������������������������������������� models, investments, instruments and resources t������� hrough appropriation of their ���������������������������������������������������������������� bodies and minds and our vulnerability to particular constructs of them. Y et w������������������������������������������������������������������� e are still it seems very uncomfortable with symptoms of childhood/ adulthood that child soldiers present. T he dramatic tension here lies in the coupling of two phenomena that are presumed opposites – an ‘innocent’ child and an engagement with a set of values associated with war such as adulthood/independence/politics/ control. C onstructs of children and the political remain antithetically positioned. T he cry of lost childhood or lost innocence still provides the sub text in reportage about younger combatants. T he ‘childhood’ that undergirds this allegation is characterized by protraction and protection, thus guaranteeing that the child soldier as a ‘child’ remains an impossible fantasy. A notable exception is provided by a child soldier currently ‘reborn’ in the USA, whose bestseller is available to read in Starbucks (as the publisher’s jacket promotion of this modern day fairytale explains) (Beah 2007): T his is how wars are fought now: by children, hopped up on drugs and wielding AK47s. In the more than fifty conflicts going on worldwide, it is estimated there are some 30,000 child soldiers.  ���������������������������������������������������������������������������������� A n accompanying current subtitle on A mnesty International’s website is that these children have lost their childhood.

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The book is marketed as the only first person account ‘from someone who came through this hell and survived’. T his perception that war envelops childhood may be accurate, but it is the production and reception of this ‘survivor account’ that is new, not the telling of it. S imilarly, as ethnographic researchers continue to uncover and disturb these discourses, the experience of soldiering may yet be linked to greater civic political participation as adults (Blattman 2008; Veale 2003; W est 2000). (M cEvoy-Levy 2001, 13). T he voting age was moved down to 14 years in South Africa’s first democratic election, and as Peters notes of former children in S ierra Leone, ‘local, traditional authorities are challenged by commoners, both ex-combatants and civilians, who claim that “their eyes are open” as a result of the war’ (2006, 136). Over 10 years since the infamous Machel report marked the beginning of systematic programmes of intervention, the ���������������������������������������� assumption that such children are a ‘lost generation’ pervades the community that works with former child soldiers (O cheing 2007). In addition, a donor state’s measurement or understanding of war is often mapped onto a host child’s predicament. H ere the cycle continues, for children’s politicization can be further enabled, precisely because it is also being simultaneously underplayed��������������������������������������������������� . A������������������������������������������������ related example is that of advocacy groups for war-affected migrant children. They acknowledge the courage and capacity that is self-evident in a young child’s passage – but concede that the victim note remains instrumental in the subsequent pitch they make for charitable support. Without it there is less sympathy for their cause and less funding is made available. A recognizably robust ‘victimhood’ is required to legitimize action, thus continuing to also disable such children. O r put another way, we need to be seen to care – however careless and inadequate our response is. Children of Courage? S imilarly, we are little concerned with children who appear to undermine our conventions of caring and nurturing. C hildren who ‘don’t care’, in every sense, receive more media attention than children who do. T eenagers engaged in antisocial behaviour and serious crimes are often represented as a moral barometer of society. C onversely, pro-social behaviour, for example demonstrated by many ‘child carers’ in the U K, is under recognized and undervalued by state institutions. In the U K alone there are an estimated 175 000 carers, or about 30 in every secondary school (S cott 2007). C ourage and bravery are periodically and exceptionally welcomed, as annual high profile awards and fundraising events demonstrate, but the emotional responsibility they bear and moral decisions they undertake daily, may remain undisturbed contributions to society and to social history. A ll such children may sacrifice aspects of their development and well being for unpaid ‘nursing, working and worrying’ that disrupts their education. That they can, and  ������������������������������������������ Confidential interview with NGO personnel.

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do, perform such physical and mental tasks already demonstrates the shouldering of a responsibility that we too should meet. T hese children are also on their own front line������������������������������������������������������� but we are selective in the performances �������������������������� we recognize�. It is ironic that such children, should they have time to focus at school, might be tempted by the training, payment and recognition of a ����������������������� military education and career. Their academic underperformance might also make them ripe for selection. T he appropriateness of recruitment teams and careers advisors from the armed services visiting schools, perhaps under the rubric of citizenship lectures, is little questioned. A t the same time, curriculum advisors admonish schools for failing to consider the ‘moral ambiguity’ of patriotism inherent in (the teaching of) British history (H and and Peace 2008). Interestingly, formal education on war and on soldiering does not precede such visits from the military establishment. M ilitarybased schooling – ��������������������������������������������������������������� from the infamous ������������������������������������������������������ S uvavov academies in the R ussian F ederation, which offer places for young orphans, to cadet training across Europe – is just beginning to be viewed ������������������������������������������������������������ through the child soldier lens����������������������� . M eanwhile childhoods march on, in every sense. T hat there is this a narrow band width for considering childhoods and child soldiers is observed by those at the sharp end of relief work with children and those with a critical eye on the humanitarian literature that surrounds them (R osen 2007; M acmillan 2007). R ecent literature on contemporary child soldiers has been slow to consider������������������������������������������������������������������������� cultural and social ideas about childhood, citizenship, rights, gender, the nature of security, and so on. S�������������������������������������������� ��������������������������������������������� hifting dimensions within childhoods may be as significant as the gulf perceived between ‘children’ and ‘adults’. Working, ��������� migrating, violated, pregnant, fighting; the������������������������������������ transient ����������������������������������� process children inhabit may be heightened and contracted in war,��������������������������������������� through extra physical, emotional and moral responsibilities. ������������������������������������������������������������ T hrough ���������������������������������������������������� perceptions and priorities that��������������������� render the child as a comparative negative, we have, however, underestimated the age when children can make moral judgments (Wyness et al. 2004; A rchard 2003). R esilience is ��� unexpected, under-researched and undermined. F rom child soldiers subverting their roles in carnage, to lack of specific provision for young boys fleeing forced marriage, such���������������������������������������������������������� judgments must surely leave many moral footprints behind. C hildhood is a social, cultural and political construct. A f������������������ ocus on hierarchy and a desire to simplify debates on agency has arguably displaced much relevant evidence on children’s activities and capacities in war and in peace. W e generally accept an adult-centred and Western-centred definition of adulthood as the achieved state. ������������������������������������������������������������������ In this ‘indiscipline’, a chil������������������������������������ d’s experiences are shaped not only by their underdevelopment as persons, but by conceptions earned and bestowed, constructed and determined by the many individuals and groups who set and hold expectations of children, individually, collectively, simultaneously, arbitrarily and even contradictorily (Brocklehurst 2006, 1). UNICEF recently researched family belief and care practices in Belgrade for example and established that ‘caring’ came at the cost of development. Mothers were working with the assumption that child intelligence arrived at 3 years old and consequently the act of caring was demonstrated through familial proximity rather than educational stimulation. A

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lack of provision for disabled children was also demonstrated, as focus groups revealed that these children were often hidden and a source of shame (UNIC EF 2007b, 22). Such findings were part of their broader investigation into the needs of the socially excluded. Interestingly the scope of their report was extended to those deemed to be ‘invisible children’: …children who are not even registered at birth, children victims of trafficking, street children, children who take on grown-up responsibilities too early through premature marriage, childbirth in their teenage years, premature employment, etc (UNIC EF 2007b, 14).

A s ‘invisible’ children go on to experience ‘lost’ childhood; we are perhaps at the limits of what can be achieved with these singular concepts. Security and War S ecurity and war have been at the heart of the study of international relations for the past 50 years. They have helped to define the discipline and to fix its boundaries. W ar has been one of the areas that critical social projects have focused a great deal of attention on, albeit with an assumption that the victims of war, women, children, refugees, and so on are easy to identify and ‘offer a voice for the silenced’. However, in conflicts in the past 20 years, the recognition of children in this way has often been more complex, not only being the victims of war, but in many instances the perpetrators of war. This has raised difficult questions in terms of using generalized conceptions of child and childhood in relation to the specific displacements characteristic of contemporary warfare. It also highlights postmodernist concerns about the dangers of using simplistic categorizations in the analysis of international relations in a world characterized by multiple identities and fluid meanings. A lthough critical literature remains divided over whether war is becoming more clinical or more visceral, wars of today are increasingly waged by multiple practitioners, including private and illegal actors. Perhaps mirroring this complexity, i������������������������������������������������������������������������������������ t is worth noting that in the U nited S tates, the term ‘combatant’ has recently been replaced with ‘war fighter’. This move further deflects attention from the agency that is soldier on soldier. But the term also suggests an immediacy and reactivity. Like a fire-fighter being called to a fire, war is presumed, and the war fighter is needed, recognized and valued when there is war. T he USA is arguably implicated in more conflicts than any other country. W ar is perhaps felt now as an ever present or inevitable challenge. The idea of war-fighting too is suggestive of the kind of heroics that are typically scaled against inevitable natural disasters and social  ���������������������������������������������������������������������������� The USA is one of only two states that have not ratified the United Nations C onvention on the R ights of the C hild.

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phenomena such as crime or disease. War fighters may thus take on a hyper-ability in responding to the ‘enemy’ that is war-gargantuan, non-human and potentially more deadly. The majority of conflicts taking place in the world are, however, small scale. Where then does ‘war fighting’ leave the construction of ‘child soldier?’ With already limited recognition for their agency, they have the potential to be left on the sidelines and ��������������������������������������������������������������� consigned to virtual worlds and backwaters of barbarism.������� Posed alongside all the other ‘D avids’, they are arguably in a worse place. T he U nited N ations is committed to assisting all such children for whom harm can be recognized. If children are to be successfully brought into security studies and practices, as a referent, or a referent group, then a contemporary, sensitive typology of concepts of childhood, conflict and security, employed in support of children in conflicts, would be a valuable resource. As Rosen concludes (2007, 300), to ‘understand the experience of child soldiers requires deconstructing the idea of the “child soldier” as a generic archetype of humanitarian discourse to focus concretely on the conflicts and settings in which children are more likely to experience extreme brutality and trauma’. H owever, returning to the original recommendations made to the S ecurity C ouncil it is noted: In the context of the present report, it should be emphasized that there is no universally applicable definition of ‘armed conflict’ in general, and in particular that the mandate of my Special Representative for Children and Armed Conflict does not contain a definition of the term (United Nations 2005, 2).

T hough this response may be understandable it is also a very unusual starting point. �������������������������������������������������������������������������� In 2006 the UN S ecurity C ouncil has accepted the ‘campaign for the era of application’. Its four key components include: advocacy and dissemination of children and armed conflict norms; developing and strengthening local civil society networks for protection, monitoring and rehabilitation; mainstreaming children and armed conflict issues into the programmes and mechanisms of key institutions, within and outside the United N ations; and the establishment of a monitoring, reporting and compliance mechanism to ensure compliance with children and armed conflict norms (U nited N ations 2005, 15).

A t the heart of this chapter is the concern that these norms cannot yet be established nor these aims met. T hough concern over children as victims and combatants, and increasingly both, is substantial, there remains a significant ‘perception gap’ between theories and practices of children engaged in war and the nature and scope of childhoods represented by such organizations and policies. Significantly, the mono-issue of ‘children and armed conflict’ provides a partial answer as to why, given the very high level of concern in the international community there is as yet no reliable data or survey of children’s roles in conflict worldwide, nor any way of even establishing their number.

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A denial of children’s agency, even unintentionally, may place them in a position where they contribute to armed conflict but cannot contribute to their own security. Interestingly, the work of Blattman and others suggests that children’s responses to war may yet stabilize and support their adulthood. W ithout further investigation, however, UNIC EF may be proven correct when they state that ‘childhood is an opportunity that does not come back’ (2007b, 42). References A rchard, D . (1993) Children: Rights and Childhood (London: R outledge). Beah, I. (2007) A Long Way Gone: Memoirs of a Boy Soldier (London: H arper C ollins). Blattman, C . (2008) From Violence to Voting: War and Political Participation in Uganda. Working Paper Number 138, January 2008. Boyden, J. (1990) ‘Childhood and the policy makers: A comparative perspective on the globalisation of childhood’, in A . James and A . Prout (eds), Constructing and Reconstructing Childhood: Contemporary Issues in the Sociological Study of Childhood (London: F almer Press), 190–216. Boyden, J. (2003) ‘Children under fire: Challenging assumptions about children’s resilience’, Children, Youth and Environments, 3: 1, S pring 2003. Boyden, J. (2006) ‘C hildren, W ar and W orld D isorder in the 21st C entury: A R eview of the T heories and the Literature on C hildren’s C ontributions to Armed Violence’, Working Paper Number 138, QEH Working Paper Series – QEHW PS 138. Boyden J. and Levison D . (2000), Children as Economic and Social Actors in the Development Process, Working paper 1, Expert Group on Development Issues, Ministry for Foreign Affairs, Stockholm. Brett, R ., and M cC allin, M . (1996) Children: The Invisible Soldiers (Vaxjo, S weden: R adda Barnen). Brett, R ., and S pecht, I. (2004) Young Soldiers: Why They Choose to Fight (Boulder, CO : Lynne R ienner). Brocklehurst, H. (2003) ‘Kids r Us? Children as political bodies’, International Journal of Politics and Ethics, 3: 1, 79–92. Reproduced in Mark Evans (2004) (ed.), Ethical Theory in the Study of International Politics (York: Nova S cience), 91–104. Brocklehurst, H. (2004) Who’s Afraid of Children? Children, Conflict and International Relations (A ldershot: A shgate). Brocklehurst, H. (2005) ‘Just children? Just war’, in M. Evans (ed.), Just War Theory: A Reappraisal (Edinburgh: Edinburgh U niversity Press), 114–133. Burman, E. (1992) ‘Innocents abroad: W estern fantasies of childhood and the iconography of emergencies’, Disasters, 18: 3, 238–253. H and, M . and Pearce, J. Should Patriotism be Promoted, Tolerated or Discouraged in British Schools? Final Project Report, funded by the Nuffield Foundation,

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accessed 6 February 2008 . H olland, P. (1992) What Is a Child? Popular Images of Childhood (London: Virago Press). Goodwin-Gill, G. and C ohn, I. (1994) Child Soldiers (O xford: C larendon Press). Gray, C . (2003) ‘Posthuman soldiers in Postmodern war’, Body and Society, 9: 4, 215–216. Keairns, Y. (2002) The Voices of Girl Child Soldiers: Summary (NewYork: Quaker United Nations Office). Kuper, J. (1997) International Law Concerning Child Civilians in Armed Conflict (New York: Oxford University Press). M achel, G. (1996) The Impact of Armed Conflict on Children (New York: United N ations). M achel, G. (2001) Impact of War on Children (New York: United Nations). M acmillan, L. (1997) ‘Inventing the child soldier’, U npublished paper, British International S tudies A ssociation, A nnual C onference, 2007, C ambridge U K. Marks, M. (2001) Young Warriors: Youth Politics, Identity and Violence in South Africa (W itswatersrand U niversity Press). M cEvoy-Levy, S . (2001) Youth as Social and Political Agents: Issues in PostSettlement Peace Building, Kroc Institute O ccasional Paper #21: O P:2. M essenger D avies, M áire (2005) ‘D o mention the war: C hildren and media coverage of traumatic events’, in J. ����������������������������� Gunning and S . H olm (eds) Ethics, Law, and Society. Vol. 1 (A shgate: A ldershot). M oeller, S .D . (2002) ‘A hierarchy of innocence: T he media’s use of children in the telling of international news’, The Harvard International Journal of Press/ Politics, 7: 1, 36–56. Ochieng, Z. (2007) ‘Child soldiers not a lost generation’, The East African (N airobi) 18 S eptember 2007. Peters, K. (2006) Footpaths to Integration: Armed Conflict, Youth and the Rural Crisis in Sierra Leone, W ageningen U niversity T hesis. R osen, D . (2007) ‘C hild soldiers, international humanitarian law, and the globalisation of childhood’, American Anthropologist, 109: 2, 2, 96–306. Scott, C. ‘They care: We think you will too’, Sunday Times Magazine (D ecember 2007). Seekings, J. (2006) ‘Beyond heroes and villains: The rediscovery of the ordinary in the study of childhood and adolescence in S outh A frica’, Social Dynamics, 32:1, 1–20. S inger, P.W . (2005) Children at War (New York: Pantheon Press). U nited N ations (1989) The Conventions on the Rights of the Child (Geneva: U nited N ations). U nited N ations (2000) Optional Protocol to the Convention on the Rights of the Child on the Involvement of Children in Armed Conflicts (Geneva: U nited N ations).

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U nited N ations (2005) Agenda item 101: Promotion and protection of the rights of children; Children and armed conflict R eport of the S ecretary-General, UNIC EF , 15A /59/695S /2005/72. UNIC EF (1997) Cape Town Principles and Best Practices. C ape T own, S outh Africa, 27–30 April. Available at: . UNIC EF (2007a) Position paper on child soldiers, . UNIC EF (2007b) The State of Children in Serbia (New York: United Nations). Veale, A . (2003) From Child Soldier to Ex-Fighter (Pretoria: Institute for S ecurity S tudies). W ells, K. (2007) ‘N arratives of liberation and narratives of innocent suffering: T he rhetorical uses of images of Iraqi children in the British press’, Visual Communication, 6:1, 55–71. W est, H . (2000) ‘Girls with guns: N arrating the experience of war of F relimo’s “female detachment”’, Anthropological Quarterly, 73: 4, 180–194. W yness, M ., H arrison, L. and Buchanan, I. (2004) ‘C hildhood, politics and ambiguity: T owards an agenda for children’s political inclusion’, Sociology, 38:1, 81–99.

C hapter 20

Ethical D imensions of Y outh Justice R ob A llen

It is timely to be considering ethical dimensions of the youth justice system in England and W ales. In 2008 the UN C ommittee on the R ights of the C hild will be examining the U K in respect of its compliance with the C onvention, which is the most important international statement of values about how children should be treated. T he concluding observations of the C ommittee when they last examined the U K in 2002 were highly critical, noting ‘with serious concern that the situation of children in conflict with the law has worsened since the consideration of the initial report’ (in 1995) and it is likely that shortcomings in juvenile justice will again loom large. In the period since 2002, policy questions about youth justice have frequently contained an ethical element. T here has been considerable debate about the age range of the youth justice system which comprises both a low minimum age and an inflexible upper age limit at which young people become treated as adults. (Barrow C adbury 2005; A llen 2006). T he circumstances and conditions under which young people may have their liberty restricted has also been a topic of discussion prompted in part by the deaths of seven children under 18 while in detention. Particular ethical dilemmas arise in respect of certain practices in detention such as the use of physical restraint, which directly caused the death of one of these children and was a factor leading up to at least one self-inflicted death (Carlile 2006), and segregation. R ecent years have seen important debates too about measures to deal with anti-social behaviour by young people, most notably regarding the creation of dispersal zones and use of anti-social behaviour orders (OHCHR 2005). T his chapter cannot do justice to the range and complexity of these ethical questions but will concentrate on just two which seem central to the response that society makes to young people under the age of 18. The first is about prevention – in particular is there justification for the targeting of young children for intervention on the basis of factors that indicate risk of future involvement in crime? The second is the issue of the minimum age of criminal responsibility – at what age should children be liable to criminal prosecution, conviction and punishment as a result of their actions? Early Intervention with Children at Risk International norms have increasingly emphasized the importance of seeking to prevent young people’s involvement in delinquency rather than simply addressing such behaviour after it happens. T he UN C ommittee on the R ights of the C hild has

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stated that ‘a juvenile justice policy without a set of measures aimed at preventing juvenile delinquency suffers serious shortcomings’ (UNCRC 2007). T he UN Guidelines for the Prevention of Juvenile D elinquency (the R iyadh Guidelines) stress that ‘prevention requires efforts on the part of the entire society to ensure the harmonious development of adolescents … from early childhood’ (OHCHR 1990) and calls for close interdisciplinary co-operation. T he role of the wider family, school, neighbourhood and peer group is also emphasized in the C ouncil of Europe’s recommendation (2003:20), ‘N ew ways of dealing with juvenile delinquency and the role of juvenile justice’. In this context it is not surprising that policies and practices in Britain have sought to develop a more preventive approach. U niversalist health, education and social policies which seek to assist children to grow into happy, well adjusted and successful adults cause few ethical problems. It is the processes of screening, identifying and targeting individual children at risk of poor outcomes which can produce dilemmas for policymakers and practitioners. The argument for intervening early is that ignoring scientific evidence about risk and protective factors and allowing at risk children to develop unimpeded into serious chronic offenders is irresponsible and a missed opportunity. Government policies have increasingly sought to intervene early ‘to reduce the numbers of children who experience educational failure, engage in offending or anti social behaviour, suffer from ill health or become teenage parents’ (HM T reasury 2003). A s the then Prime M inister put it in 2006 ‘where it is clear, as it very often is, at young age, that children are at risk of being brought up in a dysfunctional home where there are multiple problems, say of drug abuse or offending, then instead of waiting until the child goes off the rails, we should act early enough, with the right help, support and disciplined framework for the family, to prevent it’ (Blair 2006a). T his chapter is particularly concerned with early interventions with children targeted on the basis of their future criminality. T he principal aim of the youth justice system in England and W ales is the prevention of offending, and the Y outh Justice Board draft strategy on prevention asserts that ‘targeted and sustained early prevention programmes are needed to engage those most likely to be the offenders of the future’ (Y JB 2007). S uch a view is not universally held within the youth justice system, however, with the evaluators of the flagship Youth Inclusion and S upport Panels (YIS Ps) ‘aware that some professionals were concerned about pulling children who have not offended into the criminal justice system – net widening as it is commonly called’ (Walker et al. 2007). There are a number of ethical questions relating to the profiling of children at risk. While speculation about the prospect of infants being locked up for future crimes on the basis of prediction may appear exaggerated (Burnett 2007), concerns have been raised about the often weak scientific basis for making predictions, the subjective judgments of practitioners which form part of assessments, the stigmatizing nature of the experience for children and parents and the difficulties they face in challenging the classification to which they have been subject (Munro 2007).

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In practice, this may not matter so much if the result of identification is social benefits. As Blair puts it, T his is not stigmatizing the child or the family. It may be the only way to save them and the wider community from the consequences of inaction. Intervening can sound very sinister. Actually, in the great bulk of cases it means that extra help and support can be provided. It might mean that a more intense health-visitor programme is arranged. O r it might mean parenting classes are offered; or help with drug or alcohol abuse. O r placing families within projects like the Dundee project where the family is given help but within a proper, disciplined framework. (Blair 2006)

While these examples of interventions certainly sound like ‘social benefits’, there are still causes for concern particularly when law enforcement and criminal justice agencies are involved. R ecent guidance from the A ssociation of C hief Police Officers (ACPO) describes the aim of the police as being ‘to take a lead in identifying and diverting those children at greatest risk of becoming involved in criminality before they enter the criminal justice system and before they are socially excluded’ (AC PO 2008). T he main concern relates to the now unfashionable labelling theory which holds that people officially labelled as criminals tend to adopt a criminal identity, and find it very hard to escape from it subsequently. As the Riyadh Guidelines say ‘labelling a young person as deviant, delinquent or pre-delinquent often contributes to the development of a consistent pattern of undesirable behaviour’ (UN 1990 para 5f). T his can result from a combination of how people see themselves and how others, particularly state agencies, see them and treat them. W hile such effects may be less acute in respect of ‘at risk’ rather than ‘criminal’ labels, whatever the positive intentions of targeting and intervention, unintended consequences cannot be ruled out. T he extension of information exchange among agencies and the creation of a myriad of databases for children could exacerbate labelling effects. The Information Commissioner has suggested that ‘the more you use profiling, the more you run the risk of a society where there is greater stigmatisation, more discrimination, more social exclusion and a society of greater suspicion where trust is reduced’ (T homas 2007). M oreover research has shown somewhat equivocal results about the impact of interventions. S ome preventive programmes in the USA appear to have led to higher rates of delinquency among those involved than control groups (Gatti 1998) and evaluation of the YIS P in England concluded that ‘we simply cannot know what the long term outcomes might be or whether YISP interventions work to prevent children becoming involved in anti social behaviour and criminal activities’ (Walker et al. 2007). T he evaluation does refer to at least some children whose risk factors increased after involvement in the programme.

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Second, while much of the literature makes it clear that early intervention is not about ‘blaming’ anyone for what has happened and should be provided on a voluntary basis, there is the risk of moving to a more coercive approach. Blair talked of ‘coupling social rights with social responsibilities’. Thus while voluntary, ‘labelling-free’ help and support may indeed be provided in the great bulk of cases, this leaves the door open for more ‘sinister’ interventions in the minority. Reductions in child or housing benefit have been among the measures canvassed by Government for recalcitrant families. In his major criminal justice speech in 2006 Blair suggested far earlier intervention with some of these families before they offend; and certainly before they want such intervention (Blair 2006). T he ethical questions thus relate to the imposition of measures on children who may not want it and the adverse consequences which may result. T hese include what happens should children fail to take advantage from interventions – which could mean harsher responses later. F or AC PO while ‘positive engagement with the police … will help us to identify and support those children who are at risk … for those that persist in offending … we [will] resort to the full weight of the law …’ (ACPO 2008). A sensible way forward which does not throw out the early intervention baby with the targeting bathwater might simply be to expand the availability of service provision for those children and their families who already come to the attention of the authorities. D avid S mith has argued that ‘if the causes of offending are distinctive among those who will continue to offend throughout their lives, then it is inevitable that they will come into contact with a variety of agencies, including social services’ (S mith 2005). If, as Blair puts it, ‘the vast majority offered help, take it’ the answer would seem to lie in offering more help – a larger quantity and wider variety of measures designed to encourage affectionate families, adequate attention from parents, educational achievement and so on. T he evaluation of the YIS P programme found that ‘Prior to the referral [to YIS P] many parents had been asking for help for some time with a variety of often complex and interrelated problems relating to the child’s education, family relationships, anti social behaviour…desperate for someone to do something which could help them as well as the child’ (Walker et al. 2007). R ather than targeting propensity to commit crime, better services could be provided on the basis of vulnerability and existing involvement with agencies. C andidates for voluntary intervention could include the 570 000 children who are referred to social services for child maltreatment each year, the 125 000 children whose parents are in prison, the 60 000 children in care and 40 000 born to teenage parents as well as children under the age of criminal responsibility who are involved in delinquency. Offering skilled, accessible help and support to these groups should be provided under the aegis of properly funded children’s services which integrate the prevention of crime alongside the essential outcomes for children pursued by the Every C hild M atters agenda. A wide range of preventive programmes needs to be developed including much wider use of functional family therapy as is the case in S weden. S uch an approach would have the advantage of

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seeking to prevent offending, harm and vulnerability among young people rather than simply focusing on crime. T his is certainly the approach recommended by D avid F arrington whose scientific work has done much to identify risk and protective factors. With colleagues he has argued that ‘even if there were no ethical objections to putting delinquent labels around the necks of young children, there would continue to be statistical barriers’ (S utton et al. 2004). H e argues for a focus on primary prevention offering the programme to all families living in specified areas – not on secondary prevention – targeting the programme on individuals identified as at risk. Ideally, the programme should be presented positively, as fostering safe and healthy communities by strengthening protective factors, rather than as a crime prevention programme targeting risk factors. (Farrington 2006)

T his chimes with the R iyadh Guidelines which say that ‘F ormal agencies of social control should only be utilized as a means of last resort’. The Age of Criminal Responsibility Criminal liability is the strongest formal condemnation which society can inflict on its citizens with criminal conviction often bringing long lasting adverse consequences in the form of a criminal record. T he age at which children should be deemed to have the capacity to form the necessary intention to be criminally culpable and the extent to which they should be protected from the consequences of criminal proceedings pose a range of ethical problems. T he minimum age of criminal responsibility in England and W ales is 10. Before the C rime and D isorder Act 1998, the law contained a presumption that those under 14 did not know the difference between right and wrong and a conviction could only result if the prosecution proved that they did so. N ew Labour considered the so called doctrine of doli incapax an affront to common sense and repealed it, leaving England and W ales with one of the lowest ages of criminal responsibility in Europe. In all societies, children below a certain age are too young to be held responsible for breaking the law. That concept is spelled out in the Convention on the Rights of the C hild, which calls for nations to establish a minimum age ‘below which children shall be presumed not to have the capacity to infringe the penal law’. But the Convention does not set a specific age, and it varies greatly, from six in some US states to 18 in parts of S outh A merica. T he minimum age in England and W ales is considerably lower than in many comparable countries – it is 13 in F rance, 14 in Germany and 15 in S candinavia. International standards, such as the Beijing R ules for Juvenile Justice, recommend that the age of criminal responsibility be based on emotional, mental and intellectual maturity and that it not be fixed too low. The UN Committee on the

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R ights of the C hild has recently stated that an age below 12 ‘is not internationally acceptable’ (UNCRC 2007). C hildren as young as 10 are not of course subject to the same sentences as adults. T he Y outh C ourt which deals with most under 18s has limited sentencing powers, with detention of up to a maximum of two years available for those aged 12 years and above. N onetheless, the most serious cases can be dealt with in the C rown C ourt before a jury, with adult maxima available for grave crimes. A rguments for increasing the age of criminal responsibility fall into two categories. The first relates to autonomy and capacity. Children are not able to evaluate their actions morally, anticipate the consequences of their actions or control their behaviour in the same way as adults. This lack of competence is reflected in the restrictions which are placed on children. T hey are required to attend school until 16, cannot vote until 18 and are restricted from drinking alcohol, smoking or engaging in sexual activity. Indeed the criminal justice system itself recognizes that parents should be responsible for crimes committed by their children. T he C ommission on F amilies and the W ell-being of C hildren drew attention to the growing contradiction between the effective lowering of the age of criminal responsibility to 10 through the abolition of doli incapax, which implies that children over the age of nine have the same knowledge of what constitutes crime as a mature adult, and the simultaneous increase of the presumption of parents’ responsibility for their children’s offences. In particular the abolition of doli incapax and the coercive nature of parenting orders have created a new reality of dual responsibility for juvenile crime. T his argument is problematic for those who argue that children should play a greater role in decisions that affect them. Emphasizing children’s lack of competence justifies a paternalistic approach which does not sit easily with the values of participation and consent which are increasingly accepted as important aspects of children’s human rights. T he question boils down to whether increasing rights inevitably mean increasing the right to be punished. A second argument for increasing the age of criminal responsibility is the wish to minimize the negative impact which exposure to criminal justice can have. A ccording to this view ‘children are not mini-persons with mini-rights, mini-feelings and mini-human dignity. T hey are vulnerable human beings with full rights which require more, not less protection’ (de Boer-Buquicchio 2003). The practical reasons for wanting to restrict criminal prosecution are linked to the effects of labelling discussed above. T he negative effect of criminal labelling which can result from the processes of conviction and sentencing are likely to be much greater than from identification of risk factors. A court appearance can in certain cases confirm an adolescent’s deviant identity both in their own eyes and those of others, thereby extending rather than curbing a delinquent career. T here is some evidence that AS BO s have been a badge of honour among some young people and research in one English county concluded that ‘as far as young offenders are concerned, prosecution at any stage has no beneficial effect in preventing reoffending. On the contrary, prosecution only seems to increase the likelihood of re-offending’ (Kemp et al. 2002).

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A variety of international observers have taken the view that too many children are criminalized at too early an age in England and W ales. T he UN C ommittee on the R ights of the C hild recommended in 2002 that England and W ales increase the minimum age for criminal responsibility, the European C ommittee of S ocial R ights described it as manifestly too low and not in conformity with article 17 of the social charter which assures the right of mothers and children to social and economic protection. T he C ouncil of Europe’s C ommissioner for H uman R ights recommended that the U K bring the age of criminal responsibility in all it jurisdictions into line with European norms and that the age at which children who can breach anti-social behaviour orders should be raised to 16. T here have been a growing number of calls for change domestically too. T he R oyal C ollege of Psychiatrists has called for a government-led process of consultation on the needs and human rights of child defendants to include the age of criminal responsibility. T he government’s position is that children of 10 can differentiate between bad behaviour and serious wrong doing and that commencing criminal responsibility at this age helps children to develop a sense of personal responsibility for their behaviour. Conclusions T he very nature of a separate juvenile justice system gives rise to important ethical questions – in particular the extent to which the lesser culpability of children and their need for protection means that the traditional repressive and retributive objectives of criminal justice should give way to others such as rehabilitation and restorative justice. Dilemmas will always arise in seeking to apply a set of values based on the best interests of the child in a context which necessarily takes account of the needs and interests of others particularly the victim and the broader community. W hile debate about resolving competing demands of public policy can be heated, ethical perspectives are often missing or treated in a rather glib way. It is hoped that legislators, policy makers and practitioners in the system will give due consideration to such perspectives alongside what no doubt appear to be heavier pressures. References A llen, R . (2006) From Punishment to Problem Solving: A New Approach to Children in Trouble (London: CC JS ). Association of Chief Police Officers (2008) It’s Never Too Early, It’s Never Too Late: The ACPO Strategy for Young People (London: AC PO ). Barrow C adbury T rust (2005) Lost in Transition: A Report of the Barrow Cadbury Commission on Young Adults and the Criminal Justice System (London: BCT ).

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Blair, T . (2006) ‘O ur N ations F uture – C riminal Justice: S peech in Bristol’. 23 June 2006. . Blair, T . (2006a) ‘O ur N ations F uture – S ocial Exclusion: S peech to the Joseph Rowntree Foundation’. 5 September 2006 . Burnett, R. (2007) ‘Never too early? Reflections ���������������������������������������������� on research and interventions for early developmental prevention of serious harm’, in M . Blyth, E. S olomon, and K. Baker (eds), Young People and Risk (Bristol: Policy Press), 97–112. Lord C arlile of Berriew QC (2006) An Independent Inquiry into the Use of Physical Restraint, Solitary Confinement and Forcible Strip Searching of Children in Prisons, Secure Training Centres and Local Authority Secure Children’s Homes (London: H oward League for Penal R eform). de Boer-Buquicchio, M . (2003) ‘Justice for Europe’s C hildren: 6th Kilbrandon Lecture’ (S trasbourg: C ouncil of Europe). F arrington, D . Childhood Risk Factors and Risk-focused Prevention. ������������ . HM T reasury (2003) Every Child Matters (London: The Stationery Office). Kemp, V., S orsby, A ., Liddle, M . and M errington, S . (2002) ‘A ssessing R esponses to Youth Offending in Northamptonshire’, Research Briefing 2 (London: NACRO ). M unro, E. (2007) ‘Evidence to the Inquiry on the Impact of S urveillance and D ata C ollection U pon Privacy of C itizens and T heir R elationship with the S tate’ (London: LS E). Office for the Commissioner for Human Rights (2005) Report by Mr Alvaro GilR obles, C ommissioner for H uman R ights on his visit to the U nited Kingdom 4–12 N ovember 2004. (S trasbourg: OHCHR ). S mith, D . J. (2005) ‘T he effectiveness of the juvenile justice system’, Criminal Justice 5: 2, 181–195. S utton, C ., U tting, D . and F arrington, D . (2004) Support from the Start: Working with Young Children and their Families to Reduce the Risks of Crime and Antisocial Behaviour (London: D fES ). T homas, R . (2007) ‘O ral Evidence to H ouse of Lords C onstitution C ommittee Inquiry on the Impact of S urveillance and D ata C ollection upon Privacy of C itizens and their R elationship with the S tate’ (London: HMSO ). U nited N ations (1990) Guidelines for the Prevention of Juvenile Delinquency (T he R iyadh Guidelines) A dopted and proclaimed by General A ssembly resolution 45/112 of 14 D ecember 1990 (S trasbourg: OHCHR ). U nited N ations C ommittee on the R ights of the C hild (2007) General Comment No 10: Children’s Rights in Juvenile Justice (S trasbourg: UNCRC ). Walker, J., Thompson, C.,Laing, K., Raybould, S., Coombes, M., Procter, S. and W ren, C . (2007) Youth Inclusion and Support Panels: Preventing Crime and Anti-Social Behaviour (London: DCSF ). Y outh Justice Board (2007) Towards a Youth Crime Prevention Strategy (London: Y JB).

C hapter 21

R eproductive T echnologies and the Question of the C hild’s F uture F reedom Erik Malmqvist

Introduction A major source of both hope and unease concerning new and emerging reproductive technologies, in particular those that apply a growing body of genetic knowledge, is that they bring with them increasing possibilities of deciding the kind of people that will be born. Prenatal and preimplantation genetic diagnosis (PND and PGD ) already allow would-be parents to choose not to give birth to children who suffer from specifically targeted genetic diseases. It has been suggested that the present scope for selecting the characteristics of future generations may come to expand radically. S ome believe that germline gene transfer has the potential of becoming a powerful tool both for replacing disease genes and for engineering genes that code for a wide variety of non-disease traits. But we do not need to speculate about the future in order to find uses of reproductive technologies that fall outside the current norm of disease prevention. R eported cases of non-medical sex selection and selection for disabilities such as deafness by means of PGD have already stirred up considerable controversy. Freedom Talk: Procreative Liberty and the Child’s Right to an Open Future Freedom has in some way or other been the focal point of much of the bioethical discussion about these technologies. O n the one hand, proponents of a permissive stance appeal to ‘procreative liberty’ (R obertson 1994), the widely shared view that prospective parents ought for the most part to be free to make their own reproductive choices, whether these choices are technologically assisted or not. O n the other hand, the reasons for a more cautious approach are sometimes also framed in terms of freedom. F eminists are concerned that growing technological possibilities may sometimes curtail, rather than expand, women’s freedom with respect to procreation (S herwin 1992). O thers are more troubled about the impact  F or a review of the current practice of PGD in US IVF clinics, including uses of the technology for non-medical sex selection and selection for disability, see Baruch et al. (forthcoming).

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that reproductive technologies might have on the freedom of the people who they assist in bringing into the world. It has been argued that the very same commitment to individual self-determination that underpins the defence of procreative liberty also implies that parents’ choices sometimes have to be restricted for the sake of the liberty of their would-be children (D avis 2001, 23). T he aim in what follows is to elucidate this broad concern about the freedom of those who are brought into existence by means of reproductive technologies. T his chapter also tries to spell out some of its normative implications. It begins by noting that the concern appears in recent commentaries as different as Jürgen H abermas’s The Future of Human Nature (2003) and N icholas A gar’s Liberal Eugenics (2004). This is striking because Habermas’s book is essentially an argument against using genetic reproductive technologies for the purpose of selecting and engineering the non-disease traits of future persons, while Agar’s book, on the contrary, is a defence of precisely such uses. However, a closer look reveals that the two are concerned about quite different things. Agar (2004, 103–106) wants to make sure that parents who genetically select or enhance the non-disease traits of their children do not limit the range of choices available to those children. H abermas, on the other hand, raises the question whether persons thus engineered would be capable of regarding themselves as autonomous choosers at all. As a first step towards clarification, it is useful to distinguish the Habermasian worry about autonomy from the concern about having choices that A gar represents. T here will be a focus on the latter concern, which has been expressed by a number of other authors too. D ena D avis, for instance, writes that ‘[p]arents ought not deliberately to substantively constrain the ability of their children to make a wide variety of life choices when they become adults’ (D avis 2001, 66). A nd A llen Buchanan and colleagues argue that ‘it would be wrong for parents substantially to close off most opportunities that would otherwise be available to their children’ (Buchanan et al. 2000, 170). A ll these authors appeal to what Joel F einberg in a much-discussed article calls ‘the child’s right to an open future’ – a child’s right to have ‘certain [future] key options … kept open until he is a fully formed, self-determining adult capable of deciding among them’ (F einberg 1992, 77). In his article, F einberg criticizes a court decision that granted an A mish community exemption from the legal obligation to send their children to school until the age of 16. T he problem with such an exemption, in Feinberg’s view, was that it threatened to make Amish children ill prepared for a sufficiently wide variety of different ways of life: An education that renders a child fit for only one way of life forecloses irrevocably his other options. He may become a pious Amish farmer, but it will be difficult to

 T his distinction is elaborated further and the concern about autonomy discussed elsewhere (M almqvist 2007). S ee W asserman 2003 for a similar distinction and Barclay 2003 for an in-depth discussion of genetic engineering and autonomy.

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the point of practical impossibility for him to become an engineer, a physician, a research scientist, a lawyer, or a business executive. (F einberg 1992: 82)

A pplying F einberg’s reasoning to reproductive choices, the authors referred to worry that some such choices may provide the children who are created with too narrow a range of options to choose from when they grow up. F or example, they are critical of deaf parents who want to use PGD to have deaf children on the grounds that deaf people tend to be restricted to fewer choices than hearing people, in terms of, for instance, career (D avis 2001, 64–65; A gar 2004, 106; cf. S avulescu 2002). For the sake of a more transparent discussion a somewhat more precise view of the conception of freedom at play in discourse on the child’s right to an open future is needed. T here is some opacity here, not least because the term ‘freedom’ is not in any consistent way distinguished from ‘autonomy’, ‘liberty’ and ‘selfdetermination’. H owever, the deafness example points us towards a certain conception, as do the words typically chosen: the problem envisioned is that the child may find certain opportunities or life plans ‘closed off’ or ‘ruled out’. We may call the conception of freedom implicit here ‘freedom of choice’. Its basic tenet is that all else being equal, a person is more free the more alternatives that are open for them to choose from. T heir freedom increases if the list of alternatives is lengthened and their freedom decreases if the list is shortened. Two Approaches to the Question of the Child’s Future Freedom T he basic idea captured by the notion of the child’s right to an open future in the context of reproductive technologies should be clear: would-be parents ought not (at least not deliberately; D avis 2001, 66) to use these technologies to bring into existence children with restricted options with respect to important life choices. But it is less clear what guidance this idea gives society. W hat uses are compatible with respect for the child’s future freedom? In order to begin to answer this question   For an outline of a concept of freedom along these lines, see Dworkin 1988, 14.  In order to avoid complicating the discussion, the chapter does not go into any length into what, following Derek Parfit (1984), is known as the ‘non-identity problem’. In the present context, this vexing problem arises because selecting the traits of future persons by means of reproductive technologies also sometimes determines the identities of those persons. In such cases the problem is not, properly speaking, that the parents might give a particular child fewer choices than that child would otherwise have had. T he problem is that they might have a child with fewer choices than another child that they could have had. It is not therefore possible to say that some right that a child has is violated by such a choice; respecting such a right would have entailed denying the right-bearer existence in the first place – which makes it a dubious right. In order to avoid this difficulty it has been decided to restate the open future argument in impersonal, non-right terms (cf. Wilkinson 2005: 60). The problematic implications that such a move might have (see Parfit 198, Ch. 17) will not be discussed here.

