Human Genes and Neoliberal Governance: A Foucauldian Critique

Human Genes and Neoliberal Governance A Foucauldian Critique

Drawing on the work of Michel Foucault, among others, Human Genes and Neoliberal Governance shows how the privileging of genetic explanations about individual risks, over environmental and socioeconomic factors, reflects both a metaphysical and a political complicity between ‘geneticisation’ and neoliberalism. The ‘new human genetics’ does not transform what it is to be human as much as shift the place we look at when we try to characterise commonalities and variations among the human species. The ‘genetic revolution’ is above all a perceptual revolution, and in the first part of this book Antoinette Rouvroy explores the social, political and economic conditions and consequences of this new ‘perceptual regime’. In the second part of this book she pursues her analysis through a consideration of the impact of ‘geneticisation’ on political support of the welfare state, and on the operation of private health and life insurance. Genetics and neoliberalism, she argues, are complicit in fostering the belief that social and economic patterns have a fixed nature beyond the reach of democratic deliberation, and that the characteristics of individuals are unusually plastic, and within the scope of individual choice and responsibility. ‘Geneticisation’, it is concluded, has come to provide a questionable and largely unacknowledged support for neoliberal governance. Antoinette Rouvroy belongs to the growing community of ‘academic nomads’. The interdisciplinary tone of her work has oriented – and has been oriented by – her fellowships at the Center for Philosophy of Law at the Université catholique de Louvain, at the European University Institute in Florence, at the Science and Technology Studies Unit of the University of York, and at the Faculty of Law at McGill University in Montreal. She is now assistant professor of Law and Language, and research fellow in Information Technology Law at the University of Namur, in Belgium.

Human Genes and Neoliberal Governance

A Foucauldian Critique

Antoinette Rouvroy

First published 2008 by Routledge-Cavendish 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN Simultaneously published in the USA and Canada by Routledge-Cavendish 270 Madison Ave, New York, NY 10016 This edition published in the Taylor & Francis e-Library, 2007. “‘“To purchase your own copy of this or any of Taylor & Francis or Routledge’s collection of thousands of eBooks please go to www.eBookstore.tandf.co.uk.” A GlassHouse book Routledge-Cavendish is an imprint of the Taylor & Francis Group, an informa business © 2008 Antoinette Rouvroy All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging-in-Publication Data A catalog record for this book has been requested ISBN 0-203-93939-5 Master e-book ISBN ISBN10: 0–415–44433–0 (hbk) ISBN13: 978–1–415–44433–0 (hbk) ISBN10: 0–203–93939–5 (ebk) ISBN13: 978–0–203–93939–0 (ebk)

Contents

Acknowledgements Table of Cases

ix xi

Introduction

1

PART 1

The production of genetic knowledge and the rise of genetics as a new perceptual regime

11

1

13

The production of genetic knowledge A. A brief history of the ‘gene’ concept 13 B. The ‘central dogma’ of molecular biology and the Human Genome Project 14 C. Changing paradigms from the central dogma to complex dynamic molecular networks 22

2

The scientific and economic strength of genetic reductionism

35

A. The ‘linguistic turn’ in biology and the revival of preformationist assumptions 37 B. The definitional privilege of simple genetic causation over complex environmental contribution 40 C. Genetic reductionism is encouraged by the patentability of genes and gene sequences 41 D. The power–knowledge nexus in the post-genomic era 47 3

Policy implications: discourses of genetic enlightenment as new disciplinary devices A. A reluctance to acknowledge the need for social, public

55

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Contents

and collective remediation of individually experienced disadvantages 55 B. Disciplining individuals through risks and behavioural epidemiology 63 C. Behavioural genetics as an ideological weapon against social policy 85 4

Genetic conceptualisations of ‘normality’ and the idea of genetic justice

95

A. Determinants of normality: the consensus human genome sequences as ‘normal genomes’ 96 B. Determinants of abnormality and disease: from symptoms to their presumed genetic roots 100 C. Towards a socio-economic definition of ‘normal species functioning’ 103 5

Beyond genetic universality and authenticity: the lure of the ‘genetic underclass’

121

A. The genomic narratives of universality 121 B. The Platonician opposition between invisible genomic authenticity and deceiving appearances 123 C. The encounter of ‘race’ and genetics 126 D. The lure of the ‘genetic underclass’ 140 PART 2

The socio-economic life of genes: genetic risks and insurance

6

151

Introduction: Putting regulation of genetic information flows in context: introduction to some differences between the United States and Europe

153

Previews of the future as background

161

A. The dismantling of collective social insurance systems 161 B. The heuristic bias towards prophylactic policy 174 7

A critical assessment of economic and actuarial perspectives on genetics and insurance

183

Contents

vii

A. Assessing the claims of contractual freedom against legal prohibitions of genetic differentiation in insurance 183 B. Assessing the fear of adverse selection and the ‘insurance dilemma’ 202 C. Assessing the potential impact of genetic differentiation in insurance on moral hazards 219 D. Assessing the proportionality of genetic inquiry in underwriting 220 8

Practical and normative arguments against ‘genetic exceptionalist’ legislation

233

A. The impracticability of genetic non-discrimination legislation 233 B. Normative deficiencies of genetic exceptionalism 240 9

The changing social role of private insurance: ‘risk’ as a new representational regime

245

A. The inconstant objectivity of insurers: a further reason to keep public, universal schemes 246 B. Actuarial judgments usurping the status of facts 249 C. Actuarial rationality equipped with a quasi-organic power over life 250 Conclusion Bibliography Index

253 261 295

Acknowledgments

This book is indebted to numerous people and institutions. First written as a doctoral dissertation, it owes much to the peaceful, inspiring and enlightening atmosphere of the European University Institute in Florence, and to the support received there especially from Wojciech Sadurski and Olivier De Schutter. Their heartening trust and faith in my work, their discreet and constant encouragements, and their comments on an earlier version of this work have been crucial in the development of my research. I am also indebted to the useful comments brought by Thomas Lemke and Francesco Francioni as members of my thesis jury. I also address my special thanks to Andrew Webster, Nik Brown and the members of the Science and Technology Studies Unit at the University of York for the six months spent in their heartening company, and for having shared with me their invaluable sociological insights. I especially acknowledge the very kind support I received from Graham Lewis. I am also thankful to Richard Gold and to the Centre for Intellectual Property Policies at McGill University in Montreal for having hosted me in the final six months of writing. My incommensurable gratitude goes to Marc who contributed to this book in a myriad of ways. Having endured and shared in my ‘academic gipsiness’, he managed to keep me alive and acceptably civilised despite the cycles of elation and despair that brought this book to life. I wish to thank him for his magnificent patience with this, for the holidays we did not take, for the weekends spent working on the computer, and for his invaluable 24/7 technical support. I am also infinitely grateful to my parents who have contributed to this work with their attention, their heartening support, and their unconditional affection. I wish to thank them for having taught me, each in their own way, among so many other things, the taste for and value of liberty. May my most grateful and affectionate thoughts wing their way to my sisters and brothers, Caroline, Julien, Emilie and Benjamin, who, from different parts of the world, have encouraged me to finish this work much earlier than I did. I wish to thank my close friends for having been patient enough to remain my close friends for so many years despite my obsession with this work. I owe

x

Acknowledgments

them much more than they imagine. In particular, I wish to thank Thomas Gunzburger, Hyo Yoon Kang, Thomas Cayet and Jérémie Barthas for some very enlightening discussions that helped me in figuring out exactly what I meant in this book, and Cécile Wouters, Laurent Michel, Souad Michel, Serge Herman, Catherine Simonetti, Sylvianne Modrie, Dominique Riffon, Scarlet Renoirte, Carole Kalenga, Elodie Gosselin, François Martens, Hélène Cordier, Virginie Restain, Thierry Peguet, Laurence Fayolle and Antoine Claes for the wonderfully happy moments spent in their company. Finally, I thank Colin Perrin for his faith in this work, and Belinda Cunnison for her very precious help in revising the manuscript. They have made the publication of this book possible.

Table of cases

Adkins v Children’s Hospital (USA, 1923) ..................................................... 187, 224 Aptheker v Secretary of State (USA, 1964) ............................................................ 146 Battlefords and District Co-operative Ltd. v Gibbs (Canada, 1996) ................. 247, 251 Beal v Doe (USA, 1977) .................................................................. 111, 119, 189, 224 Beldjoudi v France (1992) ...................................................................................... 225 Bowers v Hardwick (USA, 1988) ............................................................. 188, 189, 224 Bragdon v Abbott (USA, 1998) ....................................................... 100, 115, 238, 243 Brown v Board of Education of Topeka (USA, 1954) .............................................. 145 Buck v Bell (USA, 1927) ................................................................. 131, 132, 133, 147 Cantwell v Connecticut (1940) ............................................................................... 146 Chabner v United of Omaha Life Insurance Company (2000) .......................... 247, 251 Chevron USA, Inc. v Echazabal (2002) ......................................................... 59, 60, 87 Coxall v Goodyear Great Britain Ltd (2003) ............................................................ 88 DeShaney v Winnebago Country Department of Social Services (USA, 1989) ............................................................................................... 112, 119 Doe v Bolton (USA, 1973) ...................................................................... 111, 114, 119 Doe v Mutual of Omaha Insurance (USA, 2000) ............................................ 247, 251 Echazabal v Chevron USA Inc. (2000) ..................................................................... 87 Eisenstadt v Baird (USA, 1972) ............................................................................. 146 Gaskin v United Kingdom (1989) ........................................................................... 225 Glass v United Kingdom (2004) .............................................................................. 159 Greenberg v Miami Children’s Hospital (2003) ................................................... 45, 53 Griswold v Connecticut (1964) ................................................................ 146, 188, 224 Harris v McRae (USA, 1980) ....................................... 111, 119, 130–1, 147, 189, 224 Hatton v Sutherland (UK, 2002) ............................................................................. 88 Henderson v Wakefield Shirt Company Ltd. (1997) .................................................. 88 Katskee v Blue Cross/Blue Shield (USA, 1990) ............................................... 236, 243 Kossinski v Chrysler United Kingdom Ltd. (1973) .................................................... 88 Kramer v Union Free School District (USA, 1969) ................................................. 146 Lawrence v Texas (2003) ................................................................................ 189, 224

xii

Table of cases

Lochner v New York (1905) ............................................................................ 187, 224 McGann v H&H Music Company (USA, 1992) ..................................................... 251 Mahler v Roe (USA, 1977) ........................................... 111, 119, 130–1, 146, 189, 224 Mobley v State (USA, 1995) .................................................................................. 117 Molloy v Meier (USA, 2004) ............................................................................. 75, 91 Moore v City of East Cleveland (USA, 1997) ......................................................... 224 Moore v Regents of the University of California (1990) ...................................... 45, 53 Moses v Am Nonwovens Inc. (1996) ......................................................................... 88 Niemietz v Germany (1992) ................................................................................... 225 Norman Bloodsaw v Lawrence Berkeley Laboratory (1998) ........................ 133–5, 147 Odièvre v France (2003) ..................................................................................... 71, 91 Parker v Metropolitan Life Insurance Co. (USA, 1997) ...................................... 246–7 Pate v Threlkel (USA, 1995) .......................................................................... 73–4, 91 Planned Parenthood of South-Easter Pennsylvania v Casey (1992) .................. 131, 147 Plessy v Ferguson (USA, 1896) ...................................................................... 125, 145 Poelker v Doe (USA, 1977) ............................................................. 111, 119, 189, 224 Ragnhildur Guömundsdóttir v The State of Iceland .................................................. 78 Roe v Wade (USA, 1973) ....................... 111, 114, 119, 122, 130–3, 146, 147, 188, 224 Rose v Secretary of State for Health and the HFEA (UK, 2002) ........................ 71, 91 Rust v Sullivan (USA, 1991) ....................................................................... 130–1, 147 Safer v Estate of Pack (USA, 1996) ................................................................... 74, 91 Schroeder v Perkel (USA, 1981) ......................................................................... 75, 91 Shapiro v Thompson (USA, 1969) ......................................................................... 146 Sherbert v Verner (USA, 1963) .............................................................................. 146 Skinner v Oklahoma (1942) ........................................................................ 131–2, 147 Snyder v Com. of Massachusetts (1934) ................................................................. 224 Sutton v United Airlines (1999) ...................................................................... 240, 244 Tarasoff v Regents of the University of California (1976) .................................... 73, 91 United States v Carolene Products Co. (1938) ................................................ 187, 224 Vaughn v Ruoff (USA, 2001) .......................................................................... 133, 147 Vo v France (2004) ................................................................................................. 159 West Coast Hotel Co. v Parrish (USA, 1937) ................................................. 187, 224 Withers v Perry Chain Co. Ltd. (UK, 1961) ............................................................. 88 X and Y v Netherlands (1985) ................................................................................ 225 Young, James and Webster v United Kingdom (1981) ............................................. 224

Introduction

There are times in life, when the question of knowing if one can think differently than one thinks, and perceive differently than one sees, is absolutely necessary if one is to go on looking and reflecting at all. (Michel Foucault (1984b) What is Enlightenment?, in Paul Rabinow (ed.), The Foucault Reader, Pantheon Books.)

Jed Rubenfeld referred, at the beginning of his book on Freedom and Time: A Theory of Constitutional Self-Government (Rubenfeld, 2001), to the opening scene of Milan Kundera’s Slowness, where a man replies to his wife’s question as to why Western Europeans, usually anxious for their safety, drive so fast on highways: What could I say? Maybe this: the man hunched over his motorcycle can focus only on the present instant of his flight; he is caught in a fragment of time cut off from both the past and the future; he is wrenched from the continuity of time; he is outside time; in other words, he is in a state of ecstasy; in that state he is unaware of his age, his wife, his children, his worries, and so he has no fear, because [. . .] a person freed of the future has nothing to fear. This ecstasy, this ahistorical and non-personified present, might be what those who wish to locate objectivity and impartiality in the ahistorical moment of the social contract are looking for. The ‘genetic information society’ stands at the antipode of that blissful ignorance of the future, and indeed, socialises people through fears.