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some account is needed of w������������������������������������������������������� hat it is more precisely about parental selection that might restrict that freedom. O ne suggestion is that it is the selected trait. T his is implicit in A gar’s (2004, 106–109) argument that the permissibility of enhancing intelligence in future persons depends on what kind of trait intelligence is, whether it is something singular and unified, or rather a set of local, partly competing faculties. Only in the first case can it be certain that enhancing intelligence will not in fact constrain the opportunities of the future child. A nother suggestion is that it is not so much the trait as something about the parents’ act of selecting it, in particular their expectations, that might restrict the child’s freedom. F or instance, D avis is concerned about sex selection on the grounds that parents who are prepared to choose the sex of their child are likely to entertain strong gender-role expectations that will narrow the scope for the child to choose and pursue a life of their own (D avis 2001, 100–102). A ttention is given to these two suggestions because they provide two rather different ways to reflect on the question of how the fact that someone else has chosen some of a child’s traits might have repercussions for that child’s freedom. T he ‘narrow’ approach suggests a need to look at the traits themselves in order to find out whether they might restrict the child’s freedom. T he ‘wide’ approach suggests a need to look at the context in which the interventions take place, in particular the expectations that might be involved. T hese approaches will now be examined more closely. A s will be seen, they invite surprisingly different conclusions to be drawn as to what kinds of intervention are consistent with respecting the future freedom of the child, and neither of them supports the conclusion that is perhaps most commonly drawn. The narrow approach F irst, the narrow approach. H ere the question is: what traits are such that they themselves restrict the opportunities available to those who have them? S evere genetic diseases is what comes to mind first; having such a disease no doubt often means being confined to more limited life prospects than not having it. S election for or insertion of severe disease is thus ruled out. A s has already been seen, many regard deafness as similarly opportunity restricting, though that is not uncontroversial (Dolnick 1993).   By identifying two approaches to the question of the child’s future freedom it is not intended to categorize any of those who have discussed that question as representing exclusively either one of them. In the works of at least some of the authors cited, elements of both approaches may be found. F or instance, D avis’s (2001) critique of selection for deafness has the focus on a trait characteristic of the narrow approach, while her argument against sex selection as an example of the wide approach has been used. A critique of the narrow approach is, then, not so much a critique of a particular author or group of authors as of a way of posing and discussing the question.

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W hat about traits other than those usually considered diseases or disabilities? H ere too, it seems that some traits foreclose certain options. Being very tall may preclude a career as fighter jet pilot. This may tempt people to conclude that the narrow approach only endorses the engineering of what Buchanan et al. (2000, 167) call ‘general-purpose means’, traits that are useful regardless of what way of life one chooses to pursue. But this is not so. S ome traits may open up some possibilities for the same reason that they close off others. Being very tall comes with alternatives that are not available to those of average height, for instance a career as a professional basketball player. It has been suggested that increased height is a net benefit in the sense that it opens up more possibilities than it closes off (W asserman 2003, 101). T he same probably goes for many other non-disease traits. Initially, then, many kinds of selection for desired traits seem unproblematic from the point of view of the child’s future freedom. T his is further underscored by the fact that traits – particularly complex non-disease traits – do not depend on genes alone, but always require environmental input too. In most cases, the parents could not with any accuracy bring about the trait that they desire simply by selecting a certain genetic combination. They would also have to take various environmental measures: training, dietary regimes, and so on. T he choice of a particular genetic predisposition would, then, normally not by itself open or close any of the child’s future options. S o, respect for the child’s future freedom seems consistent with allowing parents to choose almost any genetic combination, barring those coding for diseases and disabilities. Some would probably find this conclusion too permissive. However, it is apparent that there is deeper problem with this first approach: it rests on too simple a conception of what it means by one’s options being open or closed. It is certainly true that having a particular genetically-based trait may be a necessary condition for having a particular option. H earing is for instance required for appreciating and playing music. A congenitally deaf person who has not had a cochlear implant inserted at an early age will not have the option of pursuing a career as a professional musician. But this does not mean that the range of options that someone has is simply a function of their traits; the trait necessary for an option may not be sufficient. T his is best illustrated with an example. A hearing person who has been raised by parents who do not regard music as a serious pursuit, and perhaps even despise musicians, and who as a result has never come to appreciate music themselves, may also be barred from becoming a musician. O ne reason may be that when they seriously consider what to do with their life, they will already be too old to acquire the highly developed sensibility that mastery of many musical instruments requires. A nother reason may be that a musician’s career does not occur to them as a serious alternative at all when they contemplate the direction that they want their life to take. It does not, so to speak, belong to the list of considered options. O r they may, as a consequence of their upbringing, believe that even if they tried

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to become a musician they would never succeed. In either of these two last cases, a musician’s career may well become an option for them if their beliefs or values change, but as things are, it is not an option in any meaningful sense. T he point being made is that one’s options at a given time only present themselves as options at all against a certain background, where one’s geneticallybased traits constitute only one of several factors. A s has been illustrated, one’s beliefs and values concerning those traits matter at least as much, as do the specific circumstances that one finds oneself in at the time. And these beliefs, values and circumstances are obviously not themselves up for choice by means of reproductive technology. If this is right, then merely looking at the traits that a person has from birth will usually tell very little about the options that they will have when as an adult they face some important decision. T he narrow approach appears unsatisfying precisely because of its narrowness. The wide approach W hat if the wide approach is adopted and the scope broadenedto also include the parental expectations that may motivate the selection of a particular trait? D avis’s concern about sex selection is succinctly captured in the claim that ‘to view a child primarily through its gender narrows the child’s ability to choose his or her own path through life’ (D avis 2001, 102). A nd, she goes on, ‘[t]he same would be true if we could choose a child’s height, musical ability, or aptitude for nuclear physics’ (ibid.). But what exactly is it about viewing a future child through a particular trait that is problematic from the point of view of its freedom? T he mere expectations of others are not generally thought of as something that significantly restricts freedom of choice. S o if an argument along D avis’s lines is to be convincing it has to be shown that there is something relevantly different about the parental expectations in the genetic selection case. In order to complete the argument the scope has to be widened further and consideration needs to be taken of what goes on in child rearing, and the role that parental expectations might have in that process. A child’s self is, to a much larger extent than adult selves, in the midst of being formed. T he child’s view of what is a worthwhile or even possible way of life, their conception of the scope and limits of their own capacities, and their particular sense of being someone who chooses between different options will  C f. Lennart N ordenfelt’s (2000, 131) point that ‘one cannot decide to perform a particular action unless one at least believes that one has the power to perform … the action in question’ (N ordenfelt’s emphasis). O n his analysis it is a necessary condition of being autonomous with respect to an action that one has both the ability and opportunity to decide to perform it. If N ordenfelt’s point is adopted for the purpose of the present discussion concerning what it means to have choices, it may be said that one does not have the choice of performing a particular action if one at the same time believes that the action is not within one’s power.

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only gradually develop. A nd the child’s parents play an important role in fostering this development. Parenting can thus be described as, among other things, the shaping of a self. Parents, usually together with other adults, encourage some ways of life and discourage others, promote the growth of some capacities and inhibit the growth of others, and to various extents support or fail to support the growing child’s sense of independence. It was suggested earlier that the options that a person has at a given time only manifest themselves against a multifaceted background. This background is stable at the moment a choice is made, but may change over time as a corollary of changes in beliefs, values, abilities and so on. M ore importantly, what has been illustrated here is that it is, to a large extent, the outcome of the rearing efforts of the person’s parents. From this perspective, it is only possible to speak of someone’s options with respect to some life decision as open or closed towards the end of the selfformation process just described. It will not do to try to correlate traits selected before the person is born with the options they have as an adult with respect to the decision, as the narrow approach suggests. Parental expectations may be significant for the child’s future freedom because, in the standard case, they have a profound impact on the shaping of that child’s self. T he point is not that the child, once old enough to choose between different ways of life, may find that their parents’ expectations bar them from some way of life that they wish to pursue, or push them towards some other way of life that they do not find worthwhile. The point is that the ways of life that occur to them as worthwhile or viable or even possible options are already to a large extent determined, partly by the parental expectations that have governed their upbringing. But why should anyone worry about this? Parents’ expectations influence children’s future options in the ways that have been described regardless of whether the parents have access to sophisticated technologies to satisfy their expectations. T his observation is sometimes made as a rejoinder against the open future argument: parents have always shaped their children, so new reproductive technologies cannot be objected to solely on the grounds that they too make possible such shaping. But this overlooks that the expectations involved in traditional, ‘non-technological’ child shaping may also be problematic from the point of   Scholars who take an interest in the parent-child relationship often highlight this aspect of parenting. One example is Sara Ruddick (1989). When using the term parents in this chapter it is meant what Ruddick refers to as ’mothers’: adults (men or women) who actually take care of childrens’ needs and raise them. A parent, in this sense of the term, is obviously not necessarily the child’s biological parent.   Some raise this point specifically as an objection to the open future argument (C ooper & H ampton 2007, 503–504). O thers raise it more generally, in order to illustrate an alleged moral parity between new uses of reproductive technology and old forms of ‘non-technological’ parenting (for example, R obertson 1994, 167). F or a critique of this style of reasoning in ethics, see Parens (1995).

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view of the child’s freedom. It also fails to appreciate that new technologies may amplify these old expectations, as well as their impact on children’s futures. For reasons of space, this last point cannot be fleshed out much here. Briefly, there are two reasons why the expectations involved in genetic selection and engineering may be worrying. It has not been suggest that those expectations are somehow unique or unprecedented, but rather that they could sometimes enter into the shaping of the child’s self more pervasively than many other parental expectations, in ways that are potentially more problematic for the child’s freedom. F irst, the fact that the parents in order to satisfy them are prepared to resort to such burdensome, unreliable and costly means seems to indicate that these expectations are very strong (Davis 2001, 101). And they are likely to be perceived as such by the child. Second, unlike many other parental expectations, they manifest themselves even before the child exists; the child is, so to speak, born with them. N ow what are the normative implications of the wide approach? It has been seen that some regard protection of the child’s future freedom as compatible with the selection of many non-disease traits, at least ‘general-purpose means’ (Buchanan et al. 2000; cf. A gar 2004). A nd it has been seen that the narrow approach seems to lead to an even more permissive conclusion. T he wide approach points in a rather different direction. If what matters to the open future of the child is not only the selected traits themselves, but also the expectations with which they are selected, this means that even traits that are in themselves useful for all life plans may be chosen with very particular life plans in view, with expectations that may restrict the child’s future freedom. T his should lead to caution about selection for non-disease traits. S o while respect for the child’s future freedom on the narrow approach rules out less than the general purpose means standard suggests, it rules out significantly more – potentially at least – on the wide approach. Conclusion In this chapter, it has been suggested that the discourse on the freedom of future people that pervades debates about the ethics of reproductive technologies harbours some quite distinct concerns. O ne of these concerns is captured in the claim that   The risk of too demanding parental expectations is probably an unavoidable feature of child rearing quite generally.�������������������������������������������������������� Parental ������������������������������������������������������� influence arguably always has to be carefully balanced against the child’s interest in future (adult) freedom.������������������������������ ����������������������������� M uch of the discussion about the right to an open future outside the context of the ethics of reproductive technologies has concerned precisely how such a balance is to be properly struck. Feinberg’s critics claim that the right that he proposes tips the scales too much in favour of the child’s future freedom, and that it consequently does not sufficiently acknowledge the parental interests involved in child rearing (Ruddick 1999; Mills 2003). However, Feinberg himself believes that the right gives plenty of room for parents to promote their own way of life (F einberg 1992, 88).

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children have a right to an open future. It has been demonstrated how this idea, depending on how it is integrated in an overall argument, may point towards very different normative conclusions about reproductive technologies. T he notion of the child’s right to an open future seems very plastic, which may be one reason why many find it attractive. F urther, it has been suggested that the underlying conception of freedom in open future discourse is centred on the notion of having a wide range of choices. It has also been argued that if sense is to be made of how reproductive technologies might pose a risk to freedom in this context, then the context in which these technologies are used should be taken into account. However, nothing has been said in defence of this conception of freedom. It needs to be acknowledged that freedom of choice is a contested ideal, both generally and as a part of the ethics of the parent-child relationship.10 Perhaps these two final remarks should lead to certain caution about open future discourse, both with respect to its usefulness for arriving at precise normative conclusions, and possibly also as regards its ethical underpinnings. References A gar, N . (2004) Liberal Eugenics: In Defence of Human Enhancement (London: Blackwell). Barclay, L. (2003) ‘Genetic engineering and autonomous agency’, Journal of Applied Philosophy 20, 223–236. Baruch, S ., Kaufman, D ., H udson, K.L. (forthcoming) ‘Genetic testing of embryos: Practices and perspectives of U .S . IVF clinics’, Fertility and Sterility. Buchanan, A., Brock, D.W., Daniels, N., and Wikler, D. ������� (2000) From Chance to Choice: Genetics and Justice (C ambridge: C ambridge U niversity Press). C ooper, N .J., and H ampton, S .J. (2007) ‘R eproductive technology in the context of reproductive teleology’, Bulletin of Science, Technology & Society 27, 498– 505. D avis, D .S . (2001) Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children’s Futures (New York: Routledge). Dolnick, E. (1993) ‘Deafness as culture’, The Atlantic Monthly 272, 37–53. Dworkin, G. (1988) The Theory and Practice of Autonomy (C ambridge: C ambridge U niversity Press).

10  Gerald Dworkin (1988) has criticized the general idea that having many choices is always a good thing. O thers have questioned whether parents have a duty to provide their children with as many future choices as possible (Ruddick 1999; Mills 2003). Yet others have suggested that freedom and related concepts may not be the most adequate tools when it comes to analyzing some of the concerns that new and emerging reproductive technologies give rise to (W asserman 2003; M almqvist 2007).

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F einberg, J. (1992) ‘T he child’s right to an open future’ [1980], in J. F einberg, Freedom and Fulfilment: Philosophical Essays (Princeton, N ew Jersey: Princeton U niversity Press), 76–97. H abermas, J. (2003) The Future of Human Nature (C ambridge: Polity). M almqvist, E. (2007) ‘A nalysing our qualms about “designing” future persons: A utonomy, freedom of choice, and interfering with nature’, Medicine, Health Care and Philosophy 10, 407–416. M ills, C . (2003) ‘T he child’s right to an open future?’, Journal of Social Philosophy 34, 499–509. N ordenfelt, L. (2000) Action, Ability and Health: Essays in the Philosophy of Action and Welfare (D ordrecht: Kluwer). Parens, E. (1995) ‘S hould we hold the (germ) line?’, Journal of Law, Medicine & Ethics 23, 173–176. Parfit, D. (1984) Reasons and Persons (��������������������������������� O xford: O xford U niversity Press). R oberson, J. (1994) Children of Choice: Freedom and the New Reproductive Technologies (Princeton, N ew Jersey: Princeton U niversity Press). Ruddick, S. (1995) Maternal Thinking: Towards a Politics of Peace (Boston: Beacon Press). Ruddick, W. (1999) ‘Parenthood: Three concepts and a principle’, in L.D. Houlgate (ed.), Family Values: Issues in Ethics, Society and the Family (Belmont: W adsworth). S avulescu, J. (2002) ‘D eaf lesbians, “designer disability”, and the future of medicine’, British Medical Journal 325, 771–773. S herwin, S . (1992) No Longer Patient: Feminist Ethics and Health Care (Philadelphia: T emple U niversity Press). W asserman, D .T . (2003) ‘M y fair baby: W hat’s wrong with parents genetically enhancing their children?’, in V.V. Gehring (ed.), Genetic Prospects: Essays on Biotechnology, Ethics, and Public Policy (Lanham: Rowman and Littlefield). Wilkinson, S. (2005) ‘“Designer babies”, instrumentalisation and the child’s right to an open future’, in N . A thanassoulis (ed.), Philosophical Reflections on Medical Ethics (H oundmills: Palgrave M acmillan).

C hapter 22

Ethics, Paediatric D oping and the Limitations of Gillick Consent Mike McNamee

Introduction T he issue of doping has generated considerable academic controversy since the 1980s. T oday, the worlds of elite sport are regulated by the W orld A nti D oping A ssociation whose code proscribes certain processes and pharmacological products that comprise doping and which receive various bans from athletic competition as their sanction. Amid the anecdotes and science fiction, the arguments for and against are supported by various academic disciplines. Generally speaking, it would be fair to say that both the philosophical (M iah 2004; M iah 2005; Parry 1998; T amburrini 2002) and sociological communities of sports-related scholars are sceptical of the legitimacy of the bans on doping. A few notable scholars and scientists have spoken against public and political opinion and declared that the bans should simply be revoked if they are grounded purely on ethical considerations (Kayser, M auron and M iah 2005; S avulescu 2007; S avulescu and F oddy 2007). M oreover, their postures have found their way into such august journals as Nature and The Lancet. Perhaps a brave new world of medical enhancement is being ushered in with sport as its foil. T here is always the danger, in supporting the banning of certain substances that one is considered timid (Bostrom 2005) or a weak-minded, Cassandra-like, figure. Worse, perhaps, for those who value academic freedom, one can be seen as an apologist for global institutions such as the International O lympic C ommittee (IOC ) or the W orld A nti D oping A ssociation (WADA ). Perhaps these are the reasons why so few scholars and scientists have offered arguments that argue contrary to the sceptical position or offer clear support for the bans on doping (H olm 2007; Loland 2002; M cN amee 2007).  ���������������������������������������������� F or historical overviews see D imeo, P. (2004) A History of Drug Use in Sport, 1876-1976: Beyond Good and Evil (London: R outledge); H oberman, J. (2002) ‘S ports physicians and the doping crisis in elite sport’, Clinical Journal of Sport Medicine, 12, 4, 203–208; H oberman, J. (2005) Testosterone Dreams, Berkeley: University of California Press; and W addington, I. (2005) ‘C hanging patterns of drug use in British sport from the 1960s’, Sport in History, 25,3, 472–496.  ��������������������������������������������������� See .  ����������������������������������������������������������������������� M ost recently revised in 2007: see accessed 14.11.07.

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Less frequently commented upon, in the philosophical literature at least, is the issue of paediatric or adolescent doping. W hat discussion there is in regard to this population is typically of a sociological and/or medical persuasion and does not address head-on the substantive ethical issues entailed. A recent article in the American Journal of Sports Medicine (D unn et al. 2007) on the ethics of the profession, if such it is (Edwards and M cN amee 2006) did not even include reference to paediatric populations in the entire article let alone with reference to physician assisted doping. T hus it might reasonably be thought that the wrongness of adolescent doping was self-evident. T o what extent is this presumption warranted? T he matter, upon consideration, seems less straightforward. W hat particular problems, it must be asked, are generated when the populations under consideration are themselves legal minors? A complete answer to this question is beyond the scope of the present work. Nevertheless, in this initial foray, a number of problems will be raised and one central difficulty within the issue considered: the capacity to consent to doping in an informed manner by a child or adolescent. It is considered whether the notion of Gillick competence to abortion surgery, in the absence of parental consent, sets a legal or ethical precedent for the child or adolescent who wishes to dope in order to enhance their sporting performance. Both scenarios certainly share at least the similarity that the child or adolescent might be considered competent to frame their conception of what is in their best interests. H aving compared and contrasted the scenarios, it is concluded that there are sufficient dissimilarities between them, not least in the lack of reliable information on which to make an informed judgment, not to warrant Gillick competence to be viewed as precedent-setting in the context of paediatric or adolescent doping. Paediatric Doping: The Evidence T o those unaware of the ethos of elite sports, the very idea of paediatric or adolescent doping may appear fanciful. T o dispel such scepticism, I present a selective survey of relevant sports medical research to show that such doping is no mere fiction. There is certainly evidence of a small, but significant proportion of children and adolescents engaging in doping practices. T he data available must, however, be treated with caution on methodological grounds. R ecent epidemiological surveys  ���������������������������������������������������������������� T hese terms will be used interchangeably throughout the chapter.  ��������������������������������������������������������������������������������� S ee, for example, Laure, P. (1997) ‘Epidemiologic approach of doping in sport: A review’, Sports Medicine and Physical Fitness 37, 3, 218–224 and Laure, P., Binsinger, C . (2007) ‘D oping prevalence among preadolescent athletes: a 4-year follow-up’, British Journal of Sports Medicine 41, 660–663.  ���������������������������������������������������������������������������� The author gratefully acknowledges the assistance of Andrew Bloodworth with whom they compiled a review of literature on doping ethics for U K S port as part of a larger social scientific project on the values and norms of elite young athletes with respect to doping (M cN amee, Bailey, Pearce and Bloodworth 2007 unpublished). Parts of this section are re-worked from that report.

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in the USA suggest that most children experiment with drugs such as alcohol, marijuana and tobacco (Greydanus and Patel 2005). W hy should doping products be any different? A lthough mindful of the fact that they are US -based, recent review articles suggest between 3 and 12% of adolescent males have used AAS at some point (Yesalis and Bahrke 2000) while others present figures of between 4–11% (Calfee and Fadale 2006) and 5–11% (American Association of Pediatrics 1997). It is important to note that this phenomenon is gendered. T he use of AAS by females is reported to be lower, around 1–2% admitting using steroids (Yesalis and Bahrke 2000). Clearly one must be careful about generalizing from studies based in one country where attitudes and values may be formed that are relatively specific to that country or even more specifically to its high school system and its predilection for professional-style athletic programmes. M oreover, as Kanayama et al. (2007) suggest there may be methodological weaknesses in such studies where high prevalence rates are deduced from questionnaire-reliant methodologies. W ith regard to females, the authors concur with F ield et al.’s suggested prevalence of 0.1% (Field et al. 2005), and, having reflected upon the limitations of other questionnaires producing higher prevalence ratings, suggest that the incidence of AAS among A merican boys (aged 14–19) is likely to be around 1% or possibly less (Kanayama et al. 2007). Of the populations most likely to consider doping practices, specifically the use of androgenic anabolic steroids (AAS ) to promote muscle growth, those engaged in sports with a significant power dimension (for example American football, weightlifting and bodybuilding) are most likely to feature (Bahrke et al. 2000). S imilarly, but perhaps more seriously in biomedical terms, S augy et al. (2006) have noted the effect of human growth hormone (hGH ), referring to its anabolic consequences also attracting those involved in sports with a significant emphasis on explosive power. It is also suggested that endurance athletes are using the drug ‘in combination with methods for enhancing oxygen transport’ to enhance sporting performance (S augy et al., 136). T he effects of rhGH (recombinant human growth hormone) are still being deliberated (S augy et al.) though their effects in increasing human stature are widely agreed upon. Nevertheless, their costs and the difficulties in ascertaining their proper therapeutic employment due to ambiguity in normal height ranges have meant that they continue to be a source of ethical discussion. M ore worryingly, given their developmental stage, adolescents also appear to be using hGH . Laure et al. (2004) have found it being used by high school athletes in France, of the 4% of athletes who admitted doping at least once, 13% specified peptide hormones, although this group includes not only hGH but tamoxifen and  ������������������������������������������������������������������������������ Much of the research is focused on US populations in any event (see Backhouse 2007).  ������ Baker et al. (2006) found 22% of the respondents in a study of health club users used tamoxifen, described as a ‘non-steroidal anti-oestrogen for women with ductal carcinoma in situ (DCIS) and for women at high risk of breast cancer’ (2006, 481). They go on to describe how it is used by bodybuilders to prevent breast development, a possible side effect of both AAS and growth hormone. Baker, J.S., Graham, M.R. and Davies, B. (2006)

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EPO. Wanjek et al. (2007), also indicated use of growth hormone by German adolescents, 0.4% of respondents compared with 0.7% having used AAS. As Allen and Frost (2000) report, however, there is a lack of data concerning the psychosocial benefits or harms from recipients of human growth hormone even in therapeutically indicated populations. Erythropoietin (EPO ) has been mainly utilized in endurance sports because of its aerobic benefits (Tokish et al. 2004). There have been a number of high profile examples of individuals testing positive for EPO , as well as accusations that entire cycling teams have been involved in doping practices. Vest C hristiansen indicates that cycling teams, anxious not to be implicated in doping scandals, with the resulting bad publicity, now leave doping decisions and organization up to the individual. In the absence of oversight and appropriate prescribing, the potential for serious harm is clearly magnified in these circumstances. Moreover, this laissez-faire practice has interesting implications for patterns in consumption, implications not often considered in studies focusing upon motivations and attitudes toward drug use. It is not enough just to want to enhance performance by doping, an athlete has to have the means and the contacts to not only procure the drugs in question but to gain the necessary advice about their use. T he young D anish cyclists interviewed in this study do not seem to have been introduced to such contacts. They had, unsurprisingly, heard about EPO, but knew little about other potential doping agents such as growth hormone, steroids and amphetamines and their potential effects.10 It is suggested that where doping takes place outside of the confines of the team, younger athletes are unlikely to come across it until later in their career. It also seems clear that, as with the underground scenario of illegal abortions, the elite adolescent sportsperson may turn to the ‘ethnopharmacologists’ as M onaghan11 refers to them, who will supply their wants with a degree of randomness that is seriously health-threatening. The sports population is not alone in finding AAS desirable. Baker et al. (2006) presented research findings on fitness gym/health club attendees, rather than competitive athletes, which indicated a rise in its use, the drug appealing to those in pursuit of a body ideal (Lister and M cGrory 2005). R eviews indicate between 30 and 40% of users (Bahrke et al. 2000) or one third (C alfee and F adale ‘Steroid and prescription medicine abuse in the health and fitness community: A regional study’, European Journal of Internal Medicine, 17, 479–484.  ��������������������������������������������������������������������������������� S ee Vest C hristiansen, A . (2005) ‘T he legacy of festina: patterns of drug use in European cycling since 1998’, Sport in History, 25,3, 497–514 for further detail. 10 ������������������������������������������������������������������������������ T his has been the author’s experience in conducting ongoing focus groups with elite 16–20-year-old athletes in the U K. 11 �������������������������������������������������������������������������������� M onaghan refers to these people effectively as street chemists, who live on the fringes of sports communities as much as general society and who, with some biochemical scientific training, ply a trade in unregulated pharmacological athletic enhancement. M onaghan, L.F . (2002) ‘Vocabularies of motive for illicit steroid use among bodybuilders’, Social Science and Medicine, 55, 695–708.

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2006) does not participate in competitive sport. Baker et al. (2006) note a plethora of literature concerning AAS in sport, but little on use in health clubs. T heir study, not confined to younger populations, though relevant to our concerns, highlights the existence of a problem in Britain, sampling health club users in S outh W ales, UK, finding a prevalence rate of 70%, 102 of the 146 respondents, admitting AAS use at some time of which 65.8% (n = 96) were currently using the drug.12 A further dimension of the research is noteworthy in respect both of athletic and non athletic populations. Its relevance is drawn from the fact that the majority of respondents began to use the drug in their late teenage years. In this light, at least some parts of the problem of doping substance abuse might be considered to be a problem with a paediatric genesis. A study of high school A merican football players found students starting even earlier, the average age of first time users 14 years. Fifteen per cent of the athletes began taking AAS before they were aged 10 (Stilger and Yesalis 1999). AAS use was also confirmed to be widespread in an earlier study of gym users in South Wales, 53% of the respondents having used AAS in the last year (Grace, Baker and Davies 2001). There is evidence elsewhere, however, that the use of EPO extends to the young. Laure and Binsinger (2005) in a F rench study have noted its supply to adolescent athletes by both parents and the family doctor, in a broader study investigating the performance enhancing drug black market.13 T his point will be returned to later. T he above is not, of course, an exhaustive survey of the prevalence of doping in adolescents. T he incidence ratings reported, however, certainly give an idea of the extent of the problem. H aving established that the problem of steroid and other pharmacological use/abuse is a genuine issue it is necessary to consider how autonomous might be the decision to dope in the light of what is referred to as ‘Gillick competence’. Gillick Competence: A Sketch The term ‘Gillick competence’ is widely used and well known in legal circles so a mere sketch of the case is given here in order to make sense of the discussion that contrasts and compares the relevant features of autonomous consent in paediatric populations. T he term14 derives from the name of a parent, Mrs Gillick, who 12 ����������������������������������������������������� Females made up only 7% of respondents in this study. 13 ���������������������������������������������������������������������������������� It is clear that there is a related issue worthy of note in relation to physician assisted doping but this cannot be explored in detail here. F or one aspect of the ethics of that situation see H olm (2007). 14 ���������������������������������������������������������������������������������� There is some dispute as to whether this appellation is sufficiently accurate for it to persist as common currency. Under the designation, Mrs Gillick, who brought the case against the N ational H ealth S ervice, is effectively famous for a case she lost. T here appears to be a schism in the professional activities of research ethics committees who have re-designated the said competence to Lord F raser, one of the Law Lords who sat in judgment. Wheeler (2006, 807) writes ‘An urban myth has emerged that Mrs Gillick

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brought a case against the N ational H ealth S ervice for allowing her 14-year-old daughter to consent to an abortion without her mother’s knowledge or authority. T he case turns upon the principle of respect for autonomy to determine one’s life plan and the actions therein. T he issue is often thought to stem from the liberal philosophy of John S tuart M ill who, among other things, championed what A rneson has called ‘agent sovereignty’.15 Loosely put, persons of sound mind should be able to do with their bodies and their selves as they wish so long as they are of sound mind and do not harm others. W hile ‘idiots and infants’ comprised the exception to M ill’s original formulation of the principle, the extension of respect for the decision that affect one’s pursuit of a self-generated or validated conception of the good life has more recently reached down to children who are possessed of the competence to understand the nature and consequences of the issue at hand. In medico-legal terms, the Gillick precedent allowed children, who demonstrated the relevant competence to grasp the treatment(s) proposed, and the consequences of not undergoing those treatments, to accept or reject to that treatment on their own behalf. T his consent was to be respected by healthcare professionals in the absence of authorization by parents or guardians. W hile the ethics of abortion is often constructed as an issue of rights it must be conceded that typically the law stands in favour of the rights of the mother rather than those of the foetus although of course this is a matter of considerable dispute in philosophical, political and religious literatures and cultures. T he rights of the mother are seen as an instantiation of the more general right to determine one’s own life. T he right to dope is not an idea widely canvassed. T hose who advocate for the bans to be lifted do not typically dress their argument up in the language of rights. But this is effectively the issue at hand. W here an adolescent can comprehend the ramifications of doping it might be said they have the right to consent to such medical intervention. Having sketched very briefly the contours of the Gillick case and its implications, it is necessary to enquire to what extent it might be relevant to decisions concerning the provision of doping substances to adolescents. Comparing and Contrasting Adolescent Competence to Consent for Abortion and Doping M ight certain children or adolescents be thought to be competent to consent to dope? T o begin with it will be useful to consider competence as a logically wishes to disassociate her name from the assessment of children’s capacity, thus carrying the implication that the objective test of a child’s competence should be renamed the F raser guidelines. T he myth is becoming dignified by research ethics committees (following the advice of the Central Office for Research Ethics Committees) and is being translated into national practice, although unsupported by any evidence’. 15 ��������������������������������������������������������������������� Arneson, R.J. (1999) ‘Human flourishing versus desire satisfaction’, Social Philosophy and Policy 16,1, 113–142, quote on 116.

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incomplete concept. It is analogous to the concept of fitness. One cannot properly ask the question whether X is fit, without specifying that in relation to which they can be evaluated as such. Are you fit is not a meaningful sentence without reference to a context: to lift a car, run a marathon, bandage a wound and so on. S o, with the idea of competence to consent, a universally applicable answer should not be expected. The question does not permit it. If the wish is to know whether someone is fit to give consent, then the question needs to be asked whether they are competent in the relevant sense. Culver and Gert (1982) refer to this as task-oriented competence. For children or adolescents to give informed consent to the use of doping substances they must understand what they are being asked to do before they can competently give consent. Is it possible to judge that children or adolescents are informable about the complex of benefits and harms that may attach to doping? Of course, being informable, as W hite notes, is not the same as being informed (W hite 1992). T he former is a capability or capacity while the latter is a positive state of affairs. T he question now is, whether children and adolescents are informable and capable of comprehension of the task at hand: in short, their competence must be determined. Given the controversy that surrounds the efficacy as well as the healththreatening effects of various products that fall under WADA ’s banned list, it is difficult to comprehend how anyone without a degree in the relevant biomedical sciences could come to a clear understanding of the scientific merits and de-merits of the various doping substances and processes. M ost professional bodies, in relation to sports medicine and sports governance, assert their harmfulness and this is one of three criteria by which such products and processes are banned by WADA .16 Baker et al. (2006, 481) note that ‘T he FDA in the U nited S tates has received more than 800 reports of adverse effects associated with use of products containing ephedrine alkaloid since 1994. These serious adverse effects include hypertension, palpitations, neuropathy, myopathy, psychosis, stroke, memory loss, heart rate irregularities, insomnia, nervousness, tremors, seizures, heart attacks, and death’. If we compare this Pandora’s Box with the potential physical and psychological harms of abortive surgery it seems that both the scope and the magnitude of potential harm is magnified in doping. While surgery is never without risks, it is by comparison, regulated and its practitioners have undergone professional training. M oreover, it is performed under conditions which emphasize the health and safety of the patient.17 C ompared, however, with the unregulated practice of ‘ethnopharmacologists’ it may be safe to assume that the risks are rather 16 ������������������������������������������������������������������������������������ T he others being that the substance is performance enhancing and against the spirit of sport. T he code adopts a policy of banning where at least two of the three criteria are met (or where a masking agent has been used to avoid detection of a product or substance under that rule). 17 ����������������������������������������������������������������������������������� N otwithstanding this generalization it is necessary to note that very considerable disquiet has been registered by political and religious communities about the validity and reliability of the statistics on mortality rates in abortive surgery.

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more controlled – though clearly one could not be anywhere near as confident with ‘backstreet abortions’, which may be more like for like in comparison. In certain communities abortion may result in the ex-communication of the potential mother. In W estern societies this clearly constitutes an exception rather than the rule. W hether merited or not, however, doping cheats at the elite level face the full sanction of the sports communities which partly constitute their emerging identity. WADA ’s rules indeed prevent doping cheats even from training with their respective clubs or teams. Moreover, high profile doping cheats make good copy: there seems little chance of escape from the media’s scrutiny and subsequent schadenfreude. In terms of status, cheats are required to hand back those medals won under unfair conditions. W orse, in the U K at least, doping cheats are required to pay back state funding since they have broken their contract to compete ‘clean’. Given the fleeting nature of athletic careers, many of which are not lucrative despite the publicity given to inflated footballers’ wages, being caught doping can mean serious financial hardship. It seems difficult to conceive of adolescents being able to consider so seriously the mid and long term consequences of getting caught which is what they would have to do to be considered competent to consent to doping. T hat much said the complex factors that attend abortive surgery are hardly less weighty. W hat may be said in their favour, perhaps, is the possibility of reversibility: except in tragic circumstances the potential mother may elect to become pregnant and give birth at a later date. T his option may not be realistic for the dope cheat who is caught since their period of excommunication is intended precisely to be an effective end to their athletic careers. T his may be eroded in adolescent contexts, but it would be a strong minded individual indeed who continued to train at the highest levels for one, two or four years while being unable to compete or receive financial assistance to allow them to focus on developing their athletic potential. Some further observations on the idea of Gillick competence to consent to contraception as opposed to paediatric and adolescent consent to doping are noteworthy. It seems a distinction can be drawn regarding the very nature of the actions entailed. The end point of Gillick’s right to consent18 is in order to prevent an occurrence: namely the birth of an unwanted foetus at that time. T he decision to dope is a commission inter alia to enhance one’s physical and/or psychological capacities; to enhance one’s chances of athletic success; to improve one’s physical appearance; to boost self-confidence and self-esteem; and so on. On its own, it is not clear whether it is better or worse to exercise a right of autonomy by way of consent to do one thing as opposed to prevent another thing happening. Perhaps it might be said that the act of abortive surgery belongs to the sphere of private actions whereas the act of doping is a public one. By this it is meant that no persons19 are directly and significantly affected bar the potential mother in 18 ������������������������������������������������������������������������������ W ell, one of them anyway: it might be objected that the motivation behind the exercise of the right was to demonstrate independence from her parents. Like any other act, the consent to contraception admits of multiple descriptions. 19 ������������������������������������������������������������������������������� T he potential status of the foetus as a person is ignored for present purposes.

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the first scenario, whereas there are other competitors who are affected – even in their ignorance of the act which is necessarily deceptive – in the doping scenario. But this is not entirely true. C onsider the angst that might be shared by both sets of parents or guardians were they to learn of their offspring’s actions. A ssume that neither sets of parents or guardians would approve hence the privacy of the exercise of their autonomy in consenting. Both may be equally hurt by the knowledge of the action. M oreover, there is an analogy between a potential father – unaware of the action and fellow competitors both of whom might be harmed by the actions of the consenting adolescent. Given that the exercise of consent mutatis mutandis in the former case is legally allowed for, why not the latter too? What of the relative benefits of both actions. Here the nature of the action comes into play. O ne could say that the ethical value of the permissibility of consent here is in the exercise of autonomy. It might be more forceful to say that in exercising the right to autonomous choice in contraception, the adolescent forestalls the experience of motherhood during schooling years which might be thought deleterious to her well being in educational and economic terms, as well as in terms of psychological coping. A fortiori the act is one of harm prevention it might be said. Another socio-psychological factor to be considered is whether Gillick consent to doping would be properly understood in relation to future addiction. M ight it be the case, unlike abortive surgery, where consent to doping may lead the adolescent on a path to addiction to a point where autonomous decision making was undermined: Y outh with life choices and options that are perceived as being limited are more likely to engage in high risk behaviors, such as substance abuse and unprotected sexual activity. Y outh may rationalize or perceive other social or personal “benefits” from substance abuse that override any identified health concerns. M any of them do not realize the negative consequences of drug use and abuse; some even believe that it is normal to use various drugs. The greatest risk for long-lasting dysfunctional patterns of substance abuse is the onset of use before age 15. (Greydanus and Patel 2005, 394)

N ow one response to this position might be to say, rational autonomy should not be conflated with prudence.20 This line of criticism is well known in moral and political philosophy after John R awls use of the veil of ignorance. F amously, R awls (R awls 1972) developed a thought experiment in which, ignorant of personal individuating facts (such as age, intelligence, ethnicity, sexuality and so on), rational agents necessarily choose prudent laws because they were unaware that they would benefit or be harmed by their future application in the context of present ignorance. But criticisms of this position are legion, so this appears not 20 ����������������������������������������������������������������������������������� This point is developed in the context of risky activities in McNamee, M.J. (2007) ‘Adventurous activity, prudent planners and risk’ in M.J. McNamee (ed.) Philosophy, Risk and Adventure Sports (London: R outledge), 1–9.

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to be a helpful line of thought. Why not entertain risky lifestyles? Why ought ‘chronological parochialism’ (Brown 1990) necessarily prevail? W hat of the focus on the quality of paediatric consent and the proper appreciation of the nature and consequences of the choice to dope. Greydanus and Patel (2005) note that ‘The greatest risk for long-lasting dysfunctional patterns of substance abuse is the onset of use before age 15’. S o perhaps the most important issue at hand here, from a public health perspective at least, is whether AAS or other preferred doping substances are ‘gateway drugs’ (Kandel & Logan 1984). T hese substances are so described for the reason that their use increases the likelihood of progression to other drugs. M oreover, given the motivational differences between doping substances it is not clear how to think of the most common substances such as H GH or AAS . A questionnaire-based cross-sectional study in S weden of more than 2000 16–19 year olds, led Kindlundh et al. (1999) to suggest that the motivation to enhance performance and body appearance has commonalities with other forms of substance abuse. But this in itself does not lend authoritative support for the application of the gateway principle. It might be thought that if the adolescent has gone to the point of using doping substances that the athlete has crossed a line in his attitudes (the statistics bear out the masculine designation) towards rules and the perceived perfection of his capacities. W hy not go further? T he point is moot. Perhaps what is most interesting is not the nature of the drugs themselves but the cultures into which the choices and behaviours are generated or the networks into which adolescents must operate if they are to access such drugs (Kandel and Logan 1984). But the evidence is not present to warrant any thing other than a precautionary principle. S till this in itself is noteworthy. The Role of the Physician in the Consent Process A s Lowden21 notes there is at least some dispute over the interpretation of certain consequences of Gillick which might be seen not exclusively as a triumph of respect for adolescents’ autonomy so much as an increase in the legitimated power of the medical profession who have the authority to exercise their own autonomy over parental interests. It may strike the reader with incredulity that members of the medical profession, whose traditional goals are therapeutic, they might become actively involved in the provision of doping substances. Y et it is clear that there has been such involvement to some extent at least.22 21 ������������������������������������������������������������ Lowden, J. (2002) ‘C hildren’s rights: a decade of dispute’, Journal of Advanced Nursing, 37:1, 100–107. S he is here following Bainham (1988) Children, Parents and the State (O xford: O xford U niversity Press). 22 ������������������������������������������������������������������������������������ T anner, S .M ., M iller, D .W ., A longi, C . (1995) ‘A nabolic steroid use by adolescents: prevalence, motives, and knowledge of risks’. Clinical Journal of Sport Medicine 2:108–115; S cott, D .M ., W agner, J.C ., Barlow, T .W . (1996) ‘A nabolic steroid use among

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Hunter and Pierscionek (2007) argue that though the clarity of Gillick competence is somewhat open to question in its application in particular cases, the issue of researchers attempting to gain adolescents’ consent for research participation is affected by a complete lack of guidance. In the case of paediatric doping, relevant institutions (such as the A mercian A ssociation of Pediatrics, and the International F ederation of S ports M edicine (FIMS ))23 are clear that the engagement of physicians in the provision of assistance to doping cheats is unprofessional. Furthermore, Hunter and Pierscionek (2007) conclude that in most cases it will be inappropriate to extend Gillick competence to research participation and the benefits to participants will only be very indirect ones. In cases such as paediatric doping, it might be argued, the benefit is very much direct. But then, it should be noted, were the adolescent to be exposed then the harms to them would be equally as direct. Even where it is potentially acceptable they recommend the presence of an independent evaluator of the child’s capacity to consent so that there is not a conflict of interests. The context of doping and its outlawing in sports-jurisprudence renders it highly unlikely that the deception necessarily entailed in doping supply would facilitate such independence. T his gives rise to immediate caution. W hat drives the process in Hunter and Pierscionek’s scenario is transparency – the very opposite of our clandestine clinical encounter in paediatric doping. F inally, Kayser et al. argue that the role of the physician is to serve the health of the patient – who for our present purposes is an elite sportsperson – and not concern themselves with rules relating to governance. T he role of the doctor is to preserve their patients’ best interests with respect to present and future health. A sports doctor has to fulfil this role while maintaining the athlete’s performance at as high a level as possible. A s such, as long as the first condition is met, any intervention proven safe, pharmacological or otherwise, should be justified, irrespective of whether or not it is ergogenic. A doctor who tries to enhance the performance of their athlete should not be punished for the use of pharmacological aids, but should be held accountable for any ill effects. R ather than speculate on antidoping test procedures, resources should be invested into protecting the integrity of doctors who make such judgments. (Kayser et al. 2004) adolescents in Nebraska schools’, American Journal of Health System Pharmacy 53:2068– 2072; Laure, P. (1997) ‘D oping in sports: doctors are providing drugs’, British Journal of Sports Medicine 3:258–259. R egarding physician ignorance as opposed to complicity see Laure, P., Lecerf, T . and Binsinger, C . (2003) ‘General practitioners and doping in sport: attitudes and experience: C ommentary’, British Journal of Sports Medicine 37: 335–338. 23 �������������������������������������������������������������������������������� T he R oyal C ollege of Paediatric and C hild H ealth (RC PCH ) in the U K is silent on the matter. They refer enquirers on specific sports and exercise related matters to the Royal C ollege of Physicians (London), the R oyal C ollege of S urgeons (Edinburgh) and the F aculty of Sport and Exercise Medicine. Sadly none of these bodies make explicit reference to the issue of paediatric doping though the British A ssociation of S port and Exercise M edicine does in its curriculum refer to ethical issues in consent in a general and cursory way.