The production of genetic knowledge and the rise of genetics as a new perceptual regime The ‘genetic revolution’, it will be argued, is above all a ‘perceptual revolution’: opening new spaces of transgenerational visibility (Lemke, 2004: 555–6), it

2

Introduction

induces a new perceptual regime. Despite all that is being suggested, the new human genetics does not transform what it is to be human as much as it shifts the place we look at when trying to characterise commonalities and variations among the human species: our scrutiny shifts from ‘visible’ superficial physiognomy and anatomy, from the layer of physical appearance and expressed behaviours, and from ‘incalculable’ social, economical and environmental contexts, to the ‘invisible’ but locatable and ‘calculable’ internal, molecular milieu. The new human genetics proposes, among all alternatively available combinations, a specific configuration of visible manifestations (ascertaining what may be seen) and enunciabilities (regulating the acknowledgement of discourses of ‘truth’) articulated with specific effects of power over the individuals.1 Michel Foucault’s description of disciplinary power seems especially relevant here: Implementation of discipline supposes a system that constrains by the play of gaze; an apparatus where techniques allowing to see induce effects of power, and where, in return, coercive means make clearly visible those on which they are implemented.2 That genetic discourses of truths prevail over alternative accounts of human species development and variations is not due to the former’s superior plausibility but rather to a combination of factors Foucault would probably have called the archaeological formation, strata, or diagram we find ourselves in, consisting in the complex fabric of social, institutional and interpretative forces inextricable from the way in which individuals are shaped and informed in our current civilisation. Both the affirmation that representation precedes existence (Heidegger, 1977: 115–54) and Foucault’s hypothesis that there is a relation between the ‘ascetic technology of the self’ and ‘truth’3 seem particularly pertinent in the genetic era. The aim of the first part of this work is not to conduct an epistemological inquiry – but rather to strive for a kind of foucauldian archaeology4 identifying the conditions for the emergence of a given enunciation of ‘truth’ and visibilities. The project is thus largely inspired by the Foucauldian posture: My problem . . . is this: . . . what type of power is susceptible of producing discourses of truth that in a society such as ours are endowed with such potent effects? What I mean is this: in a society such as ours . . . there are manifold relations of power which permeate, characterize and constitute the social body, and these relations of power cannot themselves be established, consolidated, nor implemented without the production, accumulation, circulation and functioning of a discourse . . . We are subject to the production of truth through power and we cannot exercise power except through the production of truth. (Foucault, 1980: 93)5

Introduction

3

According to Foucault, scientific discourses are historical practices that have their own effect of ‘veridiction’, that is, their own ways of saying what is known to be true.6 Reviewing the mechanisms of production of genetic knowledge will allow us to remind ourselves of the forgotten metaphorical nature of notions of ‘gene’, ‘genetic programme’, ‘genetic blueprint’, ‘genetic code’, and other tropes mostly drawn from the linguistic model that genetic scientists use to construct the object of their science. Also inspired by the mandate that Deleuze reads as ensuing from Foucault’s archaeology, this work may be conceived as an endeavour to contribute, to a modest extent, to something of the kind that Deleuze calls ‘a general theory of productions’.7 Reliance on metaphors is simultaneously unavoidable and potentially problematic in genetics. It becomes problematic because of its propensity to develop into a form of ideological reductionism each time it leaves the strict context of the laboratory. Outside the laboratory, the ‘natural’ desire of science to efface its textual status, and to present itself not merely as a ‘representation’ of reality but as reality itself, transfigures the genetic tropes of ‘genes’, ‘genetic programme’ and ‘genetic codes’ into pre-discursive, empirical realities (Pugliese, 1999). The suggestion resulting from the exploration of the modes of production of genetic knowledge is that the representations of what we call our genes – those newly ‘visible’ elements of our ‘inner nature’ to which we contemporarily tend to assign privileged explanatory and predictive power – are, at least partly, linguistic fictions. The failure to acknowledge this epistemologically hybrid nature of genetic knowledge has encouraged – and has itself been encouraged by – the fascination generated by the genetic innovation in scientific, economic, cultural and political areas. In consequence, despite the important impact that the ‘geneticisation’ of society would have for our theory and practice of justice, the increasing ascendancy of genetic explanations in medical and social discourses goes almost unnoticed and unchallenged in conventional law and bioethics, where genetic truth discourses are often taken at face value. An ambition of this work is both to disrupt legal and bioethical orthodoxies in this regard, and to offer new perspectives for further research on law–science relationships and interactions. At the fundamental level of philosophical anthropology, the genetic representational regime disrupts the liberal representations of the modernist sovereign subject. Legal protections of the individual legal subject are contradicted by the unavoidably collective nature of genetic information. The subject of genetic information and of genetic privacy, the patient entitled to genetic confidentiality, is not even easily recognisable in the genetic context: isn’t the subject of genetic information the whole ‘genetic group’ or genetically-related family? When genetic information about a deceased person is being kept in a biobank, what kind of rights does her progeny retain on those data? How should the rules governing intra-familial disclosure of

4

Introduction

genetic information be drafted? The identity of the subject, in the genetic era, is colonised by otherness. One irony that this research hopes to make visible is that discourses of individual freedom, individual choice, genetic literacy and individual responsibility, dominant in ‘conventional’ discussions of the ethical, legal and social issues arising from the new human genetics, are grounded precisely on the liberal model and according to the modernist morality of the autonomous and sovereign self that both the phenomenon of ‘geneticisation’ and the use of ‘genetic risk’ as a new mode of governing and disciplining lives are radically undermining.

The socio-economic life of genes: genetic risks and insurance The aim of the second part of the book is to assess how debates about the use of genetic information in socio-economic contexts such as health and life insurance have so far been framed in the genetic representational regime described in the previous part, and to find a way out of the seemingly unavoidable dilemma between ethics and economics inherent in those debates. Notwithstanding their passionate nature, the debates are always framed in advance for a context that is prophesied but not yet present. A common understanding is that the surfacing of sophisticated genetic testing and screening abilities allowing a refined ‘individualisation of risks’ at a time when public-sector reform is endemic in Western countries, with agendas of privatisation, decentralisation and shifts in the principles of public involvement and participation, and the concurrent redistribution of responsibility from state healthcare systems towards private providers and individuals (Bunton and Petersen, 2005) is the background that makes issues of genetic privacy and genetic non-discrimination pressing. The impression of being on the threshold of a new era where people’s destinies may be forecast by their genes has engendered concerns about the implications of the availability of predictive genetic information for the formation and the operation of both the social contract grounding the welfare state and private contracts of health, long-term care and life insurance. Debates about the necessity or viability of legislation restricting insurers’ access and about the use of genetic information for the purpose of underwriting, are framed as much by those who favour regulation as by those who oppose it, in a ‘prophylactic’ mode: they are conducted in view of a future characterised by both the generalisation of genetic insights in the general public,8 and an increasing reliance on private schemes governed by the principle of mutuality (rather than on public schemes insuring universal coverage), to provide basic insurance previously granted through public, single-payer, universal insurance schemes. As a consequence, narratives of genetics and neoliberalism converge in making our post-genomic future visible and capable

Introduction

5

of advance description in the form of mythological promises of the genetic transparency of individual health risks, behaviours and identities and through a rhetorical insistence on the liberating virtues of the market. In this ‘prophylactic’ representational regime, the most crucial issues involved by the surfacing of predictive genetic information in socio-economic contexts are whether genetic information could condition access to and pricing in healthcare, long-term care and life insurance and impact upon employment opportunities, and whether prospective policyholders and job applicants with ‘good genes’ could reap benefits from a competitive advantage on the insurance and employment markets. The puzzle, in other words, is whether genetic ‘coded future diaries’ of people might come to count as much or more than preexisting conditions and past achievements. Disclosure and use of predictive genetic information outside the strict clinical and health research contexts would result, it is often warned, in the constitution of a ‘genetic underclass’ of uninsurable and unemployable asymptomatic but ‘at risk’ individuals. Whereas the general public fears that genetic differences will be misused by public and private institutions as a basis for withholding certain privileges or benefits or granting such benefits only on less favourable terms than would otherwise be imposed, private institutions are concerned about the allocative inefficiencies and potential business disruptions they would have to endure should they be denied access to predictive genetic information. The first impulsive legislative reactions to threats to fundamental human rights arising from ‘misuse’ of genetic information outside the healthcare context have thus consisted in enacting specific international, regional and national restrictions on the disclosure and use of genetic information in healthcare, and life and long-term care insurance. These restrictions of genetic insights are strongly opposed by the private insurance sector though, insisting that such a prohibition on genetic information will throw insurance companies into a dead spiral of adverse selection and result in the industry’s bankruptcy with devastating consequences for society, especially as society increasingly relies on the private insurance sector for the provision of basic health insurance. The dilemma as it is presented to Western legislators is harsh: forbidding genetic insights for underwriting purposes protects genetic privacy and equality of opportunities, but also threatens the competitiveness and profitability of insurance companies at a time where they have become a public necessity. After assessing the arguments for and against legal restrictions on the disclosure and use of predictive genetic information in the context of private insurance, I realised that, given the new ‘role’ assumed by private insurance in the provision of privatised welfare benefits, a reconciliation was not easily achievable between the deontological rationality of individual welfare and human rights and the consequentialist neoliberal market rationality insisting on the virtues of the genetic transparency of individuals as a means to preserve efficiency.

6

Introduction

The aim should now be to map a way out of the confrontation. The suggested path appeared to be uncommon but not impracticable. The new inquiry paradigm suggested by the first part of this study should lead one to think of the social/economic/technical/political structure of society and biotechnological innovation as related to each other, as parts of the same metabolism, interacting in a dialectical manner, each being performative for the others. The intuition that guided my research has been that genetic knowledge, or ‘genetic truth discourses’, and the currently experienced shifts in the modes of governance, are in a relationship of co-production. Exploring the linkage between our feeling (fed by the scientific and social genetic reductionist drifts) that we are being propelled into a ‘genetic era’ and the changing paradigm of governance experienced in the latter part of the twentieth century, I thought, might provide the way out I was looking for. Most scholars discussing those questions of genes and insurance frame these issues as resulting from the confluence of two seemingly independent developments that have emerged in the 1990s in apparently unconnected domains: the genetic revolution arising in the scientific sphere on one hand, and the crisis and dismantling of welfare states, perceived essentially as an unavoidable political, economic and social mutation on the other hand. Among those who usefully contextualise the issues of genetic privacy and genetic non-discrimination, few9 have wondered whether these two seemingly independent developments – the genetic revolution and the ‘crisis’ of welfare states – could have something more in common than their chronological coincidence. One purpose of this book is, precisely, to give evidence that the simultaneous occurrence of the ‘new genetics’ and the dismantling of welfare state (including the shifts in modes of governance that such a dismantling entails) are in a relationship of co-production. Indeed, no way out of the labyrinthine ethical, legal and economic challenges arising from the surfacing of genetics in socioeconomic contexts will be found unless the common roots of the dismantling of welfare state on the one hand, and the increasing use of individual personal information as privileged or exclusive predictors of risks and behaviours on the other, are critically assessed. Analysing the complex systemic relationships existing between the current fabric of our political economy and the commodification of genetic knowledge and information10 is an unavoidable first step in addressing the dilemma between ethics and economics. The hypothesis I wish to provide evidence for is that the current success of the genetic reductionist thesis is drawn from the institutional shifts accompanying neoliberalism and the ensuing social need to base individual identity and differences on biology. The compulsive interest for the genetic perspective locating the main source of health risks in the genome of individuals indeed reflects the move western societies are currently experiencing from the model of the universal insurance society or welfare state to the actuarial postKeynesian society.

Introduction

7

Two significant attributes of the actuarial society are (1) a decrease in individual privacy and (2) an increase in discourses concerning personal responsibility and personal accountability for bad luck. Privacy interests, in the actuarial society, are trumped by the needs of governments and businesses to use a wide range of personal information about individuals in order to minimise transaction costs and other inefficiencies born by informational asymmetries. Personal information about individuals are perceived as the most precious input for the planning and management of governmental and business activities, under the assumption that private information necessarily allows accurate predictions of risks and behaviours and a significant reduction of the costs associated with uncertainty. As selectivity replaces universality as a principle for the distribution of welfare benefits, discourses concerning personal empowerment, activation and responsibility induce individuals to assume personal responsibility for most adverse circumstances resulting from ‘brute bad luck’, for which they would have expected some compensation from the collectivity in a traditional welfare state. In this way, genetic risk becomes a privileged disciplinary tool of post-Keynesian governance: it functions as a ‘technology of the self’, urging individuals to get the most information they can about their genetic status, to act ‘rationally and responsively’ after having been so informed, and to take responsibility for the genetic health of their blood relatives. Whereas the insurance society typical of the welfare state had shifted the focus from the subjective notion of behaviour and individual responsibility to the objective notion of risk as probabilities, and had replaced moral assessment of individual behaviours by amoral statistics, in the rising post-Keynesian society, the notion of risk loses its moral neutrality and, paradoxically, its statistical validity, when ‘The acceptance of solidarity is . . . accompanied by a demand for control over personal behaviour.’ (Rosanvallon, 1995) The current support for ‘active social policy’ epitomises this ‘moralizing’ tendency, as it explicitly ‘stresses the importance of shifting the focus of social programmes from insuring individuals against a few, well-fedined contingencies towards investing in their capabilities and making use of them to the best of their potential at every stage of the life course’. (OECD, 2005) Relying on questionable behavioural epidemiological discourses, governance through the concept of risk dissuades individuals from making claims on collective public or private pools and rather focuses on what they might change in their lifestyle, diet, professional activity and leisure so as to minimise their risks. Governing through genetic risks absolves economic, social and political institutions from their responsibility in engendering diseases and disabilities. As it may already be apparent to the reader at this stage, this work has taken the shape of a very strange round trip where multiple departures and arrivals have become indistinct: the concern was as much about the identification of those features of our present representations of the social contract

8

Introduction

that have made genetic truth claims possible as it was about the impact that the new genetic knowledge – and knowledge of genetic interpersonal differences particularly – could, in turn, have on our representations of the social contract. The ambition of the book born from this long inquiry into the coproduction of human genetic science and neoliberal polity is not to provide final answers to the complex questions implied by the ‘new genetics’ and by the ‘crisis of welfare states’, but merely to offer a fresh perspective, hopefully liberated from some of the most pervasive, and least justified, presuppositions.

Notes 1 This is hardly a new phenomenon. See Gilroy (1998): ‘The modern idea of race operated within the strictest of the perceptual limits. The shift from natural history to biology prompted changes in the modes and meanings of the visual and the visible. When it appeared to make sense of life and nature biology promoted specific modes of communication and representation that, on the basis of particular technologies, both created and marked out a novel relationship between text and image. Life, fractured along raciological lines, was visualized, imaged in novel and striking ways.’ 2 My translation from (Foucault, 1975: 193): ‘L’exercice de la discipline suppose un dispositif qui contraigne par le jeu du regard; un appareil où les techniques qui permettent de voir induisent les effets de pouvoir, et où, en retour, les moyens de coercition rendent clairement visibles ceux sur qui ils s’appliquent.’ 3 See Foucault (1981: 1,032): ‘Le fil directeur qui semble le plus utile pour cette enquête est constitué par ce qu’on pourrait appeler les “techniques de soi”, c’està-dire les procédures, . . . qui sont proposées ou prescrites aux individus pour fixer leur identité, la maintenir ou la transformer en fonction d’un certain nombre de fins, et celà grâce à des rapports de maîtrise de soi sur soi ou de connaissance de soi par soi. En somme, il s’agit de replacer l’impératif du “se connaître soimême”, qui nous parait si caractéristique de notre civilisation, dans l’interrogation plus vaste qui lui sert de contexte plus ou moins explicite: que faire de soi-même? Quel travail opérer sur soi?’ See also Foucault (1988b). 4 ‘Par archéologie, je voudrais désigner non pas exactement une discipline, mais un domaine de recherche, qui serait le suivant. Dans une société, les connaissances, les idées philosophiques, les opinions de tous les jours, mais aussi les institutions, les pratiques commerciales et policières, les moeurs, tout renvoie à un certain savoir implicite propre à la société. Ce savoir est profondément différent des connaissances que l’on peut trouver dans les livres scientifiques, les théories philoosphiques, les justifications religieuses, mais c’est lui qui rend possible à un moment donné, l’apparition d’une théorie, d’une opinion, d’une pratique . . . Ce style de recherche a pour moi l’intérêt suivant: il permet d’éviter tout problème d’antériorité de la théorie par rapport à la pratique, et inversément. Je traite en fait sur le même plan, et selon leurs isomorphismes, les pratiques, les institutions et les théories, et je cherche le savoir commun qui les a rendues possibles, la couche du savoir constituant et historique’ (Foucault, 1966). 5 See also the description of Michel Foucault’s archaeological project by Frédéric Gros: ‘Il s’agit de penser pour l’ensemble des énoncés d’une époque ce qui les rend possibles tous dans leur coherence. Il faut recehrcher en dessous, en deçà de ce qui

Introduction

6 7 8

9 10

9

est dit et vu à une époque, les systèmes contraignants qui rendent ces choses là, et pas d’autres, visibles et énonçables’ (Gros, 2004). Foucault (1991). ‘Et la conclusion de l’“archéologie”, quelle est-elle sinon un appel à une théorie générale des productions qui doit se confondre avec une pratique révolutionnaire . . .’ (Deleuze, 2004: 22). The important financial support provided by the European Commission to research consortiums such as the Public Health Genomics European Network (PHGEN) preparing all relevant actors for the future integration of genomic insights in general public health policy amplifies the general level of expectation that indeed genetic information will become central in managing individual and public health. Roxanne Mykitiuk is among the few scholars who have been concerned with identifying the common roots of the ‘genetic revolution’ and the progression of ‘neoliberalism’. See Mykitiuk (2000). Whereas genetic knowledge is produced in view of being ‘sold’, genetic information is ‘consumed’, in turn, in view of ‘producing’ some other kinds of benefits: genetic information is increasingly conceived as a new intermediate good. Its exchange value is defined by the markets for public goods, such as insurance and employment, which also institute specific representational regimes. See Lyotard (1979: 14–5): ‘Ce rapport des fournisseurs et des usagers de la connaissance avec celle-ci tend et tendra à revetir la forme que les producteurs et les consommateurs de marchandises ont avec ces dernières, c’est-à-dire la forme valeur. Le savoir est et sera produit pour être vendu, et il est et sera consommé pour être valorisé dans une nouvelle production: dans les deux cas, pour être échangé. Il cesse d’être lui-même sa propre fin, il perd sa “valeur d’usage”’.

Part 1

The production of genetic knowledge and the rise of genetics as a new perceptual regime

In the most general sense of progressive thought, the Enlightenment has always aimed at liberating men from fear and establishing their sovereignty. Yet the fully enlightened earth radiates disaster triumphant. The program of the Enlightenment was the disenchantment of the world; the dissolution of myths and the substitution of knowledge for fancy . . . What men want to learn from nature is how to use it in order to wholly dominate it and other men. That is the only aim. Ruthlessly, in despite of itself, the Enlightenment has extinguished any trace of its own self-consciousness. The only kind of thinking that is sufficiently hard to shatter myths is ultimately self-destructive. Power and knowledge are synonymous. (Max Horkheimer and Theodor W Adorno (1947) Dialectic of Enlightenment: Philosophical Fragments (Cultural Memory in the Present) (1944–1947), Stanford University Press) The problem in law/science relations is the idealisation of science, by which I mean the acceptance in law of science’s own self-image. Once accepted, once the cultural, institutional, and rhetorical aspects of science are defined as marginal, then the scope of inquiry is narrowed. If, on the other hand, science is defined as a discourse, as a symbolic system or activity, then the idealised discourse of science becomes the surface, the conscious phenomenon, available for analysis of what is below or behind, or what went before. (David S Caudill (2003b), Lacan and the discourse of science in law, Cardozo Law Review, vol 24, n 6, p 2,331)

Chapter 1

The production of genetic knowledge

A. A brief history of the ‘gene’ concept The history of the concept of the gene (Rheinberger et al, 2000) tells us that the gene was a theoretical concept before being conceived as an object or thing: the idea of the gene had appeared long before what would later be conceived of as its material support, the double-helical structure of DNA, had been discovered. After the work of Gregor Mendel on heredity (1863) had been rediscovered by Hugo de Vries, Carl Correns and Erich von Tschermak in the early years of the twentieth century, Wilhelm Johannson was the first to use the term gene in 1909, to name a holistically designed hereditary potential that was somehow secreted by the whole organism. In his view, genes were not to be considered as having a material nature, they were not to be considered as pieces of morphology, contrary to the suggestions made following the rediscovery of Gregor Mendel’s experimental work that there was something ‘particulate’ that was transmitted between generations. The gene, as Wilhelm Johannsen described it, ‘must be used as a kind of calculation unit. One does not have the right to define the gene as morphological unity in the sense of the Darwinian gemmules or of the biophores, or of other determinants or of other speculative morphological conceptions of that kind’ (Johannsen, 1909). Johannsen also insisted on the distinction between the phenotype (the observable characteristics of the organism1) and the genotype (containing the hereditary instructions). In his view, the phenotype and genotype, visible parts of the organism and hereditary instructions, were complementary realities interacting in the constitution of the living being, with no hierarchy of explanatory power (Barbieri, 2002). The identification of chromosomes as the cellular support of genetic information by Morgan, in 1913, revived the suggestion that genes were somehow material. Yet, the reification of the concept of gene did not reach its apogee until genes became defined as sequences of nucleotides localisable on chromosomes and the double-helical structure of the DNA molecule was discovered by James Watson and Francis Crick in 1952.2 Much of their findings were based on the work of others, and in particular, on the X-ray diffraction photographs produced by Rosalind Franklin

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Genetic knowledge and the rise of genetics as a new perceptual regime

in 1951 at King’s College, London, which Watson and Crick acquired without Rosalind Franklin’s consent.3 Her X-ray photographs of DNA and her unpublished personal research notes were disclosed, without her knowledge and consent, by her colleague Maurice Wilkins to James Watson.4 Rosalind Franklin’s X-ray diffraction photographs were the first to show the essential structure of DNA: its double-helix shape which also indicated its method of replication. Although Franklin was the first to elucidate the basic helical structure of the DNA molecule, she never received due credit for her fundamental role.5 Watson immediately recognised, in Franklin’s photographs, the shape of a double helix and rushed to publish the discovery. Rosalind Franklin died from cancer in 1959, at the age of 39. In 1962, James Watson, Francis Crick and Maurice Wilkins received the Nobel Prize. One would have expected those men to acknowledge their debt and express their gratitude to Rosalind Franklin, instead of which James Watson, ten years after Franklin’s death, erased Franklin’s fundamental contribution and caricatured her in terms that merely attest to his own sexist prejudices.6 Rosalind Franklin was not there any more to defend herself but has become, since that publication, an icon of the crusade against sexism in science.

B. The ‘central dogma’ of molecular biology and the Human Genome Project The central dogma of molecular biology As the new celebrity of molecular biology, Francis Crick restated and published the ‘central dogma of molecular biology’ (Crick, 1970) which he had enunciated in 1958 (Crick, 1958) and which has remained unquestioned for the past half century and more. The dogma is that each gene in the DNA molecule is transcribed as intermediary molecules of RNA, which are in turn translated into the amino acid sequences that make up proteins. In other words, the central dogma holds that genetic information hard-wired into DNA is transcribed into messenger RNA (mRNA) and that each mRNA thus contains the programme for the synthesis of a particular protein (or small number of proteins), which, acting as an enzyme, controls one chemical reaction in the cell. The process of protein synthesis is thus conceived as a unidirectional information flow (DNA ⇒ RNA ⇒ Proteins ⇒ Cells). DNA, according to the dogma, contains the complete genetic information that defines the structure and function of an organism. This central dogma has been the motivation for a reductionist approach to genome research methodology: one implicit assumption of the dogma is embodied in the credo ‘one gene codes for one protein’. Because humans are known to make some 90,000 different types of proteins, it was inferred that we should have, as humans, at least as many genes to encode them. The usual representation, before

The production of genetic knowledge

15

completion of the Human Genome Project, was that ‘Our bodies contain billions of cells. In each of those cells is a nucleus that contains all the information required to make a complete human being. The information exists in the form of 50,000 to 100,000 structures called genes. Each gene possesses the ability to encode one protein . . .’ (Richards and Hawley, 2004). The Human Genome Project More than a decade ago, Murphy and Lappé cautioned that: The genome project is ‘big science’ and even bigger consequences are expected from it, but insofar as the project represents a coordinated plan of study, the potential exists for its functioning as a scientific and moral ideology because it is committed to a single way of representing genetic information and carrying with it the seeds of its own moral authority. The genome project therefore, has the potential of functioning as an ideology with all the undesirable effects of ideology in conforming people and their expectations. (Murphy and Lappé, 1994) One has to acknowledge that the Human Genome Project has been the most commercially-driven extensive scientific endeavour in history.7 The belief, born with the identification of DNA as the genetic material, that genes were the central determinants of biological function, acted as a rallying motive for coordinated efforts to determine the entire human genetic sequence.8 The Human Genome Project (HGP), a powerful partnership between governments, universities, researchers and private industry (Carraro et al., 2001), involving laboratories in the United States, the United Kingdom, Japan, Germany, France, Italy, Russia and China, coordinated by the American Department of Energy (DOE) and the American National Institutes of Health (NIH), and fuelled by billion of dollars9 of research funds from the United States Congress, by other countries’ public money and by venture capital from biotechnology companies around the world,10 was officially initiated in 1990. The HGP’s aim was not to answer any specific questions about specific genes, but merely to map and sequence the human genome, that is, to produce a list of the genes used by the human organism. Mapping the human genome has consisted in identifying the location of genes on the chromosomes. The map of the human genome,11 showing the location of thousands of identifiable areas of deoxyribonucleic acid (DNA), was only the initial stage in the exploration of the human genome. The following stage was the sequencing of the human genome. Sequencing a chromosome or one of its constituent parts, a gene, consists in determining the order of its nucleotide bases, that is, listing the order in which the four nucleotide bases – Adenine, Cytosine, Guanine, Thymine – are arranged on each gene. A, C, G and T are thus the

16

Genetic knowledge and the rise of genetics as a new perceptual regime

building blocks of DNA and, according to the classical presentation of it, encode the genetic instructions of all living things. Locating and identifying these genes were the ambitious aims of the Human Genome Project. Knowledge of the location and structure of genes (the map and sequences of the human genome), it was anticipated, would have the potential to accelerate the rate at which scientists would identify what genes code for which function, when genetic variations among individuals result in the expression of a disorder or impact upon the possibility of an adverse reaction to certain drugs, and, ultimately, how to use that information to predict, diagnose, prevent, and cure so-called genetic diseases. Several spectacular announcements, thoroughly orchestrated by the media, successively reported the completion of the human genome’s sequence in June 2000, February 2001, April 2003 and October 2004 (Wade, 2003). On 26 June 2000, after ten years of public and private investment, the Human Genome Project Consortium (HUGO), along with private industry (the Celera corporation), proclaimed, jointly with President Bill Clinton and Prime Minister Tony Blair, the achievement of sequencing of 90 per cent of the gene-containing part of the genome.12 Yet, only 28 per cent of that 90 per cent sequence had reached a finished form, and it contained about 150,000 gaps. According to the agreement announced on 26 June 2000, the Human Genome Project Consortium and Celera published their respective working drafts of the human genome sequence on the second week of February 2001, simultaneously in the two journals, Science (Venter, 2001) and Nature (International Human Genome Sequencing Consortium, 2001), the first publicising the efforts of Craig Venter and the private-sector entrepreneurs of Celera Genomics, and the second, the publicly funded collaboration led by Francis Collins of the National Human Genome Research Institutes. Yet the drafts were still far from complete: they were both missing some 10 per cent of the so-called euchromatin – the portion of the genome representing the major genes – and some 30 per cent of the genome as a whole (which includes the gene-poor regions of heterochromatin). The final sequence, containing 99 per cent of the gene-containing sequence and fewer than 400 defined gaps, was published in April 2003, marking the fiftieth anniversary of Watson and Crick’s publication of the double-helical structure of DNA. Notwithstanding the declaration made that day by Francis S Collins, leader of the Human Genome Project since 1993, that all of the project’s goals had been successfully completed (well in advance of the original deadline and at a cost substantially lower than the original estimates) the subsequent announcement, in October 2004 (International Human Genome Sequencing Consortium, 2004), of a new final sequence of the human genome, questions the sincerity and earnestness of the announcements through which scientists communicate with the public. Obviously directed at securing funding and public support, attracting the attention of the scientific community and awakening a general interest in genetic medicine among the public, these

The production of genetic knowledge

17

premature celebrations have successfully diverted public attention from the fact that, since the first publication of the drafts, the finishing procedure undertaken by the International Human Genome Sequencing Consortium Centers roughly doubled the total duration, and also increased the cost of the project. The hype surrounding the Human Genome Project has contributed to building a cultural drift both favourable to genomic research and anticipating that its applications will radically transform human life. Transcribing their genuine enthusiasm in lofty metaphors, the human genome pioneers emphasised the importance of the Human Genome Project as an enterprise that would allow humanity to understand the secrets of life, the blueprint containing the information that makes us humans or our DNA instruction book.13 Scientists,14 popularisers of biological science15 and politicians alike indulged in contributing to the metaphor inflation to such an extent that the metaphorical nature of their narratives was soon overlooked. Grandiloquent celebrations have accompanied human genetic research from the beginning. In 2001, Bill Clinton even declared that: Today’s announcement represents more than just an epic-making triumph of science and reason. After all, when Galileo discovered he could use the tools of mathematics and mechanics to understand the motion of celestial bodies, he felt, in the words of one eminent researcher, that he had learned the language in which God created the universe. Today, we are learning the language in which God created life. We are gaining ever more awe for the complexity, the beauty, the wonder of God’s most divine and sacred gift.16 In 2004, European Research Commissionner Philippe Busquin held that ‘For the first time in history, humanity holds the “book of life” in its hands.’17 The widespread expectation sustaining both the huge private and public investments in human genetic research, and public anxieties concerning this same research, is that the genetic revolution will bring individualised medical prevention and treatment through genetic and pharmacogenetic testing, genetic therapy for a wide variety of disorders, pre-implantation and pre-natal genetic selection and germline therapy to eliminate the possibility of children being born with genetic pathology or unexpressed or recessive ‘genetic errors’, and a comprehensive understanding of individual physical, cognitive, and behavioural traits – an understanding that could impact on individual prospects in the socio-economic spheres of insurance and employment, on administrative or judicial decisions in familial matters such as child custody or adoption, etc., should genetic profiling become routine for strictly non-medical purposes.18 Faith in genetics has proved extraordinarily resilient in the face of the modest impact of human genetics in people’s daily lives and the unkept