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N evertheless, their position seems to rest upon a contradiction. If it is true that the effects, at least of some of the banned performance enhancing substances, are open to question on health grounds, how is the physician supposed to inform the (adolescent) patient about the risks which are simply unknown. At best their policy would be to allow the adolescent to consent only to doping which was devoid of health risks. Quite how many banned substances the adolescent could then consent to, comprehension, notwithstanding, is a moot point. Conclusion T his chapter has tried to show how the issue of paediatric/adolescent doping is a serious one which merits ethical and legal attention. W hile the ethical literature on doping rarely considers paediatric populations, it seems that the case that the legitimacy of their pursuance of these products and processes may be thought to fall under the conceptual province of ‘Gillick competence’ to consent. While the seriousness of decisions in both cases is undoubted, it has been argued that the harms attendant to doping, as opposed to the regulated use of the medical profession to terminate pregnancies under conditions of non-parental consent (ignoring debate as to the rights and wrongs of that issue), are of a greater magnitude to the adolescent patient/sportsperson themselves. A gainst the possibility for consent to doping, unlike the relatively known risks of abortive surgery, it has also been argued that the disputed scientific base for the harms case is such that the informational requirements of informed consent are likely to be undermined. M oreover, given the public prominence of the WADA bans, and the general public support for them, there is a resultant lack of transparency in the potential consent process. Finally, this lack of transparency renders all but impossible any audit for the accountability of the consent process. It is concluded that Gillick competence ought not, therefore, to be viewed as a precedent for paediatric or adolescent consent to doping. References A llen, D .B. and F rost, N .C . (2000) ‘Ethical issues in growth hormone therapy: W here are we now?’, Growth, Genetics and Hormones, 16:1, 7–9. A merican A ssociation of Pediatrics, C ommittee on S ports M edicine and F itness (1997) ‘A dolescents and anabolic steroids: A subject review’, Pediatrics, 99, 6, 904–908. Bahrke, M.S., Yesalis, C.E., Kopstein, A.N. and Stephens, J.A. (2000) ‘Risk factors associated with anabolic-androgenic steroid use among adolescents’, Sports Medicine, 29,6, 397–405. Bostrom, N . (2005) ‘T he fable of the dragon tyrant’, Journal of Medical Ethics, 31, 5, 273–277.

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Brown, W .M . (1990) ‘Practices and prudence’, Journal of the Philosophy of Sport, XVII , 75–90. C alfee, R . and F adale, P. (2006) ‘Popular ergogenic drugs and supplements in young athletes’, Pediatrics, 117, 3, e577–e589. C ulver, C .M . and Gert, B. (1982) Philosophy and Medicine (O xford: O xford U niversity Press). D unn, W .R ., George, M .S ., C hurchill, L. and S pindler, K.P. (2007) ‘Ethics in sports medicine’, American Journal of Sports Medicine, 35, 5, 840–844. Edwards, S .D . and M cN amee, M .J. (2006) ‘W hy sports medicine is not medicine’, Health Care Analysis, 15, 4, 103–109. F ield, A .E., Bryn A ustin, S ., C amargo, C .A ., Barr T aylor, C ., S triegel-M oore, R .H ., Loud, K.J. and C olditz, G.A . (2005) ‘Exposure to the mass media, body shape concerns, and the use of supplements to improve weight and shape among male and female adolescents’, Pediatrics, 116, 2, e214–e220. Grace, F., Baker, J. and Davies, B. (2001) ‘Anabolic androgenic steroid use in recreational gym users: A regional sample of the mid Glamorgan area’, Journal of Substance Use, 6, 189–195. Greydanus, D .E. and Patel, D .R . (2005) ‘T he adolescent and substance abuse: C urrent concepts, current problems’, Pediatric and Adolescent Health Care, 35, 78–98. H olm, S . (2007) ‘D oping under medical control – conceptually possible but impossible in the world of professional sports?’, Sport, Ethics and Philosophy, 1, 2, 135–145. Hunter, D. and Pierscionek, B.K. (2007) ‘Children, Gillick competence and consent for involvement in research’, Journal of Medical Ethics, 33, 659–662. Kanayama, G., Boynes, M ., H udson, J.I., F ield, A .E. and Pope Jr., H .G. (2007) ‘A nabolic steroid use among teenage girls: A n illusory problem?’, Drug and Alcohol Dependence, 88, 156–162. Kandel, D . and Logan, J. (1984) ‘Patterns of drug use from adolescence to young adulthood: I: Periods of initiation, continued use, and discontinuation’, American Journal of Public Health, 74, 660–666. Kayser, B., M auron, A . and M iah, A . (2005) ‘Legalisation of performanceenhancing drugs’, Lancet, 366, S 21. Kindlundh, A.M.S., Hagekull, B., Isacson, D.G.L. and Nyberg, F. (1999) ���������������� ‘F actors associated with adolescent use of doping agents: A nabolic androgenic steroids’, Addiction, 94, 4, 543–553. Laure, P. and Binsinger, C . (2005) ‘A dolescent athletes and the demand and supply of drugs to improve their performance’, Journal of Sports Science and Medicine, 4, 272–277. Laure, P., Lecerf, T ., F riser, A . and Binsinger, C . (2004) ‘D rugs, recreational drug use and attitudes towards doping of high school athletes’, International Journal of Sports Medicine, 25, 133–138. Lister, S . and M cGrory, D . (2005) ‘Quest for the body beautiful that can cause serious harm’, The Times 3 M ay 2005, A vailable O nline
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timesonline.co.uk/tol/news/uk/article387895.ece?print=yes>. Accessed 13 June 2007. Loland, S . (2002) Fair Play: A Moral Norm System (London: R outledge). Loland, S . and M urray, T .H . (2007) ‘T he ethics of the use of technologically constructed high-altitude environments to enhance performances in sport’, Scandinavian Journal of Medicine and Science in Sports, 17, 3, 193–195. M cN amee, M .J. (2007) ‘W hose Prometheus? T ranshumanism, biotechnology and the moral topography of sports medicine’, Sport, Ethics and Philosophy, 1, 2, 181–194. M iah, A . (2004) Genetically Modified Athletes (London: R outledge). M iah, A . (2005) ‘F rom anti-doping to a performance policy: S port technology, being human and doing ethics’, European Journal of Sport Science, 5, 1, 51– 57. Parry, S .J. (1988) ‘T he devil’s advocate’, Sport and Leisure, N ovember/D ecember, 34–35. R awls, J. (1972) A Theory of Justice (O xford: O xford U niversity Press). S augy, M ., R obinson, N ., S audan, C ., Baume, N ., A vois, L. and M angin, P. (2006) ‘H uman growth hormone doping in sport’, British Journal of Sports Medicine 40 (S upplement 1), 135–139. S avulescu, J. (2007) ‘D oping true to the spirit of sport’, Sydney Morning Herald, 8 A ugust 2007. S avulescu, J. and F oddy, B. (2007) ‘Ethics of performance enhancement in sport: D rugs and gene doping’, in R . A shcroft, A . D awson, H . D raper and J. M cM illan (eds) Principles of Healthcare Ethics (2nd edition) (London: John W iley & S ons Ltd), 511–520. S tilger, V.G. and Y esalis, C .E. (1999) ‘A nabolic-androgenic steroid use among high school football players’, Journal of Community Health, 24, 2, 131–145. T amburrini, C . (2002) ‘W hat’s wrong with doping?’, in C . T amburrini and T . T annsjo (eds) Values in Sports (London: R outledge). Tokish, J.M., Kocher, M.S. and Hawkins, R.J. (2004) ‘Ergogenic aids: A review of basic science, performance, side effects, and status in sports’, American Journal of Sports Medicine, 32, 1543–1553. Wanjek, B., Rosendahl, J., Strauss, B. and Gabriel, H.H. (2007) ‘Doping, drugs and drug abuse among adolescents in the state of T huringia (Germany): Prevalence, knowledge and attitudes’, International Journal of Sports Medicine, 28, 346– 353. Wheeler, R. (2006) ‘Gillick or Fraser? A plea for consistency over competence in children: Gillick and Fraser are not interchangeable’, British Medical Journal, 332 (8 A pril), 807. W hite, B. (1992) Competence to Consent (W ashington, DC : Georgetown U niversity Press). Yesalis, C.E. and Bahrke, M.S. (2000) ‘Doping among adolescent athletes’, Baillière’s Clinical Endocrinology and Metabolism, 14, 1, 25–35.

C hapter 23

W hat Protection D o C onsumers R equire in the Information Economy? Jane K. W inn

Introduction A dvances in information technology now provide consumers around the world with access to new products and services. W ith new opportunities come new challenges, which in turn call into question the adequacy of consumer protection laws enacted with industrial economy products and services in mind. Even the relevance of consumer law might be called into question, given that information in digital form is not even ‘consumed’ the way that tangible products are. T his chapter will consider what, if any, special protections consumers should be entitled to expect with regard to new products and markets in light of past and present understandings of the notion of consumer protection. A n analysis of current developments suggests that consumers’ entitlements vary considerably among different countries, and over time. What Is Consumer Protection? M odern legal systems confer on some individuals the status of ‘consumer’ when they engage in market transactions, a status which entitles them to special protections not enjoyed by other market actors. The notion of recognizing some individuals as being entitled to special treatment because of their status as ‘consumers’ emerged with the Industrial Revolution. The Oxford English Dictionary defines consumer as ‘O ne who uses up an article produced, thereby exhausting its exchangeable value: opposed to producer’ and traces this use of the term back to 1745. In economic theory, the idea that consumers represent a special category of contracting party can be found in M arshall’s Principles of Economics in 1890. O n the eve of the Industrial R evolution, restrictions on trade practices dating back to the Middle Ages created a dense patchwork of local regulation. These regulations were based on very different ideas of status relationships, and were  ���������������������������������������������������������������������������������������� Because information in digital form can be copied and distributed virtually costlessly, it has some of the attributes of a public good: non-exclusivity and non-rivalrousness.  ����������������� A lfred Marshall, Principles of Economics (London: Macmillan, 1920 [1890]), p. 109.

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enacted before the idea of freedom of contract had emerged. T hese were among the laws H enry M aine was referring to when he noted, ‘T he movement of the progressive societies has hitherto been a movement from S tatus to C ontract’. F or example, in England before 1770, local laws prohibited ‘regrating’ or the practice of buying and selling goods in the same market; ‘forestalling’ or the practice of buying or selling before the market opened; and ‘engrossing’ or the practice of accumulating large quantities of goods for the purpose of speculating, hoarding or profiteering (Atiyah 1979). Likewise, laws regulating the use of weights and measures and the quality of commodities can be traced back beyond the middle ages to ancient times (Spivak and Brenner 2001). The Industrial Revolution ushered in new forms of markets based on individualism and freedom of contract, sweeping away the remnants of older status relationships tied to feudalism. By the end of the nineteenth century, mass production and mass consumer demand had revolutionized the organization of markets (Atiyah 1979, 572–574). N ew wholesale and retail organizations, such as department stores, and new forms of advertising, had taken root. Even while the worst excesses of laissez-faire capitalism were unfolding in the nineteenth century, laws were being enacted to prevent some of the most obvious forms of market manipulation and fraud (Atiyah 1979, 545). But it was not until the late nineteenth and early twentieth centuries that the notion of ‘consumer’ as a special category of citizen entitled to protection emerged. In England, Parliament enacted the Adulteration of Food and Drink Act in 1860 after the medical journal The Lancet published the findings of Dr Hassall’s pioneering scientific research into adulteration of food and drink (Atiyah 1979, 546–547). In the United States, crusading reformers mobilized the public to take action to stop the production and distribution of dangerous products. O ne of the most famous and successful efforts was the novel, The Jungle published in 1906 by U pton S inclair, which documented the disgusting, dangerous conditions found in the US meatpacking industry at the time. Similar exposés were published regarding the ‘patent’ medicine industry, which marketed toxic products as remedies. The result of these scandals was the creation of the US F ood and D rug A dministration, which was given a mandate to regulate the safety of food and medicines sold to A merican consumers. T his was followed by the creation of the US F ederal T rade C ommission (FTC ) in 1914, which was given a mandate to protect consumers by preventing unfair and deceptive trade practices. N ational consumer associations such as the C onsumers U nion were also founded at this time. Public support for consumer protection continued to unfold during the 1920s and 1930s with the publication of popular exposés of widespread abuses of consumers such as Your Money’s Worth by Stuart Chase and F.J. Schlink in 1927, and 100,000,000 Guinea Pigs by Arthur Kallett and F.J. Schlink in 1933 (Finch 1985). T he US experienced a second wave of consumer law reforms that started in the 1960s and continued through the 1970s. C onsumer advocate R alph N ader galvanized consumer discontent with widespread shoddy merchandise and   Ancient Law (London: JM D ent and S ons, 1917 [1861]), p. 81.

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unethical practices by merchants with the publication in 1965 of Unsafe at Any Speed: the Designed-in Dangers of the American Automobile. M any important consumer protection laws were enacted as a result of this second consumer protection movement, including the T ruth in Lending A ct (1968) (regulating consumer credit, including credit cards); the T oy S afety A ct (1969) (authorizing regulation of toy producers); the F air C redit R eporting A ct (1970) (regulating consumer credit reports); the C onsumer Products S afety C ommission A ct (1972) (establishing a new consumer protection agency); the Equal C redit O pportunity A ct (1974) (prohibiting discrimination in the provision of consumer credit); the M agnuson-M oss W arranty A ct (1975) (prohibiting misleading practices regarding warranty disclosures); the Electronic F unds T ransfer A ct (1978) (regulating the use of debit cards) and the F air D ebt C ollection Practices A ct (1978) (prohibiting abusive forms of debt collection (S ilber 2006)). T he election in 1980 of R onald Reagan as president on a platform of rolling back government interference and bolstering individual initiative signaled the beginning of a change in A merican public perception of regulation generally. D uring the 1980s and 1990s, the volume of new consumer protection legislation slowed to a trickle as a result of the changing political climate in the US , due in part to increased public scepticism about the benefits of government regulation relative to its costs. A s public support for new consumer protection laws in the US waned, however, public support for such efforts gained momentum in Europe (Löfstedt and Vogel 2001). C onsumer protection policy was recognized as part of European economic integration for the first time at a summit of the heads of the Member States in Paris in 1972, and was followed by the first formal announcement of EEC policy to protect and educate consumers in 1975 (S chulze et al. 2002). T he Cassis de Dijon case decided by the European C ourt of Justice in 1979 in effect recognized consumer protection as a fundamental objective of European C ommunity Law. The Single European Act of 1986 and the push to complete the internal market by 1992 were strongly oriented toward liberalization and strengthening of market mechanisms. S everal important pieces of consumer protection legislation were passed as part of the move to a single market, including directives regulating doorstep selling (1985); consumer credit (1987) and package travel (1990). T he European commitment to strengthening consumer protection laws was part of strengthening the internal market found in the Treaty of Maastricht in 1992 and reinforced in the T reaty of A msterdam in 1997. T he renewed emphasis on government intervention in markets to protect consumers represented a retreat from the idea that the focus of protecting consumers should be on strengthening competition. In 1997, the European C ommission announced its intention to create a coherent legal framework within Europe for electronic commerce by the year 2000, which included strong consumer protection elements. A lthough the volume  �������������������������������������������������������������������������� Rewe-Zentral-AG v. Bundesmonopolverwaltung fur Branntwein [1979] ECR 649, C -120/78.  ��������������������������������������������������������������������������� A European Initiative on Electronic Commerce, COM(97) 157 final, 16.6.1997.

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of new EU consumer protection legislation has slowed in Europe in recent years, it has not abated altogether. F or example, in 2005, the EU passed the U nfair C ommercial Practices D irective, harmonizing and updating the law of unfair and deceptive trade practices in M ember S tates (A bbamonte 2006). A lthough many features of consumer protection law in the US and EU are similar, important differences remain. F or example, under US law, a consumer transaction is commonly defined as one undertaken by a natural person for goods or services for personal, family or household use. By contrast, most European countries have adopted a broader definition of consumer as someone acting outside their trade or profession, so even a merchant may be protected if acting outside his or her specialized trade or profession. Freedom of Contract and Market Justice The regulation of market transactions under both EU and US law are based on notions of ‘freedom of contract’, which in turn is based on ethical notions of individual autonomy and accountability (S cott and Kraus 2007). T he modern idea of freedom of contract as the foundation of state and market has its origins in the work of modern social contract theorists such as Thomas Hobbes, John Locke and Jean-Jacques R ousseau. In 1776, A dam S mith argued in the Wealth of Nations that allowing individuals throughout society to contract freely based on individual self-interest would achieve the highest level of prosperity for society as a whole as a result of the operation of the ‘invisible hand’ of the market. Atiyah describes these changes as a ‘new morality’ based on the idea that promises will be observed due to the individual self-interest of promisors, and a harmony of interests bound society together (A tiyah 1979, 84). T he idea that individual freedom could be increased by expanding the scope of contract law and reducing the role of status relationships in society, notwithstanding any hardships that might result from the loss of traditional regulations of market power, contributed to the social dislocation caused by the Industrial R evolution. T he creation of a special category of contract law to protect consumers is one reflection of the rejection of the individualistic ‘new morality’ of nineteenth century laissez-faire capitalism and the rise of the welfare state in the twentieth century. R eplacing private agreements with public controls can be seen as substituting paternalism for individual accountability, or it can be seen as an expression of social  ������������������������������������������������� S ee 15 US C ode § 1602(h) T ruth in Lending (2007).  ����������������������������������������������������������������������������������� 1968 Brussels C onvention on jurisdiction and the enforcement of judgments in civil and commercial matters, A rt. 13(1).  ��������������������� S ee, e.g, Karl M arx, Debates on the Law of the Theft of Wood, Rheinische Zeitung, N o. 298, S upplement, O ctober 25 1842 (describing the hardships caused by the repeal of a feudal law granting commoners the right to collect fallen wood from the floor of nobles’ forests for firewood).

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solidarity designed to ameliorate the excesses of unregulated markets. In recent decades, the idea that government intervention may be required to correct market failures, and to achieve the benefits competitive markets would have provided if they had existed, provides yet another justification for consumer protection law. A dvocates for traditional freedom of contract and strong consumer protections can each claim an ethical justification of their position. Traditional freedom of contract promotes individual accountability, and in aggregate, contributes to the productivity and efficiency of the economy and reduces waste. By contrast, strong consumer protection laws protect parties incapable of protecting themselves from those who seek to make unfair use of their greater market power. These two different perspectives can be harmonized in the concept of ‘market failure’. Markets fail to achieve optimal outcomes if there are gross disparities of bargaining power, leading to contracts based not on mutual self-interest but coercion; information asymmetries which may prevent a contracting party acting on accurate knowledge about the subject matter of the contract; or contracting parties suffering from bounded rationality, which prevents less sophisticated parties from fully analyzing the costs and benefits of a transaction before entering into it (Korobkin 2003). Confronted with incontrovertible evidence of market failure, even the most committed individualist would have trouble denying government any role in correcting the failure. While the conflict can be resolved in theory, in practice, the question of whether market failure actually exists in any particular instance has proven controversial and ambiguous. Consumer advocacy based on notions of distributive justice, rather than market failure, may require the redistribution of social resources. F rom this perspective, strong consumer protection laws may be justified as ‘taxation by regulation’ (Posner 1971). T o the extent that regulations raise the cost to all merchants of doing business with consumers, which in turn raises prices for all consumers, the costs of maintaining strong consumer protection laws are paid in the price of each transaction in much the same manner as a tax. T he taxation by regulation effect may result from either modern consumer protection regulations or from expansive interpretations of traditional equitable concepts such as ‘unconscionability’ which blocks the enforcement of contracts that are too one-sided. Proponents of freedom of contract note that excusing individual consumers from harsh bargains may look like a fair outcome in the context of one transaction, but may appear less fair when the consequences for all consumers are taken into account. C ompliance with mandatory consumer protection laws imposes higher costs on all consumers, even those with a greater appetite for risk who would prefer a less paternalistic regime. S ome goods and services may simply be withdrawn from consumer markets if merchants believe that compliance costs or litigation risks are too high. From this perspective, granting some consumers the option of agreeing to strict enforcement of merchant rights, even when this includes what may appear to others to be harsh bargains, will provide consumers generally with more choices, even though the results of greater choice may be painful for those individual consumers who actually do default (S chwartz and S cott 2003).

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T he ethical norm that equates strict enforcement of merchant-drafted consumer agreements with personal accountability, expanded choice and lower prices is actively promoted by US businesses, and enjoys a surprising degree of support among not just US businesses but also US regulators and consumers. T his ‘A ngloSaxon’ version of market values is one part of an institutional framework referred to as the ‘liberal market economy’ in political economy terms (Hall and Soskice 2001). T he ethical norm that equates strict enforcement of mandatory controls over merchant conduct with fundamental notions of fairness appears to enjoy strong support among EU regulators and consumers. It may also enjoy support from responsible merchants worried about being undercut by more nimble but less ethical competitors who want insurance that a level playing field will be maintained among merchants. These market values are part of an institutional framework referred to as the ‘coordinated market economy’ found in countries such as France or Germany (Hall and Soskice 2001). Impact of Technological Innovation on Consumers T he Industrial R evolution ushered in the era of mass production and consumption, which was later tamed by the use of modern administrative mechanisms such as public enforcement of consumer, workplace safety and environmental laws to expand the powers of the state. T he Information R evolution is now underway, and is rapidly undermining the balance of costs and benefits achieved through decades of regulating the modern industrial economy. In the midst of the social turmoil created by rapid technological innovation in consumer products and consumer marketing channels, support for a third wave of innovation in consumer protection laws may be emerging. In the information economy, some of the major players in the traditional retail markets, such as the mass media, broadcast television networks, travel agents, telephone companies, banks, brokerage firms and even department stores are being disintermediated by newer businesses that were ‘born digital’ such as A mazon.com, eBay, Yahoo! and Google. The foundations of consumer protection law are shifting as a result of lower transaction costs and increased competition in retail markets; the increasing importance of technical standards and interoperability; the blurring of the lines between producers and consumers in the production of information products; the relationship between information privacy and autonomy for consumers; and redefined intellectual property rights. In most of these arenas, the diverging US and EU notions of ethical behaviour are pushing law reform efforts and government oversight of consumer markets in different directions. Network Effects and Competition Information technology may fuel competition in consumer markets, or suppress it. In the US, where consumers already enjoy the benefits of the most competitive

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retail markets in the world (Surowiecki 2007), US regulators generally try to defer to the private sector and minimize government intervention that might lead to distortions and misallocation of resources. As a former US antitrust official observed, ‘the essential insight of the “Chicago School” is not that markets work perfectly, but rather that the market generally works better than government intervention’ (Leeds 1997). F rom this perspective, information technology reduces the need for government regulation by fueling more intense competition among retailers, lowering consumers’ transaction costs, and increasing transparency in markets. Increased competition among internet retail merchants may well promote a ‘race to the top’ or competition based on offering better products and services (N ocera 2008). In such an environment, US regulators have refrained from issuing new regulations or updating old regulations in the absence of compelling evidence that consumers are being treated unfairly, and as a result, as consumer protection laws from the 1960s and 1970s become more anachronistic, creeping deregulation through statutory obsolescence is occurring (W inn and W ebber 2008). W hen the focus shifts from trade in products to access to networks, however, the analysis is very different. Information networks suffer from strong positive and negative network externalities which create strong pressure for a single network rather than many competing networks. In this situation, increased use of IT increases the risk that monopolies will emerge, which would suppress competition instead of increasing it (S hapiro and Varian 1999). In Europe, consumers generally remain less enthusiastic about online shopping than their A merican counterparts. W hile the cause of such reluctance is uncertain, it is clear that retail markets in Europe remain less competitive than those in the US, notwithstanding more than a decade of efforts to promote competition through the expansion of the Internal Market (Dierx et al. 2007). T he response of EU regulators to European consumer reluctance to enter online markets has been to redouble regulatory efforts to increase consumer confidence, resulting in new legislation intended to hold internet merchants to at least the same, if not higher, standards as traditional retailers. European legislation intended to increase the confidence of consumers in online commerce includes the 1997 D istance S elling D irective and the 2000 Electronic C ommerce D irective. In addition, the vigorous enforcement of laws that apply to traditional and online merchants alike, such as unfair contract terms law, in online markets has prevented US-style creeping deregulation from occurring in European consumer markets (Winn and Webber 2006). Although European insistence that a uniformly high-level playing field be maintained for both traditional and online commerce is supposed to support the expansion of online markets, high compliance costs may be inhibiting their growth. Even if vigorous enforcement of strong consumer protection laws is stifling innovation in European retailing, however, this may be an accurate reflection of European ambivalence toward American-style unbridled consumerism and marketing innovations.  ������������������������������������������� Bumper season for holiday shopping online, Irish Times, 5 January 2007 (available in Lexis N ews).

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Technical Standards and Interoperability S tandards have long been associated with lower prices and increased consumer choice because they provide a foundation for competition, as well as quality controls for consumer goods and services (US Office of Technology Assessment 1992). Standardization may be even more important to consumers in markets organized around information technology than in traditional retail markets because it supports interoperability, which in turn can counterbalance the tendency toward monopoly created by strong network effects. Although regulators in both the US and EU are committed to promoting the use of standards in information technology, they pursue different strategies to achieve that common goal.10 T he US , as the leading liberal market economy, relies on private-sector competition among standarddeveloping organizations, while the EU, largely made up of coordinated market economies, relies on public sector institutions to harmonize the development of standards, eliminating much of the redundancy and waste associated with the US approach. S tandards in the US are generally developed by private-sector standard developing organizations such as the Internet Engineering Task Force, which develops Internet standards, or the Institute of Electrical and Electronics Engineers, which recently developed the most widely used standard for wireless internet communications, without direct government oversight or involvement. By contrast, standards in Europe are generally developed by national standards bodies such as the British S tandards Institute or multilateral organizations such as the European S tandards O rganization (C EN ). T his difference in institutional approaches is profound and is having a profound impact on the organization of global markets linked by the internet and other widely adopted information technologies. A lthough the EU approach is more responsive to government social and economic policies because it is more coordinated, transparent and inclusive than the US approach, it is also often slower and less responsive to market conditions than the US approach. As a result, standards developed by organizations with their roots in the US economy usually enjoy a decisive competitive advantage over European efforts, resulting in a significant bias toward US standards in global markets for information economy goods and services (Winn 2006). Part of the success of US standards in global markets is their narrow focus on business objectives to the exclusion of larger social and economic considerations. T he rapid spread of US IT standards around the world through the growth of online markets often has the effect of exporting liberal market economy institutions into co-ordinated market economies as a result of the aggregate effect of choices by individual consumers in co-ordinated market economies.

10 ���������������������������������������������������������������������������������� Final Report of the EU Study on the specific policy needs for ICT standardization (ENTR /05/96), 11 M ay 2007.

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Consumer Production and Social Commerce In the information economy, social commerce and internet-mediated co-operative production are breaking down the Industrial Revolution distinction between consumer and producer by turning consumers into producers. In the 1990s, new internet businesses such as Amazon.com and eBay began soliciting feedback from consumers. In 2001, Wikipedia, the free, multi-lingual, open-content internet encyclopedia was founded using ‘wiki’ technology to permit anyone with internet access to contribute content; by 2008, it had over 2 million entries in English.11 M any types of user-generated content rely on ‘W eb 2.0’12 technologies which support end-user control, rather than publisher control, over the process of aggregating content, and the collaborative organization of content through the creation of ‘folksonomies’. Web 2.0 applications include blogs;13 podcasts;14 wikis;15 RSS ;16 mashups;17 and social networking.18 W eb enterprises that depend on user-generated content, such as MySpace.com, Facebook.com, craigslist, Slashdot, Digg, Flickr, and YouTube.com, rely on consumer production and are considered to be forms of social commerce. Given the explosive growth in social commerce, it should come as no surprise that there is considerable uncertainty surrounding the rights and obligations of sponsors and contributors. In 2007, a family in T exas sued Virgin M obile in Australia for downloading a photograph of their daughter from the Flickr photosharing site and using it in internet and billboard advertisements without their consent, seeking damages for invasion of privacy and libel. On the other side of the equation, the media giant Viacom sued the video-sharing site Y ouT ube for $1 billion, claiming the site permitted its users to post and download content that infringed Viacom’s copyrights. W hile much of the value to consumers of usergenerated content, such as feedback provided by other consumers on goods and services, lies in the fact that it is supposed to be outside of merchant control, the openness of the internet makes it easy for merchants to pose as consumers and distort feedback with self-promotion or attacks on competitors. In 2006, however, the US FTC declined a request from a consumer advocacy group to develop a new 11 ���������������������������������������������������������������������������� Wikipedia, Wikipedia, (accessed 27 January 2008). 12 �������������������������������������������������������������������������������� Web 2.0, Wikipedia, (accessed 27 January 2008). 13 �������������������������������������������������������������������������������� Blog, Wikipedia, (accessed 27 January 2008). 14 �������������������������������������������������������������������������������� Podcast, Wikipedia, (accessed 27 January 2008). 15 �������������������������������������������������������������������������������� Wiki, Wikipedia, (accessed 27 January 2008). 16 ������������������������������������������������������������������������������ RSS, Wikipedia, (accessed 27 January 2008). 17 ������������������������������������������������������������������������������ Mashup, Wikipedia, (accessed 27 January 2008). 18 ������������������������������������������������������������������������������� Social Networking, Wikipedia, (accessed 27 January 2008).

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rule to regulate ‘word of mouth’ marketing practices, noting that existing FTC policies regarding deceptive marketing apply to new internet practices. In 2007, a court dismissed negligence claims brought against the social networking site M yS pace brought in connection with the assault of a teenage girl by a man she met on M yS pace, but in 2008, entered into an agreement with 49 state attorney generals to implement new safeguards to protect minors from sexual predators. Information Privacy The need to exercise some control over access to personally identifiable information is a central concern of consumers in the information economy. T he bifurcation between the European and A merican approach to social and economic regulation could not be clearer than in the area of information privacy. In Europe, control over personal information in many instances is deemed to be a fundamental human right. In the US by contrast, whoever collects and stores information is deemed to own it and, unless a specific law creates such a duty for a specific type of personal information, is not normally accountable to the individuals described by the data for the uses made of the data. A s a result, personal information about US consumers is often treated as a commodity that is readily available to many commercial entities, while in Europe, both the volume of personal information about consumers and the velocity of transaction in consumer information is very restricted. US consumers have generally acquiesced to widespread distribution of their personal information to businesses because it facilitates access to credit, which in turn facilitates consumption (C alder 1999). T he US has not granted its citizens a general right of information privacy equivalent to that established by the 1995 D ata Protection D irective for Europeans (S chwartz and R eidenberg 1996). In Europe, there appears to be a strong political consensus in favour of strong enforcement of data protection laws, even if that has the effect of curtailing consumption, as that would be a small price to pay to safeguard a fundamental right. N otwithstanding these different orientations, information privacy laws in both the US and EU often rely on the idea of ‘fair information practices’ to balance the competing interests of the individuals about whom the information pertains (‘data subjects’ in EU law) and those who wish to use that personal information. T he A merican version of fair information practices includes notice to the individual that information has been collected, consent to the collection, access to personal information held by others and an obligation to keep personal information secure. T he European version includes those practices, and also requires that the quantity of information be limited to only what is essential to accomplish the current objective, that the information be accurate, that information collected for one purpose not be used for another purpose without consent, and a right of data subjects to effective enforcement procedures to safeguard their other information privacy rights. T he US is now suffering an epidemic of identity theft which is made possible by weak information privacy protections and lax credit underwriting standards. By

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contrast, rates of identity theft are much lower in Europe because comprehensive restrictions on the re-use and sale of sensitive personal information mean ‘a lot less of their data is floating around’, and so less vulnerable to misuse.19 W hile US consumers might envy the greater security of consumers in countries that do not permit sensitive personal information to be traded as a commodity, it seems unlikely that US consumers will ever enjoy the strong, general data protection rights enjoyed by consumers in other countries. US consumers have little choice but to wait for market forces to fuel the development of new technological solutions to the problem of identity theft, or for legislators impose new liabilities on businesses that fail to secure their sensitive personal information. US merchants have developed sophisticated fraud detection technologies for use by credit card issuers that do not depend on input from consumers to work. These backend fraud detection systems analyze vast quantities of transaction data held by the card issuer, detect unusual behaviour patterns that may indicate fraud. It is possible that such backend systems may play a large part in the US response to the problem of identity theft, given that consumers have little ability to restrict the flow of their personal information. Notwithstanding the lack of strong data protection rights for US consumers under US law, regulators such as the FTC have struggled for more than a decade to find ways to increase the level of protection US consumers enjoy. In the 1990s, the FTC promoted the idea of voluntary self-regulation through the use of privacy policies by online merchants, but this programme enjoyed limited success. T he joint US -EU effort to encourage voluntary compliance by US merchants with EU data protection laws when handling the personal information of European consumers known as the ‘Safe Harbor’ has likewise been less successful than its sponsors hoped.20 By contrast, the FTC ’s efforts to create national standards for the security of sensitive personal information appear to be having more success. In theory, the FTC could issue a new regulation requiring US merchants to provide adequate security for sensitive personal information; however, in the absence of a new statutory mandate from Congress, such a move might precipitate a backlash from conservative legislators. In lieu of a new regulation, the FTC has undertaken dozens of highly publicized enforcement efforts against internet merchants who failed to secure sensitive personal information. Even though such enforcement efforts are not formally precedential in the same manner as judicial decisions, the record of these enforcement efforts has created a de facto national standard for the security of sensitive personal information.

19 ������������������������������������������������������������������������������� Liz Pulliam W eston, T he Basics: W hat Europe can teach us about identity theft, MSN Money (undated), available at . 20 ��������������������������������������������������������������������������� O nly a few hundred US companies ever signed up to participate, even though thousands handle the personal information of EU citizens. S ee S afe H arbor <www.export. gov/safeharbor/>.

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Intellectual Property Rights In 1978, the US N ational C ommission on N ew T echnological U ses of C opyrighted Works (CONTU) issued its report regarding the need to adapt copyright law in light of such developments as the growing economic importance of computer software and databases, the rapidly falling costs of making unauthorized copies of copyrighted works, and the likelihood that those trends would accelerate in the future. In the following decades, intellectual property laws in the US and Europe have been significantly reformed to the challenges posed by technological innovation, generally by strengthening the rights of intellectual property owners. C onsumer advocates in both the US and EU have argued that strengthening intellectual property rights and increasing enforcement efforts cannot save anachronistic business models, but they can undermine the balance between incentives for innovation and the public interest in the free circulation of ideas.21 Law reforms in both the US and EU have often disregarded these arguments, acceding instead to the demands of copyright owners. A s a result, the scope of the public domain and of limitations on those rights such as fair use under US law, fair dealing under U K law, or private copying exceptions under EU law, have diminished (S amuelson 1996). S uch law reforms include the 1998 US D igital M illennium C opyright A ct and the 2001 European C opyright D irective for the Information S ociety. T hese laws are based on the 1996 W orld Intellectual Property O rganization C opyright T reaty which requires signatories to prohibit circumvention of technological protection measures adopted by copyright owners to prevent piracy. W hen intellectual property owners adopt digital rights management (DRM ) technologies (also know as technical protection measures or TPM), they generally fail to make any provision for the exercise of fair use rights by consumers. A ccentuating the problem, courts in both the US and Europe have held that consumers have no greater rights under anti-circumvention laws than the copyright owner has chosen to permit to be exercised through the DRM technology.22 The growth of peer-to-peer file sharing networks that allow consumers to share digital copies of recordings is putting pressure on music and film industries to reconsider their business models and distribution systems. R espect for copyright among young consumers may be eroding faster than enforcement efforts can reinforce it, while new distribution systems may make it possible for performers to disintermediate the recording companies and reach their audiences directly (H ugenholtz et al. 2006). T he popularity of A pple’s iPod devices and its iT unes service have contributed to the growth of music downloads as a substitute for older distribution systems. It has also given Apple considerable market power because music distributed by A pple’s download service will play only on A pple devices. 21 ������������������������� S hapiro and Varian at 83. 22 ����������������������������������������������������������������������������� U niversal C ity S tudios v. R eimerdes, 111 F . S upp. 2d 294 (SDNY 2000), aff’d, 273 F .3d 429 (2d C ir. 2001); C our de C assation, A rrêt n° 549 du 28 février 2006 C iv., 1ère (M ulholland D rive D VD case).

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In 2006, the F rench government challenged A pple’s use of proprietary technology to exclude competition with reforms to its copyright law, which A pple labeled ‘state-sponsored piracy’. T he F rench copyright law reforms added protections for DRM technologies used by copyright owners as required by the EU C opyright D irective, but went on to include a new interoperability requirement to protect the public interest in competition. In 2007, the F rench government established a new agency, the R egulatory A uthority for T echnical M easures, to monitor whether DRM technologies used by copyright owners comply with the new interoperability requirements.23 Conclusion T he question of how much protection consumers should be entitled to expect has been answered differently at different times and in different places. T he US was once a leader in consumer protection law reforms, but increased scepticism about the benefits relative to the costs of government intervention in markets has caused the US to back away from this approach in recent decades. Although US consumers face creeping deregulation of consumer markets as existing consumer protection laws become anachronistic and are not replaced with new laws addressing new market conditions, they nevertheless enjoy some of the most competitive retail markets in the world. In areas where competition alone has not produced a high level of consumer protection, such as information privacy and the protection of intellectual property rights, the balance of political power appears to favour business rather than consumer interests. W hile advocates of the laissez-faire approach to regulation of consumer markets would argue that protecting businesses does protect consumers because businesses can only succeed in competitive markets by putting their customers’ interests first, American consumer advocates reject such arguments. By contrast, support for strong consumer protection laws in Europe has resulted in online merchants being held to high standards. W hile strong European consumer protection laws clearly contribute to better treatment of consumers in some arenas, such as data protection, in others, the outcome is less certain. European consumers enjoy fewer benefits from competition in both traditional and online retail markets than do US consumers, although it is unclear whether regulatory burdens are stifling competition. The European commitment to social inclusion and ambivalence toward consumerism are being manifested in a new wave of consumer protection laws, provoking hostility from US merchants and admiration from US consumer advocates.

23 ������������������������������������������������������������������������� N icolas Jondet, La F rance v. A pple: W ho’s the DAD VSI in DRM s? 3:4 SCRI PT ed 473 (2006).

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References A bbamonte, G. (2006) ‘T he unfair commercial practices directive: A n example of the new European consumer protection approach’, Columbia Journal of European Law 12, 695. A tiyah, P.S . (1979) The Rise and Fall of Freedom of Contract (New York: Oxford U niversity Press). C alder, L. (1999) Financing the American Dream (Princeton: Princeton U niversity Press). F inch, J.E. (1985) ‘A history of the consumer movement in the U nited S tates: Its literature and legislation’, Journal of Consumer Studies and Home Economics 9, 23–33. Hall, P.A. and Soskice D. (2001) ‘An introduction to the varieties of capitalism’ in P.A. Hall and D. Soskice, Varieties of Capitalism: The Institutional Foundations of Comparative Advantage (New York: Oxford University), 1–68. H ugenholtz, B., van Eechoud, M ., van Gompel, S ., Guibault, L. and H elberger, N . (2006). ‘T he R ecasting of C opyright & R elated R ights for the Knowledge Economy’, Institute for Information Law (IViR ), U niversity of A msterdam for DG Internal Market [available at ] Korobkin, R. (2003) ‘Bounded rationality, standard form contracts and unconscionability’, University of Chicago Law Review 70, 1203. Leeds, D .D . (1997) ‘R aising the standard: A ntitrust scrutiny of standard-setting consortia in high technology industries’, F ordham Intellectual Property, Media & Entertainment Law Journal 7, 641. Löfstedt, R. and Vogel, D. (2001) ‘The changing character of regulation: A comparison of Europe and the U nited S tates’, Risk Analysis 21:3, 399–416. N ocera, J. (2008) ‘Put Buyers F irst? W hat a C oncept’, New York Times, 5 January, . Posner, R . (1971) ‘T axation by regulation’, Bell Journal of Economics 2, 22. S amuelson, P. (1996) ‘T he copyright grab’, Wired, 4.01, January. Schulze, R., Schulte-Nolke, H., and Jones, J. ������� (2002) A Casebook on European Consumer Law (Portland, OR : H art). S chwartz, A . and S cott, R . (2003) ‘C ontract theory and the limits of contract law’, Yale Law Journal 113, 541, 562. S chwartz, P.M . and R eidenberg, J.R . (1996) Data Privacy Law (C harlottesville VA : M ichie). S cott, R .E. and Kraus, J.S . (2007) Contract Law and Theory (Newark, NJ: LexisN exis, 4th ed.). S hapiro, C . and Varian, H . (1999) Information Rules (C ambridge MA : H arvard Business S chool). S ilber, N . (2006) ‘F rom the jungle to the matrix: T he future of consumer protection in light of its past’, in J.K. W inn (ed.), Consumer Protection in the Age of the ‘Information Economy’ (Burlington, VT : A shgate), 15–34.