18

Genetic knowledge and the rise of genetics as a new perceptual regime

promises of therapies for severe detectable genetic conditions and the delay of substantial results in pharmacogenomics.19 The cycle of expectations and disillusionment in genetic science has been usefully documented by sociologists and philosophers of science.20 Thacker, in this regard, rightfully observes that: The genome announcement can be understood as being indicative of a deep-rooted crisis in biotechnology and biomedicine: At a moment when biotechnology, at one of its high-points hegemonically and economically, is thriving totally on the basis of futuristic scenarios, the sequencing of the human genome provides the reassurance of something done, something completed, as if to serve as an alibi for all of the hype generated, and funds invested. In other words, we have long seen how biotechnology and biomedicine have been able to survive with a combination of futuristic promises and a lack of substantial, concrete results (gene therapy is a prime example here). (Thacker, 2000) The framing of ethical, legal and social issues: the governance of genetic research A significant feature of the Human Genome Project was the way it managed to itself frame the ethical, legal and social issues that it could potentially involve. The Human Genome Organisation (HUGO) has recognised to some extent that the approaches and information it generates may produce or exacerbate important ethical, legal and social issues. It therefore appropriated approximately 3 per cent of the overall budget of the Human Genome Project (the NIH would later raise that sum to 5 per cent) to study, and potentially make policy recommendations, concerning the ethical, legal and social implications raised by human genome research. The inclusion of the ELSI (Ethical, Legal and Social Issues) programme to the Human Genome Project, and its enormous size, have been welcomed as ‘a truly unique innovation in modern science’ (Billings, 1992). According to George Annas: The uniqueness of the Human Genome Initiative is not its quest for knowledge. The history of science is filled with little else. What is unique is an understanding at the outset that serious social policy and ethical issues are raised by the research, and that steps ought to be taken now to try to assure that the benefits of the project are maximised and the potential dark side is minimised.21 The unique science policy experiment has been widely criticised, however, especially for lacking the independence necessary to make truly critical assessments of the ethical legal and social issues at stake in the Human Genome

The production of genetic knowledge

19

Project. Lori Andrews (Andrews, 2000), as former chair of the ELSI working group, reported that: The ELSI working group was given no budget of its own; instead we had to ask Collins and his staff for funding. Every time we planned an activity that might lead to more people getting genetic tests or participating in genetic research – such as a project protecting genetic privacy – we were given a blank check. But each time we planned an activity that called into question the power of genetic testing – such as a study of the problems with using genetics to predict intelligence, criminality, or certain psychiatric disorders – we were told that the Genome Center didn’t have enough money to fund it.22 The four main research areas of the ELSI program consisted of: privacy and fairness in the use of genetic information, including the potential for genetic discrimination in employment and insurance; the integration of new genetic technologies, such as genetic testing, into the practice of clinical medicine; ethical issues surrounding the design and conduct of genetic research with people, including the process of informed consent; and the education of healthcare professionals, policy makers, students, and the public about genetics and the complex issues that result from genomic research.23 Those research areas, relating almost exclusively to the applications of human genomic knowledge rather than the circumstances and conditions under which that genetic knowledge is being produced, had been identified mostly with a view to increasing social acceptance and demand for genetic ‘products’. Questioning the intrinsic value of the Human Genome Project or the priority it had been granted over other socially useful projects was not part of the agenda. Addressing controversial issues that would have interfered with the pace of genetic science, such as issues of social justice (i.e. whether or not genetic technologies might help address disparities of access to health services) and assessment of the potential uses of genetic technologies in morally troublesome ways was clearly not included in the ELSI programme’s mandate. The programme has also been criticised for the impact it has had on the field of bioethics, making high-tech genetic issues much more fashionable and financially attractive for researchers in bioethics than some core issues such as the impressive imbalance exhibited by the fact that while massive funding is being allocated to genetic research, many people do not have access to basic healthcare – especially in the United States where 47 million Americans are without adequate health insurance. Moreover, despite the Human Genome Project Organization’s reference to the human genome as part of ‘the common heritage of human kind’ and the universality of the project’s human benefits, it has concentrated its work on concerns about privacy and autonomy, tacitly or explicitly framed against the United States’ constitutional, legal and judicial traditions (Cahill, 2003). As a matter of fact, where human

20

Genetic knowledge and the rise of genetics as a new perceptual regime

genetics is concerned, few legal analyses withstand the dominant tendency to consider the processes involved in the production of genetic knowledge and the related technologies as either objective, impartial, and value-neutral, or inherently beneficial and even vested with a moral priority over alternative human enterprises (Fleck, 1994). The use of genetic biotechnology may be thought problematic, not its development. From the outset, the International Bioethics Committee of the UNESCO presumed that ‘research on the human genome and the resulting applications open up vast prospects for progress in improving the health of individuals and human kind as a whole’.24 The final 1997 report of the United States Task Force on Genetic Testing on ‘Promoting safe and effective genetic testing in the United States’ (Holtzman and Watson, 1997) focused on security and efficiency issues, presuming that these issues exhaust the potential ethical questions involved in genetic testing.25 The shrinking of ethical perspectives might be due to institutional circumstances: the United States Task Force on Genetic Testing was a working group emanating from the ELSI, but ‘ethical, legal and social issues’ are not mentioned in the name of the task force. In addition to that possible institutional reason, the focus on technical issues of security and efficiency responds to the Task Force’s explicit mandate: The focus of the Task Force on potential problems in no way intended to detract from the benefits of genetic testing. Its overriding goal is to recommend policies that will reduce the likelihood of damaging effects so the benefits of testing can be fully realised undiluted by harm. The 1997 Report of the Center for Disease Control and Prevention, Translating Advances in Human Genetics into Public Health Action: A Strategic Plan (Center for Disease Control and Prevention, 1997) further unambiguously illustrates that the aim of translating advances in human genetics into public health enhancement strategies has, from the beginning, prevailed over ethical, legal and social assessments. The Inuyama Declaration on Human Genome Mapping, Genetic Screening and Gene Therapy of 1990 stated that ‘. . . efforts to map the human genome present no inherent ethical problems but are eminently worthwhile, especially as the knowledge revealed will be universally applicable to benefit human health’. This is framed as if genetic science, pertaining to the domain of fundamental research,26 and genetic technology, pertaining to the domain of tools27 that could potentially be put to use to any good or bad ends, did not, independent of the political orientations of their use for specific ends, raise any issues of concern for justice or fairness. As a result, most scholars in the field of genetics and the law focus on analysing the uses of genome-driven information and tools, as if the enterprise of genome mapping and sequencing itself were morally neutral.28 Human genetic research indeed enjoys a presumption of neutrality and inherent goodness

The production of genetic knowledge

21

(the logic of healing) that is traditionally attached to fundamental scientific research despite the huge involvement of profit-driven businesses at each stage of the project and the increasing arbitrariness of the conceptual separation made between fundamental and applied research. Yet, as Murphy and Lappé (1994) warned, important issues of justice were involved in the decision to allocate so much public and private money to a project – the Human Genome Project – whose most direct benefits would be at best experienced by people of the next generation, as no significant cures for diseases should be expected to arise quickly from the Human Genome Project. The investment of resources in the genome project and the ensuing genomic research projects decreases the total amount of resources available to produce other health or non-health benefits. A first group of ensuing prioritisation issues relates to inter-generational duties: most of the potential significant benefits of human genetics research in terms of reduction of pain and suffering, and welfare improvement, will benefit future generations rather than current taxpayers.29 Why should people currently invest public money in research that will mostly benefit people in the future? Do we owe future generations a supererogatory duty to enhance their health and general welfare? What implicit conceptions of nature may justify one’s readiness to intervene genetically to prevent the suffering of people in the future whilst so few efforts are invested in preserving what remains of our natural environment? It is in fact impossible to predict when gene-based therapies will become available even though some of the regular breakthrough announcements do indeed substantiate hopes for new therapies to prevent or cure the most dreadful diseases.30 Why would future generations deserve a better situation than people actually living? Why then should currently existing people pay taxes for the development of techniques that they will not be able to enjoy themselves? What is the moral argument that justifies that the needs of people here and now can be sacrificed to expected benefits in the future?31 It will be suggested later in this volume that what ‘counts’ more than the future prospects of cure is the imminent possibility to ‘see’, to perceive the distribution of genetic risks among the population, to form and inform individuals ‘at risk’ so that they can take individual responsibility for their own genetic risk management. Intensive funding of human genetic science should thus be seen less as an investment made for the benefit of future generations than as a disciplinary contribution to a new biopolitics.32 A second set of issues involves questions of intra-generational justice: why should so much public and private money be invested in genetic research whilst the basic needs of all people are not fulfilled? Besides the weight of market incentives and technological pushes, the thesis that will be further explained later is that the prioritisation of genetic research is closely connected with the rise of a ‘genetic paradigm’ comforting the new biopolitics through transformations of the standards of needs, health and normality.33

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Genetic knowledge and the rise of genetics as a new perceptual regime

C. Changing paradigms from the central dogma to complex dynamic molecular networks The human genome reference sequences Notwithstanding the important prioritisation issues involved, the Human Genome Project produced a vast amount of information about the ‘human genome’. The genome reference sequences show that genes are concentrated in random areas along the genome, with vast expanses of non-coding DNA in between.34 Genes indeed occupy only about a hundredth of the length of the huge string of DNA broken up into the 24 pairs of chromosomes in every cell. The genome thus also contains non-coding, or junk DNA, the function of which was unknown until very recently. Much of that junk DNA, although not coding for proteins, is still transcribed into RNA, for reasons that are not well understood. Apparently, these RNAs may be transmitting a level of information that is crucial, particularly to development, and plays an important role in evolution. Recent discoveries have shown that junk DNA might in fact assume regulatory functions.35 Most individual differences are found outside the gene coding regions and are predicted not to affect gene functions.36 The whole genome of individuals – genes and junk – can be analysed to produce a DNA fingerprint which can be compared with other fingerprints, for example in a forensic database or to establish family relationships.37 The completed sequence of the human genome means that scientists know the order of most DNA base-pairs but, unlike what has been and continues to be suggested, the availability of the complete human genome sequence doesn’t mean that the genetic basis of life has been decoded. After the completion of the Human Genome Project, it has become questionable whether genes should be conceived as central or privileged causes in the production of phenotypes.38 An important and rather troublesome lesson of the Human Genome Project is, indeed, that humans have far fewer genes than their sophistication as a species had initially suggested. Human genes were previously estimated to be about 100,000 (between 80,000 and 140,000) in number, before successive draft sequences of the human genome restricted the estimate to 35,000 (between 28,000 and 40,000), and then to between 20,000 and 25,000.39 Rather than facilitating the identification of each gene’s role in the functioning of human beings, the lower estimate dramatically complicates the matter. This low estimate – humans have twice as many genes as fruit flies but only one-third more than the nematode worm C elegans – was quite a disappointment for scientists like James Watson who had claimed they would define foundational concepts like humanness or humanity in the language of genes. The fact is that understanding the role of genes in the processes of life is much more complicated than the central dogma Watson-Crick had put forward suggested. The lower estimate of the number of human genes suggests that an explanation of our complexity and sophistication as human beings is

The production of genetic knowledge

23

not to be found in the number of genetic units (Moss, 2002). Venter and his colleague explicitly acknowledged, in their paper publishing their reference human genomic sequence, that ‘The modest number of human genes means that we must look elsewhere for the mechanisms that generate the complexities inherent in human development’ (Venter et al., 2001). Our species’ complexity is not the expression of an extended array of genes, but of an intensification of how the organism puts its genetic and other resources to use. Interactions among genes and between genes and cellular and non-cellular environments are indeed much more complex than previously expected. The discovery of such a low amount of human genes makes the entire chain of reductionist causal arguments collapse by challenging the basic assumptions that grounded the belief in the properly revolutionary nature of the new genetic science, that is, the idea that each gene is responsible for making its own unique protein and the derived idea that there is a one-to-one relation between genotypes and phenotypes, or ‘gene’ and ‘trait’, and the correlated the idea that the ‘genome’ provides, in micro, the ‘blueprint’ for the whole organism (Werner, 2005, Mattick, 2004, Ast, 2005). Contrary to the central dogma, ‘information can [and does] travel from the environment to the organism and regulate gene expression. Genes do not determine the properties of the organism; they contribute to them. They are not the origin of organic characteristics, but they are involved in their realisation’. (Morange, 2001b: 133) Acknowledgement of this complexity resulted in the central dogma being gradually discredited in fundamental genetic research and replaced by paradigms of complex dynamic molecular networks involving relations among genes, enzymes, non-cellular structures, the environment, etc.,40 giving birth to the new discipline of system genetics, and postponing the promise that identifying correlations between genes and complex conditions will help not only to predict and diagnose them, but prevent and cure them (Hubbard, 2005). Genomes can more accurately be described as being composed of multiple intersecting and interacting mini-ecosystems forming one larger one (i.e. the genome itself) rather than a single collection of separately functioning Lego bricks (i.e. the individual genes) that are combined and recombined precisely, predictably and with no possibility of unintended consequences.41 Reassessing the promises of the genetic revolution Despite what has just been explained, the dominant rhetoric accompanying developments in human genetics is that (1) genetics would reveal the underlying ‘causes’ of thousands of genetic diseases, including not only sickle cell anaemia, Tay-Sachs disease, Huntington’s disease, myotonic dystrophy, cystic fibrosis, but also many forms of cancer and (2) that but also decoding the human genome and identifying genetic sequences would provide the necesary knowledge for the development of diagnostic tests for over 5,000 diseases with a

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Genetic knowledge and the rise of genetics as a new perceptual regime

genetic basis, allow earlier detection of a genetic predisposition to certain diseases and identification of the presence, in individuals, of certain particular susceptibilities to illnesses conditioned by both genetic and environmental factors (genetic information might thus be used to predict sensitivities to various industrial or environmental agents). Speaking about the dramatic advances in the Human Genome Project, Collins declared that: (T)hese revelations hold within them the promise of a true transformation of medical practice. Quite possibly before the end of the first decade of this new millennium, each of us may be able to learn our individual susceptibilities to common disorders, in some cases allowing the design of a program of effective individualised preventive medicine focused on lifestyle changes, diet and medical surveillance to keep us healthy . . . These same discoveries about genetics likely will lead us to predict who will respond most effectively to a particular drug therapy, and who may suffer a side effect and ought to avoid that particular drug.42 As a consequence of the complexity of the dynamic processes and open systems involved in biological processes, for all so-called ‘genetic diseases’ except monogenic dominant diseases, the presence of one genetic mutation or set of mutations known to be involved in the mechanisms that cause the disease is insufficient per se to cause the disease. This is due to a series of factors:

• •

•

•

Genes often exhibit the phenomenon of epistasis: their effect depends on what other genes are present. Genes are also, most of the time, pleiotropic, that is, they have multiple functions and convey many different and often unrelated messages. The timing and nature of these messages are not exclusively determined by the genes themselves but also by the context made of enzymes and other cellular structures that are not genetic. Each gene can thus be ‘used’ in a variety of different ways depending on how it is regulated.43 Furthermore, different segments of a single gene are now seen to play a variable role in different cellular contexts. In other words, genes are made up of sub-units that can be put together and combined with parts of other genes in a variety of different ways. A mutation in one gene will thus have several potential phenotypic manifestations. Conversely, evidence has been shown of functional informational redundancy in cell regulation: more than one gene may command a given function (Strohman, 2003). As a consequence, the same disease, or diseases with the same phenotype, do not necessarily respond to the same genetic features (the genotype).

The relationship between the genotype and the phenotype is thus far more

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tortuous than previously thought (Herbert, 2005). This substentially increases the difficulty of developing genetic tests and interpreting the results. Genetic tests rarely provide unambiguous indications about the actual health risks of the tested person: a positive test does not always mean that the person will definitely get the disease associated with the genetic mutation, nor would all persons who have or will get the disease test positive for the gene associated with it. Interpreting a genetic test always requires accurate knowledge of the test’s level of accuracy, of the mutation variability, of the gene penetrance and the gene expressivity. By the test’s accuracy, I mean the extent to which false positives and false negatives can be excluded for the test. Mutation variability or mutation heterogeneity means that many different mutations can cause the same disease. Genetic tests are mostly developed to detect the most common mutations. The probability of a gene or genetic trait being expressed varies from one individual to the other. That probability, calculated in a population with the same gene or set of genes, is called the penetrance of the genetic condition. Complete penetrance means the gene or genes for a trait are expressed in all the population who have the genes. Incomplete penetrance means the genetic trait is expressed in only part of that population. The penetrance rate may vary according to the age range of the population. Gene penetrance relates to the probability that having the mutation results in a person actually getting the disease.44 Incomplete penetrance means that an individual with a mutation may never get the corresponding disease. Gene expressivity represents the range of disease severity for a given mutation. Having one specific mutation may often cause benign to severe forms of the same disease. The predictive value of a genetic test is thus highly contingent upon the tightness of the link between genotype and phenotype. The notion that there exists a gene for any phenotypic trait is misleading if meant to suggest more than just the fact that the identified gene plays some causal role in the development of the trait, together with the rich background of other developmental resources. As Tim Lewens (Lewens, 2002: 202) explains, ‘there is no general feature that distinguishes genetic causation and the developmental role of genes, from environmental causation and the developmental role of environments’. Aren’t genes linguistic fictions? One of the consequences of the shift from the genocentric dogma to a postgenomic paradigm emphasising the arbitrariness of taking genes as prioritised causal factors in the development and functioning of organisms is that the concept of gene itself has become highly problematic, and one of the most difficult epistemological conundrums molecular biologists and philosophers are confronted with.45 According to Karole Stotz (Stotz, 2004): The reality of genome structure today challenges the conventional picture

26

Genetic knowledge and the rise of genetics as a new perceptual regime

of the gene in the same way that the reality of particle physics challenges the traditional picture of matter. The ‘particles’ of the quantum world can lack such apparently essential features as having mass or being in some particular place. In the same way, just about any of the normal expectations we have when we hear the word ‘gene’ is violated by some important class of DNA sequences. Physicists changed their concept of a particle in response to the strange world that quantum physics revealed. Just so, in the ‘post-genomic’ world scientists continue to talk about ‘genes’ but often mean something quite at odds with the picture of the gene found in school textbooks. Unitary definitions of ‘genes’ as ‘specific lengths of DNA that encode the information to make a protein or ribonucleic acid (RNA) product’ (World Health Organization, 2002) or as ‘ordered sequences of nucleotides located in a particular position on a particular chromosome that encode a specific functional product, like a protein’ (World Health Organization, 2005: 2), despite being widespread in policy reports, are contradicted by genetic complexity. Defining genes as ‘specific lengths of DNA’ or as ‘ordered sequences of nucleotides’ simultaneously defined by their location on particular chromosomes and by their function as maker of a protein or RNA is perfectly in line with the central dogma and its assumption of a one-to-one relationship between genes and proteins. However now that one knows that genetic information contained in DNA needs to interact in a complex manner with DNA information contained on other parts of the genome, enzymes, noncellular structures, the environment, etc., in order to produce one or several proteins, or none, the definition of genes as a ‘physical’ portion of DNA with a specific function has become problematic.46 Acknowledgement of the complexity of molecular biology has fractured the unitary concept of gene. Precisely what a gene really is, whether it is a thing, a function, or a combination of both, remains remarkably uncertain. It appears that definitions cannot identify the gene with respect to phenotype and, at the same time, locate the gene at the molecular level with respect to DNA sequence. Moss suggested that there must be at least two separate concepts of the gene: [G]enes can be instrumental predictors of phenotypic outcomes (gene-P) or genes can be material constituents of dynamic, context-sensitive biological processes (gene-D), but they cannot be both simultaneously; and yet this is exactly what has been assumed by the gene-Darwinism that has understood itself to have solved the enigma of the apparent purposiveness of living organisms. Its solution has been to pack the phenotypic functionality of living systems into the compact materiality of a molecular sequence, but this is nothing short of the unwarranted conflation of gene-P and gene-D. (Moss, 2002)

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Stotz, Bostanci and Griffiths (Stotz et al., 2006) summarised the evolution of the concept of gene and, interestingly, linked it to a change of era: We might thus be at the brink of a new era that leads us away from genetics towards (post) genomics. While the former still tries to assimilate new and spectacular findings of genomic complexity to the concept of a particulate gene with a more or less discrete physical structure defined by its boundaries as much as by its functional product(s), the latter accommodates its concepts to a molecular reality based on flexible entities that are defined by spatial organisation and location and by sensitivity to intra- and extra-cellular signals. The cellular context is not only defining the meaning of a particular gene, it even dictates the structural identity of a gene. In the post-genomic era, the research focus seems to shift from genes to ‘expressed genes’, that is, proteins that have an acknowledged central role in the metabolic processes and activities of the cells. This shift spurs us to acknowledge the metaphorical nature of what we call our genes – those newly ‘visible’ elements of our ‘inner nature’ to which we tend to assign privileged explanatory and predictive power. Failure to acknowledge this has both encouraged, and been encouraged by, the fascination with which the ‘pedagogical metaphors’ describing the human genome sequence as the ‘book of life’ and of individual genomes as our ‘genetic blueprint’ or our ‘coded future diaries’ have been received and assimilated in political, cultural and economic schemes. Whereas the metaphorical language used by scientists to constitute their theories47 recalls the impossibility of a pure and unmediated ontology of natural facts,48 that impossibility tends to be forgotten by science itself. Problems arise not because of the use of metaphors in science, but because the metaphorical nature of scientific discourses tends to be forgotten. ‘Genes’, ‘genetic programmes’ and ‘genetic codes’ have come to be conceived as pre-discursive, empirical realities (Pugliese, 1999).

Notes 1 The ‘phenotype’ is ‘the total of everything that can be observed or inferred about an individual’. (Dobzhansky, 1962) 2 ‘The structure of DNA gave to the concept of gene a physical and chemical meaning by which all its properties might be interpreted. Most important, DNA – right there in the physical facts of its structure – is both autocatalytic and heterocatalytic. That is, genes have the dual function, to dictate the construction of more DNA, identical to themselves, and to dictate the construction of proteins very different from themselves.’ (Max Perutz, cited in (Judson, 1996) cited by (Kane, 2004: note 11)) 3 Yet James Watson’s writings and speeches do not reflect any concern for the obvious lack of professional integrity towards a colleague.

28

Genetic knowledge and the rise of genetics as a new perceptual regime ‘Constantly exposing your ideas to informed criticism is very important, and I would venture to say that one reason both of our chief competitors failed to reach the Double Helix before us was that each was effectively very isolated. Rosalind Franklin found small talk awkward and until it was too late did not realise how much good advice Francis would willingly have given her. Had she started to talk to him, Francis would have led her to use her facts to find the base pairs. And then there’s Linus Pauling. Linus’ fame had gotten himself into a position where everyone was afraid to disagree with him. The only person he could freely talk to was his wife, who reinforced his ego, which isn’t what you need in this life.’ (Watson, 1993) In his speech at the Inauguration of the Center of Genomic Research of Harvard on 30 September 1999, he provided the following statement, aimed at absolving himself from having stolen Rosalind Fanklin’s work: ‘There’s a myth which is, you know, that Francis and I basically stole the structure from the people at King’s. I was shown Rosalind Franklin’s x-ray photograph and, Whooo! that was a helix, and a month later we had the structure, and Wilkins should never have shown me the thing. I didn’t go into the drawer and steal it, it was shown to me, and I was told the dimensions, a repeat of 34 angstroms, so, you know, I knew roughly what it meant and, uh, but it was that the Franklin photograph was the key event. It was, psychologically, it mobilized us . . .’

4 Rosalind Franklin worked as a research associate for John Randall at King’s College. Franklin and Wilkins were peers in Randall’s laboratory. Randall presented Franklin’s data and her unpublished conclusions at a routine seminar and Wilkins disclosed her work to Watson and Crick, her competitors at Cambridge University. 5 See Sayre (1975), see also Maddox (2003) 6 ‘By choice she did not emphasize her feminine qualities. . . . Though [Rosalind Franklin’s] features were strong, she was not unattractive and might have been quite stunning had she taken even a mild interest in clothes . . . There was never lipstick to contrast with her straight black hair, while at the age of thirty-one her dresses showed all the imagination of English blue-stocking adolescents. So it was quite easy to imagine her the product of an unsatisfied mother who unduly stressed the desirability of professional careers that could save bright girls from marriages to dull men . . . Clearly Rosy had to go or be put in her place. The former was obviously preferable because, given her belligerent moods, it would be very difficult for Maurice [Wilkins] to maintain a dominant position that would allow him to think unhindered about DNA . . . The thought could not be avoided that the best home for a feminist was in another person’s lab.’ (Watson, 1968) 7 But see Capron (1990): ‘The large appropriations being requested from (and largely supplied by) Congress for this process of mapping and sequencing the human genome give it the aura of a massive project, the sort of “big science” associated with high energy physics and moon rocket launches. While the wisdom of making the Genome Project a scientific priority at this time has been sharply debated by scientists over the past several years, it is generally recognized that the “big science” image is somewhat misleading. Even granted that a good deal of research is being carried out at the “national laboratories” affiliated with the Department of Energy, which have previously carried on physics studies requiring a major concentration of resources and personnel, most of the work is decentralised

The production of genetic knowledge

8

9

10 11 12

13 14 15

16

17 18

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and a good deal of it derives from studies being carried out for other purposes besides mapping the human genome.’ ‘Though molecular genetics was rapidly increasing in complexity at the time, the Human Genome Project (HGP) that was born in the late 1980s represented the apotheosis of a view of simplicity and linearity of genetics in the project’s early forms.’ (Schaffner, 2002) The total project funding over a 15-year period (1990–2005), including the funding of studies of human diseases, experimental organisms (such as bacteria, yeast, worms, flies and mice), development of new technologies for biological and medical research; computational methods to analyse genomes; and ethical, legal, and social issues related to genetics was estimated to represent a cost of 3 billion dollars. The financial structure of human genome research evolved, around 1993, when the private sector began to invest massively in the sector. See World Health Organization (2001), with data up to 25 September 2000. http://www.ncbi.nlm.nih.gov/genemap/. See Human Genome Project Information, Announcements on the First Analysis of Genome Sequence, 12 February 2001, http://www.ornl.gov/hgmis/project/ feb_pr/physical_map.html, http://web.archive.org/web/20020403212530/ and http://www.nhgri.nih.gov/NEWS/sequencing_consortium2.html. Comments by Francis Collins, MD, PhD, Director, National Human Genome Research Institute Regarding Genetic Non-discrimination Legislation, 1 April, 2004, http://www.genome.gov/11511396. James Watson, former director of the HGP, once declared, ‘[W]e used to think our fate is in the stars. Now we know, in large measure, our fate is in our genes’ (cited by Weiner, 1994: 31). ‘Imagine that the genome is a book; There are twenty-three chapters, called CHROMOSOMES. Each chapter contains several thousand stories, called GENES. Each story is made up of paragraphs, called EXONS, which are interrupted by advertisements called CODONS. Each word is written in letters called BASES. . . . The idea of the genome as a book is not, strictly speaking, even a metaphor. It is literally true. A book is a piece of digital information written in linear, onedimensional and one-directional form and defined by a code that transliterates a small alphabet of signs into a large lexicon of meanings through the order of their groupings. So is a genome.’ (Ridley, 1999) Remarks by the President, Prime Minister Tony Blair of England (via satellite), Dr Francis Collins, Director of The National Human Genome Research Institute, and Dr Craig Venter, President and Chief Scientific Officer, Celera Genomics Corporation, on the completion of the first survey of the entire Human Genome Project. The White House Office of the Press Secretary, 26 June 2000. http:// www.genome.gov/10001356. Conference organised by the European Commission – DG Research, and the Socialist Mutual Health Fund of Belgium on ‘New genetic applications and access to health care’, 24–5 March 2004. See for example (Zimmerman, 1999): ‘[A] detailed knowledge of the human genome will permit a precise definition not only of overt inborn errors – that is, the so-called genetic diseases – but allow an assessment of a particular individual’s susceptibility to or capacity to avoid many types of disorders, including infectious diseases. Not only will such information make the art of genetic counselling much more complex than it is today, but it will also lead to a much greater variety of effective interventions. In particular, targeted gene therapy for a wide variety of disorders will become possible. Both pre-embryo genetic diagnosis and selection,