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Spivak, S.M. and Brenner, F.C. (2001) Standardization Essentials: Principles and Practice (New York: Marcel Dekker), 7–10. Surowiecki, J. (2007) ‘Financial Page: Greenback Blues’, New Yorker 8 O ctober 2007, 38. US Office of Technology Assessment (OTA) (1992) Global Standards: Building Blocks for the Future (Washington DC: Government Printing Office). W inn, J.K. (2006) ‘US and EU regulatory competition and authentication standards in electronic commerce’, Journal of IT Standards and Standardization Research 5:1, 84–102. W inn, J. and W ebber, M . (2006) ‘T he impact of EU unfair contract terms law on US business-to-consumer internet merchants’, The Business Lawyer, 62, 209–219.

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C hapter 24

Justifying C laims of S tate R esponsibility to M eet the N eeds of Irregular M igrants: T he Problem with Proceeding from H uman R ights M arit H ovdal M oan

C urrent liberal democratic state policies towards irregular migrants is characterized by a reluctance to recognize little more than irregular migrants’ right to privacy and procedural justice. T his is not to say that liberal democracies provide no assistance to irregular migrants in need; only that they do not think themselves obliged by justice to do so, given the migrants’ unauthorized presence on the state’s territory. N GO s and other proponents of irregular migrants’ rights dispute this view. R ather they maintain, with reference to everyone’s human right to have certain basic needs met, that the state is obliged by justice to provide irregular migrants in need with basic goods and services, such as housing, food, clothes, education and palliative healthcare, despite their unauthorized presence on the state territory. Assuming that advocates of irregular migrants’ rights aspire to influence state policies to irregular migrants, their human rights rhetoric is taken to suggest that principles of human rights are thought to carry enough normative force to move opponents of a more liberal policy to irregular migrants – that is heads of states and large sections of their electorate – to act on it. T his chapter problematizes  T he term ‘irregular migrants’ is used here to refer to non-nationals who for various reasons reside on the state’s territory without the necessary official authorization to do so. A person may fall into irregularity thus understood upon entering a state’s territory through unofficial channels, failure to leave the territory when their visa expires, or failure to depart following a final refusal of their asylum application.  A ssuming that legal codes as expressed in customary higher law provide a guide to a society’s established moral principles, liberal democratic states do not think irregular migrants are entitled to assistance in the same way as they are thought entitled to procedural justice and protection of their private person and property. S pace precludes a detailed account of liberal democratic states’ policies towards irregular migrants here. But see e.g. Platform for International Cooperation on Undocumented Migrants (<www.picum.org>), Book of Solidarity, vol. I, II , and III , for a helpful overview of irregular migrants’ access to social goods and services in Europe. A vailable online.

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this notion, with the aim of articulating more clearly and forcefully the claims that proponents of a more liberal policy on irregular migrants make on the state. In so doing this chapter starts by what O nora O ’N eill calls ‘a certain intuitive understanding’ of what one must require from moral reasoning for it to have any hope of guiding actual practice; namely that the reasons one provides in support of a moral claim are not morally arbitrary, and that they do not presuppose any views that might not be generally shared by all in the domain to which they are meant to apply (O ’N eill 2000, 12). It will be suggested that, with respect to the claim of state responsibility to meet the needs of irregular migrants, principles of human rights do not fulfil these criteria. Regarding the criterion of non-arbitrariness, the problem with invoking human rights to support claims of state duty to provide for irregular migrants in need is that advocates of irregular migrants’ rights distinguish between resident nonnationals in need, whose rights they champion, and non-nationals in need who do not reside on the state’s territory, whose interests they put aside. Given that human rights are essentially universal in scope this distinction becomes morally arbitrary, because, as Linda Bosniak forcefully argues, ‘[immigrants’] success at crossing the territory and/or remaining there is an enormously fortuitous affair’ (Bosniak 1996, 593). T o avoid the problem of arbitrariness, advocates of irregular migrants’ rights are compelled to pull in additional, non-universal reasons to explain why the state has a special responsibility to irregular migrants in need, which it does not necessarily have to migrants who did not make it over the border or who did not manage to remain. If advocates of irregular migrants rights were not to make this distinction, and thus avoid the problem of arbitrariness, they would implicitly be suggesting that the state’s obligation to provide for irregular migrants in need derive from the right of people in need everywhere to have their basic needs met. H owever, in what follows it will be shown that this would violate the criterion that reasons invoked to support a moral claim should be followed by those to whom the claim is directed. While doing this, the argument will draw on an understanding of justification in moral reasoning, according to which moral responsibility is justified if backed by reasons that can explain, (1) why the person who is making the claim has a valid claim to some treatment or some good, and (2) why the claim constitutes a valid claim against the moral agent who is asked to act on it. Following Onora O’Neill’s constructivist conceptualization of practical reasoning in normative ethics, the starting point will be taken that a moral claim against someone is justifiable if it is informed by a principle that all moral agents in the relevant domain can possibly comprehend, and which they could also coherently adopt and act on in practice.

 O nora O ’N eill, ‘F our models of practical reasoning’, in Bounds of Justice (C ambridge: C ambridge U niversity Press, 2000), pp. 11–28, at p.12.   Linda Bosniak, ‘Opposing prop. 187: undocumented immigrants and the national imagination’, Connecticut Law Review 28/3 (1996): 555–619, at p. 593.

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A ssuming that the moral agent in question is a liberal democracy, and basing myself on the above account of ethical reasoning, it will be suggested that the principle that everyone has a human right to have his or her basic needs met is comprehensible in the context of liberal democratic societies, so can establish that irregular migrants have a justified claim to some good. H owever, in as much as this principle places a corresponding universal duty on others to meet the needs of everyone everywhere, it is a principle that no moral agent could coherently adopt and act on, given moral agents’ boundedness and relatively limited resources. O ne can not establish, therefore, that irregular migrants have a valid claim against the state that it meets their needs on the basis of this principle alone. R ather, to sustain this claim, one must show that there is a morally relevant connection between the irregular migrants and the state, which obliges the state to meet their human right to have their basic needs met. Three arguments are recurrently invoked in support of contemporary liberal democratic states’ restrictive policies to irregular migrants. The first holds that, since the state does not consent to the irregular migrants’ presence on its territory, it has no duties to them beyond those which follow from constitutional essentials – which in modern liberal democracies would generally protect their procedural rights and bodily integrity, and the part of international law that places direct restrictions on states’ relation to resident non-members. T his argument is reminiscent of the philosophical view that duties vis-à-vis others, beyond the general duty not to harm, can only be incurred through voluntarily entered into relations, through agreements such as a promise or a contract. A residence permit is tantamount to a contract between the state and non-nationals, which makes the state duty-bound to the non-nationals in a way that it is not to other non-nationals with whom it stands in no contractual relation. Given that irregular migrants lack a residence permit the state can not be said to stand in a voluntarily entered into relation with them, so do not owe them anything beyond respecting certain fundamental freedoms and procedural rights.  ����������������������������������������������������������������������������������� A ccepting for now the admittedly problematic assumption that the state can qualify as an institutional moral agent, in the sense that it is capable of deliberation and purposive action�������������������������������������������������������������������������������������� . For a discussion of the relevant criteria for determining whether institutions like the state can have moral agency see e.g. Erskine, T. (2004) ‘Assigning responsibility to institutional moral agents: the case of states and quasi-states’, in T. Erskine (ed.), Can Institutions Have Responsibilities?: Collective Moral Agency and International Relations (Gordonsville, VA , USA : Palgrave M acM illan), 19–40.  S ee, for instance, the European C onvention on H uman R ights A rticle 1. C f. Guild, E. (2004) ‘W ho is an irregular migrant?’ in B. Bogusz et al. (eds), Irregular Migration and Human Rights: Theoretical, European and International Perspectives (Leiden/Boston: M artinus N ijhoff Publishers), 3–28, at p. 4. John R awls distinguishes between questions concerning constitutional essentials and ‘matters of basic justice’, which ‘concern questions of basic economic and social justice’. ‘T he idea of Public R eason R evisited’, in John R awls, The Law of Peoples (H arvard: H arvard U niversity Press, 2002), 133.  T he classical statement of this view remains H art, H .L.A . (1955) ‘A re there any natural rights?’, Philosophical Review, 84:3, 175–191, pp. 183–184.

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T he second, related, view, stipulates that irregular migrants in need are themselves responsible for the dire situation in which they find themselves, having entered or remained on the state’s territory without necessary authorization. T hey are also responsible, according to this reasoning, for not improving their situation by failing to leave the state’s territory. It follows that the state can not be held responsible for alleviating the difficult circumstances of irregular migrants in need. This argument reflects an understanding of remedial responsibility informed by legal reasoning to hold someone liable for harm. O n this model, responsibility is assigned on the basis of a causal connection between an act and the harmful circumstance for which remedy is sought; where no such causal connection can be said to exist, the moral agent can not be held responsible for remedying the harmful situation. F inally, there is the view that the state has a special responsibility for providing for its own members’ welfare first and foremost, because it stands in a mutually constitutive relation to them. Irregular migrants are not members of the community in the conventional sense of political membership, as generated by descent (juis sanguinis), birth (juis soli), or naturalization. T he state can therefore not be said to be duty-bound to meet their needs in the same way as it is duty-bound to meet the needs of its own nationals. R ather it may legitimately withhold goods and services from irregular migrants and use the resources instead to provide, or improve, services for its own nationals. T his argument echoes a third conception of moral responsibility in normative ethical theory, which grounds ethical reasoning in so-called ‘common-sense morality’; that is, the moral principles that follow from our intuitions of right and wrong. O n this account, there are certain special moral duties that we have towards others with whom we stand in a particular form of associative relationship, such as family, friends, colleagues and compatriots, which we do not have towards those with whom we stand in no such relation. T hese duties are thought to be more extensive than our duties towards others in general – in that they include positive as well as negative duties, and that in the case of conflict our duties to special others overrule our duties to others in general.10 A t the level of the state,   The term ‘remedial responsibility’ is taken from David Miller (2001) ‘Distributing responsibilities’, The Journal of Political Philosophy, 9, 453–471.  F or an outline of this model of liability see George F letcher (1999) Basic Concepts of Criminal Law (O xford: O xford U niversity Press). S ee also H art, H .L.A . and H onoré, T . (1985) Causation in the Law (O xford: C larendon Press). F or a critique of the liability model as basis for distributing responsibility for alleviating global injustice see Iris M arion Y oung (2007) Global Challenges: War, Self-Determination and Responsibility for Justice (C ambridge: Polity Press), 159–186. S ee also R obert E. Goodin (1985) Protecting the Vulnerable: A Reanalysis of our Social Responsibilities (C hicago and London: T he U niversity of C hicago Press), 125–134. 10 A classical discussion of the intuitionist conceptualization of moral responsibility in normative ethical theory is Henry Sidgwick (1907) The Methods of Ethics, 7th ed. (London: MacMillan and Company, Ltd.), Book I, ch. IV. Sidgwick dismisses intuitionism as ground

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this conceptualization of moral duty translates into the view that there are certain special, or positive, duties that the state has to its own nationals that it does not have towards human beings in general. C laims of state responsibility to provide for irregular migrants in need rely for their normative force on the ability of its proponents to provide an account of duties to assist strangers in need, other than that which informs the argument from contract, liability and associative relation – according to which duties to assist are generated by there being some sort of particular connection between the moral agent and the claimant. By appealing to principles of human rights to support their claim advocates of irregular migrants’ rights invoke, intentionally or not, an alternative conceptualization of duties to assist that denies the moral relevance of connection altogether for such duties to exist. T hat is to say, advocates of irregular migrants’ rights contend, implicitly or explicitly, that the state is obliged by justice to meet the needs of irregular migrants regardless of its particular connection to them. T he concept of human rights serves to articulate this understanding of the moral irrelevance of particular connections to determine whether and to which extent the state is obliged by justice to provide for irregular migrants in need. T he reasoning that presumably provides force to this claim start with the premise that there are certain fundamental rights to which everyone has a claim simply in virtue of their personhood, regardless of their legal status in a political community or the rights’ recognition in positive law. T hese rights in turn give rise to correlating duties, which someone is obliged to fulfil. This means that the obligation to fulfil the duty that correlates with a specific human right is thought to derive from that which justifies, or explain the existence of, that right in the first place, rather than from some special relation or previous transaction between the duty-bearer and the claimant. Implicit in the attempt to ground claims of state responsibility to provide for irregular migrants in need on human rights, then, is the notion that, given that irregular migrants have a justified claim to have their basic needs met, the state’s obligation to do what the duty that correlates with that right demands, follows from that which justifies the right in the first place. In contrast to the conceptualization of positive duties of justice as generated by particular connections, this understanding of positive moral duties as generated by the existence of universal human rights is intuitively appealing. W e need an ethical register to make sense of claims of moral duty to assist strangers in need, if for no other reason than to satisfy a powerful moral intuition to avoid suffering and pain. H owever, the problem with relying on common humanity to support claims of assistance to strangers is that, even if one assumes that moral principles are for moral claims and articulates instead a defence of utilitarianism. F or a contemporary defence of common-sense morality as basis for ethical reasoning, see e.g. Samuel Scheffler (2001) Boundaries and Allegiances: Problems of Justice and Responsibility in Liberal Thought (O xford: O xford U niversity Press). F or a critique of attempts to justify a narrow conception of our duties to non-nationals on the basis of it see e.g. R obert E. Goodin, ‘W hat is so special about our fellow countrymen?’, Ethics, 98:4, 663–686.

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universal in scope, they do not necessarily fix the scope of ethical consideration as universal, in the sense that it places a duty on everyone to do what the principle in question demands. T he reason is, I shall suggest, that the rationale that would support moral principles about what human beings are entitled to, will not necessarily support principles concerning the appropriate scope of moral agents’ duties of moral concern; that is, duties to act so as to fulfil that to which others are entitled. U niversal principles that are meant to ground claims to some good, and principles that determine who should act to meet someone’s claim to the good in question, do not necessarily concur. T his becomes clear if one assumes that moral principles intended to guide action require for their justification, and hence cogency, not only that they be reasonable from the reasoner’s point of view, but that they also be ‘�followable by those for whom it is to count as reasoning’.11 T����� hat is to say, it is not enough that the reasons a person offers for a particular course of action can satisfy their reason, but that those to whom reasons are offered can also reasonably be expected to follow them. ��������������������������������������� T his means, as O nora O ’N eill explains, first, that the principle on which one bases one’s moral claim must be assumed intelligible to all who are asked to act on it, within the relevant moral domain, in the sense that all can reasonably be expected to comprehend it – and the values and assumptions it incorporates. Importantly, this does not imply that the principle be based on beliefs and norms integral to a particular, geographically bound, value system. R ather it must be based on minimal assumptions concerning moral agents’ ‘capacities, capabilities and ordinary vulnerabilities’ in order to be translatable to, and hence followable by, what O ’N eill calls ‘inclusive audiences’.12 F or a principle to count as intelligible to all within the relevant domain to which the principle is applied, different moral agents must be assumed able to grasp it from within their particular value systems. S econd, it means that it must be a principle that all moral agents in the relevant domain could reasonably be expected to adopt and act on in practice, ‘in the sense that its universal adoption … would not be incoherent’.13 T he requirement here is not that the moral agents actually have the resources necessary or the skill or will to act on the principle here and now, but that it could, in principle, coherently be acted on by all in the relevant sphere. S o, for instance, a principle that required everyone to injure everyone else could not coherently be expected to be practiced by all moral agents, since someone would presumably act on it, so making others unable to act on it.14 Similarly, a principle that required everyone to sneak in line 11 O ’N eill, O . (1996) Towards Justice and Virtue: A constructive account of practical reasoning (C ambridge: C ambridge U niversity Press), 51. Emphasis in original. S ee also O ’N eill’s ‘F our models of practical reasoning’. 12 O ’N eill, Towards Justice and Virtue, pp. 55, 56. 13 O ’N eill, T owards Justice and Virtue, pp. 57, 59. 14  Ibid., p. 59.

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could not coherently be expected to be practiced by all moral agents, since that would cause the line to break down, and so render the whole concept of ‘standing in line’ meaningless.15 T he potential mismatch between universal principles grounding a claim to some good, and the appropriate scope of moral agents’ duties of moral concern, springs from the possibility that even if a moral agent can reasonably be expected to find a principle intelligible, it does not necessarily follow that all moral agents within the relevant domain could coherently be expected to adopt and act on it. The justification of moral claims to a good, therefore, is essentially a two-step process. C laims of moral responsibility to meet someone’s needs require for their justification that we explain not only why the person who is making the claim has a valid claim to some good or some treatment, but also why they can justly direct the claim against someone in particular. To make a moral claim to something, is to say that one is entitled to it as one’s due; to make a moral claim against someone is to say that he or she ought to act on that claim to provide the good in question.16 T he former requires for its vindication that the principle, or reason, on which it is based be intelligible to all in the relevant domain; the latter that the principle also could be adopted and acted on by all for whom it is intended to count as reason for action. W hat is crucial to the argument in this chapter is that a principle can be intelligible to everyone to whom it is meant to apply. But this does not necessarily imply that it could coherently be acted upon by everyone in that domain. C laims against the state from human rights that it assist irregular migrants in need take as their starting point the principle that everyone has a human right to have their basic needs met. T he assumption then is presumably that this principle can vindicate both the claim that irregular migrants have a valid claim to the goods necessary to meet their basic needs, as well as against the state that it provides the goods in question. W ith respect to the former claim, this is a reasonable assumption to make. The moral agents, for whom reasons for the claim that irregular migrants have a right to certain basic goods are to count, are modern liberal democratic states. If nothing else, the concept of human rights articulate the view that human beings have equal moral worth in virtue of their common humanity, and so that they have a justified claim to respect for their life, integrity and well being. This understanding of the value of human life is integral to the liberal universalism that characterizes modern liberal democratic societies, and their commitment

15  I owe this example to Bjørn Myskja. 16  I take this distinction between a claim to something or some good and a claim against someone from Fawcett, J.E.S. (1967) who takes the distinction from international law, ‘T he international protection of human rights’, in D .D . R aphael (ed.), Political Theory and the Rights of Man (Bloomington: Indiana U niversity Press), 125 and 128. S ee also Joel F einberg (1970) ‘T he nature and value of rights’, Journal of Value Inquiry 4, 243–260, at p.254.

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to freedom, reason and avoidance of suffering.17 O ne can reasonably assume, therefore, that the principle that everyone has a human right to having one’s basic needs met is one that all moral agents in the relevant domain can comprehend in thought, and so that the claim that irregular migrants in need have a valid claim to assistance.18 T he question is whether one can vindicate on this basis the claim that the state is obliged to act to meet irregular migrants’ right to have their basic needs met. That is, having established that irregular migrants have a justified claim to having their basic needs met, does it follow from this that there is a justified claim against the state to meet it? H uman rights are claim-rights and so necessarily constitute claims against some other who owes the corresponding duty to act on the particular right.19 In as much as the concept of rights makes it intelligible to claim that one is entitled to something as a matter of justice, and that someone has a correlative duty of justice to meet this claim in virtue of one’s rights (F einberg 1970), in theory, a principle of human rights seems to suggest that if someone has a justified claim to some right, they also have a justified claim against someone that it meet the right in question. H owever, this seems to create a problem of practical coherence. F or, if human rights are essentially universal in scope – that is, if ‘human rights are rights or entitlements that every human person [qua human] morally ought to have’ (Gewirth 1981) – and if having a right to X is not only to be entitled to X but for someone to have a correlating duty to fulfil X, then the very rights that place certain duties on the state to irregular migrants would place duties on it to meet the rights-claims of human beings everywhere. If one assumes that the state’s duty to meet irregular migrants’ basic needs derives directly from the latter’s human right to have such needs met, it follows, on pain of moral arbitrariness, that the state is equally responsible to meet the needs of non-members who do not reside on the state’s territory.

17 T hese values coexist of course with other, more particularist values. F or a discussion of the uneasy coexistence of these two value-sets in modern liberal democratic societies, see esp. C harles T aylor (1989) Sources of the Self: The Making of the Modern Identity (Cambridge: Cambridge University Press), ch. 25. See also Samuel Scheffler (2001) Boundaries and Allegiances: Problems of Justice and Responsibility in Liberal Thought (O xford: O xford U niversity Press), ch.4. 18 T he idea that there can be a human right to goods and services based on interests shared by all of humanity even if its correlating duty has not been specified is a recurring theme in the literature on human rights and global justice. S ee e.g. John T asioulas (2007) ‘T he moral reality of human rights’, in T homas Pogge (ed.), Freedom from Poverty as a Human Right: Who Owes What to the Very Poor? (O xford: O xford U niversity Press), 75–101. 19 S ome human rights are considered liberty rights, which are rights that establish one’s freedom from a duty to do specific things or act in specific ways. Liberty rights are not commonly thought to impose corresponding duties on others.

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T his conception of universal rights to goods as necessarily matched with universal duties fails to satisfy the requirement that for a principle to be justifiable, it must be one that all moral agents in the relevant domain could reasonably be expected to adopt and act on in practice. No moral agent could coherently be asked to provide the resources necessary to meet the needs of everyone. If a moral agent were to do so it would inevitably undermine its own resource base, so incapacitate itself to act on the principle that everyone should assist everyone in need. M oreover, universal duties to meet others’ needs cannot logically be discharged by all, if for no other reason than that moral agents are inherently bounded and so cannot possibly interfere to assist everyone in need, which a universal duty to meet positive rights seems to demand.20 T his does not mean that the principle that everyone has a human right to have one’s basic needs met has no role to play in justifying claims to state responsibility to meet the needs of irregular migrants. It only shows that, while universal principles grounded on common humanity can justify that someone is entitled to some good, they can not justify directing the claim against some particular other to provide the good in question. T hat is to say, the obligation to do what the duty that correlates with the right demands cannot follow from that which justifies the right. H owever, this seems to give rise to a new riddle. M ost human rights necessarily correlate with a duty that someone is obliged to meet. If the obligation to fulfil the duty to meet the right does not follow from that which justifies the right-claim in the first place, how can there be a duty, and hence a universal right to the good? The answer to this puzzle lies in the distinction that is commonly made in normative ethics, between two separate, albeit interrelated, levels of reasoning. S helly Kagan refers to these levels as the level of ‘normatively relevant factors’, which is where we identify the moral reasons, or factors, that we take to be relevant in determining the rightness or wrongness of an act, and the level of ‘foundations’, which is where we propose theoretical ‘mechanisms that purport to generate and thus explain the favoured list of normatively relevant factors’ (Kagan 1992, 224–225). Like negative universal rights to non-interference, positive universal rights to goods are matched by universal duties. H owever, in contrast to negative universal rights, positive universal rights correlate with universal duties at the level of foundations only. T hat is to say, to the extent that the existence of a universal right to some good can be justified or explained and so can be said to have a degree of ‘foundation’, one must presume that there is also a universal duty that correlates with it at this foundational level. H owever, since universal rights to goods cannot 20 T his echoes the libertarian argument against the view that socio-economic rights can be human rights. A n early argued version of this view can be found in M aurice C ranston (1967) ‘H uman rights, real and supposed’, in D .D . R aphael (ed.), Political Theory and the Rights of Man (Bloomington: Indiana U niversity Press). C ranston claimed that universal rights necessarily entail universal duties and that only liberty rights and ‘negative’ rightsclaims therefore qualify as genuine human rights.

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be discharged by all, to make conceptual sense they must be matched with special obligations at a non-foundational level. T his means that the duty to meet a universal right to a good is only latent. It becomes active, as it were, when factors external to that which justifies the right and its correlating duty at a foundational level enters the picture and triggers an obligation to fulfill it.21 A principle of human rights, then, can justify someone’s claim to some good at a foundational level, and establish that at the level of foundations there is a correlating duty to meet the claim. However, the obligation to do what the duty specifies is generated by specific, non-foundational, circumstances external to that which is thought to generate the right and its correlating duty in the first place. T his implies an asymmetrical understanding of the relation between universal moral principles and the scope of moral concern. R ather than viewing universal moral principles as necessarily implying universal moral concern, they are understood as triggered – in the sense that it obliges a particular moral agent to some particular other – only when a moral agent comes into contact with particular others to whom the principle applies. A n often cited example of this understanding of universal moral principles is the prohibition against breaking a promise. This principle applies in general to everyone everywhere, but is only triggered, in the sense that it obliges a particular moral agent to some particular other, when they actually make a promise to him or her.22 T o conclude, one may justly maintain on the basis of a principle of human rights that irregular migrants in need have a valid claim to assistance. H owever, the principle that everyone has a human right to having one’s basic needs met cannot alone vindicate that the state has a duty to fulfil that right. To have any hope of the claim serving as a guide to actual state practice, therefore, one must provide an additional account of the distribution of duties that can explain why a specific moral agent is responsible to meet the positive human rights-claims of some claimant in particular. This would involve appealing to the particular circumstances linking the state and the irregular migrant that could trigger the state’s obligation to do what the duty correlating to the irregular migrants’ positive rights-claim demands. T he state’s responsibility to meet irregular migrants’ positive rights-claims would derive then, not from the human right per se, but from an account of how the specific obligation to do what the duty that correlates with the universal right in question demands, should be allocated. T his does not disallow principles of human rights a role in justifying claims to state responsibility to meet the needs of irregular migrants; it 21 T his understanding of the relation between universal rights, duties and special obligations is taken from Onora O’Neill, Towards Justice and Virtue. S ee also O nora O ’N eill (1986) Faces of Hunger. An Essay of Poverty, Justice and Development (London: A llen and U nwin) and Bounds of Justice. 22 S ee e.g. T homas W . Pogge (1992) ‘C osmopolitanism and sovereignty’, Ethics, 103, 48–75, at p. 51, and S helly Kagan (1998) Normative Ethics (Boulder, C olorado/ O xford: W estview Press), 131.

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only suggests that the only role they can have is to articulate that which inspires, or is prior to, the state’s duty to show moral concern to irregular migrants in the first place.23 Acknowledgment I am grateful for comments on earlier versions of this chapter from Jakob Elster, Lene Bomann-Larsen, and M ay T horseth. References Bosniak, L. (1996) ‘Opposing prop. 187: Undocumented immigrants and the national imagination’, Connecticut Law Review 28:3, 555–619. F einberg, J. (1970) ‘T he nature and value of rights’, The Journal of Value Inquiry, 4, 243–257. Gewirth, A. (1981) ‘The basis and content of human rights’, in J.R. Pennock and J.W . C hapman (eds), Human Rights: N omos XXIII , 23. Kagan, S . (1992) ‘T he structure of normative ethics’, Philosophical Perspectives, 6, 223–242. O ’N eill, O . (2000) ‘F our models of practical reasoning’, in O . O ’N eill Bounds of Justice (C ambridge: C ambridge U niversity Press), 11–28.

23 T his understanding of moral rights-claims as the articulation of that which is prior to claims of the duty to show moral concern, echoes J.L.Mackie’s notion that our respect for duties is motivated by a prior moral concern for others, which only rights come close to articulate. J.L.Mackie (1984) ‘Can there be a right-based moral theory?’ in Jeremy Waldron (ed.), Theories of Rights (O xford: O xford U niversity Press), 168–181.

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Women Workers in the Global Economy: A F eminist C ritique of the C ore Labour S tandards Juanita Elias and H ayley S tevenson

Introduction In this chapter we examine how the contemporary labour standards regime, exemplified by the International Labour Organizations (ILO) Core Labour S tandards (C LS ), has, in general, failed to address the issues and problems faced by women workers in some of the most marginalized forms of employment in the global economy. O f particular concern to the argument developed in this chapter is the way in which the C LS are rooted in a minimalistic and neoliberal compatible commitment to workers’ ‘human rights’ (Shaw and Hale 2002, 101–112). The idea is to develop a feminist informed critique of this human rights perspective on labour standards. F eminist scholars have long raised issue with the way in which conceptions of human rights reflect a pervasive male bias and have sought to bring the concerns of women onto the international human rights agenda (Peters and W olper 1995). T his feminist scholarship provides an important foundation for understanding the implicit gender biases that have been built into the contemporary labour standards regime (Elias 2007). The CLS were designed to work within a broadly neoliberal model of development: a model dependent on the increased vulnerability and flexibilization of employment. In accordance with this model, the C LS encourage a voluntarist approach to labour regulation which places chief responsibility for the promotion of labour standards onto market actors – namely multinational firms. In this chapter we will show that this voluntarist approach merely reinforces gender inequality in the global economy. T he initial section of this chapter provides an overview of the origins of the C LS before turning to discuss how they can be critiqued from a gender perspective. A s already suggested, a particular problem with the C LS is the way in which they endorse a voluntarist mode of labour regulation. T hus in the second part of the chapter, the problems with the voluntarist position on labour regulation are demonstrated – exploring a number of feminist studies that have exposed the failure of (voluntarist) corporate codes of conduct in confronting the everyday problems faced by female workers.

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The Core Labour Standards as ‘Human Rights’ W ith the launching of its D eclaration of F undamental Principles and R ights at Work (1998), the ILO sought to overtly recognize the work that it does in terms of human rights promotion (M ertus 2005, 142). O ne of the dominant frames of reference in the ILO ’s turn to human rights has been the adoption of C LS which relates to basic trade union rights (collective bargaining and freedom of association), the banning of forced and child labour and non-discrimination. O f course, the role of the ILO in promoting economic rights as set out in the U nited N ation’s International C ovenant on Economic S ocial and C ultural R ights has long been recognized. H owever, since 1998 this small set of ‘core’ standards has been increasingly defined as ‘human rights’(Pangalangan 2002, Petersmann 2004, Valticos 1998). H owever, labelling the C LS as ‘human rights’ is problematic. A s A lston has argued, the CLS do not represent anything like ‘universal’ human standards, but were rather based on ‘a pragmatic political selection of what would be acceptable at the time to the U nited S tates’ (A lston 2004, 485). T he C LS emerged out of a period of crisis within the ILO following the end of the C old W ar and the failure of calls for a ‘social clause’ within the trade dispute mechanism of the WTO . A lston notes the declining US commitment towards the ILO , suggesting that the US was keen to establish a labour standards regime that moved away from a ratification model (2004, 485). T raditionally the ILO has operated on the principle that states that have signed up to its various conventions would then ratify them into domestic law. The US’s poor record on ratification left it exposed to criticism. It could well be suggested that talk of the CLS in terms of ‘human rights’ represents more of an attempt by the ILO (and indeed the US administration) to re-capture the ‘moral high ground’ on labour standards following the collapse of the labour standards debate at the WTO . Core labour standards through feminist lenses It is the contention in this chapter that the promotion of the C LS advances a view of worker rights as human rights which marginalizes the specific problems and concerns of women workers. For example, it has been argued that the human rights approach may not greatly benefit women workers since issues such as low wages and workplace harassment are not generally considered as ‘human rights’  ������������������������������������������������������������������������������ T he C LS relate to the following ILO conventions: C onvention no.87, freedom of association and protection of the right to organize, 1948; convention no.98, the right to organize and collective bargaining, 1949; convention no.29, forced labour, 1930, relating to the suppression of forced labour; convention no.105, the abolition of forced labour, 1957; convention no. 100, equal remuneration, 1951; convention no.111, discrimination (employment and occupation), 1958; convention no.138, minimum age, 1973; convention no.182, worst forms of child labour convention, 1999.

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issues (Shaw and Hale 2002, 109). However, this critique can be taken further with the suggestion that the C LS are broadly supportive of an unequal gender order. F or example, commitments to non-discrimination on the basis of gender in employment may well play a role in rendering the private sphere of women’s reproductive, domestic and work at home invisible. Given that women workers dominate the lowest paying sectors and industries of the global economy, one notable absence from the C LS is the issue of the right to earn a living wage (A lben 2001; Blackett 1999). T his omission is hardly surprising given the emphasis on a model of economic development based upon the attraction of F oreign D irect Investment (FDI ) (on the basis of labour costs) that has come to dominate mainstream development thinking. The relegation of this ‘right’ as somehow peripheral to the universal human rights agenda, lends credibility to the argument that the kinds of rights that will bring about meaningful change for the world’s poorest are incompatible with a broadly neoliberal economic development model characterized by deregulated and flexible labour markets. While the issue of fair wages is clearly one of great importance, some feminist scholars insist that this is often not the principal concern for women workers (Kabeer 2004, 16– 17; R obinson 2006, 326). D rawing on her research in the Bangladeshi garment industry, Kabeer suggests that women’s dissatisfaction in the workplace emerges from mandatory overtime, irregular payment of wages, restrictions on toilet breaks, sexual harassment in the workplace and while travelling to and from work, lack of child-care facilities, and lack of respect from supervisors (Kabeer 2004, 16–17). C learly such concerns are absent from the emerging ‘human rights’ approach to labour standards. The CLS might be usefully identified as an example of ‘gender-neutral treaty language’ (Kaufman and Lindquist 1995, 121–122). T here is no recognition of the specific problems that women workers face and many CLS may have the effect of benefiting male workers more. The CLS have been interpreted as standards that are most applicable to (predominantly male) workers in formal employment – thus feminized employment in the informal, domestic and home-work sector is overlooked. Feminist authors have pointed to the gendered assumptions pertaining to the essentially ‘domestic’ and/or ‘secondary’ role of women as a feature of almost all ILO activities. W hitworth, for instance, notes that during the early years of the ILO, legislation concerning the special status of women workers was limited to the protection of their reproductive health: women were protected only to fulfil their role of bearing children. Throughout the 1950s and 1960s, the issue of women’s equality gained greater salience within the ILO , yet rather than displacing the traditional association of women with the domestic sphere, campaigns to promote equality in the workplace reinforced this association by conforming to the structure of unequal domestic power relations rather than challenging this structure (W hitworth 1994, 134–140). H owever, with conventions such as the home work convention, the ILO has moved to re-evaluate its emphasis on formal sector work (Prügl 1999). It is in this sense that the establishment of the CLS approach is a particularly significant reaffirmation of the secondary status

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of women workers in the global economy. Turner (2004) observes that the CLS were designed with a focus on male workers in permanent employment. This is perhaps inevitable considering the male-dominant nature of the ILO and its main constituencies (namely, states, unions and employers). S chattschneider’s observation that ‘(political) organization is the mobilization of bias’ is pertinent here (1960, 105; Gelb and Palley 1979). Like other international institutions, masculinist thinking is institutionalized in the ILO; such thinking, according to Peterson (2005, 507), tends to be top-down, decontextualized, and pre-occupied with growth and quantifiable indicators. It has been suggested that women workers have potentially the most to gain from improvements in labour standards (Brasted 2004). M echanisms for protecting labour standards are often targeted at workers in low waged industries with poor working conditions, the kinds of jobs found in low value-added industries at the bottom end of global supply chains located in the developing world. F eminist researchers have long drawn attention to the gendered nature of global production (Elson and Pearson, 1981; M itter 1986), yet the development of the labour standards debate has not adequately addressed the concerns raised in this literature. In particular, this literature points to the feminization of labour: a process which has developed alongside industrialization in parts of the global south since the 1970s (S tanding 1999). Grown et al. explain this as a dual process: ‘first as a rapid and substantial increase in the share of women in paid employment; and second as a transformation of the conditions of paid work, such that more jobs are casual, irregular, flexible and precarious, characteristics that hitherto were more typical of “women’s work” than of “men’s work”’ (1999, 1147). The increasing concentration of women in labour-intensive export-oriented industries is largely attributable to the pervasive representation of women as passive and docile, and as ‘secondary’ income earners who will silently tolerate poor working conditions (Peterson 2003, 62). S ince the 1970s, when multinational corporations began to relocate their operations to the south, the subordinate position of women has been perceived as a comparative advantage on the global market (Kabeer 2004, 14–15). Indeed, the globalization of production has depended on the availability of low wage feminized, factory employment. The vulnerability of women working in formal production operations is also reflected (and is perhaps more acute) in the informal sector, which includes home-based work and temporary and contract labourers in more formal settings. A recent UNIF EM (U nited N ations D evelopment F und for W omen) report reveals that, in the south, the informal sector is a larger source of employment for women than the formal sector, and that women are more likely than men to be found in informal forms of employment (C hen 2005, 39). A rigid private/public dichotomy renders women (and men) employed in the informal sector invisible and beyond the purview of trade unions, protective legislation, and voluntary codes of conduct.

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Examining Voluntarist Modes of Corporate Regulation from a Feminist Perspective A nother concern relating to the gendered consequences of the C LS can be raised when looking at how the CLS approach has legitimated the role of the corporation as the principle regulatory agent in enforcing labour standards throughout their supply-chains (Elias 2003). A lston raises the point that the C LS approach has acted to undermine some of the solid foundations that the ILO had developed in the enforcement and monitoring of labour standards (A lston 2004). U nsurprisingly, given the predominance of a language of human rights in the C LS , we can also point to how corporations have adopted the language of ‘human rights’ in statements of ‘corporate social responsibility’ (CSR ) and their corporate codes of conduct (as well as in their dealings with the U nited N ation’s ‘Global C ompact’ aimed at securing better practices of corporate ‘citizenship’). C odes typically consist of a statement of minimum labour conditions focusing on issues such as the working environment and health and safety standards, assurances that the firm will comply with local laws and guarantees that the firm will uphold anti-discriminatory employment practices (Urminsky 2001). Unsurprisingly, the code of conduct approach has been widely criticized. T he suggestion is made that voluntary codes come to be regarded as a substitute for binding regulatory responses when they really should be viewed as complementary to them (Jenkins et al. 2002, 1). T hus, attention must be drawn to Uvin’s concern that talk of ‘rights’ grants actors a ‘moral purpose’ that legitimates their activities (U vin 2000, 1). Gendering codes of conduct: Feminist activism and research T he problems with codes of conduct are deftly exposed in a variety of feminist studies. H ere we present an overview of several recent studies which collectively demonstrate how commitments to human rights through corporate codes of conduct fail to confront the everyday problems faced by female workers. This research also calls into question the compatibility of a neoliberal development paradigm with the needs of marginalized groups of women workers employed in areas such as export-processing, homework and the informal sector. It is our contention that the kinds of issues endorsed in the CLS and reflected in codes tend to buttress a neoliberal development paradigm without improving the status of female workers. C arr, C hen and T ate’s research into the impact of globalization on women home-based workers draws attention to the failure of voluntary codes of conduct to address the concerns of these workers (2000). The structural power bestowed upon  �������������������������������������������������������������������������� The term ‘home-based worker’ refers to independent producers or dependent subcontract workers; it does not include unpaid housework or subsistence production. Available evidence shows that the majority of home-based workers are women (Carr et al. 2000, pp.127–128).

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transnational companies through global integration has allowed them to construct labour conditions that are most favourable to maximizing profits. As a result, an increasing number of women in the export sector are employed as home-based workers, placing them beyond the reach of most codes of conduct and transferring many risks and costs from the company or subcontractor onto the worker (Carr et al. 2000, 129). Although the ILO made a significant step towards recognizing the rights of home-based workers by adopting the Convention on Homework in 1996 (Prügl 1999, 100–120), the C onvention’s impact has been minimal as the overwhelming majority of the world’s governments have refused to ratify it. Prügl rightly identifies the Convention as a victory for the feminist movement in terms of weakening public-private and work-home dichotomies (1999, 108–120). H owever, due to the voluntary nature of ratifying international conventions and adopting codes, this symbolic victory has been thwarted in practice as women employed in home environments remain vulnerable to long hours, low wages, poor lighting and job insecurity. T he enduring challenge of uniting the realms of production and reproduction is also taken up in the recent work of Robinson (2006) and Pearson (2007). Pearson argues that voluntary codes of conduct are based on an excessively narrow conception of corporate social responsibility, which, she proposes, ought to be replaced by a holistic gender-sensitive conception. In contrast to extant codes of conduct, which are applicable only to individual workers within the workplace, a gender-sensitive conception of responsibility would accommodate and support women’s productive and reproductive roles in society; responsibility would thus extend beyond individual workers to ‘the whole population cohort from which cheap labour is drawn’ (2007, 735–736). Given the benefits that corporations draw from social reproduction (i.e., ‘the production of labour power on a daily and generational basis’ (Pearson 2007, 739)), Pearson’s argument that CSR and codes of conduct should extend to ‘social production’ is entirely justified. Drawing on the case of C iudad Juarez in M exico, Pearson exposes how the present conceptions of codes of conduct and CSR are complicit in the murder of hundreds of women in the vicinity of this city’s export factories (maquiladoras). M ost of these women were employees of the maquiladoras, but more significant is the fact that almost all were part of the population cohort from which the maquiladoras have drawn their labour force since the 1970s. N evertheless, the factory owners absolved themselves of responsibility by claiming that ‘no business is responsible for the safety of its workers, except in the factory’ (Sarabia cited in Pearson 2007, 742). T his position not only marginalizes the importance of social production, but it also ignores the wider contextual factors which have also contributed to the murders. A s Pearson documents, the population of C iudad Juarez has grown at an exponential rate since the 1970s when corporations began to relocate their operations to the area. A s the maquiladora industry has expanded, the city’s infrastructure has  �������������������������������������������������������������������������������� Only���������������������������������������������������������������������������� four countries have ratified the Convention on Homework: Albania, Finland, Ireland and the N etherlands.