30

19 20

21

22 23 24

25 26 27

Genetic knowledge and the rise of genetics as a new perceptual regime and human germline therapy, performed on a zygote at the time of fertilisation, will become feasible forms of reproductive intervention, to eliminate the possibility of children being born with genetic pathology, or even carrying unexpressed or recessive genetic errors. Detailed genetic information, when it finally becomes correlated with function, will permit a comprehensive understanding of an individual’s physical, cognitive, and behavioural traits (including how gene expression during development will be influenced by the environment). While such information would reveal the basis for much current or future pathology, it would also reveal sub-clinical or non-clinical tendencies or characteristics that all contribute to the total human being. It is highly likely that this will include predictors of not only physical attributes, such as stature, body type, and athletic ability, but personality, intellect, musical and artistic talent, and perhaps even moral character.’ See also Drell and Adamson (2003). Although ‘personalised medicines’ have a promising future, it will be at least another 15–20 years before their use is widespread (Royal Society, 2005). See Brown (2003): ‘. . . we are all no doubt familiar with several of more salient examples of early ambition giving way to disillusionment and any number of applications have turned out radically different to the way many people once anticipated. Promise and risks are together vulnerable to the reflexive modern twist of solutions generating unanticipated problems and the overall failure of predictive frameworks to anticipate the unanticipatable. The early promises associated with gene therapy have been confronted with unforeseen and highly complex problems, even in single gene defects where the approach seemed relatively straightforward.’ See also Martin (2001), Hedgecoe and Martin (2003), Brown (2003) and Salvi (2002). See Annas (1990). See also, however, Capron (1990: 681, note 42): ‘The sense that important ethical problems are at hand is probably magnified by the unprecedented plan of NIH’s National Center for Human Genome Research to allocate from one to three percent of its funds for ethical analysis; perhaps this is nothing more than the formula under which one percent of the construction costs of new buildings is set aside in some cities to purchase works of art – it does not guarantee more aesthetic buildings, but it does ensure that artists will be kept busy producing ornaments for what gets built.’ Andrews also reported James Watson having said that his intention in creating the ELSI was ‘to encourage academics and others to talk and talk, and never get anything done, and if they did do something, I wanted them to get it wrong’. http://ghr.nlm.nih.gov/info=genomic_research/show/elsi. Universal Declaration on the Human Genome and Human Rights Adopted by the General Conference of the United Nations Educational, Scientific and Cultural Organisation at its 29th session on 11 November 1997; endorsed by General Assembly resolution 53/152 of 9 December 1998. For a critical assessment of the report, see Joll (2000). See for example S Brenner, ‘The human genome: the nature of the enterprise’, in Human Genetic Information: Science, Law and Ethics, Ciba Foundation Symposium 149, Chichester: John Wiley and Sons, 1990, p 6, cited in McLean, 1998. See Mori (1999): ‘For example, many people are terrified by the possible disastrous social consequences of some abuse of our new capacity to change our genetic make-up. What would happen if a dictator should gain full control over the new practice? Would it not be a real social disaster for future humankind? These questions are commonplace when we approach the issue of genetic manipulation, but I must say that they are misleading and miss the point. To show that they make little sense, we can ask a similar question. What would happen if a dictator gained full

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32 33 34 35 36 37

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control over all television, radio, newspapers, telephones, etc., so to hold control over all information? Certainly it would be a disaster, but does this possibility show that the invention of television etc. was morally wrong?’ ‘My personal sense is that persons assigned to discuss the ethics of genome mapping quickly find themselves discussing related subjects, because the topic-in-chief is regarded as pretty thin gruel’ (Capron, 1990). On the question of intergenerational justice see Gosseries (2002). Genomic research has, for example, raised hopes in the development of vaccine against AIDS. A form of ribonucleic acid (RNA) developed by researchers at the MIT has been discovered as being a new weapon against HIV. The short form of RNA (RNA is present in most cells, carrying genetic information and operating in the production of proteins) turns off genes vital to the production of the cell surface proteins that HIV uses to enter and infect cells. In recent years, scientists have discovered that double stranded RNA can silence genes in a process called RNA interference. As explained by Carl Novina, from the Center for Cancer Research at MIT, ‘the central tenet of biology is that DNA makes RNA and RNA makes proteins. RNA interference acts like a switch, like the volume control on a radio, to turn down the volume of gene expression’. Many obstacles remain however before that lab victory be implemented on human patients. See ‘HIV-1 virus replication inhibited in lab by RNA interference’, MIT Tech Talk, Wednesday, 4 June 2002, http://web.mit.edu/newsoffice/2002/rna.html. Ironically, sociobiology claims that according to the logic of evolution, an animal has a tendency to favour the future over the present, the faraway over the near, uniquely when such a preference directly serves the propagation of his genetic material. According to Wilson, (1975: 3): ‘the central theoretical problem of sociobiology [is]: how can altruism, which, by definition, reduces personal fitness, possibly evolve by natural selection?’ See Becker (1976: 818): ‘Sociobiologists have tried to solve their central problem by building models with group selection; these models can be illustrated with the particular variant called kin selection. Suppose that a person is altruistic toward his brother and is willing to lower his own genetic fitness in order to increase his brother’s fitness. If he lowers his own fitness b units as a result of his altruistic behaviour, he increases his brother’s fitness by say c units. Since they have about one half of their genes in common, his altruism would increase the expected fitness of his own genes if c > 2b. In particular, it would then increase the expected fitness of the genes that contribute to his altruism. Therefore, altruism towards siblings, children, grandchildren, or anyone else with common genes could have high survival value, which would explain why altruism towards kin is one of the enduring traits of human and animal nature.’ See also Dawkins (1978). Though, given the undeniable influence of cultural social and individual factors in the shaping of human preferences, such a genetic explanation is far from convincing, notwithstanding the particularities of the Human Genome Project, and specifically its predicted potential for reshaping human genetic characters. For a definition of those complementary concepts of discipline and biopolitics, see Foucault (1976a) and Foucault (1997 [1976]). See Chapter IV. Chromosome 1 has the most genes (2,968) and the Y chromosome has the fewest (231). See Gibbs (2004) and Mattick (2004). Human Genetics Commission (UK) Report (2000). ‘Whose hand on your genes?’, Consultation paper, p 3 § 2.3. The map of each chromosome, showing where, on the chromosome, genes are located, may be found at http://www.ncbi.nlm.nih.gov/genemap.

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38 ‘In contrast to genotype, which refers to a single gene locus, an individual’s phenotype is the biochemical, physiological, mental, and physical characteristics resulting from the combined effects of the genotypes at different gene loci and host or her environment.’ (Holtzman, 2001). 39 The exact number of human genes is still controversial however: the publicly funded HGP and the private United States firm, Celera Genomics, who produced the two first draft sequences of human genome, put the number of human genes at around 35,000. Studies since the completion of the Human Genome Project have generated widely different estimates. A third team, based at Ohio State University, Columbus, has reanalysed the raw data, using a supercomputer, and came up with a higher estimate for the number of human genes (66,000 to 75,000). The reason for so much uncertainty is that predictions of the number of human genes are derived from different computational methods and gene-finding programs, some tending to overestimate gene numbers by counting as a gene any DNA segment that looks like a gene, other methods underestimate the number of genes by identifying as genes only those portions of DNA that are similar to what scientists have previously identified as genes. 40 Dose (1995) showed the possibility of a flow of information from proteins ->RNA->DNA, contrary to the central dogma of molecular biology. Recognising that shift, the American NIH, in its 2003 Roadmap, called for initiatives that would focus on the development of new technologies to accelerate discovery and facilitate comprehensive study of ‘biological pathways and networks’. (http:// nihroadmap.nih.gov) For a critical review of the contemporary emphasis on the genetic basis for human individuality see Johnson (2001). 41 See Dutfield (2005). See also Moss (1995): ‘. . . organisms are not in fact composites of unit-characters, because on the whole alleles do not significantly differ with respect to what they code for, nor are alleles typically well described as dominant and recessive, because what they do code for is not a unit-character, nor even an organismal level property prior to a developmental process to which they may or may not be necessary but are never sufficient.’ 42 Testimony of Francis S Collins, Director, National Human Genome Research Institute, National Institutes of Health, before the Senate Health, Education, Labor and Pensions Committee (20 July 2000). See also Collins and McKusick (2001). 43 ‘A cell is a highly complex and structured entity and whether and how the DNA is transcribed and translated depends on complex features of the enclosing cell’ (Dupré, 2003). 44 According to the European Group on Ethics in Science and Technology (2003: 46), penetrance ‘refers to the proportion of true false versus true negatives in diagnosis, i.e. the proportion of those who are diagnosed with a defect gene but were erroneously not diagnosed as such. Penetrance is distinct from predictability, which refers to the likelihood that a person who was correctly diagnosed as having a defective gene will actually develop the associated disease in the future’. 45 See Falk (1986, 2000), Griffiths (2002), Fogle (2000), Rheinberger et al. (2000) Keller and Winship (2002), Moss (2001; 2004b), Morange (2001b) and Oyama (2000). 46 Morange (2001a). 47 According to Richard Lewontin’s reminder of the metaphorical nature of science (Lewontin, 2001: 3), ‘[I]t is not possible to do the work of science without using a language that is filled with metaphors. Virtually the entire body of modern science is an attempt to explain phenomena that cannot be experienced directly by human beings, by reference to forces and processes that we cannot perceive directly

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because they are too small, like molecules, or too vast, like the entire known universe, or the result of forces that our senses cannot detect, like electromagnetism, or the outcome of extremely complex interactions, like the coming into being of an individual organism from its conception as a fertilised egg.’ 48 See Wald (2000): ‘Scientific theories and events do not exist independently of the words that scientists and journalists use to think about them, and by the time they reach the general public, they have been further transformed by the language that scientists and journalists use to report them and by the social and cultural narratives in which they are embedded.’

Chapter 2

The scientific and economic strength of genetic reductionism

As a matter of fact, the shift from the genetic to the post-genomic era has hardly been acknowledged outside of laboratories. The media, the general public, and most regulatory bodies remain attached to the appealing genocentric dogma that was initially propagated. Moreover, despite the new scientific discourses of complexity shifting the horizon from genomics to proteomics and metabolomics, the problematic privileging of genetics over the rest of biology still prevails (Herbert, 2005: 180–81). The strength of genetic reductionism and the ensuing unbalanced views of the respective roles of genetics and environment in producing phenotypes are due to a combination of factors including: undue extrapolations from scientific methodological reductionism; scientific strategies privileging accurately localizable genes over environmental elements that are hard to define; incentives provided by the patentability of genes and gene products; the tendency of some scientists1 to over-emphasise the immediate medical importance of their work to media and funding agencies; the tendency of biotechnology companies to present exaggerated claims in order to encourage their shareholders,2 and the reluctance to acknowledge the need for social and public remedies for individually experienced disadvantages. The currency of genetic discourses of ‘truth’ serves ideological and commercial interests,3 supports the interpretations of correlations as causes, and prioritises genetic over non-genetic explanations. The ensuing ‘geneticisation’ process – the process whereby genetic explanations gain ascendancy in medical and social discourses – has received anxious scholarly attention (Dreyfuss and Nelkin, 1992; Hedgecoe, 2000, 2001; 2003a; Lippman, 1991, 1992). In mainstream law and bioethics, however, genetic truth discourses remain almost unquestioned. Discussions of the ethical, legal, and social issues arising from human genomic research are framed, for the most part, as if what is implied by the metaphors used to constitute and communicate about genetic science were true (Nagl, 2005: 160). Genetic science – maybe more than any other science – relies both on theory-constitutive and pedagogical-exegetical metaphors to constitute its object of inquiry and to communicate about its findings (Knudsen, 2003).

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Genetic knowledge and the rise of genetics as a new perceptual regime

The time has come to question the existence of genetic science’s object as purely extra-discursive empiricism (Pugliese, 1999). One feature of the genetic era we are assumed to have entered is precisely the highly performative mechanisms it exhibits where reality eludes information, but where information, processed according to the dominant socio-economic algorithms of the day by public and private institutions, shapes identities, behaviours and expectations. Gaston Bachelard’s comment that knowledge of the real is a light that always throws shadows somewhere, and that it is never full and immediate,4 aptly describes the correlation that exists between the creation of new spaces of transgenerational genetic visibility and the opaqueness of invisible, uncalculated, social and economic risks.5 Critical and post-modern theories offer invaluable resources to conceptualise the relations between scientific and legal discourses,6 and promise alternative insights into the ethical, legal and economic issues raised by the new genetics. An important innovation of twentieth-century theory consisted in acknowledging the inevitability of our reliance on linguistic structures to access our experience. In consequence of the perception (made explicit in Saussure’s observation that ‘[A] language is a system of differences with no positive terms’ (Saussure, 1911)) that language can no longer be construed as simply a medium, relatively or potentially transparent, for the representation or expression of a reality outside of itself, it became necessary to entertain seriously some form of semiological theory in which language is conceived of as a self-contained system of signs whose meanings are determined by their relations to each other, rather than by their relation to some transcendent or extralinguistic object or subject (Towe, 1987). In his unpublished 1873 essay ‘On truth and lies in a nonmoral sense’, Nietzsche described ‘truth’ as merely: . . . a movable host of metaphors, metonymies, and anthropomorphisms: in short, a sum of human relations which have been poetically and rhetorically intensified, transferred, and embellished, and which, after long usage, seem to people to be fixed, canonical, and binding. Truths are illusions which we have forgotten are illusions; they are metaphors that have become worn out and have been drained of sensuous force, coins which have lost their embossing and are now considered as metal and no longer as coins. (Nietzsche, 1979 [1873]) Following Nietzsche, Derrida set out the enduring desire within the discourse of science to erase their own status as text and their critical dependence on metaphors (Derrida, 1972: 258), and Lacan observed that ‘[S]cience, if one looks at it closely, has no memory. Once constituted, it forgets the circuitous path by which it came into being; otherwise stated, it forgets the dimension of truth that psychoanalysis seriously puts to work.’7 Both are particularly relevant in assessing the ‘nature’ of the genetic truth claims that are being

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produced. The complex scientific understanding of molecular activity naturally invites deconstruction of the ‘genocentric’ assumptions that drive current ‘genetic mythology’.