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continued to deteriorate and many of the workers live in poor areas without police services or adequate public transport. T o carry out their productive role in society, women workers have to jeopardize their own safety and their social reproductive responsibilities. By incorporating the wider conditions under which labour is produced, a gendered conception of CSR would place responsibility for the safety of these women onto the corporations which benefit from the reproduction of labour. In a similar vein, Robinson has suggested that the concerns of women workers can only be addressed by replacing the dominant rights-based approach to labour standards with a feminist political ethics of care (2006). W hereas the former represents people as autonomous and rational individuals, the latter places people in their wider social contexts and represents them as relational beings. R obinson’s ethics of care ‘assumes that all persons exist in networks of relationships, and are fundamentally interdependent… Rather than focusing on individual rights, reciprocal obligations, or universal justice, it emphasizes responsiveness, responsibility, attentiveness, competence and trust as moral values’. T herefore the nature of codes of conduct must evolve to recognize and accommodate the reality that male and female workers exist within networks of relationships and responsibility (2006, 332–333). This obviously poses a significant challenge to the moral orientation of such as socially and ethically disembedded development paradigm as neoliberal market economics. But Robinson believes that greater attention to the role of women as workers and carers may succeed in injecting an ethics of care into the institutions of global economic governance that are presently dominated by gender-neutral neoliberal thinking. T he problematic relationship between neoliberalism and the rights of women workers is also exposed in Hale and Opondo’s research (2005). Their enquiry into the impact of supply chains on women workers in Kenya suggests that the challenge of reconciling women’s equality with the neoliberal development paradigm may well be insurmountable. Taking the Kenyan flower industry as a case study, Hale and O pondo show that numerous codes of conduct govern the production of flowers in Kenya. These codes have generated some limited improvements in the working conditions of the largely female labour force; however, on the whole, these codes have failed to penetrate patriarchal and neoliberal structures which render women workers vulnerable to sexual harassment and discrimination, and dangerous and unhygienic conditions. M oreover, the potential for sustainable change is shown to have been obstructed by the considerable power imbalances in the horticultural supply chain whereby buyers have refused to implement a code of practice to govern their own buying practices. T he absence of statutory regulations from the international market allows buyers at the top of commodity supply chains to exert unreasonable pressure on suppliers, which in turn translates into poor conditions for those at the bottom of the supply chain, namely women workers. It is evident, then, that an improvement in the working conditions of women in the Kenyan flower industry (and elsewhere in the south) has the potential to disrupt the workings of transnational capital organized around buyer-driven supply chains.

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Conclusion C odes of conduct are often presented as offering an opportunity for women’s activism – a space that allows women to push for positive change on a practical level. T here is a general acceptance in the literature that codes may eventually come to play an important role in the setting of labour standards that will benefit women workers. These writings call for codes to be developed in co-operation with women workers themselves (Prieto-Carrón and Bendell 2002). Presently, though, the C LS with their privileging of a small sub-set of rights that are compatible with more market-oriented versions of development is highly problematic. The use of a human rights discourse in areas such as the C LS has lent legitimacy to a neoliberal development paradigm and undermined efforts to address gender inequality in the global economy. A ttention must be drawn therefore to the importance of pursuing women’s equality outside the confines of the market economy. Indeed, by advancing the argument that ‘rights’ extend beyond the public sphere of the ‘formal’ market economy to the ‘private’ sphere of the household and reproduction, R obinson’s ethics of care may provide an alternative way forward on this issue. References A lben, E. (2001) ‘GATT and the fair wage: A n historical perspective on the labourtrade link’, Columbia Law Review, 101:6, 1410–1447. A lston, P. (2004) ‘“C ore labour standards” and the transformation of the international labour rights regime’, European Journal of International Law, 15: 3, 457–521. Blackett, A. (1999) ‘Whither social clauses? Human rights, trade theory and treaty interpretation’, Columbia Human Rights Law Review, 31: 1, 1–80. Brasted, H .V. (2004) ‘W omen, labour standards, and labour organisation’, in A . Kaur (ed.), Women Workers in Industrialising Asia: Costed, Not Valued (Basingstoke: Palgrave MacMillan), 218–240. Carr, M., Chen, M.A., Tate, J. (2000) ‘Globalization and home-based workers’, Feminist Economics, 6: 3, 123–142. C hen, M . (2005) Progress of the World’s Women 2005 (New York: United Nations D evelopment F und for W omen). Elias, J. (2003) ‘International labour standards, codes of conduct and gender issues: A review of recent debates and controversies’, Non-state Actors and International Law, 3: 2-3, 283–301. Elias, J. (2007) ‘Women workers and labour standards: The problem of human rights’, Review of International Studies, 33: 1, 45–57. Elson, D . and Pearson, R . (1981) ‘T he subordination of women and the internationalization of factory production’, in K. Young, C. Wolkowitz and R. M cC ullagh (eds), Of Marriage and the Market (London: CSE Books), 18–40.

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Gelb, J., and Palley, M .L. (1979) ‘W omen and interest group politics: A comparative analysis of federal decision-making’, The Journal of Politics, 41: 2, 362–392. Grown, C., Elson, D., and Çağatay, N. (2003) ‘Introduction’, World Development, 28: 7, 1145–1156. Hale, A., and Opondo, M. (2005) ‘Humanising the cut flower chain: Confronting the realities of flower production for workers in Kenya’, Antipode, 37: 2, 301– 323. ILO & AD B (2006) Core Labor Standards Handbook, Asian Development Bank, Manila. Available online: , accessed November 2007. Jenkins, R., Pearson, R., and Seyfang, G. ����������������������������������������� (2002) ‘Introduction’, in R. Jenkins, R. Pearson and G. S eyfang (eds), ������� Corporate Responsibility and Labour Rights: Codes of Conduct in the Global Economy (London: Earthscan), 1–10. Kabeer, N . (2004) ‘Globalization, labour standards and women’s rights: D ilemmas of collective (in) action in an interdependent world’, Feminist Economics, 10: 1, 3–35. Kaufman, N .H ., and Lindquist, S .A . (1995) ‘C ritiquing gender-neutral treaty language: T he convention on the elimination of all forms of discrimination against women’, in J. Peters and A . W olper (eds), Women’s Rights, Human Rights: International Feminist Perspectives (New York: Routledge), 114– 125. M ertus, J.A . (2005) The United Nations and Human Rights: A Guide for a New Era (London: R outledge). M itter, S . (1986) Common Fate Common Bond: Women in the Global Economy (London: Pluto Press). Pangalangan, C . (2002) ‘S weatshops and international labor standards: Globalizing markets, localizing norms’, in A. Brysk (ed.) Globalization and Human Rights (Berkeley CA: University of California Press), 98–112. Pearson, R. (2007) ‘Beyond women workers: Gendering CSR’, Third World Quarterly, 28: 4, 731–749. Petersmann, E.U . (2004) ‘T he “human rights approach” advocated by the UN H igh C ommissioner for H uman R ights and the International Labour O rganisation: Is it relevant for WTO law and policy?’, Journal of International Economic Law 7: 3, 605–627. Peters, J., and W olper, A . (2001) Women’s Rights, Human Rights: International Feminist Perspective (London: R outledge). Peterson, V.S . (2003) A Critical Rewriting of Global Political Economy (London: R outledge). Peterson, V.S . (2005) ‘H ow (the meaning of) gender matters in political economy’, New Political Economy, 10: 4, 499–521. Prieto-C arrón, M ., and Bendell, J. (2002) If you want to help then start listening to us! From factories and plantations in central America, women speak out about corporate responsibility, O ccasional Paper (Bath: N ew A cademy of Business).

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Prügl, E. (1999) The Global Construction of Gender: Home-Based Work in the Political Economy of the 20th Century (New York: Columbia University Press). Robinson, F. (2006) ‘Beyond labour rights: The ethics of care and women’s work in the global economy’, International Feminist Journal of Politics, 8: 3, 321– 342. S chattschneider, E.E. (1960) The Semisovereign People: A Realist’s View of Democracy in America (New York: Holt, Rinehart and Winston). S haw, L., and H ale, A . (2002) ‘T he emperor’s new clothes: W hat codes mean for workers in the garment industry’, in R. Jenkins, R�������������������������� . Pearson and G. S eyfang� (eds), Corporate Responsibility and Labour Rights: Codes of Conduct in the Global Economy (London: Earthscan), 101–112. Standing, G. (1999) ‘Global feminization through flexible labour: A theme revisited’, World Development, 27: 3, 583–602. T urner, J. (2004) ‘A gender perspective on core labour standards in global export industries and an analysis of implementation in ETI company supply chains’, in Women Working Worldwide (ed.), Core Labour Standards and the Rights of Women Workers in International Supply Chains, S eminar R eport N ovember 2004 (Manchester: Women Working Worldwide). Urminsky, M. (2001) Self regulation in the workplace: Codes of conduct, social labelling and socially responsible investment, Management and Corporate Citizenship, Working Paper No. 1 (Geneva: ILO). U vin, P. (2000) ‘O n high moral ground: T he incorporation of human rights by the development enterprise’, PRAXIS: The Fletcher Journal of Development, xvii, 1–11. Valticos, N . (1998) ‘International labour standards and human rights: A pproaching the year 2000’, International Labour Review, 137: 2, 135–148. W hitworth, S . (1994) Feminism and International Relations (Basingstoke: M acM illan).

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A llocating H ealthcare R esources: T he R ole of Personal R esponsibility A lena M . Buyx

Introduction A ll modern healthcare systems face the problem of rising healthcare costs. A mong the many reasons for this situation, medical progress and demographic changes are considered the most important ones. Innovative developments in medical research continuously open up new and often costly possibilities of diagnostics and treatment, and the demographic changes in modern societies add to an ever increasing demand for interventions of both cure and care. H owever, while health and healthcare are without a doubt very important social goods, they compete for resources with other essential social enterprises, such as education, safety, culture, public infrastructure etc. It is not possible for any modern society to provide limitless resources for everything modern medicine can – or could – do. H ence, fair allocation of resources in healthcare, i.e. fair healthcare prioritizing/rationing, has become a major issue in the academic and public debate as well as in health policy. M ost issues in medical rationing are highly controversial. O ne aspect which has garnered wide acceptance over the last decade despite the general discord is the idea that the best way to allocate resources in healthcare is doing it in a principled and transparent way. In this view – to which the author subscribes – potential criteria should be discussed openly before a final set for prioritizing healthcare interventions is picked. This should be the case irrespective of whether  T he terms ‘prioritizing’ or ‘priority setting’ are used increasingly instead of the grim-sounding ‘rationing’. H owever, even if prioritizing in itself consists of nothing more than bringing interventions in an order of their priority, based on criteria of prioritizing/ allocating, in a situation of scarce resources and capped budgets, there is going to be a cutoff line, and interventions below the cut-off will not be funded. T hus, prioritizing might sound less painful, but if the reality of scarcity in a modern healthcare system is taken into account, it actually does entail rationing, once the priorities which have been developed are implemented.  T here are a few exceptions to this view, such as authors advocating a muddling through approach (e.g. H unter, D . (2002) ‘T he practice of rationing health care in the U nited Kingdom’, in Rationing in Medicine, ��������������������������������������������������� F . Breyer,, H . Kliemt and F . T hiele (eds) (Berlin: S pringer), 39–52).

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countries are searching for the ‘decent minimum’ to be implemented as a publicly funded healthcare package (such as in the United States), or if the contents of the ‘decent maximum’ have to be determined (as is the case in most European countries with universal healthcare). In the following, one of the many criteria for allocating/rationing healthcare resources transparently will be explored, namely personal responsibility for health. T here is little doubt in the medical community about the great impact healthrelated behaviour has on the health of people. Epidemiological studies to this effect are legion, and behavioural risk-factors for many diseases have become standard medical textbook material. Since the impact of personal behaviour has been shown in some of the most prevalent as well as expensive diseases, such as in diabetes mellitus type II or several forms of cardiovascular disease, it goes without saying that personal responsibility for health would be an effective rationing criterion. H owever, when it comes to discussing and evaluating potential fair criteria for rationing in healthcare systems, personal responsibility does not have a lot of good press. Personal responsibility, if used as a reason for making decisions about the healthcare resources patients receive, is often perceived as ‘blaming the victim’ and as contrary to intuitions of justice and compassion in medicine. Policies that employ it as an allocation criterion, such as W est Virginia’s M edicaid plan, several German healthcare laws or the patient charter of the S cottish NHS , have been criticized as placing an unfair and undue burden on vulnerable patient groups.  T his holds for almost any form of implementing personal responsibility for health as a criterion of allocation which is currently being discussed, be it on the macro- or the micro-level of allocation. (Examples are the use of personal responsibility in priority setting programmes or when determining the content of a publicly funded basic healthcare package. Other proposals include referring to personal responsibility when assessing access to certain interventions as well as various malus-regulations (e.g. making people showing a certain behaviour pay higher premiums etc.) and positive incentives (lower premiums).   Wikler, D. (2005) ‘Personal and social responsibility for health’ in S. Anand, F. Peter, and A . S en (eds), Public Health, Ethics, and Equity (O xford: O xford U niversity Press), 109–134; W aller, B.N . (2005) ‘R esponsibility and health’, Cambridge Quarterly of Healthcare Ethics, 14, 177–188; Wilkinson, S. (1999) ‘Smokers’ rights to health care: W hy the ‘restoration argument’ is a moralising wolf in a liberal sheep’s clothing’, Journal of Applied Philosophy, 16, 255–269; D enier, Y.�������������������������������������������� (2005) ������������������������������������������� ‘O n personal responsibility and the human right to healthcare’, Cambridge Quarterly of Healthcare Ethics, 14, 22–234; Banja, J. (2004) ‘O besity, responsibility, and empathy’, Case Manager 15, 43–46.   Minkler, M. (2000), ‘Personal responsibility for health: contexts and controversies’, in D . C allahan (ed.) Promoting Healthy Behaviour (W ashington: Georgetown U niversity Press), 1–22.   Bishop, G., and Brodkey, A.C. (2006) ‘Personal responsibility and physician responsibility: W est Virginia’s M edicaid plan’, New England Journal of Medicine, 355, 756–758; Steinbrook, R. (2006) ‘Imposing personal responsibility for health’, New England Journal of Medicine, 355, 753–756; S chmidt, H . (2007) ‘Patient charters and health responsibility’, British Medical Journal, 335, 1187–1189.

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Indeed, health-relevant behaviour belongs to the private sphere of individuals. Freedom to exercise the right to make independent choices about diet, fitness activities, the consumption of nicotine or alcohol, as well as about professional and recreational activities is important to most people and is generally regarded as a central liberty right. H ence, even an indirect interference into the private sphere, for example by either making people pay higher premiums for insurance or services or by withholding resources or services, is in need of well-argued justification. Much controversy surrounds the question of whether the state or a social institution such as the healthcare system are entitled to interfere with the life of individuals by demanding personal responsibility for health. In the following, arguments both in favour of and against personal responsibility for health from the point of view of political philosophy will be presented. In closing, a way to include personal responsibility as a criterion for allocating healthcare resources will be sketched out as it may be a way to avoid many of the problematic issues discussed below. Personal Responsibility: Three Theories of Justice F rom the point of view of at least three theories of justice, personal responsibility can and should be used as a criterion for allocating scarce healthcare resources. 1. Libertarian authors assume that the great plurality of values in modern societies makes it impossible to reach the kind of consensus on the ends and contents of healthcare which would be necessary in order to justify an obligation on the part of individuals to contribute personal resources towards a public healthcare system. In their view, every individual has the right to decide about how to spend their funds according to their own life plan and any kind of mandatory redistribution towards a societal endeavour such as universal healthcare is immoral. Apart from some kind of minimal public healthcare package – funded by charitable impulses of affluent members of society – allocation has to be achieved via free market mechanisms. C onsequently, personal responsibility, while not explicitly stated as a criterion for distribution, has an important function within a libertarian healthcare system: beyond the minimal, basic care package, all citizens need to execute personal responsibility. W ealthy people may decide how much of their income they are willing to invest into additional healthcare services, while poorer people only have their health-related behaviour as a ‘health resource’.

  Engelhardt, H .T . Jr. (1996) The Foundations of Bioethics, 2nd ed. (New York, O xford: O xford U niversity Press).

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2. Proponents of communitarian theories of justice call for a shift of focus in the healthcare system. A ccording to them, the common good should play a greater role than interests and individuals’ preferences (which, to them, are wont to endanger any public system in the long run). In the face of rising costs produced by the individualistic quest for the best and longest life possible, communitarians propose a radical change of priorities in allocating healthcare resources. T hese should be used primarily to ensure that on the whole, most people in a community can enjoy a reasonably good life of a ‘normal’ length. Resources for expensive high-tech medicine benefiting few people or interventions that merely prolong life beyond a certain age should be cut in favour of preventive, palliative and rehabilitative medicine and interventions that improve the overall quality of life across a population (‘care instead of cure’). T he primacy of the health of a community and of the common good justifies that the state or community require individuals to contribute to this common good by showing responsible health behaviours. It also legitimizes a public system that exerts pressure and withholds resources in cases where individuals do not comply. 3. Finally, there are the so-called luck-egalitarians – liberal writers committed to equality, who hold that inequalities warranting compensation are those resulting from factors which individuals have no choice about (so-called ‘brute luck’ such as genetic makeup, environmental circumstances and the like). As for inequalities resulting from freely chosen behaviour such as lifestyle choices or risky behaviour (so-called ‘option luck’), these do not warrant compensation and individuals should have to buy private insurance against possible resulting negative consequences. In this theory, personal responsibility is one of the most important criteria for allocation in medicine. A public healthcare system need only compensate for treatment of conditions which do not result from chosen behaviour. T hese accounts have been the subject of much controversy in recent years, especially in terms of their general concepts and justifications. Fewer comments have been made on the respective role of personal responsibility within the  C allahan, D . (1998) False Hopes (New York: Simon & Schuster) Callahan does not call himself a communitarian. H owever, his critique of liberal tenets is quite similar to (or inspired by) the critique developed by authors in the wake of John Rawls’s A Theory of Justice. T hese authors (including C harles T aylor, M ichael W alzer, A lasdair M acIntyre and others) are generally regarded as communitarians.  C ohen, G. (1989) ‘O n the currency of egalitarian justice’, Ethics, 99, 906–944; A rneson, R .J. (1997) ‘Equality and equal opportunity for welfare’, in, L.P. Pojman and R . W estmoreland (eds), Equality: Selected Readings (New York, Oxford: Oxford University Press), 229–241; Dworkin. R. (2000) Sovereign Virtue. The Theory and Practice of Equality (C ambridge: H arvard U niversity Press); C appelen A .W . and N orheim, O .F . (2005) ‘R esponsibility in health care: a liberal egalitarian approach’, Journal of Medical Ethics, 31, 476–480.

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theories.10 The most important problems in this respect will be sketched out and then an alternative account proposed in brief. 1. A libertarian healthcare market system results in a situation in which large portions of the population are left without or with minimal public support in case of ���������������������������������������������������������������� illness. At least from the European perspective, which takes universal, publicly funded healthcare as a very desirable social institution, the extreme emphasis on ownership rights and freedom of disposal and the resulting complete opposition to making citizens pay some portion of their income into public healthcare is difficult to support. Even taking into account charitable impulses (often cited by libertarians as a means to finance a minimal or basic care package11), no public healthcare system as we know it would exist in a libertarian society. Thus, the theory is not directly relevant in a discussion of universal public healthcare. 2. T he opposite argument can be voiced against communitarian healthcare systems: in their proposals for resource allocation, they give too little weight to the individual and too much to the community. T he focus on the common good leaves too few opportunities for some individuals to make justified claims on public healthcare resources. A communitarian system – while ensuring that, on the whole, the health of the community is reasonably good – would produce many groups of losers: those with rare diseases and those whose treatment is expensive or high-tech and who, therefore, place heavy demands on many commonly shared resources. 3. Within the theory of luck egalitarianism, free choice (of action and of behaviour) is the only criterion to demarcate which conditions warrant compensation and thus public healthcare resources. T he theory is onesided in this respect. It ignores other important criteria of allocation and leads to many unfair consequences. T here are, for example, cases in which a certain behaviour is both free and socially very well-accepted or even desired, but might lead to ‘self-inflicted’ medical conditions – as in the personal decision to become pregnant or to care for a family member with dementia.12 Even more fundamentally, the concept of free choice not only has far too much significance in the theory, it also lacks differentiation. The focus on free choice ignores the fact that behaviour does not fall into one of two dichotomous categories ‘freely chosen’ and ‘not chosen at all’, but that there are many degrees of freedom of choice. Even without fully entering into the age-old discussion about freedom of will, it has to be pointed out that especially health behaviour and lifestyle choices are determined by many factors (see below). T he failure to differentiate between these different 10  Wikler 2005, Wilkinson 1999, Anderson, E. 1999, ‘What is the point of equality?’ Ethics, 109, 287–337. 11  Engelhardt 1996. 12 A nderson 1999.

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factors and the assumption that every conscious choice of behaviour people make is free render the theory inapplicable in the healthcare context. Solidarity: An Alternative Between the rather ‘radical’ accounts of libertarianism and communitarianism some middle ground is needed which at the same time does not lead to the problems luck egalitarianism faces. The author believes such a middle-ground account that balances the needs and preferences of individuals with the necessity to protect a few important societal institutions can be found in liberal egalitarianism – but only if it is supplemented by a strong dose of the principle of solidarity. Liberal egalitarians13 underscore the importance of equal civil rights and liberties as well as that of a high degree of individual freedom within modern pluralistic societies to pursue individual life plans. T hey are also committed to equality of opportunity, which substantiates compensative action (if needed to fulfil a reasonable life plan). Personal responsibility plays almost no role in liberal egalitarian theory. A ‘pure’ liberal egalitarian system always faces the problem of becoming a ‘bottomless pit’. In order to set limits to healthcare provision and to ration fairly, the principle of solidarity, and with it the notion of personal responsibility, could be used as an allocation criterion.14 S olidarity encompasses a sense of togetherness between the members of a specific society or community, reflecting the multiple interdependencies which pertain between people. S olidarity should not be confused with the idea of charity or welfare, meaning that only one special group – for example the poor or the very needy – gets to be supported. R ather, people in a solidarity-based system care for each other. In large, complex modern societies, the relevant kind of caring does not imply personal closeness, but rather expresses the abstract idea of being part of a system deemed precious and important and of supporting it. S olidarity thus is not a one-sided principle, but a dual principle which entails elements of reciprocity:15 of receiving, but also of giving and contributing. Its Latin root in solidum even involves an obligation of each individual to the whole. T his does not have to mean that people have to give something to the community or do something for a public institution in order to have a claim to 13  Wikler 2005; Buchanan, A.E., Brock, D.W., Daniels, N. and D. Wikler 2000, From Chance to Choice. Genetics and Justice (C ambridge: C ambridge U niversity Press); D aniels, N . (2007) Just Health. Meeting Health Needs Fairly (C ambridge: C ambridge U niversity Press); R awls, J. (1971) A Theory of Justice (C ambridge MA : H arvard U niversity Press). 14  Buyx, A . (2005) ‘Personal responsibility as a criterion for allocation in health care. T heoretical considerations and practical consequences’, Ethik in der Medizin, 17, 269– 283. 15  Hoedemaekers, R., Gordijn, B., Pijnenburg, M. (2007) ‘Solidarity and justice as guiding principles in genomic research’, Bioethics, 21, 342–350.

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support and to shared resources, or that they are left alone if they do not ‘earn’ their claims in this way. T he aspect of caring for each other within a solidaristic system ensures at least basic help and support for everyone within the system.16 H owever, because of the commitment towards the shared public institution, which solidarity also demands, people should not only be passive recipients of services but actively contribute to and try to avoid harming the system. T his means that they should act responsibly when it comes to their health and that it is justified to expect this. S olidarity is a value that presupposes at least a certain level of agreement about the good life, a notoriously contested issue. As such, and at first glance, it seems to run counter to the liberal idea of neutrality towards the many and varied individual concepts of the good life to which people ascribe. H owever, solidarity is open to definitions and interpretations that go beyond understanding it as a ‘thick’ substantive moral perspective that presupposes a dominant theory of a shared common good.17 A ‘thinner’ interpretation of solidarity would involve accepting its central notion of reciprocity as being derived from the mutual care that members of a society owe one another. This would provide a general justification to have some expectations towards people behaving responsibly within a solidarity-based system. O n these grounds, personal responsibility could be expected and, in turn, used as one guiding principle among others for prioritizing. Just as with many other principles of fair distribution (e.g. cost-effectiveness, efficacy, need), much discussion and careful weighing of problems and arguments would have to follow in order to implement it fairly. Personal Responsibility for Health: Practical Problems Even if on the theoretical level a general demand for personal responsibility for health can be justified by invoking solidarity, there are indeed oft-cited important practical problems linked to its use as a criterion of priority setting and/or rationing.18 16  Segall, S. (2007) ‘In solidarity with the imprudent: A defense of luck-egalitarianism’, Social Theory and Practice, 33, 177–198. 17  H outepen, R ., and ter M eulen, R .T . (2000) ‘T he expectation(s) of solidarity: matters of justice, responsibility and identity in the reconstruction of the health care system’, Health Care Analysis, 8, 355–376; S ass, H .M . (1992) ‘Introduction: the principle of solidarity in health care policy’, Journal of Medicine and Philosophy, 17, 367–370; Bergmark, A. (2000) ‘S olidarity in S wedish welfare – standing the test of time?’, Health Care Analysis, 8, 395–411. 18  Wikler 2005; Denier 2005; Minkler 2000; Buyx 2005; Veatch, R.M. 1980, ‘Voluntary risks to health. The ethical issues’, Journal of the American Medical Association, 243, 50– 55; Minkler, M. (1999) ‘Personal responsibility for health? A review of the arguments and the evidence at century’s end’, Health Education & Behavior, 26, 121–141; Bagaric, M . and Erbacher, S . (2005) ������������������������������������������������������ ‘Fat and the law: who should take the blame?’, Journal of Law and Medicine, 12, 323–39; Y oder, S .D . (2002) ‘Individual responsibility for health. D ecision,

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F irst of all, there is the problem of causal responsibility. W e want to be sure that we know exactly what actions or behaviours lead to a certain condition before holding patients responsible for the consequences. W hile this is easy in many cases, the causes of several of the conditions most often cited as being preventable through healthy behaviour (diabetes, high blood pressure, some cancers, and all immensely costly to treat) are multi-factorial. T he studies on the importance of behaviour for these illnesses mentioned in the introduction are accompanied by studies pointing to other, non-behavioural factors. T here is no doubt that important causal factors of these illnesses are related to individual health behaviour or lifestyle, but there are other causal aspects – environmental, societal or genetic. The controversy in the research community around the respective significance of different causal factors for many diseases is still ongoing. It is also difficult to single out the one decisive causal factor when it comes to individual patients. M ost of the time, a combination of causes contributes to an individual condition. H ence, making sure patients really are causally responsible is a great challenge if personal responsibility is to be justly invoked. A nother important problem has already been mentioned in passing: the freedom of health behaviour. People are justly held responsible for consequences of their behaviour only if they had control over it and chose it freely. W hile most health-related behaviours are not uncontrollable impulses but instead are subject to conscious choice, these choices are in turn often influenced by multiple factors: socio-economic status, socialization and education, family influence, social and peer values, advertisement, addictions etc.19 M oreover, many unhealthy behaviours are socially accepted or regarded as desirable.20 T here is also good evidence that modern societies create a ‘toxic environment’21 which is conducive to the consumption of unhealthy food, nicotine, alcohol, and so on. In order to introduce personal responsibility in a just way, the degree of determination influencing freedom of choice when it comes to health behaviours is important to identify, and as many steps as possible should be taken to counter these influences. not discovery’, Hastings Center Report, 32, 22–31, H arris, J. (1995) ‘C ould we hold people responsible for their own adverse health?’, Journal of Contemporary Health Law and Policy, 12, 147–153. T he practical problems of implementing personal responsibility for health have garnered far more attention than the theoretical grounds on which to include it as an allocation criterion in modern healthcare systems. 19  Waller 2005; Minkler 2000; Daniels 2007; Minkler 1999; Betancourt, J.R., Quinlan, J. (2007) ‘Personal responsibility versus responsible options; H ealth care, community health promotion, and the battle against chronic disease’, Preventing Chronic Disease, 4, 1–3; Kelley, M . (2005) ‘Limits on patient responsibility’, Journal of Medicine and Philosophy, 30, 189–206; Resnik, D.B. (2007) ‘Responsibility for health: Personal, social, and environmental’, Journal of Medical Ethics, 33, 444–445. 20  Think of socially accepted drinking in company, or sitting at the desk and working long hours to finish projects/papers and ruining your back, etc. etc. 21 S chwartz, M .B. and Brownell, K.D . (2007) ‘A ctions necessary to prevent childhood obesity: creating the climate for change’, Journal of Law, Medicine and Ethics, 35, 78–89.

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Conclusions: Is There A Third Way? W hile the problems mentioned above are important, they do not justify the common knee-jerk refusal to think more deeply about using responsibility for health as a criterion for rationing. In liberal healthcare systems based to some degree on solidarity (such as most European systems), personal responsibility can be legitimately demanded. H owever, the problems surveyed in this chapter must be taken into account when it comes to practical implementation. Instead of either abandoning personal responsibility altogether22 or ignoring the difficulties resulting from these problems and introducing it in a piecemeal way (as has been done for example in German health policy23), a third possibility should be considered. This would consist of systematically singling out specific behaviours and conditions which pose as little difficulty as possible in terms of causality and freedom of choice. M edical conditions would have to be reviewed with a view to assessing the evidence for a causal relationship between behaviour and illness/ symptoms.24 T hose behaviours which have clearly been shown to have detrimental health consequences would have to be identified. With a view to the burgeoning literature on behavioural impact on health it is not an unreasonable expectation that there will be many conditions and behaviours with strong causal relations. In addition, such behaviours would have to be examined vis-à-vis whether they are strongly or weakly influenced by addictive factors, socialization etc. and whether people can routinely be described as determined or as mostly free in their choice of a behaviour. Including new results from neuroscience about degrees of addictiveness of certain behaviours could be helpful in this respect,25 as well as paying attention to the personal difficulty a change of behaviour would entail. By conducting the evaluation in a systematic way it will very likely emerge that some behaviours more than others satisfy the criteria of (1) being clearly bad for health, as well as of (2) being chosen freely and amenable to change – an obvious candidate would be a sedentary lifestyle. S uch, then, would be the cases of behaviour where there are no good reasons not to take them into account when allocating healthcare resources. Hence, they could justifiably become the subject of priority setting. F inally, if personal responsibility were to be used as a criterion for allocation on these grounds, other conditions or side constraints would have to be met. F irst 22  Wikler 2005; Denier 2005; Veatch 1980; Harris 1995. 23 S chmidt, H . (2007) ‘Personal responsibility for health – D evelopments under the German H ealthcare R eform 2007’, European Journal of Health Law, 14, 1–9. 24 T his would require a systematic review of the massive amount of epidemiological and other data on causal factors for illnesses with a specific view to the behavioral component – a huge task, but one which is in accord with the trend of evidence based medicine and would generate knowledge of great interest far beyond priority setting. 25 H yman, S .E. (2007) ‘T he neurobiology of addiction: implications for voluntary control of behavior’, American Journal of Bioethics, 7, 8–11.

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and most importantly, it needs to be stressed that personal responsibility for health should be one criterion among others. It is not proposed that there should be an ‘all-or-nothing-allocation’ based solely on individual behaviour. Instead, personal responsibility would better serve as one criterion in a matrix or algorithm for priority setting (for example, the S wedish model, which includes several criteria,26 none of which is personal responsibility) or, for example, in the decision-making process about which interventions should go into a basic care package. Second, using personal responsibility in this way also presupposes that decisions about resource distribution are made on the macro level. In this way the delicate situation where physicians have to judge the behaviour of their individual patients is avoided.27 A dditionally, efforts would have to be made to change the ‘toxic environment’, and, furthermore, measures would have to be taken to ensure that people are adequately informed about healthy behaviour. Personal responsibility requires knowledge, and the health literacy of large parts of the population remains insufficient. Continuing and increasing efforts to educate people on what they can do to protect and improve their health are necessary. A dditionally, in order to minimize the toxic environment, changes in regulations about addictive substances, advertisements, the selling and offering of certain foods and the like, should be further discussed. In this chapter, personal responsibility on a theoretical level has been defended and a way to avoid some of the practical problems connected to implementation proposed. T his route may appear to be very complex, but then again using criteria for allocating scarce resources in a principled way always is. A lot remains to be done, but it is believed to be worth it in order to use personal responsibility alongside other criteria for allocating scarce resources. N ot the least reason for this is the very positive effect that personal responsibility has in practice: it leads to better health. Acknowledgments The author is grateful to Georg Marckmann for discussions about personal responsibility and to Bruce M axwell for helpful comments on earlier versions of this manuscript.

26 T he S wedish N ational Board for H ealth and W elfare. 2004, Priority Setting for Cardiac Care in Sweden, Socialstyrelsen, Stockholm. 27 ������������ H arris 1995.

C hapter 27

T he R esponsibilities of H ealthcare Professionals in C risis S ituations M ichael Igoumenidis

When we think about a ‘crisis’ we usually picture a big problem leading to a state of emergency, impending disasters which have to be avoided somehow, and people not knowing what to do, resorting to panic. World Health Organization officers (2007, 7) make a cooler appraisal of the situation and present us with the following definition: [C risis] Is an event or series of events which represents a critical threat to the health, safety, security or wellbeing of a community or other large group of people, usually over a wide area. Armed conflicts, epidemics, famine, natural disasters, environmental emergencies and other major harmful events may involve or lead to a humanitarian crisis.

It is expected that, in a crisis situation, the state should protect the public, by mobilizing specialized staff to deal with any danger as effectively as possible. Depending on the situation, the state-organized operations may involve firemen, policemen, military agents, and a variety of experts. H owever, it is always imperative that healthcare professionals also offer their services, in any kind of crisis. T heir role is not exhausted in treating the wounded, but, above all, they have to protect public health by preventing any infectious diseases from spreading. F or example, when the Asian tsunami struck on 26 December 2004, health authorities were braced for an onslaught of waterborne illnesses including malaria and cholera, which often follow such disasters (Potera 2005). But what happens when an infectious disease is not a mere consequence of the crisis, but the actual crisis itself? T his obviously maximizes the health professionals’ responsibility and it also creates much controversy as to its limits. In what follows, this issue is examined in what is hoped a satisfactory way. F irst, the frequency of public health crises all over the world will be discussed, as well as the probability of a global crisis related to infectious diseases; this evidence indicates that we need to speculate on, and be prepared for, the impact of these events on every sector. Second, a considerable number of difficulties which healthcare professionals have to deal with on such an occasion will be presented. F inally, their legal and, more importantly, their ethical responsibilities will be explored, despite the above mentioned difficulties. As it shall be shown, the greatest challenge is to keep their

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professional duty to the public in balance with their personal interest, and never reject one in favour of the other. Why is it that Public Health Crisis Situations are Inevitable? A ccording to M atthew W ynia, director of the Institute of Ethics of the A merican M edical A ssociation, prior to the emergence of HI V and AIDS in the late 1980s, many in the healthcare community assumed that large outbreaks of infectious disease were no longer a problem for the developed world (A non. 2004, 49). However, it became clear that this view was unjustifiably optimistic. To be sure, infectious diseases in developing countries are very common due to bad nutrition, dirty water, crowded living conditions, poor education, lack of access to basic medicines and many other factors (S elgelid 2005, 278; F erguson 2006); but the event of similar crises in the developed world cannot be underestimated. T he SARS-related incidents and the emergence of the bird flu virus are only the latest worrying signs in the rapidly changing public health domain. In addition, some experts claim that pandemics occur three or four times each century (W ingard 2007, 107); therefore, they fear that, in the next few years, humanity will suffer from the outbreak of a global disease, similar to the 1918 (Spanish) influenza, which killed 8–10 per cent (upper estimate) of all young adults worldwide (Verweij 2005, 325) – even though they believe that the impact of a new influenza pandemic would be much smaller (Vynnycky et al. 2007; N guyen-Van-T am and H ampson 2003). So why is it that, despite their scientific progress, healthcare professionals are not able to control the spread of infectious diseases throughout the developed world, let alone developing countries? A number of factors contribute to the persistence of this problem. F irst, there is the increasing antibiotic resistance encountered among bacteria, which is by and large a consequence of the antibiotic abuse taking place mostly in W estern countries (WHO 2007, 23). S cientists search for ways to eliminate this phenomenon (W u et al. 2007) but they have not reached any satisfactory conclusions yet. F or example, tuberculosis was once thought to be extinct in the developed world, and its prevalence in third-world countries was attributed to lack of antibiotics; however, it is now acknowledged that tuberculosis is still a universal problem, and its bacterium’s resistance to drugs is a serious threat to public health in all countries (Blöndal 2007). S econd, there is the increased speed and extent of travel globally. It is recognized that transportation among regions is one of the main factors that affect the outbreak of diseases (Cui et al. 2006) and in modern day this can take place very easily. D iseases can travel all around the world in hours, either by infected individuals, or by infected products. T ravel restrictions are often suggested as an efficient way to reduce the spread of a contagious disease that threatens public health (C amitz and Liljeros 2006), but these restrictions can never be absolutely efficient.

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T hird, even though authorities all over the world have made plans to avoid the spread of a disease, the methods of control are often too demanding; therefore, it is entirely predictable that patients and healthcare workers will systematically subvert the plans (Booker 1996, 93). For example, in Victoria, Australia, it was suggested that, in the event of bird flu epidemic patients would not go to the GP but to a ‘flu centre’. As Lawson (2007) says in a recent article published in The Sunday Times, ‘the idea that patients would go to where flu is concentrated displays an astounding lack of comprehension of human nature’. Humans do not simply do as they are told, but they make decisions on their own initiative, especially if they feel that there is danger. A nd in the extreme case that there is an order for an area to be quarantined, will there not be some people who will try to escape, possibly carrying the disease out with them? ‘It’s hard to predict whether people will do as they are supposed to during a crisis’ (W ynia 2007). F ourth, medicine these days is much more complex than it was in previously; now we have to deal with all kinds of moral considerations and there is a conflict between the priorities of public health and the emphasis of medical ethics on the duty of the doctor to the individual patient (Lachmann 1998, 297). F or example, the increasing antibiotic resistance in bacteria is associated with antibiotic abuse, which is promoted by the right of a doctor to prescribe any drug that he thinks to be in the best interests of an individual patient (Lachmann 1998, 298). But there are a lot of other ethical issues to be considered. Mandatory vaccination conflicts with patients’ autonomy; measures such as quarantine or isolation are beyond question if satisfactory evidence does not exist; and the duty of confidentiality is another very delicate issue, which could allow disease carriers to remain unidentified and pose a continuous threat to society. A ll these issues need to be properly discussed, and, in the meantime, considerable damage may occur. M odern medicine is very much concerned about the individual patient and his autonomy, and this attitude, coupled with the fact that infectious disease has become much less feared in industrialized countries (Lachmann, 298) does not favour the promotion of public health at all. For example, back in the 1980s, it was advocated that isolation of persons with AIDS was the only truly effective public health measure available to control the disease (Gostin and Curran 1986, 26); of course this did not take place, and 25 years later AIDS is still a major problem. T o summarize, crises related to infectious diseases are inevitable, and a major crisis, such as a pandemic, is also a strong possibility. T herefore, it is certainly useful for healthcare professionals to consider what their responsibilities should be in infectious disease-related crisis situations, as it is very probable that they will face these responsibilities in practice. Difficulties for Healthcare Professionals in Crisis Situations Before proceeding, we need to understand that being a healthcare professional at a time of crisis is painful and hard. F irst of all, it is easy to ascertain that the

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threat of infection is much higher among healthcare professionals than it is among laypersons. Those who work closer to the disease are more vulnerable to it. For example, during the SARS incident, and according to WHO, approximately 30% of reported cases were among healthcare workers, some of whom died from the infection (R uderman et al. 2006). Even if it is guaranteed that every healthcare worker shall be supplied with masks and gloves – which cannot be known for sure, as their adequacy depends on the extent of the outbreak – it is a mistake to think that dangers are eliminated. Masks, gloves and uniforms certainly reduce the threat of infection, but the risk remains at a very high level for professionals who constantly interact with infected people. ��������������������������������� F or instance, a doctor in T aiwan died from giving airway intubations to a terminal, old SARS patient even with the protection of masks and gloves (Hsin and Macer 2004, 212). A��������������� lso, securing and prioritizing appropriate vaccination for every healthcare worker is an obvious response at a time of crisis, but what happens if we have to deal with an unknown or mutant virus? A new vaccine will have to be developed quickly, probably bypassing the normal lengthy procedure; it will be only briefly tested, and healthcare workers will be the first population group expected to accept it (Kotalik 2005, 429). T his certainly entails dangers because, in a sense, healthcare professionals will be used for safety testing of the new vaccines. In addition, depending on the gravity of the crisis and its impact on fellow workers, it is to be expected that every healthcare professional shall have to work overtime and be involved in some amazingly tiring shifts. T he inevitable fatigue will definitely harm the professional’s health status because, apart from feeling exhausted, one will also be off one’s guard, and, consequently, prone to mistakes (Gold et al. 1992) which can result in infection. O ne moment of absent-mindness is more than enough for the infection to find its way through. Furthermore, healthcare professionals will have to be prepared to move where their services are most needed, including temporary facilities (Kotalik 2005, 429). Perhaps this is not an important issue, but it is conceivable that being away from home at a time of crisis increases anxiety. It is almost certain that an emotional burden will also be placed on healthcare professionals. ‘O ne grows out of pity when it’s useless,’ says D r R ieux in C amus’s Plague, having watched hundreds of people dying in a quarantined city (C amus 1960, 76). But Dr Rieux is a fictional character and we cannot expect real people to share his views so easily. Professionals will have to confront a large number of people getting infected or dying despite their efforts, larger by far than what they are used to. T heir perception of health, their priorities, the concept of their profession, and their thoughts about the value of human life will probably change drastically at a time of crisis. N ormally this will have great emotional impact on them. Besides, they might have to allocate resources, which is another emotionally burdensome duty. In the case of bird flu pandemic for example,��������������������� it is believed that its impact would quickly overwhelm the public health and healthcare delivery systems throughout the world (Levin et al. 2007). F or example, t��������������� here shall not be enough capacity in the intensive care units for all the patients (A non. 2004);

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therefore, some will have to be denied potentially life-saving treatment. ‘A llocation of such resources will have to be either on a first come first served basis or on an explicitly utilitarian basis of capacity to benefit. This shift from an egalitarian free access to a limited one based on expected outcome represents a profound shift in how we deliver health care’ (Lawson 2007). W ill healthcare professionals ever be ready to take such decisions and remain emotionally untouched? O f course, when it comes to allocation of resources, emotional distress is not the only problem for healthcare workers; Lawson (2007) quotes a doctor saying that ‘the most useful thing staff could be given in such an event is a gun’. Indeed, if there is a decision not to ventilate someone, his or her relatives might not be too happy; threats to staff are all too common and many are worried about personal security. Even though it sounds far-fetched, the possibility of an angry mob is an extra difficulty for healthcare professionals during a public health crisis. And finally, let us not forget the legal position of staff who refuse treatment: the patients who were not treated and their relatives will be ready to take out legal actions against anyone they think is to blame (Lawson 2007). Clearly, in an infectious disease-related crisis situation, healthcare professionals will have many issues to worry about, apart from the infectious disease itself. The Responsibilities of Healthcare Professionals in the Face of Danger But despite all the above mentioned considerations, even though their importance is evident, what we really need to focus on is the first difficulty we mentioned, that is, the risk they undertake. Emotional distress, exhaustion, and the possibility of public outrage and legal actions are minor inconveniences compared to the increased risk of infection. As it shall be shown, this factor has potentially the greatest impact on healthcare professionals’ attitude towards their responsibilities. Historical accounts of healthcare workers’ conduct in times of epidemic reveal a spectrum of altruism, heroism, fear and retreat (Olick 2004, 366). To be sure, the concept of professional responsibility has changed since 166 AD, when Galen fled from Rome when plague struck (Imperato 1989, 192); however, the limits of this responsibility are not clear at all. In a crisis situation, there are fears that healthcare workers will not show up for work, for fear of infection. ������������������������������������������������� It is understandable that even a virtuous doctor or nurse might not be willing to die for a patient.����������������������������� A recent survey (Ehrenstein et al. 2006) shows that 28% of hospital employees would find it professionally acceptable to abandon their workplace during a pandemic in order to protect themselves and their families, while a very modest majority (52%) disagreed with this statement. In addition, a survey of paramedics (Mackler et al. 2007) shows that ��������������������������������������������������������������������������� if protective gear were available but a vaccine were unavailable, only 39% of paramedics would remain on duty; and although 91% of them would remain on duty if they were fully protected, this number falls to 38% if the participant believed that his or her immediate family was not protected. C ertainly, ������� nobody

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knows whether these respondents shall remain firm to their decision in a reallife situation; besides, the risk which healthcare professionals will be exposed to cannot be clearly estimated or quantified (Treanor 2000, 253), so the respondents do not really express a view based on informed consent. But in any case, these findings suggest that healthcare professionals recognize a dual responsibility: a professionally established duty to the public, but, on the other hand, a personal duty to their families and themselves. H ealthcare professions are not unique in that their occupants face dangers. There can be far more dangerous jobs, like putting out fires, or chasing criminals. But when it comes to infectious diseases, the big difference is that healthcare professionals carry the danger with them. T�������������������������������������� he other members of society will know about the increased risk which the professional poses and, understandably, they will not have the desire to socialize with them very much. Besides, according to H arris and H olm (1995), the infected individual should either isolate themselves or seek the specific consent of those with whom they come into contact; but the second option, though correct from a purely philosophical point of view, lacks practical content. It brings to mind images from M edieval Europe, when lepers used a warning clapper to let people know that they were approaching, and so everyone could run away (Richards, 1977). In fact, to seek consent is another means of isolation. It is better to isolate oneself in a more modest way. But where could this isolation take place? Who will want to return home and potentially infect their own family, even though they are not sure whether they carry the disease with them or not? Because, at least to some extent, the same obligations to avoid contact might apply for persons who do not (yet) experience symptoms, yet know they have contacted infected persons and might have been infected themselves (�������������������������������������������������������������������������������� Verweij 2005, 325). For example, reported negative effects of the SARS outbreak by healthcare professionals (who were not infected) included financial losses, being treated differently by people because of working in a hospital and changes to personal and familial lifestyle. F requently mentioned lifestyle changes included avoiding public spaces (e.g., restaurants and shopping centres) and avoiding interaction with family or friends (Nickell et al. 2004, 796). T hose with very common syndromes of cold (cough, fever, etc.) were psychologically and socially isolated by their friends and relatives. F rom the narratives reported by media, the mass panic caused by SARS has changed the relationships between people (H sin and M acer 2004, 213). Can we reasonably demand from healthcare professionals to go to work in a time of crisis, be voluntarily or involuntarily isolated from their friends and relatives, and, on top of that, undertake the risk of being truly infected? S ome would suggest that medicine is a profession which necessarily entails dangers, but also that these are compensated for in advance. Clark (2006, 165) says that physicians enjoy many privileges in society; hence a reasonable physician is well situated to appreciate that the social obligations that attach to the doctor’s role are justly derived. ��������������������������������������������������������� M edical professionals have been well-rewarded by society not only because they are competent in operating medicine, but also because they chose the work of being a ‘life saver’ (Hsin and Macer 2004, 211). Therefore,

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according to M cC ullough (2006, 176–177), should physicians in enough numbers shirk their moral responsibilities in an epidemic, they will forfeit societal trust and abandon their social status as a profession: ‘the result will be to destroy the profession of medicine, voluntarily and from within’. T hese views are certainly interesting, but the problem is that they focus on the profession of medicine. O ther healthcare professionals, such as healthcare assistants, face the same dangers without enjoying physicians’ social status and privileges. T his means that, if we need to justify the prevalence of professional duty over every other moral consideration in the face of danger, we have to do so in a different way. T he law is not particularly helpful either. Generally, law does not demand heroism (Olick 2004, 367), and it would be totally groundless for the state to bring legal actions against professionals who refrain from heroism. O n the other hand, if we assume that there is nothing heroic in undertaking the risk of being infected, and that it merely constitutes a professional obligation, then healthcare professionals can easily strike back and claim for damages under the Unfair Contract Terms Act 1977 (T reanor 2000, 254); but this is probably irrelevant. In the author’s view, it is better not to use a legal point of view when it comes to crisis situations, and legal enforcement is not the preferred method of promoting courageous action (W ynia 2007, 3). A ll in all, the law does not function well in a crisis. N evertheless, there can be disciplinary measures instead of legal ones, based on the ‘soft law’ of professionally formulated codes of ethics. F or example, in T aiwan there was the suggestion to punish those who were afraid of treating SARS patients by retracting their professional licence (H sin and M acer 2004, 211). But the enforcement of these measures is also very difficult to achieve, because codes of ethics are in general silent on the duty to care during pandemics (R uderman et al. 2006). T���������������������� here is of course the Declaration of Professional Responsibility in the AMA Code of Medical Ethics (2002, 145), which clearly mentions that physicians will apply their knowledge and skills when needed, though doing so may put them at risk. But this statement is too vague; that risk has to be reasonably defined and be adapted to reasonable professionals (Clark 2006; Wynia 2007, 2). Besides, the nature of the risk changes if we think about an infectious disease which can endanger the professionals’ loved ones.�������������������������������������������� O bligations to their families cannot be so readily swept aside, and there is no reason in ethics generally to think that one’s professional role should be regarded as more morally significant than one’s family roles (M cC ullough 2006, 182). H ow can we overcome all these dilemmas and reach a conclusion as to the responsibilities of healthcare professionals in crisis situations? Conclusion A ll the above mentioned issues should be properly addressed and discussed at length, before we can arrive at the desirable ethic which Olick (2004, 367) describes:

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Today’s public health threats, like past epidemics, call for a coherent professional ethic setting forth the parameters of a duty to treat. S uch an ethic should offer useful guidance as to how much risk physicians, public health, and other health care workers should be expected to accept, and on when heeding the call to the front lines should be understood as heroic sacrifice, moral duty, or legal obligation.

If this ethic is ever acknowledged, then perhaps the responsibilities of healthcare professionals in crisis situations shall be clearly defined. In the meantime, those medical practitioners who stick to their post should be respected; on the other hand, those who retreat would also be acting within their human rights and what is expected of a reasonable citizen (H sin and M acer 2004, 212). However, the author would like to conclude by offering a more personal opinion. ��������������������������������������������������������������������� Even though it may be a long time before there is a clear picture of healthcare professionals’ responsibilities, it is very important to consider all the above mentioned difficulties that they will face. By doing so we can have some indications as to what standard of care is expected of healthcare professionals in the event of a crisis (R uderman et al. 2006). T here is the possibility, at least in W estern countries, that the public is somewhat ‘spoiled’ and they shall be expecting much more than what can actually be given. T hey have to be informed that the situation will not be ideal and to think about the great burden which shall be placed on the healthcare professionals’ shoulders. T his is the only way to lower the public’s demands and not cause further problems to the staff. W hat healthcare professionals need in the event of a pandemic is not a gun, as Lawson’s doctor said, but understanding. We have to bear in mind how difficult the situation will be for them. A nd, by being prepared for the worst, perhaps we can handle more effectively the impact of the crisis. References A merican M edical A ssociation (2002) Code of Medical Ethics: Current Opinions (C hicago: AMA Press). Anon. (2004) ‘������������������������������������������������������������� Ethics during epidemics: Old lessons get new look: Balancing personal protection with professional duty’, Medical Ethics Advisor, 20: 5, 49–51. Blöndal, K. (2007) ‘Barriers to reaching the targets for tuberculosis control: M ultidrug-resistant tuberculosis’, Bulletin of the World Health Organization, 85, 387–394. Booker, M. (1996) ‘Compliance, coercion, and compassion: Moral dimensions of the return of tuberculosis’, Journal of Medical Humanities, 17: 2, 91–102. C amitz, M . and Liljeros, F . (2006) ‘T he effect of travel restrictions on the spread of a moderately contagious disease’, BMC Medicine, 4, 32, viewed 20 N ovember 2007, .

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C amus, A . (1960) The Plague (translated by S tuart Gilbert) (H armondsworth: Penguin Books). Clark, C.C. (2006) ‘Doctors, duties, and dangers: The reasonable physician and contagious populations’, Advances in Bioethics, 9, 163–174. Cui, J., Takeuchi, Y., and Saito, Y. (2006) ‘Spreading disease with transport-related infection’, Journal of Theoretical Biology, 239, 376–390. Ehrenstein, B.P., H anses, F ., and S alzberger, B. ������������������������������� (2006) ‘Influenza pandemic and professional duty: Family or patients first? A survey of hospital employees’, BMC Public Health, 6, 311, viewed 21 N ovember 2007, . Ferguson, N. (2006) ‘Poverty, death, and a future influenza pandemic’, The Lancet, 368, 2187–2188. Gold, D.R., Rogacz, S., Bock, N., Tosteson, T.D., Baum, T.M., Speizer, F.E., and Czeisler, C.A. (1992) ‘Rotating shift work, sleep, and accidents related to sleepiness in hospital nurses’, American Journal of Public Health, 82: 7, 1011–1014. Gostin, L., and C urran, W . (1986) ‘T he limits of compulsion in controlling AIDS ’, Hastings Center Report, 16: 6, 24–29. H arris, J. and H ølm, S . (1995) ‘Is there a moral obligation not to infect others?’, BMJ, 311, 1215–1217. H sin, D . and M acer, D .R .J. (2004) ‘H eroes of SARS : Professional roles and ethics of health care workers’, Journal of Infection, 49, 210–215. Imperato, P.J. (1989) ‘H istorical precedent and the obligation to treat AIDS patients’, Journal of Community Health, 14: 4, 191–195. Kotalik, J. (2005) ‘Preparing for an influenza pandemic: Ethical issues’, Bioethics, 19: 4, 422–431. Lachmann, P.J. (1998) ‘Public health and bioethics’, Journal of Medicine and Philosophy, 23: 3, 297–302. Lawson, A. (2007) ‘If bird flu grips the nation, doctors will need guns’, The Sunday Times 11 F ebruary, viewed 20 N ovember 2007, . Levin, P.J., Gebbie, E.N . and Qureshi, K. (2007) ‘C an the health-care system meet the challenge of pandemic flu? Planning, ethical, and workforce considerations’, Public Health Reports, 122: 5, 573–578. Mackler, N., Wilkerson, W., and Cinti, S. (2007) ‘Will first-responders show up for work during a pandemic? Lessons from a smallpox vaccination survey of paramedics’, Disaster Management and Response, 5, 45–48. McCullough, L.B. (2006) ‘Ethically justified limits on the obligations of physicians and health care organizations in response to epidemics and bioterrorism’, Advances in Bioethics, 9, 175–186. N guyen-Van-T am, J., and H ampson, A . (2003) ‘T he epidemiology and clinical impact of pandemic influenza’, Vaccine, 21, 1762–1768. Nickell, L.A., Crighton, E.J., Tracy, C.S., Al-Enazy, H., Bolaji, Y., Hanjrah, S., Hussain, A., Makhlouf, S., and Upshur, R.E.G. (2004) ‘Psychosocial effects

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of SARS on hospital staff: S urvey of a large tertiary institution’, Canadian Medical Association Journal, 170: 5, 793–799. Olick, R.S. (2004) ‘Ethics, epidemics, and the duty to treat’, Journal of Public Health Management and Practice, 10: 4, 366–367. Potera, C. (2005) ‘Infectious disease: In disaster’s wake: Tsunami lung’, Environmental Health Perspectives, 113: 11, A 734. R ichards, P. (1977) The Medieval Leper and his Northern Heirs (C ambridge: D .S . Brewer). Ruderman, C., Tracy, C.S., Bensimon, C., Bernstein, M., Hawryluck, L., Shaul, R.Z., and Upshur, R.E.G. (2006) ‘On pandemics and the duty to care: Whose duty? W ho cares?’, BMC Medical Ethics, 7, 5, viewed 20 N ovember 2007, . S elgelid, M .J. (2005) ‘Ethics and infectious disease’, Bioethics, 19: 3, 272–289. Treanor, H.L. (2000) ‘Health risks and the health care professional’, Medicine, Health Care and Philosophy, 3, 251–255. Verweij, M . (2005) ‘O bligatory precautions against infection’, Bioethics, 19: 4, 323–335. Vynnycky, E., Trindall, A., and Mangtani, P. �������������������������������������� (2007) ‘Estimates of the reproduction numbers of Spanish influenza using morbidity data’, International Journal of Epidemiology, 36, 881–889. W ingard, J. (2007) ‘F acing the next pandemic: R eady or not’, Biology of Blood and Marrow Transplantation, 13, 107–109. W orld H ealth O rganization (2007) Risk Reduction and Emergency Preparedness: WHO Six-year Strategy for the Health Sector and Community Capacity Development (Geneva: WHO Press). W orld H ealth O rganization (2007) The World Health Report 2007: A Safer Future: Global Public Health Security in the 21st Century (Geneva: WHO Press). W u, J., Y an, P., and A rchibald, C . (2007) ‘M odelling the evolution of drug resistance in the presence of antiviral drugs’, BMC Public Health, 7, 300, viewed 20 N ovember 2007, . W ynia, M .K. (2007) ‘Ethics and public health emergencies: Encouraging responsibility’, American Journal of Bioethics, 7: 4, 1–4.

PART IV COMM ENTARI ES

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C hapter 28

C ase C ommentary: Evans v The United Kingdom N atasha H ammond

T he long awaited judgment by the Grand C hamber of the European C ourt of H uman R ights in the case of Evans v The United Kingdom (A pplication no. 6339/05) was handed down on 10 A pril. T he outcome of the decision was not a surprise for the majority of commentators who have been awaiting this judgment. H owever, from the news reports surrounding the case it would appear that the decision was a surprise, and obviously a huge disappointment to N atallie Evans. T he case itself is a sad but unfortunately not unusual situation faced by women today. T he applicant, N atallie Evans, had sought infertility treatment with her partner, M r Johnston. S ome three months after starting treatment the couple were informed that M iss Evans had pre-cancerous tumours on her ovaries and that her ovaries would have to be removed. T he couple were told that there was time to extract some eggs for in vitro fertilization, and after a meeting to discuss the couple’s options and consent procedures, including the fact that either party could withdraw his or her consent at any time before the embryo’s were implanted, it was agreed that eggs would be harvested for in vitro fertilization with M r Johnston’s sperm. M r Johnston reassured M iss Evans that he wanted to be the father of her children and that there was no need to consider freezing her eggs (a procedure which was not performed at the clinic). A month later six embryos were successfully created and stored. M iss Evans underwent the operation to remove her ovaries and was advised to wait two years before attempting to implant any of the embryos into her uterus. Following the breakdown of the relationship in 2002 Mr Johnston wrote to the clinic to notify it of the separation and to state that the embryos should be destroyed. T he clinic informed M iss Evans that it was now under a legal obligation to destroy the embryos; she sought an injunction from the H igh C ourt of the U nited Kingdom to restore M r Johnston’s consent to use and store the embryos. S he also sought a declaration of incompatibility under the H uman R ights A ct 1998. M iss Evans claims were rejected by the H igh C ourt and in the subsequent appeal to the C ourt of A ppeal. F ollowing a refusal by the H ouse of Lords to hear the case M iss Evans appealed to the European C ourt of H uman R ights. Judgment was given on 7 March 2006 against Miss Evans and she made a final appeal to the Grand C hamber of the European C ourt of H uman R ights.

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T he Grand C hamber is required to consider all aspects of the application previously examined by the C hamber. In this instance M iss Evans had complained that provisions of English law, the Human Fertilisation and Embryology Act 1990, contravened A rticles 2, 8 and 14 of the European C onvention on H uman R ights (ECHR ). Article 2: The Right to Life T he alleged violation of A rticle 2 of the ECHR related to the embryos themselves, that the legal requirement to destroy the stored embryos once consent had been withdrawn violated the embryos’ right to life. A lthough M iss Evans’ legal team did not pursue this alleged violation in the appeal, the Grand C hamber was required to consider this matter again, albeit briefly. The Grand Chamber is in agreement with the Chamber that due to the lack of a European consensus on an accepted definition of the beginning of life, …the issue of when the right to life begins comes within the margin of appreciation…Under English law,…an embryo does not have independent rights or interests and cannot claim…a right to life under Article 2. There had not, accordingly, been a breach of that provision.

Article 8: the Right to Respect for Private and Family Life A rticle 8, the right to respect for private life, was agreed to include the right to respect for both the decision to become and not to become a parent and that this also includes the decision to become a parent in the genetic sense. T his undoubtedly involves a conflict between the Article 8 rights of two private individuals, whichever solution is used will result in one party either being forced to become a parent, or the other being denied the opportunity of becoming a genetic parent. A dditionally, the Grand C hamber accepted the U K Government submission that the case also involved wider public interests, namely to uphold the principle of primacy of consent and to promote legal clarity and certainty. In contrast to the U K C ourts, the Grand C hamber views this case as involving positive obligations upon the State, rather than interference, and that ‘…the principal issue…being whether the legislative provisions as applied in the present case struck a fair balance between the competing public and private interests involved’. In seeking to determine the question whether the application of the law struck a fair balance  T he case of Evans v. The United Kingdom (app no 6339/05) paragraph 54.   Ibid. paragraphs 71 and 72.   Ibid. paragraph 74.   Ibid. paragraph 76.

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between competing interests, it is recognized by the Grand C hamber that the margin of appreciation to be afforded to the UK is a wide margin due to the lack of common ground in the Member States on these difficult ethical issues and that the policies and principles to be applied in these sensitive areas is to be decided by each S tate. The detailed and lengthy process which the UK undertook before the enactment of the Human Fertilisation and Embryology Act 1990 is also considered as relevant by the Grand C hamber. M iss Evans criticized the consent rules laid out in the A ct due to the inability to disapply them in certain circumstances. H owever, the Grand C hamber …does not find that the absolute nature of the law is, in itself, necessarily inconsistent with Article 8. …Respect for human dignity and free will, as well as a desire to ensure a fair balance between the parties…underlay the legislature’s decision to enact provisions permitting of no exception…In addition…the absolute nature of the rule served to promote legal certainty and to avoid the problems of arbitrariness and inconsistency inherent in weighing…“entirely incommensurable” interests.

As such the Grand Chamber concludes that the ‘…general interests pursued by the legislation are legitimate and consistent with A rticle 8’. In respect of the competing private interests the Grand C hamber is adamant that M iss Evans’ right to respect to become a genetic parent should not be accorded greater weight than M r Johnston’s right to respect his decision not to have a genetically related child with M iss Evans. A fair balance had been struck between all of the competing interests, the domestic law is clear and brought to M iss Evans’ attention at the time of treatment and storage, and as such there was no violation of A rticle 8 of the ECHR . Article 14: Discrimination Miss Evans argued under Article 14 ECHR taken in conjunction with Article 8, that there was discrimination between women who could conceive without medical assistance and women, such as herself, who required medical assistance for conception. The Grand Chamber quickly dismissed this argument because it was not required to decide if there was discrimination in this case as ‘…the reasons given          

Ibid. paragraphs 77, 81, 83 and 85. Ibid. paragraph 86. Ibid. paragraph 89. Ibid. paragraph 89. Ibid. paragraph 90.

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for finding that there was no violation of Article 8 also afford a reasonable and objective justification under Article 14…’10 Dissenting Judgment W hilst the majority of the Grand C hamber agreed that there had been no violation of A rticles 2, 8 and 14 of the ECHR , and therefore M iss Evans was not entitled to use embryos created with her oocytes and M r Johnston’s sperm, a minority of four judges agreed that there had been a violation of Article 8 and Article 14 (taken in conjunction with A rticle 8). T he dissenting judges see this case as one involving interference with M iss Evans’ right to respect for the decision to become a genetic parent. A lthough the interference is prescribed by law, the judges view the interference as disproportionate and that the law has not struck a fair balance in this particular case. T heir reasoning for this is that the absolute nature of the U K law does not take into account the very special circumstances of this case. The judges state that applying the absolute nature of the legislation is disproportionate as it prevents the balancing of competing interests in this particular case. They state that ‘…no balance is possible in the circumstances of the present case since the decision upholding J’s choice not to become a parent involves an absolute and final elimination of the applicant’s decision’.11 W hilst the dissenting judges agree with the majority that the U K legislation is not in itself contrary to A rticle 8 ECHR , the particular circumstances of this case has led the judges to ‘…look beyond the mere question of consent in the contractual sense’.12 T he dissenting judges are critical that the majority of the Grand C hamber has failed to give weight to the fact that M iss Evans has had her last chance to have genetically related children and that no weight has been given to M r Johnston’s assurances to M iss Evans which she relied upon in good faith. A s such the judges ‘…believe that [Miss Evans’] interests weigh more heavily than [Mr Johnston’s] and that the United Kingdom authorities’ failure to take this into account constitutes a violation of A rticle 8’.13 F inally the judges also feel that there is a violation of A rticle 14 in conjunction with A rticle 8, using the comparison of an infertile man.

10  11  12  13 

Ibid. paragraph 96. Ibid. paragraph 7 (dissenting judgment). Ibid. paragraph 10 (dissenting judgment). Ibid. paragraph 9 (dissenting judgment).

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Conclusion The situation which Miss Evans now finds herself in is undoubtedly sad and one which generates much public sympathy. H owever, there is a need for the law governing medically assisted reproduction to take a ‘bright line’, to be absolutist in its nature, as this is an area which sees many different situations which could form ‘an exception to the rule’. If exceptions were allowed to this absolute consent rule currently required in the UK legislation the Courts would have a difficult and onerous task to decide which ‘parent’ of the gametes should decide what happens to them. The Grand Chamber took a balanced and sensible approach to the UK legislation, the issue of consent and possible withdrawal was explained to both parties prior to donation, the law seeks to strike a fair balance between the competing interests of both parties involved in medically assisted reproduction and this has been upheld at the highest level.

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C hapter 29

T he Incident of the C ontainer S hip MSC Napoli: Is it an Intractable Problem? H o-S am Bang

Introduction T he accident of the container ship MSC Napoli, which was beached off D evon, was enough to draw the attention of the public. T he 62 000-tonne MSC Napoli, which was cracked* in storms on 18 January 2007, was deliberately run aground following hull failure. A charity has collected 988 birds in the wake of oil spills from the Napoli since its grounding. Politicians feared that such examples of substandard shipping would spoil the U K’s image. T hey ‘noted that the vessel also grounded in 2001, and the fact that the company has been blacklisted by the UK maritime unions’. T hey called on the government to urgently consult on measures to improve safety and working conditions on such vessels. T he T ransport M inister, on the other hand, defended the decision made by the SOSR EP to tow the vessel to the current position saying that oil would have washed up on beaches for many years if the MSC Napoli had sunk in the English C hannel. He went on to say that the European Union’s top maritime official, Fotis Karamitsos, ‘praised’ the work which the SOSREP has done with regard to the ship and said that ‘beaching the Napoli had diminished the risk of catastrophe’. Current attention now focuses on why the ship cracked. It is arguable that the ship should have been strong enough to resist storms since seagoing ships should generally be considered seaworthy throughout a voyage. S ome assert that the ship’s earlier grounding caused the problem. T he ship, previously named CMA*fatigue cracking or metal fatigue  ���������������������������������������� BBC N ews on F riday, 2 F ebruary 2007 at , accessed on 4 February 2007. A House of Commons motion has been signed by eight Labour M Ps expressing concern about the environmental damage caused.   Ibid. F ront Page N ews of the Lloyd’s List on 5 F ebuary 2007.   Ibid.  ���������������������������������������������������������������������������������� T he S ecretary of S tate’s R epresentative for M aritime S alvage and Intervention, M r R obin M iddleton.  ������������������������������������������������������������������� BBC News on 1 February 2007 at , accessed on 4 February 2007.   Ibid.  �������������������������������������������������������������� T he term ‘seaworthy or seaworthiness’ will be discussed later.

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CGM Normandie, ran aground in the S trait of M alacca in 2001 and major repairs had to be made. O thers assert that the multi-national crew might be concerned with the accident. W ith regard to the actual reason for hull failure, it is also asserted that fatigue cracking may have caused the problem in that rather long ships flex more than many types of ship in a seaway and care needs to be taken with the weight distribution in the cargo holds and tanks to minimize stresses.10 Cracking in longitudinals, which has propagated to neighbouring structures and shell plates, has occurred to a number of large container vessels, not necessarily old ships.11 H owever, the MCA 12 states that it would not be appropriate to speculate on the causes of the Napoli’s hull failure at the moment since a full investigation will be carried out by the M arine A ccident Investigation Branch.13 H owever, although this author would not disagree with the MCA , it is worth discussing problems that lie behind the incident in some detail. T his chapter, therefore, focuses on whether or not the international community could prevent a repeat of the incident. A nd if so, how exactly could a repeat be prevented? In order to answer these questions, relevant international law, aimed at dealing with shipping accidents, will be first discussed. This will be followed by an examination of the shortcomings of maritime actors.

 F ront Page N ews of the Lloyd’s List on 19 January 2007. 3000 tonnes of steel were required for repairs during four months of repair work at the Vinashin yard in Vietnam. The damage to the ship at the time of grounding is as follows: The ship’s forward void space, bow thruster room, forward deep tanks No.2 and 3, No.3 Wing Ballast Tank and cargo holds were breached. The duct keel was totally flooded and the bow thruster, heeling pump and emergency fire pump were damaged. A crack was also found in part of the main deck and hatch coaming.

The classification society Det Norske Veritas said that the MSC Napoli had been drydocked in S ingapore in N ovember 2004, and had undergone class renewal in January 2006.   Ibid. Its multinational crew included two British cadets as well as Bulgarians, Ukrainians, Turks, Indians and Filipinos. 10 ���������������������������������� T he Lloyd’s List, 23 January 2007. 11  Ibid. 12 ���������������������������������������������������� It stands for the U K M aritime and C oastguard A gency. 13 ����������������������������������������������������������������������� See , accessed on 12 February 2007. Under Article 97(7) a flag State ‘shall cause an inquiry to be held by or before a suitably qualified person or persons into every marine casualty or incident of navigation on the high seas involving a ship flying its flag and causing loss of life or serious injury to nationals of another S tate or serious damage to ships or installations of another S tate or to the marine environment’ (emphasis added).

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Relevant International Law and the Prevention of Shipping Accidents Article 10 of the High Seas Convention14 Generally it is in the interests of the international community that shipping should be made as safe as possible and shipping casualties should be kept to a minimum.15 To this end, States shall take such measures for its vessels as are necessary to ensure safety at sea with regard to communications, the prevention of collisions, crew conditions and the construction, equipment and seaworthiness of ships, in conformity with ‘generally accepted international standards’.16 T his, in effect, means that the main responsibility for the safety of shipping rests with the flag State. The 1982 UNCLOS17 Article 94 Article 94 lays down the duties of the flag State regarding ships flying its flag, with particular reference to its jurisdiction and control in administrative, technical and social matters, and to ensuring safety at sea. Paragraph 3 requires the flag State to take such measures for ships flying its flag as are necessary to ensure safety at sea with respect to the matters listed in subparagraph (a), (b) and (c).18 H ere, the wording ‘inter alia’ implies that this list is not exhaustive. T he application of paragraph 3 14 ������������������������������������������������������������������������������ T he C onvention on the H igh S eas, Geneva, 29 A pril 1958. In force 30 S eptember 1962. 450 UNTS 11. 15 ������������������������������������� C hurchill R .R . and Lowe, A .V. (1999) The Law of the Sea (M anchester: M anchester U niversity Press), 264. 16 �������������������������������������������������������� A rticle 10 of the H igh S eas C onvention (emphasis added). 17 �������������������������������������������������������������������������� U nited N ations C onvention of the Law of the S ea, M ontego Bay, 10 D ecember 1982, In force 16 N ovember, 1994.C mnd. 8941; 21 ILM 1245 (1982). 18 ���������������������������������������� Article 94 (Duties of the flag State): ‘3. Every State shall take such measures for ships flying its flag as are necessary to ensure safety at sea with regard, inter alia, to: (a) the construction, equipment and seaworthiness of ships; (b) the manning of ships, labour conditions and the training of crews, taking into account the applicable international instruments; (c) the use of signals, the maintenance of communications and the prevention of collisions. 4. S uch measures shall include those necessary to ensure: (a) that each ship, before registration and thereafter at appropriate intervals, is surveyed by a qualified surveyor of ships, and has on board such charts, nautical publications and navigational equipment and instruments as are appropriate for the safe navigation of the ship; (b) that each ship is in the charge of a master and officers who possess appropriate qualifications, in particular in seamanship, navigation, communications and marine engineering, and that the crew is appropriate in qualification and numbers for the type, size, machinery and equipment of the ship; (c) that the master, officers and, to the extent appropriate, the crew are fully conversant with and required to observe the applicable international regulations concerning the safety of life at sea, the prevention of collisions, the prevention, reduction and control of marine pollution, and the maintenance of communications by radio. 5. In taking the measures called for in paragraphs 3 and 4 each S tate is required to conform to generally accepted

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is subject to the requirements provided in paragraph 5. S eaworthiness of ships, referred to in paragraph 3(a), indicate ‘that reasonably safe and proper condition in which a vessel’s hull and equipment, her cargo and storage thereof, machinery and complement of crew, are deemed adequate to undertake a specific sea voyage or to be employed in a particular trade’.19 T he term ‘seaworthiness’ also literally means ‘[in] a fit condition to undergo a voyage, and to encounter stormy weather’.20 T he reference in paragraph 3(b) to ‘applicable international instruments’ is also subject to paragraph 5 in the context where the measures called for in paragraph 3 are required to conform to ‘generally accepted international regulations, procedures and practices’. Paragraph 4 of A rticle 94 adds details to the provisions contained in paragraph 3 and specifies further measures to be taken by the flag State to ensure safety at sea. To be more specific, the measures to be taken by flag States contain the provision that every ship is surveyed by a qualified person to ensure that it has the proper charts, other nautical publications and navigational equipment on board. T hese measures stipulated in Article 94(4)(c) are also concerned with the qualifications of the master, officers and crew of the ship, and require that they be fully familiar with the applicable international regulations with respect to the safety of life at sea. T he applicable international regulations are laid down in the conventions of the IMO including SO LAS ,21 1978 STCW 22 and 1966 Load Lines.23 IMO conventions In the light of the causes of accidental pollution, the main problem is not a lack of legislation or the failure of S tates to ratify those treaties. T here are, in fact, a number of treaties that contain detailed rules and standards, aimed at ensuring that ships are seaworthy and their crews are qualified. Vital international conventions, such as SO LAS , the STCW C onvention, the Loadlines C onvention, 1972 CO LR EGs24 were adopted under the auspices of the International M aritime O rganization (IMO ) international regulations, procedures and practices and to take any steps which may be necessary to secure their observance’ (emphasis added). 19 ���������������������������� W .A . M cEwen and A .H . Lewis, Encyclopedia of Nautical Knowledge 487 (1953, 1985) in M .H . N ordquist (Editor-in-C hief), United Nations Convention on the Law of the Sea 1982 A Commentary Vol. III (M artinus N ijhoff Publishers, T he H ague), 1995, p. 147. 20 ���� XIV Oxford English Dictionary 2nd ed., 1989, p. 820 in M . H . N ordquist (Editorin-C hief), op. cit., p. 147. 21 ������������������������������������������������������������������������������� International C onvention for the S afety of Life at S ea (opened for signature 1 N ovember 1974, entered into force 25 M ay 1980) 1184 UNTS 2. 22 ���������������������������������������������������������������������������������� International Convention on Standards of Training, Certification and Watchkeeping for S eafarers (opened for signature 1 D ecember 1978, entered into force 28 A pril 1984) 1361 UNTS 2. 23 ���������������������������������������������������������������������������������� International C onvention on Loadlines (opened for signature 5 A pril 1966, entered into force 21 July 1968) 640 UNTS 133. 24 ������������������������������������������������������������������������������ C onvention on the International R egulations for Preventing C ollisions at S ea, London, 20 O ctober 1972 (entered into force in 15 July 1977) 1977 UKTS 77.

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to prevent shipping accidents.25 In particular, provisions of SO LAS , STCW and the Loadlines C onvention are closely concerned with the incident of the MSC Napoli. Maritime Actors It is now worth noting what maritime actors can play a part in cracking down on shipping accidents (and vessel-source pollution). The flag State F lag S tate jurisdiction derives from A rticle 92(1) of UNC LOS that, except in certain situations, on the high seas a ship is subject only to the exclusive jurisdiction of the flag State.26 The State granting the ship the right to fly its flag has the right to exercise legislative and enforcement jurisdiction over its ship wherever the ship may be. F lag S tate jurisdiction is essential in that a ship on the high seas must be subject to the authority of a S tate to maintain maritime order. Both customary international law and treaty-based law have conferred a right to regulate a ship’s activities on its flag State. The flag State may not normally take enforcement actions against its ships in another S tate’s waters because those actions could encroach on another’s sovereignty.27 Flag State jurisdiction was formally acknowledged in Article 1 of the 1952 Brussels Convention for the Unification of Certain Rules R elating to Penal Jurisdiction in M atters of C ollision or O ther Incidents of N avigation.28 A rticle 1 inverted the highly criticized decision of the Lotus29 and the 1952 Brussels C onvention rule was repeated in A rticle 11 of the 1958 Geneva C onvention on the H igh S eas and in A rticle 97(1) of the 1982 UNC LOS . In the event of a collision or any other incident of navigation on the high seas, only either the flag State or the State of which a seafarer is a national may institute legal proceedings against the person.30 Since flag States have a duty to ensure that their ships comply with the rules and standards under A rticle 94 of the 1982 UNC LOS , the flag State is primarily responsible for ensuring that its ships are operated and 25 �������������������������������������������������������������� A detailed study of these C onventions falls beyond this study. 26 ������������������������������������������� A rt. 92(1) of 1982 UNC LOS : S tatus of S hips: 1. Ships shall sail under the flag of one State only and, save in exceptional cases expressly provided for in international treaties or in this C onvention, shall be subject to its exclusive jurisdiction on the high seas. A ship may not change its flag during a voyage or while in a port of call, save in the case of a real transfer of ownership or change of registry.

27 �������������������������������������������������������������������������� Bodansky, D. (1991) ‘Protecting the marine environment from vessel-source pollution: UNC LOS and beyond’ Ecology Law Quarterly, 18, 736. 28 �������������������������������������������������� Odeke, A. (1997) ‘Port state control and UK law’, Journal of Maritime Law and Commerce, 28, 658. 29 ���� T he Lotus case (1927), PCI J, S eries A , N o. 10. 30  Nottebohm C ase (Liechtenstein v. Guatemala), 1955 I.C .J. 4 (A pr. 6).

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maintained in an appropriate way minimizing the risk to seafarers, the marine environment and the cargo. The port State Over the last several decades, flag State control/jurisdiction has become inappropriate and its limitations have become more apparent.31 In the 1950s and 1960s, a number of ships turned to flags of convenience in order to circumvent complex regulations and to obtain economic advantages. Most flags of convenience S tates, except Liberia, have lax enforcement rules and regulations to oversee their ships under their flags. It should be noted, however, that not all substandard ships are flying flags of convenience States and Cambodia and Turkey both have a poor record as flag States. The international community has unsuccessfully attempted to control flags of convenience and make them less competitive for the past years. It seems to be difficult to abolish flags of convenience, but it should be possible to make flag of convenience States observe the international conventions. This should be done by the IMO and also could be done by port S tates.32 T he international community has had to request port S tates (or coastal S tates) to exercise jurisdiction in their internal waters (or in the territorial sea) over ships flouting internationally accepted rules and regulations. Shipowners/operators/charterers International shipping is very competitive. S hips are expensive assets with high capital value and equally high operating costs.33 It is arguable that sub-standard shipping may be associated with unscrupulous shipowners/operator/charterers to reduce operating costs. S hipowners/operators/charterers believe that reducing operating costs can be achieved by employing relatively low-waged crew and by flouting safety standards. Shipowners are considered as ‘the primary polluters’ in the maritime transport sector.34 T he international community should focus on how to catch unscrupulous shipowners and remedy them, which could be done by port S tate control/jurisdiction35 (unless flag States try to do so). 31 ���������������������������������������������������������������� This is not to say that the British flag has a poor reputation. 32 ������������������������������������������������������������������������������������� It should be also noted that there is also a limitation of port S tate control. S hips are normally very big and have complex structures. It may be practically impossible for the port State control officer to fully examine a ship to see if she complies with applicable international law in a limited time available to carry out a typical PSC inspection. S ee C aptain A mbrose R ajadurai, op. cit., p. 106. 33 ���������������������������������������������������������������������������� C aptain A mbrose R ajadurai (2004) ‘R egulation of shipping: the vital role of port S tate control’, MLAANZ (Maritime Law Association of Australia and New Zealand) Journal 18 : 83, 102. 34 ������������������������� A lan Khee-Jin T an (2006) Vessel-Source Marine Pollution: The Law and Politics of International Regulation (C ambridge: C ambridge U niversity Press), 36. 35 ���������������������������������������������� T hey are often referred to as ‘PSC ’ and ‘PS J’.

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Classification societies and shipyards When it comes to classification societies, they class and inspect vessels on behalf of flag States. Almost all flag States delegate such functions to recognized classification societies largely because of their lack of resources, expertise or interest although responsibility to inspect and certify ships rests with the national maritime administrations of the flag States.36 Therefore, classification societies’ role in shipping, in particular the safety of shipping, is cardinal. It is not uncommon to see problems with classification societies.37 A llegations have arisen of bias, lack of objectivity and outright neglect on the part of societies since shipowners contract directly with the society of their choice for certification services.38 Since classification societies are not governmental organizations, it might be hard to expect them to strictly enforce standards relating to vessels. A lso, classification societies may have a tendency to accept yard pressure to relax rules and standards.39 Conclusions T he problems of the incident of the MSC Napoli have been discussed in conjunction with the shortcomings of the maritime actors. T here are, in fact, ways in which shipping casualties such as the Napoli can be prevented. First, with respect to flag State control/jurisdiction, the flag State should commit itself to more vigorously enforcing international rules and standards for vessels flying its flag. Secondly, the international community must ensure that classification societies (or shipyards) should not be free from responsibility if ships that they inspected and classed (or repaired) have been involved in a shipping accident. In this regard, the international community should establish strict procedures to ensure that culprits are enjoined under ‘a chain of responsibility’ from getting away with it. Certainly, it will be a demanding task.40 T hirdly, PSC should be given more powers so that it complements the lack of the flag 36  Ibid. 37 ���������������������������������������������������������������������������������������� The classification societies have been criticized for their alleged laxity in surveying ships for compliance with the relevant standards. It should be noted, however, that not all classification societies have a poor record of performance as revealed by the Paris MOU Port S tate C ontrol. Ibid. 38  Ibid. 39 �������������������������������������������������������������������������������� Lloyd’s List, R ule out the C ulture to C ut C orners, 26 A pril 2001; A lan Khee-Jin T an, op. cit., 45. 40 ���������������������������������������������������������������������������������������� It should be noted that by the nature of international law, it cannot directly regulate non-State actors such as shipowners, classification societies. It can regulate only through the intermediary of a S tate, whether it be the territorial S tate, the S tate of nationality of individuals and companies, or the flag State. R.R. Churchill (2007) ‘From port State to court S tate? International litigation as a possible weapon to combat sub-standard ships’, in

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State as well as classification societies.41 PSC cannot be good enough to catch substandard ships and remedy them since there are, in fact, deficiencies in ships that should be prosecuted to discourage them from recurring. Lastly, with regard to port S tate jurisdiction, the port S tate should be able to prosecute maritime actors flouting relevant international rules and standards (required by the international community) by applying its national law, if any, and impose large fines.