A. The ‘linguistic turn’ in biology and the revival of preformationist assumptions A common feature of the theory-constitutive and pedagogical-exegetical metaphors of genetics is their construction in the tropes of ‘writing’. This ‘linguistic turn’ in biology has been celebrated as providing a more complete understanding of biological developments.8 The genocentric belief that all of biology is derivable from genes still functions as a highly resilient archetype embodied in metaphors of the ‘genetic code’, the ‘genetic programme’ or the ‘genetic blueprint’ (Atlan and Koppel, 1990; Sarkar, 1996). The genome, in this view, embodies a blueprint or plan of the adult organism that is transmitted from one generation to the next (Dupré, 2003). Interestingly, the translation of complexity into the simple metaphor of the ‘genetic program’ or ‘genetic blueprint’ calls to mind a seventeenth-century pre-modern theory of development, called ‘preformationism’, which hypothesised that all adult organs were prefigured or contained, completely and in miniature (the homonculus), within either the sperm or the ovum. Epigeneticists, on the contrary, following Aristotle, believed that the organism was not yet formed in the fertilised egg but resulted from profound changes in shape and form arising during embryogenesis. Aristotle, on the basis of his experiments on chicken eggs (having opened their shells at different incubation stages), had described epigenesis as the development of new structures and new functions at each step of embryonic growth, and as the increase in the complexity of the systems.9 When Marcello Malpigi repeated Aristotle’s experiment around 1660, this time with the visual aid of a microscope, what he saw led him to deny Aristotle’s epigenetic theory. He found that blood vessels are already present in the embryo and thus that they do not develop de novo. He concluded that Aristotle’s belief that organs were increasing in number at each developmental stage rather than growing from their preexisting miniature resulted from the fact that Aristotle did not have a microscope. From observations of this kind, he concluded that epigenesis was wrong, and that preformationism was the right theory. Most naturalists agreed with him until the publication of Karl Ernst Von Baer’s treatise on the development of animals10 in 1828, showing that embryonic development is a true epigenesis, that is, a genesis of new structures rather than the growth of pre-existing structures.11 According to Lewontin (Lewontin, 2001: 6): [I]t is usually said that the epigenetic view decisively defeated preformationism. After all, nothing could seem to us more foolish than a picture

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of a tiny man inside the sperm cell. Yet, it is really preformationism that has triumphed, for there is no essential difference, but only one of mechanical details, between the view that the organism is already formed in the fertilized egg and the view that the complete blueprint of the organism and all the information necessary to specify it is contained there. One may indeed suspect the contemporary dominant conceptions of the genome as the blueprint of the organism12 of exhibiting the triumph of preformationist views. Despite the complexity of biological processes, the leading and originating principles remain localised in the ‘genetic programme’ or the ‘genetic code’ contained in the nuclear germ of the living cells, in the genome.13 The genome, in this view, is what codes for complexity. Susan Oyama (Oyama, 2000: 59) suggested that: The genome as constituting rules, instructions, or a program, either in the sense of a plan or in the sense of a computer program, is so common a notion as not to seem metaphoric at all. Routine introductions to treatments of development present any one of a combination of these terms as the solution to the preformation-epigenesis problem. Yet, just as these molecules can be thought of as containing organs and behaviour only by a prodigious stretch of the literary imagination, so is it difficult to understand how they could contain statements and commands. Yet, perhaps because rules imply activity rather than objects, these locutions raise few eyebrows. Those abstractions allow biologists to acknowledge the self-organising and the self-developing capacity of living things through a complex interactive epigenetic unfolding of forms involving cells and tissues that are the source of their own ontogenesis without abandoning the idea that genes do play the major part in biological development. In the early 1970s, Jacques Monod,14 François Jacob (Jacob, 1976) and Edgar Morin contributed to creating and popularising machinistic metaphors in biology, along with the metaphors of the genetic programme or code. According to Morin (1973), informational notions in biology have all a cybernetic character: they identify the cell as apparatus or machine informationally self-directed and self-controlled. Yet, those representations, despite granting a central role to genes, served as purely methodological reductionism and did not, in their proponents’ minds, involve any deterministic beliefs about human life. That is because, unlike what the Human Genome Project’s promoters repeatedly claimed about their enterprise, the target of investigations of the French molecular biologists and geneticists was not the anthropological notion of human life, or what it means to be human, but, more generally, the algorithms of living systems. François Jacob (Jacob, 1976) explained that ‘On n’interroge plus

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la vie dans les laboratoires. C’est aux algorithmes du monde vivant que l’on s’addresse’. The principle of living systems is information, code: the genetic code that survives to the organism and ensures the reproduction of the species, of any species, from bacteria to human beings. Genetic information, in this sense, is static, immobile,15 and has nothing to say about life or ‘the chaotic biography of men’. This brings back the idea, common to the ancient Greeks but one that has slightly faded into oblivion, of a dual notion of life as bios and zoë, which the term ‘life’ cannot adequately translate. One of the clearest expressions of this revival is to be found in Jacob’s autobiographical narrative. Writing from the privileged location of the subject and protagonist of biological science, the geneticist (Jacob, 1987) described himself as opposed to the immutable genetic code that he shares (up to 99 per cent) with the rest of humanity. Viewed through the prism of the genome as a code or programme, the body is nothing more than an incidental moment in the transmission of code and information, but the body is not necessarily all of what life consists of. The suggested opposition between an individual’s life (biography) and the genetic code described as the principle of living systems is a classical theme that has also been explored by philosophers and political scientists such as Giorgio Agamben and Hannah Arendt. Giorgio Agamben’s investigation of the origin of the dogma of the sacredness of life (Agamben, 1998) recalled the ancient distinction the Greeks made between the political bios and the natural zoë, the distinctive meanings of which had been lost in the Latin expression of vita. Interestingly, the same intuition of the coexistence of a dynamic bios limited in time, from birth to death, and the eternal and static (or circular in an eternal repetition of the same) zoë as a mark of human existence may be found in Hannah Arendt’s conception: ‘Individual life is distinguished from all other things by the rectilinear course of its movement, which, so to speak, cuts through the circular movement of biological life. This is mortality: to move along a rectilinear line in a universe where everything, if it moves at all, moves in a circular order.’16 According to Hannah Arendt, it is through (political) action – transcending both the necessity of survival and the reproduction of the species (zoë) and social utilitarianism – that the human being conquests humanity, a humanity open to the unexpected and unpredictable future (ethical contingency) rather than to the eternal return of the same (natural necessity). These reflections illustrate the fundamentally political content of debates concerning genetic reductionism. Reflecting upon the relationships and interactions of law and human genetics, and on the proper role of law in the governance of human genetics, requires the assumptions one has about that controversy to be made explicit. The reductionist and machinistic metaphors of the genetic programme were not intended to provide anything more than what methodological reductionism in science usually provides. That form of methodological reductionism should thus be clearly distinguished from the ideological reductionism that

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would later be put to use by others in order to support, and draw benefit from, the current social and economic trend that demands and promotes gene-deterministic conceptions of human health and behaviours.17 Fascination with the genome has led extreme reductionists to argue that it would in principle be possible to provide an entirely mechanistic explanation of human behaviours,18 and given sufficient scientific progress, this would also be eventually practically possible. That complexity has not replaced a certain form of genetic deterministic thought in public opinion, still influenced by reductionist metaphors pronounced during the grandiloquent celebrations of genetic breakthrough and the repeated promises that humanity will soon decode its own ‘instruction book’, is not as surprising as the survival of genocentrism among biologists, reluctant to re-orient their quest for the Holy Grail19 away from the genome. Notwithstanding the new complexity-oriented discourses and a rhetorical shift making references to explicitly genocentric metaphors less frequent, research agendas still reflect the problematic privilege of genetics in comparison to the rest of biology, not to speak of the environment.

B. The definitional privilege of simple genetic causation over complex environmental contribution In his review of research on the genetic basis of schizophrenia, Adam Hedgecoe (Hedgecoe, 2001: 885) observed that, for researchers involved in the field, ‘[H]owever valued the environmental contribution is, it is much harder to define rigorously, and thus the main causal factor should be seen as genetic.’ In his study of the narratives of ‘enlightened geneticisation’, he found that those narratives ‘. . . suggest that the variety of different possible environmental factors should be seen against a “genetic baseline” which is the only single necessary condition for causation . . .’ Ainsey Newson (Newson, 2004: 102) did not find that ‘technical’ bias problematic as he asserted that: [G]enes can have a unique informational role in research upon behaviour, as when contrasted with other intracellular information, they are easily characterisable, and can be investigated using well-developed research methods. Other information will be inherently more complex to investigate. Thus, when considering the role of genes in behaviour, there is a need to recognise the likelihood that there will be a variety of different factors involved, but that genetic information may legitimately be sought before any other information, as long as it is interpreted within a context of other causal factors. While genetic reductionism has a legitimate role to play as a scientific method, in the field of biology, complexity, dynamic processes and open systems are

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the norm rather than the exception, and reductionist methodology, despite its efficiency as a tool, cannot really manage this complexity and may even result in erroneous scientific statements (Rose, 2004). Yet, conferring a central causal role upon genes constitutes a scientific strategy oriented towards the successful production of useful, and exploitable, knowledge.20 The European Commission’s rhetoric confirms the direct orientation of research towards the goal of wealth creation: The potential for applications of life sciences and biotechnology promises to be a growing source of wealth creation in the future, leading to the creation of jobs, many of which will be highly skilled ones, and new opportunities for investment in further research. If Europe is to benefit from this, excellence in the science-base is not enough: it is essential to have the capacity to translate knowledge into new products, processes and services, that in turn will generate benefits to society, skilled jobs and prosperity. The development of new capacity involves the encouragement of the entire research and innovation process to attract and train researchers, to attract investment and resources, and to provide a balanced and responsible legal, regulatory and policy framework. (European Commission, 2002) But success does have an ambiguous relationship with the idea of truth. The ‘scientific strategy’ resulting from the tension between the combination of success seeking and truth seeking as goals of scientific research is described by Lenny Moss as ‘[a] gambit which attempts to mediate the highly contextembedded demands of gaining recognition with the in-principle context independent demands of scientific truth’. (Moss, 1995) One consequence that will be further developed later is that the ‘relevance’ of genetic information is highly context-dependent: clinically or medically relevant genetic information is not necessarily actuarially relevant, nor does it necessarily provide valid probability estimates for the purpose of employment-related medical assessment.

C. Genetic reductionism is encouraged by the patentability of genes and gene sequences Whereas identifying a correlation between the presence of a specific genetic mutation and an adverse health outcome, a differential drug response or a particular behaviour is something that may allow researchers and their private or public institutions to fill a patent claim21 and receive the ensuing financial benefits, identifying the environmental, social and economic conditions that contribute to those adverse health outcomes will not result in the same commercial returns. The whole human genome sequence generated by the partially publicly funded Human Genome Project is freely accessible on the Internet, on the

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site of GenBank,22 a public database. The dissemination of the human genome sequence into the public domain is aimed at encouraging the use of that information for further research, and to make subsequent research and development faster and cheaper. The products of genetic information, that is, further inventions arising from this government-sponsored project are patentable and proprietary claims have proliferated in biomedical research. Substantial public-sector R&D investment has been considered necessary in feasibility demonstrations before start-up ventures such as those by Celera Genomics, Incyte, and Human Genome Sciences can begin.23 In turn, it is argued, these companies furnish valuable commercial services that the government cannot provide, and the taxes returned by their successes easily repay the necessary public investments. In fact, genetic reductionism and economic reductionism converge and are mutually reinforcing in suggesting that genes should be patentable and that market-based management of biotechnology will benefit everyone (McAfee, 2003). Yet the idea that gene patenting conforms to the requirement that patents promote technological progress and innovation has become increasingly challenged. Intellectual property, as acknowledged by the United States Constitution and European patent laws, is not a ‘natural fundamental right’ but merely an exceptional privilege granted on utilitarian grounds and to the extent that it promotes innovation in useful arts.24 Although the constitutional purpose in the United States for the issuance of patents is to ‘promote the Progress of . . . useful Arts’, no law requires the Patent Office to balance the research a patent motivates against the research it forecloses. The United States Patent Act requires the Patent Office to issue a patent upon every application claiming a DNA molecule that meets the requirements for a patent, and in doing so, discharges it from its constitutional duty to ‘promote . . . Progress’ (Chin, 2005). Increased granting of gene patents ignores very relevant scholarly critiques of the dubious neo-classical link assumed to exist between patents and innovation. For industries marked by cumulative innovation such as genetics, the positive impact of patents on innovation appears rather uncertain, a number of scholars argue.25 As genes are pleiotropic, granting a patent on a gene or a genetic sequence in respect of a specific function is acknowledged to hinder rather than encourage research and innovation, as it substantially increases the costs for follow-on researchers wishing to carry out further investigations on patented genes and find out much more interesting things about them – including their potential multiple functions, the way they interact with other parts of the genome and their effects (Dutfield, 2005, Chin, 2005). Other difficulties appear at the stage of identifying the function of a gene and the relationship of that gene function with its structure. Does one speak here of the explanation/elucidation of a character of the natural element discovered or of a propriety linked to the envisioned use of the product or process that one

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wants to patent? These difficulties appear at the research stage, when there is a huge gap between gene sequencing and the explanation of gene functions. It is indeed possible to claim, from a computerised analysis of a genomic sequence, patent protection for a very broad field of virtual uses. The United States Patent and Trademark Office’s 2001 patent utility guidelines rejected the objection to gene patenting grounded on the fact that the process of discovering genes is merely an obvious extension of already available technology. It also rejected the objection that an inventor should not be given a patent when he discloses only a single useful function for a particular gene. The consequences may be important, as the following example has shown: a patent has been delivered to Human Genome Sciences26 on the HDGNR10 gene, obtained through systematic sequencing, later to be known as CCR5 gene – a receptor that binds protein molecules called chemokines at the surface of CD4+ leukocytes cells. This patent covers the gene, its protein, and fragments of DNA for locating the gene. Yet the patent does not describe the function of the gene. Academic researchers later discovered that the patented gene was in fact a crucial HIV receptor in human cells, needed for the penetration of HIV inside the cell. Despite the fundamental character of this research (any drug that can block the protein could be used in the fight against AIDS), any therapeutic development based on the use of CCR5 as a drug target might depend upon the initial patent. The National Human Genome Research Institute (Department of Health and Human Services, NIH), acknowledges this problem in its 2006 Congressional Justification for Appropriations Committee: The Human Genome Project championed free and open access to genetic and genomic data. NIH policy recognises the appropriateness of intellectual property protections for discoveries that are associated with useful products, but promotes the free dissemination of research tools whenever possible, especially when the prospect of commercial gain is remote. Over the past three decades, however, many patents have been granted on gene sequences and other types of basic information derived from genetic sequence. This has generated apprehension that gene patents are granted too broadly or freely, especially for foundational tools. The concern is that too liberal issuance of patents, especially when coupled with exclusive licensing practices, will result in reach-through restrictions or excessive fees, and inhibit investigators from conducting research with these tools. This, it is feared, will ultimately deter medical research and public health advances. The NHGRI hopes to fund research through this RFA that will address some of these issues, which we know are of great interest to many basic biomedical researchers. Critiques of gene patenting have originated from various sources. In addition to the utilitarian critique of the practical consequences of gene patenting