N diaye, T .M . and W olfrum, R . (eds), Mensah, A., Law of the Sea, Environmental Law and Settlement of Disputes (Leiden: M artinus N ijhoff), 899–916. 41 �������������������������������������������������������������������������������� It goes without saying that the port State control officer should have relevant technical qualifications and practical merchant shipping experience. See Captain Ambrose R ajadurai, op. cit., p. 106.

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T he (N ot S o) Great Escape: T he Legal and M oral R esponsibility for the F oot and Mouth Outbreak 2007 R obert G. Lee

Introduction The foot and mouth outbreak of 2001 involved the slaughter of at least seven million animals. M any of these animals were not infected by the disease but the chosen method of stamping out the disease by culling the animals meant that there was no time to await confirmatory tests. Such was the virulence of the foot and mouth disease (FMD ) that by the time it was discovered in 2001 it had already spread to different areas of the country and thereafter the race was on to get ahead of the disease by the culling of, not only animals suspected as infected, but also stock on surrounding, contiguous farms. In the event fewer than one in four animals slaughtered were infected (Vincent 2006). T he estimated costs arising from the 2001 outbreak have been put at no less than £9 billion, with at least £3 billion in direct costs to the public sector and about £5 billion in costs to tourism and the rural economy. Out of the total costs incurred during the outbreak, compensation payments to farmers for the slaughter of their animals were said to amount to £1.34 billion. T he lasting impact on the farming and wider rural community of this episode cannot be understated. It has scarred not only those farmers whose animals were culled; those unaffected by the disease as such but unable to move stock to market arguably suffered more. These losses went uncompensated whereas the mandatory culling of animals at least triggered a payment of compensation under the Animal Health Act 1981. As the figures above show, few in the rural community found shelter from the storm created by the outbreak. It was with horror therefore that this community received the news on 2 August 2007 that there was a reported outbreak, confirmed the next day, of foot and mouth in cattle at a farm in N ormandy, S urrey. By 4 A ugust the strain of FMD was identified as the FMDV BFS 1860 O1 1967 (F oot-and-M outh D isease Virus, British F ield S train 1860, serotype O , subtype 1, isolated in 1967). T his date is not insignificant. Prior to 2001 the previous major outbreak of FMD had been in 1967. It was at that time that this strain had been isolated for laboratory purposes and thereafter it had not been found in the animal population. Given that the Institute of A nimal H ealth had its laboratory facility a mere two and a half miles away from

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the N ormandy farm at Pirbright and was the only U K facility authorized to handle the virus in question, the immediate tracing of the source of the disease was not especially taxing – though the discovery of the precise route of the escape did prove more troublesome. Adding to this difficulty was the fact that the IAH shared its facility with a commercial vaccine manufacturer, M erial A nimal H ealth Ltd. Control of the Disease In the days that followed other herds were culled within the protection zone established in S urrey and subsequent tests showed the same strain of FMD . T he Pirbright site was described in an initial H ealth and S afety Executive R eport on 7 August as a strong probability for the source of the outbreak. In this report airborne release was largely ruled out. W aterborne release was said to be a ‘possibility’ and transmission by human movement ‘a real possibility’. T his hypothesis was later endorsed by the C hief S cientist who even suggested that if human movement was to blame it may not have been accidental so as to amount to a ‘police matter’ rather than one of biosecurity. A fter the HS E R eport on 7 A ugust other suspected cases were reported but proved negative and on 24 A ugust the protection zone and on 8 S eptember the surveillance zone were lifted, the C hief Vet declaring that ‘I am satisfied that foot and mouth has been eradicated from the UK in 2007’ (Woods and Montagu 2007). This turned out to be mistaken, for puzzlingly on 12 September 2007 in Egham, a further episode of FMD was confirmed. Coming more than a month after the first outbreak and well outside the likely maximum 14 day incubation period for the virus, this later outbreak was a significant blow to the farming community. A s the N ational F armers’ U nion (NFU ) pointed out, extending into September, this outbreak came approaching a time when stock was due to be moving from upland to low-land farm areas. In addition the European Commission immediately revoked its earlier decision to allow the UK to resume meat and livestock exports to other Member States. A later epidemiology report describes the Egham outbreak as ‘unexpected’ but the second of two subsequent outbreaks proximate to the Egham site (labeled IP5) appeared to be earlier in chronology and the lesions of the animals possibly  ������������������������������������������������������������������������������ T hough in all 16 subsequent cases, the animals were culled on a ‘slaughter on suspicion’ basis and before laboratory tests were returned. H ansard HC 24 O ct 2007, C olumn 309W answer to parliamentary question put by Peter A insworth M P to Jonathan S haw.  ���������������������������������������������������������������������������������� In a Protection zone all premises containing livestock are inspected by vets, and subject to restrictions on movements of animals, animal products, and certain vehicles and activities.  ����������������������������������������������������������������������������������� In a S urveillance zone there are restrictions on movements of susceptible animals, animal products, manure, and certain activities but not including the movement of pets or other non-susceptible animals, vehicles, or slaughter for private consumption.

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sufficiently old to provide a direct connection to either the Pirbright escape and/or the Normandy outbreak. According to newspaper reports two of the three farmers now face threats of prosecution for failing to spot lesions in their stock, although one farmer was away on holiday at the time (T ibbetts and C lover 2007) and the other farm (IP5) had been subject to three inspections according to the Financial Times (H arvey, O ’D oherty and T ighe 2007). A fter these three cases a further three confirmed cases were reported on 21, 24 and 30 September. A later report suggests that these too are likely to have spread from site IP5. Institute of Animal Health research subject to independent expert peer review has concluded that the second phase of the outbreak originated from the first phase and was not from a separate release from Pirbright. T his strongly suggests that D efra failed to identify premises that had continued to be infected throughout A ugust prior to its re-emergence 17km from the original site in Normandy. This raises the possibility that the cull and subsequent disinfection and disposal of infected animals failed to eradicate the virus. Although this finding was made in late September and passed to Defra, it was eventually released by the IAH itself in D ecember 2007 around the time of the C allaghan R eview (C allaghan 2007) to defend itself from, suggestions that there had been a separate second escape of the virus from the site. T his creeping transmission of further FMD infections promoted a call for the use of vaccination – an issue that had been hotly debated at the time of the 2001 outbreak before being ultimately resisted and rejected. Prophylactic use of vaccines is not employed within the EU . R outine vaccination has been abandoned throughout Europe in favour of a policy of stamping out FMD outbreaks when they occur in M ember S tates though this stamping out can be aided by the use of vaccination as an emergency measure once an outbreak has occurred. The aim is to control the spread of FMD though vaccinated animals are then slaughtered. At an early point in the outbreak this possibility was admitted but then rejected by the C hief Vet who stated that: Vaccination can be used as a disease control measure if it is demonstrated that steps in addition to the slaughter policy are required to eradicate the disease. It has been decided not to vaccinate at this time because the risk of spread of disease outside of the S urrey area is still considered to be low at the present time.

T his is in spite of an earlier C hief Vet in evidence to the A nderson Enquiry promising that: ‘our approach towards vaccination has to be reviewed, particularly in the light of new and more effective vaccines’. T he decision not to vaccinate (as  ������������������������������������������������������������������������������� S ee D irective 85/511/EEC as amended. Vaccination could be used as an emergency measure once an outbreak had occurred but only if all vaccinated animals were then slaughtered.  �������������� S cudamore, J. Memorandum for Anderson Inquiry: Foot and Mouth Disease Contingency Planning (C VO 2001).

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in the 2001 outbreak) was supported by the NFU. In a statement on 2 October 2007 the NFU declared itself happy that vaccine was not used in the ‘localized’ outbreak because ‘it would not help to eradicate the disease’. By this time, however, a case of blue tongue virus (BT V) had been reported and the NFU accepted that vaccination was more likely to be a regular part of the means of control and eradication of BT V. T his was in part on the basis that ‘FMD can be controlled and eradicated relatively quickly by culling and bio-security measures alone’. In the light of the experience of the outbreak which culminated only six years earlier this statement is breathtaking in its sheer audacity. The truth of the NFU position is perhaps better reflected in another passage of the statement that: It takes longer to remove trade restrictions in live animals from a country or zone that has used vaccination against FMD . In the case of BT V the vaccine that is being developed would allow you to distinguish between an animal that had been vaccinated and one exposed to the virus.

T his implies that there is no such distinction possible for FMD virus, but this is not the case as Uruguay has employed testing for non-specific proteins while using vaccines to control FMD and research has suggested that these tests can facilitate the use of vaccine in a more progressive policy for FMD (Bruderer et al. 2004). T he point about trade restrictions is valid, however, as the WTO adopts OI E classifications to govern permitted import restrictions under the SPS agreement. C ountries without FMD , which do not resort to vaccination to remain FMD -free., will achieve disease free status where there has been no outbreak within a 12month period. Where foot and mouth disease then occurs if the outbreak can be restricted by stamping out, then disease free status will be regained within a 3month period of the last slaughter of diseased stock where this is followed by serological surveillance. This classification offers more favourable treatment to the one-third of countries without FMD which by choosing not to vaccinate control the conditions of trade with countries that need to resort to vaccination to control FMD . T he desire to protect this trade status governed the choice of a cull in 2001; to protect £500m of gross exports, a bill many times this figure was run up.  ��������������������������������������������������������������������������� Mackay, D.K. ‘Differentiating infection from vaccination in foot-and-mouth disease’. Vet Q 1998;20 (Suppl 2):S2–S5; Van Aarle, P. ‘The use of a 3ABC marker-test for FMD . 22nd C onf OI E R eg C ommission A sia, the F ar East and O ceania’, N ovember 2001.  ����������������������������������������������������������������������������� (Office International des Epizooties, now generally referred to as the World O rganization for A nimal H ealth) and see EU D irectorate General for R esearch Position of International O rganizations on Vaccination against F oot and M outh D isease (EU Parliament 22 M ay 2002).  ������������������������������������������������������������������������������� Bearing in mind that Britain is a significant net importer of meat – see Lucas Stopping the Great Food Swap: Relocalising Europe’s Food Supply (Green Party July 2002 reprint).

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Source of the Infection As explained above the Health and Safety Executive (HSE) were asked to investigate the Pirbright escape. T he HS E’s remit was to protect health and environment in establishments such as laboratories, though in this case the responsibility was shared with the D epartment for Environment F ood and R ural A ffairs (D efra), who licensed activity at the site under the Specified Animal Pathogens Order 1998. D efra was also the department in control of the foot and mouth epidemic once discovered. The possibility of water-borne spread identified in the initial report was now confirmed. The live virus strain – O1BFS – seems to have entered the site effluent drainage system. Waste water containing the live virus then leaked out and contaminated the surrounding soil. T he HS E found evidence of long term damage and leakage, including cracked pipes, tree roots breaching pipe work and unsealed manholes. Excessive rainfall in the month of July may have increased the potential for virus release from these shoddy drains. In the view of the HS E, human and vehicle movements at Pirbright were inadequately controlled. T here were incomplete records of vehicle movements in contravention of accepted practice and in breach of bio-security requirements at the site. Vehicles engaged in construction work had relatively unrestricted access to the site and the construction activities around the effluent drainage system make it likely that some of the vehicles became contaminated with the live virus. These vehicles drove from the site and down a road alongside the first infected farm. H owever, it is reported (Elliot 2007) that in evidence to the A nderson Inquiry (which at the time of writing is still sitting) a number of local people state that contractors at Pirbright sold topsoil from the construction works to neighbouring farms. This would have generated some small additional income for the contractors rather than having to pay a gate fee at a landfill, which might rise considerably if one took the view that given its origin it could not safely be regarded as inert waste. A t the same time of the HS E report an independent report was commissioned to look at bio-safety at the site. It found evidence of correspondence by Merial and the IAH dating back over four years concerning the poor state of the drainage. This correspondence had led nowhere because of any lack of agreement as to the funding of any repair or improvement. T o quote S pratt: There was evidence of a lack of urgency and ownership of risk at all levels, resulting in the failure to take appropriate decisions on the funding for essential improvements in safety critical infrastructure. T his was particularly documented in the series of letters and reports from the biological safety officer of IAH in his attempts over four years to get agreement on funding for the replacement of the effluent pipes.10  �������������������������������������������������������������������������������� S pratt, B. ‘Independent R eview of the safety of U K facilities handling foot-andmouth disease virus’ (31 A ugust 2007). 10  Ibid., p. 58.

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S ince 1997–1998, BBSRC has reduced the percentage of its total spend on its institutes from 38.1% to 31.2% in 2002–2003. It has consistently provided just over 50% of the total institute income in that period, while income from government departments as a percentage of total institute income has dropped from 26.2% in 1997–1998 to 20.3% in 2002–2003.11 D efra’s funding to Pirbright dropped from £9.6 in 2004–2005 to £8m in 2005–2006 and it was noted that the institute had no possibility of replacing equipment which had been officially noted to be ‘in desperate need of investment’.12 M uch of this was borne out in D ecember 2007 by a review, conducted by Sir Bill Callaghan (2007), which looked at recommendations made by the Health and S afety Executive (HS E) in its report on biosecurity at Pirbright. T hat review recommends that D efra passes responsibility for regulation of both animal and human pathogens to the HS E, as a single independent body. T he R eview reports that in the course of taking evidence a Defra inspector ‘told us that inspection work had been under-resourced for a number of years’. A ccording to the R eview this had resulted in insufficient training of staff and to Defra adopted a ‘box ticking’ approach to inspection rather than a risk-based approach. The report concluded that there were ‘systemic failings as a result of the fact that D efra’s regulatory enforcement function is a relatively small task, tacked on to a large organization with other strategic goals’. The Review also noted a conflict of interest in Defra’s role as regulator, under the Specified Animal Pathogens Order while at the same time being a major customer of animal pathogens research and diagnostics at Pirbright. O ne can see that this might influence Defra away from both tough regulatory action and also the imposition of additional expenditure if it was dependent on services from Pirbright for which it had to pay. The Review identifies clear concerns about drainage and suggests that failure to take action was a result of a lack of both independence and expertise. The outcome of the review is that regulatory responsibility is to be taken away from Defra and passed to the HSE under a single framework regulating animal and human pathogens: It seems to us that D efra is not well placed to carry out this regulatory function. It lacks the depth of expertise needed and has not, in the past, allocated sufficient resource to the task (Callaghan 2007, 14).

Questions of Compensation In view of the catalogue of disasters connected to the Pirbright escape as highlighted in the damning official reports that followed the episode, it is appropriate to ask what responsibility falls upon Government to compensate the farming community. 11 ����������������������������������������������������������������������� H ouse of C ommons S cience and T echnology C ommittee 2003/04 T hird R eport. 12 ������������������������������������������������������������������������ H ouse of C ommons S cience and T echnology C ommittee 2006/07 F ourth R eport.

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In view of what went on there would surely be little difficulty in establishing negligence though there are interesting questions of which party might be sued. There is a difficulty between the IAH and Merial as to which party caused the escape given that both parties used this strain of virus. W here two parties may have committed a tort but the claimant cannot show on a balance of probabilities basis which one of them did so, then we would expect the claim to fail. H owever, in Cook v Lewis,13 a C anadian case in which a hunter is shot by one of two parties, both of whom where clearly negligent, the court was prepared to place the burden on each of them to prove they were not responsible. T his approach is only helpful, however, where both parties are clearly tort feasors and it is possible in the Pirbright instance that only one party was responsible for the escape of the virus, bur that we simply do not know which one that is. In that case the claim must fail. In practice the solution might be to sue the Institute of A nimal H ealth on the basis of their responsibility for the state of the cracked drain and their negligent omission to repair it and then see whether the IAH chooses to join M erial as a codefendant. A n alternative strategy is to sue under the rule in Rylands v Fletcher which governs liability for the escape of dangerous things from land and requires no proof of fault in relation to the escape. In this the assumption is that if the storage of solvents in an industrial village14 constitutes a ‘non-natural user’ of the land so as to bring the rule into play, the accumulation of something as virulent as FMD on the premises in S urrey must equally be caught by the rule. T his might beg the question of who was in control of the dangerous thing that actually escaped. T here are some suggestions that a landowner can be liable for authorizing an accumulation on the part of the tenant, but if one reads the authority usually advanced for this proposition, Rainham Chemical Company v Belvedere Fish Guano Company15 the case would really seem to rest on the factual question of whether the landowners had sufficiently divested themselves of occupation and control of the site in the course of founding a company to carry out the manufacture of picric acid during the First World War. One final possibility is to sue neither IAH nor M erial but D efra in terms of their negligent regulation of conditions at the site in an attempt to overcome the problem that the precise source of the virus (M erial or IAH) is unknown. However, the mere imposition of regulatory responsibility under statute does not of itself lead to liability where the concerns that gave rise to regulation actually materialize.16 Indeed there is said to be ‘genuine public interest in discouraging undue regulatory caution, especially where safety is at stake, as also against wasteful diversion of agency resources into defensive measures’ (S tallworthy 2003). T his does not necessarily rule out an action in tort but it will be necessary to find a duty of care for the benefit of a specific and limited group of people of which the claimant is one. W here the escape of foot and mouth virus is 13 ��������������� [1951] SCR 830. 14 ���� S ee Cambridge Water Company v Eastern Counties Leather [1994] 2 AC 264. 15 ���������������� [1921] 2 AC 465. 16  Yeun Kun Yeu v Attorney General for Hong Kong [1998] AC 175 (PC ).

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concerned, its virulence might mean that it could spread far and wide, potentially affecting huge numbers of the farming community such that it is not considered ‘fair just and reasonable’ to impose a duty of care.17 This short analysis of the law demonstrates the difficulties of recovering compensation at common law in the particular circumstances of the Pirbright outbreak, but it is a purely academic exercise for this reason. Those farmers whose animals contracted the disease together with other surrounding farmers whose animals are culled as a precautionary measure will be compensated under the statutory scheme within the A nimal H ealth A cts. A s the compensation paid is reasonably generous, since the scheme seeks to avoid disincentives to report the disease, and will cover the additional costs of the disinfection process, it is likely that farmers will be adequately compensated under the scheme rendering any common law claim redundant. H owever, losses extend far beyond the farms infected and as is explained below these losses are likely to be irrecoverable in law. Before examining why this is the case, it is useful to look at the nature and extent of these losses. A s indicated above there were widespread controls on the movement and marketing of animals. A 20-day standstill for moved animals and additional controls on livestock shows and markets ended on 8 September 2007 only to be reimposed when the second phase of the outbreak was recognized some two weeks later. O nce these immediate restrictions were lifted, however, an EU ban on meat export remained in place and did so until it was largely lifted on 14 D ecember 2007. A round the country this left animals stranded on farms long passed the point at which it was expected that they would be sold for export and requiring feed even though any actual prospect of later sale was uncertain. In W ales the Light Lambs W elfare D isposal S cheme was introduced to slaughter and incinerate up to 300 000 of the 850 000 lambs produced in 2007. T hese ‘lighter’ lambs (under 25kgs) are reared for export, having no ordinary market in the UK. The voluntary scheme paid out £15 per animal, the A ssembly Government having made £6.75m available for the scheme. A S cottish Executive scheme for light lambs similarly offered £15 per lamb in a scheme that included a potential 250 000 lambs, but two weeks after this announcement the Executive came forward with a £25m rescue package for the struggling Scottish livestock sector. Of this money £19m covered payments of £6 per breeding ewe by way of support to allow the sector to maintain itself into the next breeding season allowing a crop of lambs for 2008. W ales felt unable to match this payment. It was widely reported in S cotland (Peev 2007) and in W ales (Vaughan 2007) that the U K Government would pay compensation of £8.1m to S cottish farmers and £6.5m to those in W ales in what was seen as a run up to an autumn election, only for any such offer to then be withdrawn after Gordon Brown called off a general election. H ilary Benn the S ecretary of S tate for Environment, F ood and R ural A ffairs stated in the H ouse of C ommons that: 17  Caparo v Dickman [1990] 2 AC 605.

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there is not a shred of truth in the allegation that any possible election had anything to do with any decisions relating to funding for foot and mouth.18

T he U K Government’s share of the compensation amounts to £8.5 million in oneoff payments paid directly to farmers using the hill farm allowance scheme, and effectively uplifting by just over 30% their 2007 payment. In addition £1m to the Arthur Rank Centre for disbursement to farming charities, and £2m was allocated to the promotion and marketing of lamb, beef and pork.19 R eaders may recall that at this time the Government embarked on a support system for Northern Rock that now amounts to £30bn in loans that may never be recovered. T he losses in W ales as a result of movement and export restrictions are estimated to have cost the sheep sector £2m per week20 but there has been no question of these being paid. As things stand, therefore, these losses will go uncompensated. They are likely to be uninsured losses. At the time of the 2001 outbreak we explored the market for insurance.21 D eath of cattle from FMD or from a Government slaughter order is generally excluded from farming policies but it is possible to buy back this cover. This market was small, specialized and mainly serviced by NFU Mutual. T he NFU M utual’s policy wording on FMD pays the insured a percentage of the market value, of any animals that die or are slaughtered, under a Government order or eradication programme for disease control. Less than 10% of NFU Mutual’s policyholders were insured against FMD at the time of the outbreak, mainly those with pedigree stock. Bizarrely insurance payments were made independently of any Government payment, which was taken not to affect the insurer indemnification. Although some livestock markets, as well as being covered for closure due to fire and storm, had cover for an outbreak of a notifiable disease, the NFU Mutual had only two to three of such claims at the time of the 2001 outbreak. Other insurance policies held by hoteliers and organizers of country shows or exhibitions had a consequential loss component and could be triggered on the outbreak of human or animal disease within a certain radius of the insured’s premises but in general consequential losses to farmers constituted uninsured losses. Following the 2007 outbreak, Defra did explore the possibility of the wider use of insurance22 but little came of the initiative. O ne irony is that the presence of a statutory compensation scheme for the disease itself inhibits entrants to the market and leaves limited insurance capacity for FMD and rendering the provision of insurance a questionable business venture if take up might be low. Elsewhere 18 �������������������������������������������� H ansard, H .C . 17 O ctober 2007 at C olumn 853. 19 ���������������������������������������������������� A nnounced in the H ouse of C ommons on 8 O ctober 2007. 20 ��������������������������������������������������������������������� Evidence given by H ybu C ig C ymru (M eat promotion W ales) to the W elsh A ssembly Government’s F inance C ommittee, 22 N ovember 2007. 21 ����������������������������������������������������������������������������� M inoli, D ., ‘A summary report on the insurance aspects of the foot and mouth outbreak of 2001’ (BRASS, August 2003). 22 ��������������������������������������������������������������� O n the recommendation of the A nderson Inquiry – see A nderson I Foot and Mouth Disease: Lessons to be Learned Inquiry Report HC 888, 2002.

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it has been argued that there is little sense in a statutory scheme of compensation when one is looking to produce incentives towards bio-security (Campbell 2003). M oreover, as is demonstrated here, liability issues may be complex when dealing with the spread of infectious disease. It is interesting that NFU M utual is the major carrier suggesting that parts of the insurance industry have a poor understanding of both disease control and the stakeholder relationships in this area. An effective insurance market might better cope with the losses thrown up by the Pirbright episode, but the growth of this market is inhibited by the government policy of statutory compensation. The NFU are helping co-ordinate a group action to seek to recover compensation for farmers suffering financial losses as a result of bio-diversity controls following the Pirbright escape. O n 13 N ovember the solicitors sent a letter before action to both M erial and the Institute of A nimal H ealth requesting a response within 28 days. Interestingly the solicitors state that: T hese letters outline our case and advise both companies of our intention to issue lead cases to recover losses suffered by the farming community if this matter cannot be resolved without resorting to the C ourts. It’s important to note that these cases may well be contested and could end up in the H ouse of Lords.23

It would seem that if these actions are anything other than an attempt to exert further pressure on Government to make an ex gratia payment, then the intervention of the H ouse of Lords may well be necessary. A s the law stands the H ouse of Lords would even have to overturn certain of its own earlier judgments24 if these losses are to be compensated since there is a long-standing rule that these types of economic loss are irrecoverable. But to illustrate this, it is useful and somewhat ironic to turn to a H igh C ourt decision which is over 40 years old. T he case of Weller & Co –v– Foot and Mouth Disease Research Institute25 concerns Pirbright. W eller & C o were cattle auctioneers based at Guildford and Farnham markets when at the turn of the year in 1959–1960 cattle in the vicinity of Pirbright (then named the F oot and Mouth Disease Research Institute run by the Ministry of Agriculture) FMD broke out. T he M inistry denied responsibility but W eller sued when the same M inistry issued an order closing both Guildford and Farnham markets claiming loss of profits on the cattle sales. On the preliminary issue of whether such losses were recoverable, W idgery J stated that:

23 ����������������������������������������������������������������������� Press release from T hring T ownsend dated 13 N ovember 2007 available at: . 24 ���������������� S ee for example Leigh and Sillavan Ltd v Aliakmon Shipping Company [1986] AC 1 and also Hedley Byrne v Heller and Partners [1964] AC 464 in which their Lordships made it clear that the possibility of recovery for economic loss resulting from negligent misstatement constituted a departure from the general rule. 25 �������������������� [1965] 3 A ll ER 560.

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In the present case, the defendants’ duty to take care to avoid the escape of the virus was due to the foreseeable fact that the virus might infect cattle in the neighbourhood and cause them to die. T he duty of care is accordingly owed to the owners of cattle in the neighbourhood, but the plaintiffs are not owners of cattle and have no proprietary interest in anything which might conceivably be damaged by the virus if it escaped. Even if the plaintiffs have a proprietary interest in the premises known as Farnham Market, these premises are not in jeopardy. In my judgment, therefore, the plaintiffs’ claim in negligence fails even if the assumptions of fact most favourable to them are made.

In other words, any ������������������������������������������������������������������� duty was owed only to the owners of infected cattle and not to third parties who while suffering economic losses could show no direct damage. T his case stands alongside a wealth of other authority, in spite of the passing years, and may help explain the confidence of the Environment Minister in saying that: O n the question of legal obligations, in the end, that is a matter for the courts to determine. We are aware that some of those affected by this outbreak are consulting lawyers, so it is only right and proper that we should await any proceedings that anyone may choose to bring in those circumstances.26

Conclusion T he Government’s position on compensation is clear and was summed up as follows: It is a long established principle that the Government does not meet the costs of consequential losses, which must be borne by the industry.27

N o explanation as to why this might be the case is offered but the majority of people might share the view of the S cottish C abinet S ecretary for R ural A ffairs and Environment who pointed out that: The moral and financial responsibility for this clearly lies with the UK Government. H owever, the S cottish Government cannot and will not stand idly by and watch this vital industry go into meltdown.28

S adly the U K Government shares no such compunction. T he point about moral responsibility is surely the issue here. Reading various reports on the outbreak from Pirbright it is hard to imagine an episode of such staggering irresponsibility 26 ��������������������������������������������������� H ansard HC 8 O ct 2007 : C olumn 46 per H illary Benn. 27 ������������������������������������������������������� H ansard HC 24 O ct 2007 : C olumn 309W per Jonathan S haw. 28 ��������������������������������������������������������������������� R ichard Lochhead C abinet S ecretary for rural affairs and environment.

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in not only failing to repair a breach in the fabric of the research centre for so long but also in allowing contractors to actually export the very virus that it was charged to regulate in view of its highly virulent qualities. T he entire episode demonstrates the type of regulatory failing that hardly seems credible in the twenty-first century, Defra was charged with funding the establishment that it regulated, making it perfectly possible to cut corners on both tasks. We cannot even say that at least the outbreak was well and efficiently handled by Government as it claimed at the time, for it now transpires that the disease did spread while D efra claimed that it had been contained. T he most we can say about this is that, especially in view of the disastrous experience of the 2001 outbreak, we were extraordinarily lucky – but that is hardly how the farming community can view the matter as it pays the price for dereliction of duty on the part of Government. References Bruderer, U ., S wam, H ., H aas, B.,Visser, N ., Brocchi, E., Grazioli, S ., Esterhuysen, J.J., Vosloo, W ., F orsyth, M ., A ggarwal, N ., C ox, S ., A rmstrong, R . and A nderson, J. (2004) ‘D ifferentiating infection from vaccination in foot-andmouth-disease: evaluation of an ELISA based on recombinant 3A BC ’, Veterinary Microbiology 101: 3, 187. C allaghan, B. (2007) A Review of the Regulatory Framework for Handling Animal Pathogens (D efra, 13 D ecember). C ampbell, I.D . and Lee, R .G. (2003) ‘C arnage by computer’, Social and Legal Studies 12: 4, 425. Elliot, V. (2007) ‘C ontractors “sold top soil contaminated with foot and mouth virus”’, Times 13 D ecember. H arvey, F ., O ’D oherty, J., and T ighe, C . (2007) ‘D iseased animals had three health checks’, Financial Times 20 S eptember. Peev, G. (2007) ‘S cots farmers abandon hope of W estminster foot and mouth payout’, Scotsman 18 O ctober. S tallworthy, M . (2003) ‘Environmental liability and the impact of statutory authority’, Journal of Environmental Law 15, 3. Tibbetts, G. and Clover, C. (2007) ‘Farmers face fines for missing foot and mouth’, Telegraph 25 S eptember. Vaughan, G. (2007) ‘Brown’s outrageous u turn on foot and mouth cash’, Western Mail 13 N ovember. Vincent, R . (2006) ‘S ilence of the lambs calves, sheep, cattle and mathematicians’, Veterinary Times 6 M arch. W oods, R . and M ontague, B. (2007) ‘EU scorns British foot and mouth errors’, Times 16 S eptember.

C hapter 31

Ethics and the A dvent of the H oly Grail of S tem C ell R esearch S øren H olm

Towards the end of November 2007, just a few weeks after the announcement that the N obel prize in M edicine for 2007 would go to three pioneers in stem cell research, two research groups reported independently that they had cracked a major problem on the path towards the holy grail of stem cell research, a method to reprogramme somatic cells into pluripotent stem cells. T he two groups both turned human, adult (in distinction to foetal or embryonic) cells into what is known as induced Pluripotent Stem Cells (iPSC) (Takahashi et al. 2007; Y u et al. 2007). T his was achieved in mid-2006 in mice and it was thus expected that it would be possible in humans, although most probably thought it would take much longer to discover the correct technique than it did. In mice iPSC s have been shown to have the same potency as murine Embryonic S tem C ells (ESC ) including competence to become part of the germline in chimaeric animals and give rise to live offspring (Okita et al. 2007), and it has already been shown for human iPSC that they differentiate in the same way as human ESC (hESC) when exposed to validated treatment protocols known to lead to a specific differentiation (Takahashi et al. 2007). The research groups both used a technique where four genes known to be active in embryonic stem cells were introduced in somatic cells by retroviruses and overexpressed. Interestingly the four genes chosen were not identical, two are the same between the research groups and two differ, indicating that what has been activated by the procedures is some as yet to be identified underlying process switching somatic cells back into stem cell mode (Takahashi et al. 2007; Y u et al. 2007). In mice it has been shown that iPSC maintain stem cell characteristics even if the retroviral inserts are silenced. iPSC induction should therefore be possible without permanent insertion of genetic material. M any technological problems still remain before iPSC can be used for therapies. One of the present methods for creating iPSC involves a known oncogene that has been found to be reactivated in some murine iPSC chimeras and the other method is so new that it is unknown what risks it might have, but simply using retroviral inserts creates a risk of carcinogenesis. Other ways of introducing the same genetic material transiently, or activating the ‘stem cell programme’ through non-genetic means must therefore be developed. Both research groups that have derived human iPSC are now working on solving these technological problems

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and they will undoubtedly be joined by many others now that the fundamental breakthrough has been made. What are the Implications of these Exciting Findings? There is no doubt that these discoveries will lead to a significant re-alignment in the official funding and venture capital landscape around stem cell research. When finally developed the iPSC technique will create stem cells for therapies without the need to use human gametes, embryos or foetuses at any stage of the process, and it will produce personalized stem cell lines at much greater efficiencies than current methods for S omatic C ell N uclear T ransfer (SCNT ) (sometimes hopefully called ‘therapeutic cloning’). The efficiency of SCNT for stem cell derivation is 0.7% in Macaques, the only primate where the technique has currently been shown to work (Byrne et al. 2007), thereby requiring the use of more than 140 oocytes per stem cell line. A ny rational investor will switch away from SCNT based approaches to personalized stem cell lines towards iPSC based approaches that are more effective, based on underlying technologies that are better understood and not ethically contentious in any potential market. Ethically the implications are somewhat more difficult to discern. If you believe that embryos have no moral status or value and that hESC derivation and research is therefore justified for even the smallest of gains in scientific knowledge or therapy these findings will not change your view. On the other side of the debate those who believe that the embryo is so valuable that no hESC derivation and research is ever justified will of course welcome the findings, and may well engage in some ‘what did we say’ rhetoric, but it is not going to change their fundamental position or their approach to hESC research. The discoveries are, however, of ethical significance to anyone who believes that hESC research needs more than minimal justification in terms of its likely outcome. T here is now a very direct competitor technology for cell based therapy and it becomes relevant to ask for each specific scientific or therapeutic goal: ‘is this best pursued via hESC or iPSC approaches?’ In cases where the answer is ‘by iPSC ’ there is no reason for a regulator to allow the ethically more contentious hESC approach. In general any argument that incorporates a premise that a given ethically laudable goal, e.g. therapies for many human diseases can only be obtained if hESC research in general, or a specific kind of hESC research is allowed or funded is now substantially more suspect than before the publication of the iPSC results (for a general account of the problems with ‘hopeful arguments’ see Holm and Takala (2007)). T his has implications, inter alia for current U K debates about whether or not SCNT of human nuclei into animal oocytes to create so-called ‘cytoplasmic hybrids’ should be allowed to solve the ‘egg shortage’ problem in stem cell research (i.e. the ‘problem’ that women are not willing to undergo an invasive procedure and donate their eggs for research). T he creation of cytoplasmic hybrids is simply

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no longer necessary or urgent to achieve the stated goals in the same way it was claimed to be prior to the publication of the two iPSC papers. S ome commentators argue that: …it should be emphasized that human ES cell research is more important than ever for it will shed light on how iPS cells can best be maintained in their pluripotent state and how they can be induced to differentiate into the cell lineage of interest. (Zaehres and Schöler 2007, 835, my emphasis)

But this argument is clearly a non-sequitur. T he best way to shed light on how iPS cells can be maintained in their pluripotent state and how they can be induced to differentiate is clearly to do that research on iPS cells and not on some other cell type. It may well be the case that hESC research is still important, but it is not more important than ever, if anything it is now somewhat less important than it was before 20 N ovember 2007. References Byrne, J.A., Pedersen, D.A., Clepper, L.L., Nelson, M., Sanger, M.W.G., Gokhale, S ., W olf, D .P. and M italipov, S .M . (2007) ‘Producing primate embryonic stem cells by somatic cell nuclear transfer’, Nature, 450, 497–502. Holm, S. and Takala, T. (2007) ‘High hopes and automatic escalators: A critique of some new arguments in bioethics’, Journal of Medical Ethics, 33, 1–4. Okita, K., Ichisaka, T. and Yamanaka, S. (2007) ‘Generation of germline competent induced pluripotent stem cells’, Nature, 448, 313–317. Takahashi, K., Tanabe, K., Ohnuki, M., Narita, M., Ichisaka, T., Tomoda, K. and Yamanaka, S. (2007) ‘Induction of pluripotent stem cells from adult human fibroblasts by defined factors’, Cell, DOI :10.1016/j.cell.2007.11.019. Yu, J., Vodyanik, M.A., Smuga-Otto, K., Antosiewicz-Bourget, J., Frane, J.L., Tian, S., Nie, J., Jonsdottir, G.A., Ruotti, V., Stewart, R., Slukvin, I.I. and T homson, J.A . (2007) ‘Induced pluripotent stem cell lines derived from human somatic cells’, Science, DOI : 10.1126/science.1151526. Zaehres, H. and Schöler, H.R. ������������������������������������������������� (2007) ‘Induction of pluripotency: F rom mouse to human’, Cell, 131, 834–35. DOI 10.1016/j.cell.2007.11.020.

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Index

abortion 294, 295–7, 300 accountability 306–7, 308 adolescent doping 290–300 African, Caribbean and Pacific (ACP) countries 63 A gamben, Giorgio 176–7, 178, 182, 183 A gar, N icholas 280, 282 age of criminal responsibility 275–7 agency bioethics 168–9, 181, 183 child soldiers 263, 265, 268 A genda 2000 agreement 32, 37 ‘agent sovereignty’ 294 agriculture 3, 91–104 animal cloning 43–4, 45, 46, 48–50, 51 animal integrity 19–29 concepts of 19–21 disrespect for 25–7 F ive F reedoms 24–5 law 22–4 animal welfare 7–17, 105–13 confinement and overcrowding 11–14 European law 59 F ive F reedoms 24–5 production cost 106–7 selective breeding 8–11, 14, 26 standards 112 C ommon A gricultural Policy 31–41 economic indicators 33–7 environmental impacts 37–9 reform 32–3, 34–6, 40 developing countries 78–9 employment in36 environmental impacts 37–9 food regulation 55–6 foot and mouth disease outbreak 377–88 globalization 91–2, 95–7 Good A gricultural Practice 55, 73, 74–6, 83 history of 92–4

intensification of 7, 105, 107 law and ethical behaviour 97–8 local food production 104 organic farming 38, 39, 111 ‘post-modern’ 14–15 retailers’ role insupply chain66, 71 see also farmers; fresh fruit and vegetables AIDS 353 A llen, D .B. 292 A llen, R ob 271–8 A lston, P. 332, 335 altruism 121, 136, 137, 171, 212 A mazon.com 311 A mbrose, S t 247 A mish children 280–1 A msterdam, T reaty of (1997) 14, 22, 305 A nderson Inquiry 379, 381 androgenic anabolic steroids (AAS ) 291, 292–3, 298 A ngola 263 animal cloning 43–53 ethical concerns 46–7, 49 public perceptions of 45–6 purpose of 44–5 regulation of 47–51 A nimal H ealth A ct (1981) (U K) 377, 384 A nimal H ealth and W elfare A ct (1992) (N etherlands) 23 animal integrity 19–29 cloning 47 concepts of 19–21 disrespect for 25–7 F ive F reedoms 24–5 law 22–4 animal welfare 3, 7–17, 105–13 animal integrity, conflict with 21 cloning 46–7 confinement and overcrowding 11–14 consumer concerns 70, 71 European law 59 F ive F reedoms 24–5

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production cost 106–7 selective breeding 8–11, 14, 26 standards 107–11, 112 A nimal W elfare A ct (AWA ) (2006) 22, 24 anonymity 118 antibiotics 191, 352, 353 antisocial behaviour 264, 271, 273, 276 A pple 314–15 A ppleby, M ichael C . 105–13 A quinas, S t T homas 247, 249 A rendt, H anna 177 A ristotle 242 Árnason, V. 210 artificial insemination 27 A shcroft, R ichard E. 206n4 Association of Chief Police Officers (AC PO ) 273, 274 A tiyah, P.S . 306 A ugustine, S t 247, 251 A ustralia 12 A ustria 38–9 automatic escalator argument 122–3 autonomy age of criminal responsibility 276 bioethics 166, 168–9, 170, 174, 181, 183, 208, 210 codification of concept 207 consumer protection 308 Gillick competence 294, 297, 298 health record databases 211 individual/public interests 213 informed consent 237 medical research 206 reproductive technologies 280 A yala, B. 247 Baker, J.S. 292–3, 295 Bang, H o-S am 369–76 Banner C ommittee 23, 27 battery hens confinement and overcrowding 12–13 EU D irectives 109 Bauman, Zygmunt 176, 177, 178, 182, 183 Beah, I. 263–4 Beck, Harry 127–8, 135 Beecher, H arry 140, 144, 173, 178

beef cattle cloning 43–4 C ommon A gricultural Policy 38 selective breeding 10, 26 Beijing R ules for Juvenile Justice 275 Belmont R eport (1978) 166 beneficence 243 Benn, H ilary 384–5 Bennett, R .M . 105–6 Bentley, James 9 ‘Big M edical S cience’ 139–40 Binsinger, B. 293 biobanks 127–47 abusive potential 117–25 bioethics 170–2 confidentiality 138–9 definitions 130, 136, 144 ‘donor’ concept 136–7 donor rights 139 functions 140–5 informed consent 174, 205, 209–10 non-commodification principle 137–8 values 212 bioeconomics 179 bioethics 165–74, 183 automatic escalator argument 122–3 biopower 177–8 communitarian turn 208–11 genetic counselling 168, 183 genetic diagnosis 167–8, 179 human agency 168–9 informed consent 168, 169 liberal biopolitics 178–81, 182 liberal individualism 207–8 pluralist approach 207, 213–14 post-genomic challenge 169–74 public/private interests 205–16 radical critique 182 see also biotechnology; ethics ‘biological citizenship’ 180–1 biomedicine animal cloning 45, 46, 48–9 bioethics 166 individualized treatment 170 biopolitics 165–6, 167, 174–81, 183 F oucauldian analysis 175–6 liberal 178–81, 182 radical critique 176–8, 179, 182

Index biopower 165–6, 174–81, 182 biosociality 180–1 biotechnology animal cloning 43–53 animal integrity 27 consumer concerns 70–1 N orway 132 reproductive 279–88 stem cell research 230, 232–3, 389–91 therapeutic cloning 229–35, 390 see also bioethics; genetics bird flu 352, 353, 354 Blair, T ony 272, 273, 274 Blattman, C . 268 Blix, H ans 250 blue tongue virus (BT V) 3, 380 body 179 Borges, Jorges Luis 127 Bosniak, Linda 320 Botkin, J. 190 Bovine S pongiform Encephalopathy (BS E) 58, 70, 71, 74 Brambell C ommittee 24 Brenner, S ydney 172, 173, 182 broad consent 130, 133, 135, 141, 178, 209 Brock, D.W. 192–3 Brocklehurst, Helen 259–70 broiler chickens confinement and overcrowding 12 EU D irectives 109 production methods 26 selective breeding 8–9 Brown, Louise 231 Buchanan, A . 192–3, 199, 280, 283 Burger King 110 Burke, Edmund 103–4 Bush, George W . 247, 248–50, 253–4 Buyx, A lena M . 341–50 C allaghan R eview (2007) 379, 382 calves animal welfare standards 108 confinement and overcrowding 11 separation from mothers 10 surgical operations 25 Cambridge Water Company v Eastern Counties Leather (1994) 383n14 C amus, A . 354

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C ape T own Principles 262 capitalism ‘Elite’ 94 laissez-faire 304, 306, 315 reductionism 102 unsustainability 100 C arr, M . 335–6 case law Cambridge Water Company v Eastern Counties Leather 383n14 Cassis de Dijon case 305 Cook v Lewis 383 Evans v The United Kingdom 363–7 Hedley Byrne v Heller and Partners 386n24 Leigh and Sillavan Ltd v Aliakmon Shipping Company 386n24 Lotus case 373 Moore v Regents of the University of California 137 R (Compassion inWorld Farming Limited) v Secretary of State for Environment, Food and Rural Affairs 9 R (on the application of Quintavalle) v Secretary of State for Health 230n3 Rainham Chemical Company v Belvedere Fish Guano Company 383 Rylands v Fletcher 383 Weller & Co v Foot and Mouth Disease Research Institute 386–7 Yeun Kun Yeu v Attorney General for Hong Kong 383n16 Cassis de Dijon case (1979) 305 castration 25, 26, 27 cattle beef cloning 43–4 C ommon A gricultural Policy 38 selective breeding 10, 26 dairy cows production methods 26 rest periods 98 selective breeding 10, 14 C avalcanti, B. 79 C entre for Economic and S ocial A spects of Genomics (C ESA Gen) 220 C halabi, A hmad 251

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C hang, R . 213 chemotherapy 152 C hen, M .A . 335–6 C heney, R ichard 250, 251, 252, 254 chickens confinement and overcrowding 12 EU D irectives 109 featherless 26 production methods 26 selective breeding 8–9, 14 surgical operations 25 see also hens children 259–70 age of criminal responsibility 275–7 child carers 264–5 child soldiers 259, 260, 261–4, 265, 267, 268 definition of 262 development of self 284–5 doping 290–300 future freedom of 279–88 ‘invisible’ 266 ‘lost childhood’ 263 youth justice 271–8 C hristiansen, Vest 292 Clark, C.C. 356 climate change 103 clinical ethics committees (C EC s) 149–63 definitions of key terms 154–5, 158 duty to provide futile treatment 153–4 informing the patient 154, 160 legal considerations 149–50, 151–2, 153, 155–7, 158–9, 160–1 cloning 43–53 animal integrity 22, 27 ethical concerns 46–7, 49 human reproductive 230n5 public perceptions of 45–6 purpose of 44–5 regulation of 47–51 therapeutic 229–35, 390 C loning inPublic (C iP) 45n6, 49, 51 C obb-Vantress 8 codes of conduct food regulation 75, 83 healthcare professionals 357 labour standards 335–7, 338 cognitive enhancement 188, 193

C old W ar 248 commodification 141, 142 C ommon A gricultural Policy (CA P) 31–41 economic indicators 33–7 environmental impacts 37–9 reform 32–3, 34–6, 40 common good 173–4, 214, 347 healthcare 344, 345 human biological material 134 value conflicts 211, 213 ‘common-sense morality’ 322 communism 100, 238 communitarianism bioethics 206, 208–11, 212, 213 healthcare 344, 345 community 93, 97, 102, 103 compassion 242, 342 C ompassion inW orld F arming 9 compensation of farmers 382–7 competition 106, 308–9, 315 confidentiality biobank donors 118, 120, 136, 138, 144 genetic testing 208 individual/public interests 213 public health issues 353 confinement of farm animals 11–14 conscience 242 consent biobanks 130, 132–4, 136, 139, 142–3, 170–1, 174 bioethics 166, 168–9, 173, 178, 181, 183 broad 130, 133, 135, 141, 178, 209 C zech R epublic 237–42, 243 doping 294–300 Evans v The United Kingdom 363, 364, 365, 366, 367 Gillick competence 290, 293–4, 296, 297, 298–9, 300 individual/public interests 213–14 life-prolonging treatment 150, 153, 156, 159, 160 political role of 170 consequentialism embryo research 233 genetic equality 189–90, 194, 196n15, 199–201, 203

Index consumer interests animal cloning 50 food regulation 56, 59–60, 78, 83, 86 retailers’ role insupply chain68–9, 70–1 consumer protection 303–17 definitions 303–6 European law 305–6, 309 freedom of contract 306–8 information privacy 312–13 intellectual property rights 314–15 network effects and competition 308–9 social commerce 311–12 technical standards 310 technological innovation 308 US law 304–5, 309 contract law 304, 306–8 Convention on Homework (1996) 336 C onvention on the International R egulations for Preventing C ollisions at S ea (CO LR EGs) 372–3 C onvention on the R ights of the C hild 262, 266n6, 271, 275 Cook v Lewis (1951) 383 ‘coordinated market economy’ 308, 310 C opyright D irective for the Information S ociety (2001) 314 copyright law 314–15 C ore Labour S tandards (C LS ) 331–4, 335, 338 C orporate S ocial R esponsibility (CSR ) 73, 85, 335, 336–7 C ouncil of Europe 272, 277 C ouncil for International O rganizations for M edical S ciences (CIOMS ) 140 counselling, genetic 168, 183 C ranston, M aurice 327n20 C rawford, N .C . 248 crime 271–8 C rime and D isorder A ct (1998) 275 crisis 351–60 C ulver, C .M . 295 cytoplasmic hybrids 390–1 C zech R epublic 211, 237–44 dairy cows production methods 26 rest periods 98 selective breeding 10, 14

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D aniels, N . 192–3 data protection 178, 312–13 databases biobanks 117–25, 140 definition of 209n6 health records 210–11, 212 informed consent 209–10 D avis, D ena 280, 282, 284 Dawkins, Marian 13 D e Vries, R . 20 deafness 281, 282, 283 Declaration of Helsinki (1964) 138, 140, 208 D eleuze, G. 146 delinquency 271–2 democracy 100, 238 Denmark 49, 50–1 D epartment for the Environment, F isheries and R ural A ffairs (D efra) animal welfare 8 food regulation 58, 60 UK foot and mouth outbreak 379, 381, 382, 383, 385, 388 deregulation 56, 309, 315 detention 271 deterrence 248, 253 Developed Market Economies (DMEs) 62 developing countries agriculture 7, 93, 96, 104 FF V production 78–9 food regulation 65 genetic technology 198, 199 infectious diseases 352 diagnosis 167–8, 169–70, 179, 279 diagnostic biobanks 130, 133 D ifference Principle 189, 196n15, 197 D igital M illennium C opyright A ct (1998) 314 digital rights management (DRM ) 314, 315 dignity animals 23 bioethics 208 embryo research 233 disabled children 265–6 discrimination Evans v The United Kingdom 365–6 genetic 212 health insurance 212 WTO laws 100

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diseases behavioural risk-factors 342 biobanks 122, 123, 171 ‘biological citizenship’ 180–1 biopolitics 166 embryo research 229 genetic diagnosis 167, 169, 279 genetic selection 282 genetic technology 187, 198 germline gene transfer 279 infectious 351–7 dispositional rights 139, 144 distributive justice 192–4, 197, 199, 203, 307 DNA 137, 169 ‘do not attempt resuscitation’ (DNAR ) 150, 151, 152, 153–6, 158–9, 160 doctors see physicians D olan, C atherine 79 D olan, C hris J. 247–57 D olly the sheep 43 doping 289–302 D ’S ilva, Joyce 7–17 ‘due diligence’ 79, 80, 85 duties 321, 322–4, 326, 327–9 duty of care 22, 28–9, 383–4, 387 Dworkin, Gerald 287n10 Dworkin, R. 172–3 dying patients 150–1, 154, 155, 158 Eastern Europe 237 eBay 311 economics animal welfare 106 C ommon A gricultural Policy 33–4 ethics 105–6 education 265, 350 egalitarianism C zech R epublic 238 genetic technology 189, 190–1, 194–5, 196, 197–9, 203 healthcare incrisis situations 355 liberal 346–7 luck-egalitarianism 344, 345–6 egg production 110, 111 electronic commerce 305, 309 El-Emam, K. 118 Elias, Juanita 331–40 ‘Elite C apitalism’ 94

Embryonic S tem C ells (ESC ) 389 embryos Evans v The United Kingdom 363, 364 research 229–35, 390 emotional neutrality 242 empathy 242 employment agriculture 36 equal opportunity 194–7 feminization of 334 fresh fruit and vegetables 68 women workers 331–40 empowerment 96, 225 enhancements, genetic 187–90, 191, 193– 4, 196–7, 198, 199–200, 202–3 Enlightenment 101–2, 103 environmental issues agriculture 7 C ommon A gricultural Policy 37–9 food retailers 76–8 MSC Napoli 369 epidemiology 131, 141, 166, 170–1 equal opportunity 190, 192, 194–7, 199 equality bioethics 208 genetic 190–9, 202 as absolute requirement 190, 191–2 as desirable condition 190, 192–4 equal opportunity to jobs 190, 194–7 welfare egalitarianism 190, 197–9 liberal democracy 94 liberal egalitarianism 346 women inthe workplace 333, 338 erythropoietin(EPO ) 292 Estonia 211 ethical, legal and societal issues (ELSI ) 129, 145 Ethical C ode on the R ights of Patients (C zech R epublic) 238 Ethical R eview Boards 170 ethical trading 72 ethics 4 abused by food businesses 92, 96–7, 100–1, 103 biobanks 129, 132, 135–45 business 98 discriminatory 102–3 doping 290

Index emergence of community moral standards 93 ‘ethicalization’ of genetics 180 function of 143 legal philosophy 172–3 moral responsibility 98–100 physicians 242 public health 353 stem cell research 232, 390 youth justice 271, 272, 277 see also bioethics ethics of care 337, 338 ethics committees 130, 133, 149–63, 293n14 definitions of key terms 154–5, 158 duty to provide futile treatment 153–4 informing the patient 154, 160 legal considerations 149–50, 151–2, 153, 155–7, 158–9, 160–1 eugenics 207 Euro Retailer Produce Working Group (EUR EP) 73, 74–6, 84 European C ommission CA P reform 32, 33 cloning 45n7, 51 consumer protection 305 food regulation 57 function of ethics 143 Scientific Committee on Animal Health and W elfare 8–9 UK foot and mouth outbreak 378 European C onvention on H uman R ights (ECHR ) 231, 364, 365, 366 European C onvention on H uman R ights and Biomedicine (1999) 140, 238, 239 European C opyright D irective for the Information S ociety (2001) 314 European F ood S afety A uthority (EFSA ) 44, 48, 60 European Group on Ethics inS cience and N ew T echnologies to the European C ommission (EGE) 45n7, 51 European Internal Market (EIM) 61 European U nion (EU ) animal welfare legislation 109 battery hens 12–13 cloning regulation 47–51

399

consumer protection 305–6, 309, 315 data protection 312–13 economic union 95 food regulation 55–6, 58–9, 63–5, 78, 83 intellectual property rights 314, 315 Lisbon A genda 131 market values 308 post-communist countries 237 sow stalls 12 standards 310 support for farmers 96 T reaty of A msterdam 14 veal calves 11 euthanasia 154 Evans v The United Kingdom (2007) 363–7 Every C hild M atters 274 Evil 99–100, 103–4, 247 expectations 282, 284, 285–6 exports 62, 63, 65, 79 fair information practices 312 family family therapy 274 right to respect for family life 364–5 youth justice 272, 273, 274 family farmers 7 F arm A nimal W elfare C ouncil (FAWC ) 23–4 farmers animal integrity 28–9 animal welfare standards 107–8 C ommon A gricultural Policy 33, 36–7, 40 family 7 patent law 97 retailers’ role insupply chain66, 77, 86 support for 96 UK foot and mouth outbreak 377, 379, 382–7 see also agriculture F arrington, D avid 275 F ederal T rade C ommission (FTC ) 304, 311–12, 313 F einberg, Joel 280–1, 286n9 feminism codes of conduct 335–7 ILO C ore Labour S tandards 331, 332–4

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informed consent 210 prostitution 195n14 reproductive technologies 279 F euerbach, Ludwig 3 F ield, A .E. 291 financial capital 94n3 F ive F reedoms 24–5 flag States 370n13, 371–2, 373–4, 375 F ood and D rug A dministration (FDA ) 43, 48, 295, 304 Food Marketing Institute (FMI) 108 food regulation 55–90 animal cloning 50 consumer interests 56, 59–60, 78 developing countries 78–9 environmental performance 76–8 EUR EPGA P 74–6 Europeanization of 58–9, 63–5 FSA policy 60–1 globalization of FF V trade 62–3 hybrid model 61, 84–5 pesticides 63–5, 69, 78, 85 private interest model 60 private/public 79–83, 85–6 retailers’ role insupply chain65–73, 86 F ood S tandards A gency (FSA ) 58, 60–1, 77, 84 foot and mouth disease 3, 377–88 F ørde, R eidun 149–63 F oreign D irect Investment (FDI ) 333 F oucault, M ichel 165–6, 174–6, 179–80, 182, 183 F rance 275, 308, 315 free choice 345–6 free trade 96, 97, 104 animal welfare standards 110–11, 112 globalization 95 WTO laws 100 see also trade freedom health behaviour 348, 349 reproductive technologies 279–81, 287 freedom of contract 304, 306–8 F reidberg, S . 79 fresh fruit and vegetables (FF V) 55, 62–85 consumer involvement 78 developing countries 78–9 environmental issues 76–8

EUR EPGA P 74–6 pesticides 63–5 private/public regulation 79–83 retailers 65–73 supply chain84 F rost, N .C . 292 Fukuyama, Francis 100 futility 151, 153, 154–5, 158, 160 Gamborg, C hristian 43–53 gangmasters 68 Gastmans, C hris 243 gender codes of conduct 335–7 doping 291 ILO C ore Labour S tandards 331, 332–4 General A greement on T ariffs and T rade (GATT ) 62, 111 genetic counselling 168, 183 genetic diagnosis 167–8, 169–70, 179, 279 genetic material 117, 130, 134, 136 genetic modification (GM) animal integrity 19, 20 cloning 45–6, 51 consumer concerns 74 potential role 3 S wiss public dialogue on 23 genetic testing 168, 172, 208, 212, 217, 221 genetics access to technology 190 bioethics 208–10 ‘ethicalization’ of 180 inequality 187–204 consequentialism 199–201 equal opportunity to jobs 190, 194–7 equality as absolute requirement 190, 191–2 equality as desirable condition 190, 192–4 social tension 200, 201–2 welfare egalitarianism 190, 197–9 liberal individualism 207 moral agency 181 pharmogenetics 217–25 public view of 221, 223–4

Index reproductive technologies 279–88 values 205–6 see also biobanks; biotechnology Germany 275, 308, 342 germline gene transfer 279 Gert, B. 295 Gillick competence 290, 293–4, 296, 297, 298–9, 300 Gjerris, Mickey 43–53 Glannon, W alter 191, 192, 200 globalization 91–2, 95–7 biobanks 136, 139, 144 definition of 95–6 feminization of work 334 FF V trade 62–3 retail networks 72 God 99, 101 Good A gricultural Practice (GA P) 55, 73, 74–6, 83 good life 347 Good vs Evil 99–100, 247 government intervention 305, 306–7, 309, 315 governmentality 179, 180 greenhouse gases 7 Greydanus, D .E. 297, 298 Grotius, H ugo 247, 249, 250, 251 Grov, Jon 117–25 Grown, C . 334 Guattari, F . 146 Gunning, Jennifer 3–4 H abermas, Jürgen 242, 280 H aisma, H .J. 187n1 H ale, A . 337 H ammond, N atasha 363–7 happiness 197, 200, 203 H arris, J. 356 Hauskeller, M. 21 H äyry, M atti 119n1, 120, 121, 123 H azard A nalysis and C ritical C ontrol Points (HACC P) 76, 84 H ealth and S afety Executive (HS E) 381, 382 health data biobanks 117–25 health record databases 210–11, 212 health insurance 212

401

health issues animal cloning 47 bioethics 166 children 272 crisis situations 351–60 C zech R epublic 237–44 healthcare inequality 189 liberal utilitarianism 121 life-prolonging treatment 150–60 personal responsibility 341–50 personalized medicine 217–28 genetic diagnosis 169–70 impacts of pharmogenetics 219–20 public view of 220, 221–4, 225 regulation of healthcare 149, 150, 159–60 health records 210–11, 212 H ealth S ector D atabase (Iceland) 210 healthcare professionals 351–60 Hedley Byrne v Heller and Partners (1964) 386n24 H eegar, R . 20, 21, 27 Helsinki D eclaration (1964) 138, 140, 208 hens confinement and overcrowding 12–13 EU D irectives 109 space allowance 110 surgical operations 25 see also chickens H erceptin218 ‘hermeneutic competence’ 241, 242 HF E (R esearch Purposes) R egulations (2001) 229 H igh S eas C onvention 371 H igh-Level C onference on W orld F ood S ecurity (R ome, 2008) 3 H ippocratic O ath 138 H obbes, T homas 306 H odges, John 91–104 H olm, S øren 3–4, 122–3, 229–35, 356, 389–91 H olocaust 177, 179, 182 home-based workers 335n2, 336 Homo Sacer 176 hormone use animals 70, 71 human growth hormone 187, 291–2, 298

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human biological material 130, 134, 137, 138, 140, 141–2, 144 human Embryonic S tem C ells (hESC ) 389, 390–1 H uman F ertilization and Embryology (HF E) A ct (1990) 229, 232–3, 364, 365 H uman F ertilization and Embryology A uthority (HF EA ) 230 H uman Genome Project 117, 140, 169, 180, 211–12 human growth hormone (hGH ) 187, 291–2, 298 H uman R eproductive C loning A ct (2001) 230n5 human rights C orporate S ocial R esponsibility 335 C zech R epublic 238 Declaration of Helsinki 138 ILO C ore Labour S tandards 331, 332–4, 338 irregular migrants 319, 320, 321, 323, 325–6, 327, 328–9 see also rights H uman R ights A ct (1998) 363 H unter, D . 299 hunter-gatherers 93 H untington’s disease 180–1 Iceland 143, 210 identity theft 312–13 ideology 128, 145 Igoumenidis, M ichael 351–60 individualism 102, 103 liberal 207–8, 213 induced Pluripotent S tem C ells (iPSC ) 389, 390, 391 Industrial R evolution 303–4, 306, 308 inequality gender 338 genetic 187–204 consequentialism 199–201 equal opportunity to jobs 190, 194–7 equality as absolute requirement 190, 191–2 equality as desirable condition 190, 192–4

social tension 200, 201–2 welfare egalitarianism 190, 197–9 global 103 informal employment 334 Information R evolution 308 information technology 308–9, 310 informed consent biobanks 130, 132–4, 136, 139, 142–3, 170–1, 174 bioethics 166, 168–9, 173, 178, 181, 183, 208–11 codification of concept 207 C zech R epublic 237–42, 243 individual/public interests 213–14 life-prolonging treatment 150, 153, 156, 159, 160 political role of 170 restrictions 205 Institute of A nimal H ealth (IAH ) 377–8, 379, 381–2, 383, 386 Institute of Grocery D istribution (IGD ) 62 Integrated C rop M anagement (ICM ) 73 Integrated Pest M anagement (IPM ) 65 intellectual property rights 308, 314–15 see also patents intelligence 282 International A tomic Energy A gency 248 International C onvention on Loadlines 372–3 International C onvention for the S afety of Life A t S ea (SO LAS ) 372–3 International C onvention on S tandards of Training, Certification and Watchkeeping for Seafarers (STCW) 372–3 International F inance C orporation 110 International Institute for Environment and D evelopment (II ED ) 66 International Labour O rganization (ILO ) C ore Labour S tandards 331–4, 335, 338 international law age of criminal responsibility 275–6 child soldiers 261, 262 ILO C ore Labour S tandards 332 Iraq war 250, 251, 253 irregular migrants 321 shipping 371–3, 375, 376

Index S tate intermediaries 375n40 see also law; regulation International M aritime O rganization (IMO ) 372–3, 374 International M onetary F und (IMF ) 62 International O lympic C ommittee (IOC ) 289 International O rganization for S tandardization (ISO ) 74, 80 Internet 309, 310, 311, 313 intuitionism 322 iPods 314 Iraq war 247–57, 262 irregular migrants 319–29 IVF embryo research 231–2, 233, 235 Evans v The United Kingdom 363–7 IZIP 211 Johnson, James T urner 252 Jonas, H ans 173–4, 178 just war (jus ad bellum) 247–57 justice communitarianism 344, 345 distributive 192–4, 197, 199, 203, 307 libertarianism 343, 345 luck-egalitarianism 344, 345–6 positive moral duties 323 youth justice 271–8 Kabeer, N . 333 Kagan, S helly 327 Kanayama, G. 291 Kant, Immanuel 242 Kantian ethics 166n1, 208, 233 Karlsen, Jan R einert 127–47 Kayser, B. 299 Kenway, Ian 3–4 Kenya 337 Kindlundh, A .M .S . 298 knowledge biobanks 172 biopower 178 F oucauldian analysis 175, 183 pharmogenetics 221–4 Krizová, Eva 237–44 labelling theory 273, 276 laissez-faire capitalism 304, 306, 315

403

Lamb, D avid 21 lambs surgical operations 25 UK foot and mouth outbreak 384 Lanzerath, Dirk 242 Lassen, J. 45, 46 Last R esort 248, 253 Laure, P. 291–2, 293 law agrarian societies 97–8 animal cloning 47–51 animal integrity 22–4 biobanks 129–35, 142 biopolitical governance 176 clinical ethics committees 149–50, 151–2, 153, 155–7, 158–9, 160–1 consumer protection 50, 303–6, 309, 315 contract 304, 306–8 crisis situations 357 data protection 312–13 discriminatory 102–3 double character of 178 Good/Evil 99–100 intellectual property rights 314–15 irregular migrants 319n2 N orwegian health law 159–60 patents 97, 101, 104 UK foot and mouth outbreak 383–4, 386, 387 youth justice 271–8 see also case law; legislation; regulation Lawson, A . 353, 355 Lee, R obert G. 377–88 legal philosophy 172–3 legislation agricultural sustainability 104 A nimal H ealth A ct (U K) 377, 384 A nimal H ealth and W elfare A ct (N etherlands) 23 A nimal W elfare A ct (U K) 22, 24 animal welfare standards 109 biobanks 129–35 clinical ethics committees 149–50, 156 consumer protection 304, 305, 306, 309 C rime and D isorder A ct 275 C zech healthcare 238, 239 D igital M illennium C opyright A ct 314 European C opyright D irective 314

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food safety 82, 83 HF E (R esearch Purposes) R egulations 229 H uman F ertilization and Embryology A ct 229, 232–3, 364, 365 H uman R eproductive C loning A ct 230n5 H uman R ights A ct 363 life-prolonging treatment 150–1, 156, 159 ‘W ürde D er Kreatur’ 23, 24 legitimacy 250, 252 Leigh and Sillavan Ltd v Aliakmon Shipping Company (1986) 386n24 liberal biopolitics 178–81, 182 liberal democracy 94, 321, 325–6 liberal egalitarianism 346–7 liberal individualism 207–8, 213 ‘liberal market economy’ 308, 310 liberal utilitarianism 119, 121 libertarianism 196, 233, 327n20, 345 liberty 121 liberty rights 326n19, 327n20, 343 life, right to 234, 364 life-prolonging treatment 149, 150 local food production 104 Locke, John 137, 306 London U nderground map 127–8, 135 Lotus case (1927) 373 Lowden, J. 298 luck-egalitarianism 344, 345–6 M aastricht, T reaty of (1992) 305 Mackie, J.L. 329n23 M aine, H enry 304 M ajone, G. 81 Malmqvist, Erik 279–88 maps 127–8 maquiladoras 336–7 market failure 307 Market Price Support (MPS) 33, 34 market values 308 M arsden, T .K. 56, 57, 69, 79, 86 M arshall, A lfred 303 M arx, Karl 100 M arxism 237 M aximum R esidue Level (MR L) 63–5 M cC ullough, L.B. 356–7

M cD onalds C orporation 108 M cInerney, J.P. 106 M cIntyre, A . 243 McNamee, Mike 289–302 media 260 M edicaid 342 M ehlman, M . 190 mental integrity 26 Merial A nimal H ealth Ltd 378, 381, 383, 386 M erz, J.F . 143 M esanyová, M arie 237–44 M exico 336–7 M id-T erm R eview (MTR ) 33 migrants irregular 319–29 war-affected children 264 military recruitment 262, 265 M ill, John S tuart 294 M illar, Kate 19–29 M inistry of A griculture, F ood and F isheries (MAFF ) 58, 61 M oan, M arit H ovdal 319–29 mood enhancement 188, 196 Moore v Regents of the University of California 137 moral reasoning 320–1, 322, 324, 327 M orton, D avid 19–29 MSC Napoli 369–70, 375 multinational companies agriculture 7, 92 biotechnology 132 feminization of work 334 fresh fruit and vegetables 67 labour conditions 335–6 patents 101 music downloads 314 M yS pace 312 N ader, R alph 304–5 N ational C ouncil of C hainR estaurants (NCCR ) 108 N ational F armers U nion (NFU ) 378, 380, 385, 386 N ational H ealth S ervice (NHS ) health record databases 210 personalized medicine 222 pharmogenetics 218, 219, 224–5 natural resources 103, 131, 137

Index N azism 100, 176, 177 neoliberalism 331, 333, 335, 337, 338 see also free trade N etherlands 23 New Zealand 12 N õmper, A . 210 non-commodification principle 136, 137–8, 141, 142 ‘non-identity problem’ 281n4 N ordenfelt, Lennart 284n6 norms 267 N orth A merican Pallet, C arton, and C ase Initiative (NA PCCI ) 73 N orway animal cloning 49, 50 biobanks 129–35, 138, 142–3, 171 clinical ethics committees 149–63 food regulation 81 health law 159–60 nuclear deterrence 248 N uremberg C ode 208 oil 251 Olick, R.S. 357–8 O ’N eill, O nora 169, 209–10, 320, 324 online markets 309, 313, 315 open future, right to an 280–1, 283, 285, 286–7 O pondo, M . 337 organic farming 38, 39, 111 O rganization for Economic C ooperation and D evelopment (O ECD ) 33, 37 other-regarding need frustration 121 overcrowding of farm animals 11–14 pain cloning 46 F ive F reedoms 24 objectionable procedures 23 surgical operations 26 parents child’s future freedom 280, 281, 283, 284, 285–6, 287n10 juvenile crime 276 Parfit, Derek 200n18, 200n19, 281n4 Patel, D .R . 297, 298 patents 92, 97, 101, 104 paternalism 210, 211, 238, 276

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Pearson, R . 336 Pedersen, R eidar 149–63 perfectionism 188, 189n3 personalized medicine 217–28 genetic diagnosis 169–70 impacts of pharmogenetics 219–20 public view of 220, 221–4, 225 Persson, Ingmar 197–8, 199, 203 pesticides 63–5, 69, 78, 85 Peters, K. 264 Peterson, V.S . 334 pharmaceutical sector 51, 170, 181, 219, 222 ‘pharming’ 45 pharmogenetics (PGx) 217–25 impacts of 219–20 public view of personalized medicine 220, 221–4 physical enhancement 188 physicians crisis situations 353, 356–7, 358 C zech R epublic 238, 239–40, 241–3 doping 298–300 see also healthcare professionals Pieri, Elisa 217–28 Pierscionek, B.K. 299 piglets 25 pigs animal welfare standards 108, 109 cloning 43–4 confinement and overcrowding 11–12, 13–14 intensification of production 107 selective breeding 10–11 sow stalls 11–12 pluralism 206–7, 213–14 police 273 political issues biobank regulation 129–30 UK foot and mouth outbreak 384–5 see also biopolitics; S tate pollution 7, 38, 103 port S tates 374, 376 postmodernity 222 Post-Productivist T ransition (PPT ) 62 power 165–6, 174–8, 179–80, 183 practice 167 preemptive war 248, 249, 250, 253 preferentialism 188, 189n3

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preimplantation genetic diagnosis (PGD ) 279, 281 Pre-M odern Era 101–2 prenatal genetic diagnosis (PND ) 279 T he President’s C ommission 168, 170 preventive war 249, 252–4 prices agricultural products 7, 32, 34, 40 decline in106 fresh fruit and vegetables 67, 68 retailer private labels 70 prioritization of healthcare 341n1 privacy biobank donors 117, 118, 120, 121–2, 123, 136 bioethics 174, 178, 205, 206, 208 codification of concept 207 consumer protection 308, 312–13 Declaration of Helsinki 138 health record databases 210 individual/public interests 212, 213 private labels 70, 71–2 private life, right to respect for 364–5 private sector food regulation 59–60, 61, 79–80, 81, 82–3, 85–6 genetic technology 198 standards 310 US regulatory regime 309 procreative liberty 279–80 Producer S upport Estimate (PS E) 33–4 profiling 273 Pro-Life A lliance 230n3 property rights 134, 137, 142 proxy consent 208 Prügl, E. 336 public interest 206, 212, 213–14 C zech R epublic 239 definition of 206n4 health record databases 211 quality control 80, 85 Quintavalle, Bruno 230n3 R (Compassion inWorld Farming Limited) v Secretary of State for Environment, Food and Rural Affairs (2003) 9

R (on the application of Quintavalle) v Secretary of State for Health (2001) 230n3 rabbits 26 R abinow, Paul 178–80, 182 Radio Frequency Identification (RFID) 73 Rainham Chemical Company v Belvedere Fish Guano Company (1921) 383 R amsey, Paul 250, 252 rationing of healthcare 341n1, 342, 349 R awls, John 297, 321n6 R awlsian theory 189, 192–3, 194, 195, 199 R eagan, R onald 305 reciprocity 206, 213, 346, 347 redistribution 192–4, 196, 197, 203, 307 reductionism 102 refugees 96 R egan, T . 21 regional ethics committees (R EC s) 130, 133 see also ethics committees regulation animal cloning 47–51 biobanks 129–35, 141, 142 embryo research 230–5 food regulation 55–90 animal cloning 50 consumer interests 56, 59–60, 78 developing countries 78–9 environmental performance 76–8 EUR EPGA P 74–6 Europeanization of 58–9, 63–5 FSA policy 60–1 globalization of FF V trade 62–3 hybrid model 61, 84–5 pesticides 63–5, 69, 78, 85 private interest model 60 private/public 79–83, 85–6 retailers’ role insupply chain65–73, 86 healthcare 149, 150, 159–60 labour 331, 335–7 life-prolonging treatment 150–1, 157–8, 159 self-regulation 77, 79–80, 81, 313 shipping 371–6 trade practices 303–4

Index UK foot and mouth outbreak 382, 383, 388 see also law; legislation regulatory state model 80–1 religion 98, 99, 103, 231 reproductive technologies agriculture 45 Evans v The United Kingdom 363–7 future freedom of children 279–88 see also cloning research ‘Big M edical S cience’ 139–40 biobanks 117, 122, 123, 124, 129–45, 170–1, 205 bioethics 170, 173, 174, 205–6, 208–11 on embryos 229–35 informed consent 208–11 paediatric doping 299 pharmogenetics 218 public view of 222–3 stem cell 230, 232–3, 389–91 research ethics 132, 133, 134, 143, 146 research ethics committees see ethics committees R esolution on H uman Experimentation (1954) 208 resource allocation healthcare incrisis situations 355 personal responsibility and healthcare 341–50 respect 234 responsibility age of criminal responsibility 275–7 causal 348 genetic 173, 183 healthcare 341–50 communitarianism 344 libertarianism 343 luck-egalitarianism 344 practical problems 347–8 solidarity 346–7, 349 healthcare professionals 355–7 irregular migrants 322 moral 98–100, 103, 320, 322, 325 retailers 56, 57, 65–73, 81–3, 85–6 animal welfare standards 108 consumer involvement 78 developing countries 78–9

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environmental performance 76–8 online 309, 313, 315 sales 62 R icardo, D avid 95 rights abortion 294 A gamben on 177 animals 21 biobank donors 134, 136, 139, 144 bioethics 166, 178, 211, 213 children 276 embryos 232, 233, 234, 235 F oucauldian analysis 175, 176 genetic technology 200, 202 irregular migrants 319, 320, 326–9 liberty rights 326n19, 327n20, 343 medical research 206 patients 156 privacy 121 private sphere 338 respect for private and family life 364–5 see also human rights risk acceptable 123 animal cloning 43–4, 47, 48, 49–50 biobanks 120, 122, 123, 124, 172 children at 271–5 R iyadh Guidelines 272, 273, 275 R obinson, F . 336, 337, 338 R ollin, B. 20, 27 R ome S tatute of the International C riminal C ourt (1988) 262 R ommetveit, Kjetil 165–86 Rose, Nikolas 178–81, 182 R osen, D . 261, 267 R ousseau, Jean-Jacques 306 R oyal C ollege of Psychiatrists 277 R oyal S ociety 220 Ruddick, Sara 285n7 rule of law 94, 176 abused by food businesses 92, 96–7, 100–1, 103 originof 97–100 R umsfeld, D onald 250 rural development 32 R ussell, J. 249 R utgers, B. 20, 21, 27 Rylands v Fletcher 383

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S addam H ussein234, 248, 249–50, 252 safety, food 56, 57, 74, 80, 83 S ainsbury’s 76–7 S andøe, Peter 43–53 SARS 352, 354, 356, 357 S augy, M . 291 S candinavia 275 S chattschneider, E.E. 334 S chmid, Erwin31–41 Schöler, H.R. 391 science biopolitics 176, 177 public view of 221, 222, 223, 225 Scientific Committee on Animal H ealth and W elfare (European C ommission) (SCAHAW ) 8–9 scientific progress 140, 144, 145 Scientific Veterinary Committee (SVC) 12–13 S cotland 342, 384, 387 screening 167, 168, 169 secrecy 238 S ecretary of S tate’s R epresentative for M aritime S alvage and Intervention (SOSR EP) 369 selected traits 282–3, 286 selective breeding 8–11, 14, 26 self-defence 249, 251, 253 self-determination 139, 237–8, 241, 242, 280 self-regulation 77, 79–80, 81, 313 self-respect 194, 195, 203 S en, A martya 105 sentience 14, 22, 24 sex selection 279, 282, 284 shipping 369–76 Sidgwick, Henry 322n10 S ierra Leone 264 Simek, Jiri 237–44 S imm, Kadri 205–16 S inabell, F ranz 31–41 S inclair, U pton 304 Singer, Isaak 99 S inger, P.W . 260 S ingle European A ct (1986) 305 Skrikerud, Anne Maria 117–25 slavery 104 S mith, A dam 95, 100, 306

S mith, D avid 274 Smithfields 108 social class 196, 197, 201–2 social commerce 311–12 social exclusion 273 social harmony 191, 192, 200, 201–2 social rights 274 social services 274 social stability 191, 192, 200 socio-economic systems 94 S ocrates 172 ‘soft law’ 357 solidarity 205–6, 213, 346–7, 349 somatic cell nuclear transfer (SCNT ) 43, 229, 230, 233, 234, 235, 390 S outh A frica 264 sovereignty ‘agent sovereignty’ 294 biopolitics 175, 176–7 S oviet U nion, former 248 sow stalls 11–12 speciality food producers 108 sport doping in289–302 S pratt, B. 381 standards animal welfare 107–11, 112 consumer protection 310, 313 food regulation 79, 80, 81, 85–6 labour 335–7 S tate duty to irregular migrants 320, 321–2, 323, 326, 328–9 food regulation 57, 80–1, 82 F oucauldian analysis 175 healthcare distribution 197–8 international law 375n40 just war 250 liberal biopolitics 179 moral duties 322–3 N orway 131 see also flag States states of exception 176–7 stem cell research 230, 232–3, 389–91 steroids 291, 292–3, 298 S tevenson, H ayley 331–40 S tigler, G. 81 S trand, R oger 127–47

Index S uárez, F . 247 subjectification 180 ‘subjects of a life’ 21 subsidies 34–6, 37, 38 suffering 157, 177 animals 20, 24, 26, 27, 28, 46 avoidance of 323, 325–6 jobs 195 supermarkets 66–7, 76–7, 79, 85, 108 suppliers 67–9, 70, 71–3, 76–8, 83, 85, 86 supply chain84, 85 retailers’ role 56, 57, 65–73, 86 women horticultural workers 337 surgical operations 25–6 sustainability 86, 91, 98, 104 S utrop, M argit 205–16 S weden 12, 274, 350 S weeney, Latanya 118 S witzerland 23, 24 tail docking 13, 22, 25, 27 Takala, Tuja 119, 120, 122–3 T amburrini, C laudio 187–204 T ate, J. 335–6 taxation 307 technical standards 310 technology consumer protection 303, 308 genetic 189, 190, 198 pharmogenetics 218–19 W eb 2.0 technologies 311 see also biotechnology; information technology telos 20 terrorism 249, 253 T esco 76, 77 Thankappan, Samarthia 55–90 theory 167 therapeutic biobanks 133, 136 therapeutic cloning 229–35, 390 tort law 383 T oulmin, S tephen 145, 237 trade globalization 95 liberalization 62 local regulation 303–4 vaccinated livestock 380 see also free trade

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transgenic techniques 22, 26, 27–8, 45 transplantation medicine 136, 137–8 T reaty of A msterdam (1997) 14, 22, 305 T reaty of M aastricht (1992) 305 trust 210, 222, 241, 273 tuberculosis 352 turkeys 9 T urner, J. 334 U nfair C ommercial Practices D irective 306 U nited Egg Producers 110 U nited Kingdom (U K) age of criminal responsibility 275 animal welfare 22, 24, 108 Banner C ommittee 23 consumer concerns about food 70–1 consumer protection 304 doping 293, 296 Evans v The United Kingdom 363–7 food production 96 food regulation 55–90 animal cloning 50 consumer interests 56, 59–60, 78 developing countries 78–9 environmental performance 76–8 EUR EPGA P 74–6 Europeanization of 58–9, 63–5 FSA policy 60–1 globalization of FF V trade 62–3 hybrid model 61, 84–5 pesticides 63–5, 69, 78, 85 private interest model 60 private/public 79–83, 85–6 retailers’ role insupply chain65–73, 86 foot and mouth disease outbreak 377–88 health record databases 210, 211 military recruitment 262 pharmogenetics 217, 218, 219, 224–5 sow stalls 12 therapeutic cloning 229–35 youth justice 271–7 U nited N ations (UN ) C harter of the 249, 250, 251, 253 children inconflict 259, 262, 267 C ommittee on the R ights of the C hild 271–2, 275–6, 277

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national self-interest 95 R iyadh Guidelines 272 W orld F ood Programme 96 U nited N ations C hildren’s F und (UNIC EF ) 261, 265, 266, 268 U nited N ations C onvention of the Law of the S ea (UNC LOS ) 371–2, 373–4 U nited N ations D evelopment F und for W omen (UNIF EM ) 334 United Nations Monitoring, Verification, and Inspection C ommission (UN MO VIC ) 250 U nited S tates (US ) adolescent doping 290–1 age of criminal responsibility 275 animal cloning 43–4, 48, 51 animal welfare standards 108, 109 bioethics 166 consumer concerns about food 71 consumer protection 304–5, 306, 308–9, 315 data protection 312–13 healthcare 342 ILO C ore Labour S tandards 332 intellectual property rights 314 Iraq war 247–57 market values 308 self-centred society 102 sow stalls 12 standards 310 support for farmers 96 ‘war fighter’ concept 266 youth justice 273 universalism 323–5, 326, 328 urbanization 93–4, 98 US N ational C ommission on N ew T echnological U ses of C opyrighted Works (CONTU) 314 utilitarianism animal integrity 20 automatic escalator argument 123 biobanks 119, 121 genetic enhancements 200 healthcare incrisis situations 355 hedonistic 189n3 Sidgwick 323n10 U vin, P. 335

vaccinations animal 379–80 human 353, 354 values 225, 284 agriculture 15 animal cloning 50 communitarian 205–6, 211, 212 ‘ethicalization’ of genetics 180 individual 205, 211, 212 liberal individualism 207 market 308 pluralist approach 207, 213–14 veal 10, 11, 108 veterinary procedures 21 Viacom 311 VirginM obile 311 virtue ethics 242–3 Vitoria, F . 247 voluntarism 331, 335 Vorstenbosch, J.M .G. 20–1 W ales 293, 384, 385 W al-M art 67, 73 W alzer, M . 248, 249, 250 Wanjek, B. 292 war ‘armed conflict’ definition 267 children in259–70 Iraq war 247–57 ‘war fighter’ concept 266–7 Warnock, Mary 231–2 weapons of mass destruction (WMD ) 248, 249–50, 253, 254 W eb 2.0 technologies 311 W eber, M ax 177 welfare egalitarianism 189, 197–9 well being 196, 198, 203 Weller & Co v Foot and Mouth Disease Research Institute (1965) 386–7 W heeler, R . 293n14 W hite, B. 295 W hitworth, S . 333 Whole Foods Market 108 W iegel, G. 248 Wikipedia 311 Wikler, D. 192–3, 194, 203 W ilberforce, W illiam 104 W inn, Jane K. 303–17

Index W irtz, J. 249 women codes of conduct 335–7, 338 ILO C ore Labour S tandards 331, 332–4 reproductive technologies 279 W orld A nti D oping A ssociation (WADA ) 289, 295, 296, 300 World Bank 62 W orld C ancer R esearch F und 7 W orld F ood Programme 96 W orld H ealth O rganization (WHO ) 351, 354 W orld M edical A ssociation (WMA ) 208 W orld O rganization for A nimal H ealth (OI E) 109–10 W orld T rade O rganization (WTO ) 62, 95, 332 agriculture 92, 96, 100, 104 D oha R ound 3

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exploitation of the poor 97 vaccinated livestock 380 ‘W ürde D er Kreatur’ (S witzerland) 23, 24 W ynia, M atthew 352 Yeun Kun Yeu v Attorney General for Hong Kong (1998) 383n16 Y outh Inclusion and S upport Panels (YIS Ps) 272, 273, 274 youth justice 271–8 age of criminal responsibility 275–7 prevention 271–5 Y outh Justice Board (Y JB) 272 Y ouT ube 311 Zaehres, H. 391 Zamykalová, Lenka 237–44