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already mentioned, arguing that gene patents hinder rather than increase innovation, adversaries of gene patenting have also grounded their discontent on the consideration that biological material, especially when it is of human origin, should not be subjected to property rights, either because they consider it as belonging to a sphere of goods so intimately tied to human wellbeing that it should not be contaminated by market logic, or because they consider that genes should be regarded as belonging to the common heritage of humanity and should thus remain in the public domain. Granting patents of genes and genetic sequences, it has been argued, in fact allows private exclusive exploitation rights on the ‘genetic code’ itself, understood as ‘the set of biological formulas that dictate the conversion of DNA into protein and implement the central dogma of biology’. Without questioning the validity of the central dogma, Eileen Kane questioned the patentability of genes on the ground that by allowing private property rights on a gene, which she describes as behaving ‘like a dynamic and highly interactive template whilst being, as a chemical compound, definitionally static’, one permits private constructive pre-emption of the genetic code, as ‘. . . the gene is the static chemical compound and the dynamic template executed through the genetic code’.27 As such, the genetic code is characterised as an unpatentable law of nature that belongs to the public domain. This argument against gene patents, founded on the indirect appropriation that gene patents allow over the genetic code, parallels proclamations of the human genome as being the ‘common heritage of mankind’.28 Patenting the genes – the chemical compounds, or templates – results in allowing occlusion of access – or, in intellectual property law terms, constructive pre-emption – of the genetic code and as such the private appropriation of a part of the public domain. Another argument frequently raised against gene-patenting is that DNA does not fulfil the conditions of patentability, as it is identical to elements occurring in nature (they are thus not ‘invented’ but ‘discovered’), and because ‘genetic inventions’ do not involve truly inventive activity, as they often result from routine, computerised methods of inquiry.29 Research subjects and patients’ associations have moreover opposed the making of profit by researchers who have received their samples.30 With regard to the objections of research subjects, one may observe that a frequent argument in favour of providing individuals with exclusive proprietary rights over their genetic material is that it would be a way of ensuring that the benefits of genetic research are not withdrawn from the people who have participated in the research and who need to be able to benefit from its results (Merz et al., 2002). That research subjects engaged in human genome research must be protected is not seriously challenged by anyone, but benefit-sharing, the distribution of profits that may accrue to commercial enterprises, governments or academic institutions on the basis of the participation of particular individuals or communities in the research, is currently the subject of extensive discussion.31 Providing a right to share the health and financial benefits arising

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from research performed on their biological samples would amount, according to those who favour a proprietary approach to the relationship in rem between the sample source and the genetic material, to giving participants in the research the power to orientate it. In a dispute that resulted in the famous case Greenberg v Miami Children’s Hospital, several families affected by Canavan’s disease, a rare, fatal and recessive genetic disorder, who had provided researchers with their children’s tissue samples for research purposes, objected to the patenting of the gene and to the royalty fees charged on each test for the disorder by Miami Children’s Hospital (where the mutation involved in the disease had been discovered by researchers using the samples provided by the families). The families involved in the research hoped that research would allow the development of prenatal genetic tests and new treatments for the disorder and brought an action on grounds including lack of informed consent, breach of fiduciary duty, unjust enrichment (benefits were conferred in the guise of donated samples, the genetic information derived from them, and monetary support from the families to the researchers), fraudulent concealment of the researchers’ true intention, breach of the joint venture agreement, misappropriation of trade secrets (lodged in the Canavan Register constructed by the plaintiffs), and conversion (in this last respect, the plaintiffs claim proprietary interests in their samples, the genetic information therein and information contained in the register).32 In a previous case, Moore v Regents of the University of California,33 it had been decided by the Supreme Court of California that ‘(1) a physician must disclose personal interests unrelated to the patient’s health, whether research or economic, that may affect the physician’s professional judgment; and (2) a physician’s failure to disclose such interests may give rise to a cause of action for performing medical procedures without informed consent or breach of fiduciary duty’. In Greenberg, however, where there was no direct relation of care between the researchers and the ‘donors’, it was finally decided that no such obligation existed to disclose the financial interests involved in the research and the prospect of patenting the results. Recently, PXE International, a foundation that helps to identify and solicit participation from families affected by pseudoxanthoma elasticum (PXE) – a rare genetic disease thought to affect 1 in 25,000 people, which causes calcium to accumulate in connective tissue, resulting in symptoms including loss of vision, gastrointestinal bleeding and heart disease – established a registry and repository. It raised money to support studies through the use of these resources, and negotiated with researchers to whom it provided support and access to biomaterials for research. Through the foundation, researchers and research subjects agreed, in a Material Transfer Agreement, that PXE International would retain authorship of papers and ownership rights in any future patents. They agreed to fill a joint patent request on the results of PXE’s research. The joint venture stipulates that economic benefits will be shared between the PXE foundation and researchers. Whether courts will

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consider those agreements to be valid remains to be seen. In August 2004, though, the Unites States Patent and Trademark Office awarded a patent to five co-inventors of the gene associated with PXE. For the first time ever, one of the co-inventors acknowledged by the United States Patent and Trademark Office was a lay patient, an advocacy leader and mother of two children affected by the disease. The concept of property of oneself, indirectly acknowledged by the United States Patent and Trademark Office in the form of a patent granted to someone who was not an inventor but who rather represented the donors, may be particularly attractive, more generally: ‘[t]he growing importance of the moral principle of respect for individual autonomy in healthcare ethics is apparently associated with popularity of the image of the body as property’ (De Witte and Ten Have, 1997). Symptomatically, the ‘obvious’ mechanism that comes to mind when concerned with the need to guarantee that donors’ interests are not forgotten upon the granting of a patent, has been the allocation of new property rights to donors over their biological samples and information. The logic behind this support for property rights of donors, especially in countries where privacy is understood as a negative right, a right of non-interference, rather than as a positive entitlement, is precisely that the negative right of privacy cannot provide for any continuing control over personal matters once they enter the public sphere.34 Other mechanisms might have been available that would have demanded the revision of patent laws, but despite all the critiques and difficulties generated by gene-patenting, patents in the genetics field are mushrooming. This is partly down to the resilience of the idea that allocating private property and governing through the laws of the market is necessarily more efficient than keeping things in the public domain, notwithstanding empirical findings to the contrary. In a Foucauldian tone, Lawrence Lessig observed in this regard that: A time is marked not so much by ideas that are argued about, but by the ideas that are taken for granted. The character of an era hangs on what one need not question; the power in a particular moment runs with the notion that only the crazy would draw into doubt . . . sometimes a society gets stuck because of an idea it can’t quite question, or dislodge. Sometimes the idea sticks the society. And when that happens, the hardest part of political action – the hardest part of changing a part of society – is to get people to see how this taken-for-granted idea might be wrong. To get people to believe that there might be something contestable about what seemed unquestionable; or even to get them to see that the story is more complex than the simple – it’s morning, same as it ever was, I’m about to be fed – account that is, for most, undeniable. And so it is with us. We live in an era when the idea of property is just such a thought, or better, just such a non-thought; when the importance and value of property is taken

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for granted; when it is impossible, or at least for us, very hard, to get anyone to entertain a view where property is not central; when to question the universality and inevitability of complete propertization is to mark yourself as an outsider. As an alien. (Lessig, 2002) The time has come, it seems, to question the unquestioned. In the domain of gene-patenting, our entrance into the ‘post-genomic era’ and the acknowledgement of the complexity of biological processes and their interaction with the environment provide additional reasons to challenge the idea and practice of gene-patenting. Since the ‘monist’ definition of genes does not seem valid anymore, further questions arise regarding the basis gene patents are in fact granted on: do patents relate to the ‘chemical compound’ or the ‘material’ portion of DNA that is identified as a ‘gene’ or a genetic sequence? Yet, in order both to be identified as a ‘gene’, and to comply with the ‘utility’ requirement (in the United States) and the industrial application requirement (in Europe) of patent law, the portion of DNA identified as gene has to be linked to a ‘function’.

D. The power–knowledge nexus in the post-genomic era Michel Foucault’s insightful observations about the power–knowledge nexus35 provide a very useful analytical framework for studying governance in the ‘post-genomic’ era. Knowledge, in Foucault’s work, does not refer to science. The combination of the visible – that is, the evidence – and the utterable or articulable does not function to represent a pre-existing world, but rather to produce a new type of reality, constituted by new models of truth. Each epoch’s layout of visibility and utterability makes history by deconstructing previous realities and meanings (Foucault, 1980: 43, Deleuze, 2004: 43). Knowledge, according to Foucault, refers to each epochal layout of what may be expressed and seen. In turn, the utterable and the visible shape actual discourses and perceptions. As well as the metaphorical nature of knowledge, a shift in the modes of knowledge production must also be emphasised: rather than merely discovering nature’s secrets, scientists increasingly produce knowledge in the context of problems and applications. Gottweis’s recent account of the emerging forms of governance in genomics and post-genomics confirms that ‘[A]s predicted by critics in the early 1990s, the era when scientists decided about the direction of their research seems to be history. Scientists are now obliged to respond to calls for tenders issued by governments, the European Union and large companies following economic and business-strategic criteria.’36 Isabelle Stenghers (2002: 62–7) observed that, because the development of human genetic science today depends heavily on private investment by the pharmaceutical

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industry, and because such investment is heavily dependent on prospects of market returns, financial and cultural credits are granted to the development of genetic tests that coalesce a wide range of disparate interests, including the interests of insurance companies, genetic tests producers, employers, criminologists, . . . namely all those who have an interest in transforming a statistical difference into an instrument for selecting, controlling and classifying people.37 In return, the conceptualisation of problems – and definitions of disease, disability, ‘abnormality’ – is also increasingly reliant on the availability of biotechnological diagnostic and prognostic tools (Koch and Svendsen, 2005). The ‘genetic secrets’ metaphor38 is misleading in this regard as it suggests the spontaneous germination of knowledge from the genome itself and tends to hide both the teleological nature of scientific discoveries in the field of genetics, and the fact that the search for those genetic secrets does not involve the ‘genes’ exclusively: it also involves the selection – on phenotypic, visible grounds and perceptual episteme – of groups of research subjects. Furthermore the selection of those visible, known phenotypes dictates what will be searched for. Social willingness to individualise risks, together with the belief that personal information is the most efficient and reliable input for evaluating risks, predicting and influencing behaviours (including market behaviours) and reducing uncertainty,39 thus encourages the development of new genetic tests that provide the statistical proofs required to classify people within an increasingly fragmented network of social categories and markets. Human genetics not only discovers pre-existing truths; it also creates new truths, new medically, socially or economically useful patterns of classification that, contrary to prevailing assumptions, are not articulated exclusively on natural pre-discursive and pre-political empirical realities.40 Yet the Human Genome Project and genetic science enjoy an a priori positive perception of scientific purity that silences questions concerning the way they have come to control the framing of enquiries about human nature and biology. This silence increases the space between the enonçable and the visible, thereby enlarging the margin between signifier and signified, where myths grow and policies are targeted at ghosts.

Notes 1 For a discussion of the responsibility of scientists for the choice of models and language, see Nagl (2005): ‘At the most basic level, the representation of primary data, design decisions about the genome databases determines what uses can be made of the data – what can be compared with what. Further interpretation of the data and the dissemination of this information also depend crucially on the medium of language. Scientists occupy a critical position in this flow of ideas and metaphors from the wider culture to science and vice versa. Their agency is constituted by participation in both scientific and cultural discourses; they are transmitters of meaning-making representations in both directions. Therefore scientists as moral agents carry some responsibility for the language they use and the representations of the world and human nature they create.’

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2 See World Health Organization, 2002: 73–5. 3 The rhetoric of progress emerged in an era of political revolution. Progress was, in the Enlightenment era, a revolutionary doctrine bound to the radical struggle for freedom from feudal forms of domination. The enlightenment belief in progress has evolved to become a technocratic conception of progress, detached from the goals of political and social liberation. See Marx (2002). The rhetoric of progress today serves the rhetoric of growth. 4 See Bachelard (1938: 14–9): ‘la connaissance du réel est une lumière qui projette toujours quelque part des ombres. Elle n’est jamais immédiate et pleine’. 5 See Lemke (2004). 6 See Moss (1995): ‘[A] radical contextualist challenge to context transcending philosophical notions of reason and truth has come from both sociologically oriented science studies and American neo-pragmatists such as Richard Rorty.’ See also Lyotard (1979). 7 My translation from Lacan (1965): ‘[L]a science s’y l’on y regarde de près, n’a pas de mémoire. Elle oublie les péripéties dont elle est née quand elle est constituée; autrement dit une dimension de la vérité que la psychanalyse met là hautement en exercice. Il me faut préciser: on sait que la théorie physique ou mathématique après chaque crise qui se résout dans la forme ou le terme employé de théorie généralisée ne saurait nullement être pris pour vouloir dire simplement un passage au général; on sait qu’elle conserve souvent à son rang ce qu’elle généralise de sa structure précédente. Ce n’est donc pas cela que nous disons, ni visons, c’est le drame, le drame subjectif que coûte chacune de ses crises. Ce drame est le drame du savant, il a ses victimes dont rien ne dit que leur destin s’inscrit dans le mythe de l’Oedipe. En tout cas c’est une question pas très étudiée.’ 8 Lander, for example, enthusiastically proclaimed that ‘[W]e are living through one of the greatest scientific revolutions in history: the “information revolution” in genetics. The revolution is leading to a deep understanding of biological processes and is uncovering the molecular basis of many human diseases and susceptibilities. It is also confronting society with a vast array of choices, and presenting each individual with the question of what knowledge to seek and how to act on that knowledge’ (Lander, 1998). 9 ‘I mean, for instance, not that the heart once formed, fashions the liver, and then the liver fashions something else; but that the one is formed after the other (just as man is formed in time after a child), not by it. The reason of this is that so far as the things formed by nature or by human art are concerned, the formation of that which is potentially brought about by that which is in actuality; so that the form of B would have to be contained in A, e.g., the form of liver would have to be in the heart – which is absurd’ (Aristotle, 1979 [350BC]). 10 K E Von Baer (1828), Entwicklungsgeschichte der Thiere. Bornträger, Königsberg. 11 ‘Let’s agree that in our model of a genetic explanation S1 will always represent some element of coding DNA, that Sn our explanandum, represents a phenotypic trait, and that there are n-many intervening stages in between. Logically speaking S1 need not have any more of a privileged status with respect to Sn than any of the other stages or factors in the sequence. If, for whatever reason, we were to favour the claim that Sn was largely prefigured by S1, then we would be advocating a gene-centred or preformationistic model of developmental causation. Alternatively, if we were to favour a view in which S1 was not so privileged and Sn was the result of all of the particularities of S1 through Sn-1, then our model could be characterised as describing a form of epigenesis.’ (Moss, 2004a) On the struggle between preformationist and epigenetic theories, see Moss (2002; 2004b). 12 The National Human Genome Research Institute’s website is replete with such

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Genetic knowledge and the rise of genetics as a new perceptual regime metaphors. ‘The Human Genome Project (HGP) was one of the great feats of exploration in history – an inward voyage of discovery rather than an outward exploration of the planet or the cosmos; an international research effort to sequence and map all of the genes – together known as the genome – of members of our species, Homo sapiens. Completed in April 2003, the HGP gave us the ability, for the first time, to read nature’s complete genetic blueprint for building a human being.’ (http://www.genome.gov/10001772) The blueprint metaphor is widely used in exegetical contexts: work of the Human Genome Project has allowed researchers to begin to understand the blueprint for building a person. (Genetics Home Reference, the National Library of Medicine’s website for consumer information about genetic conditions and the genes or chromosomes responsible for those conditions. http://ghr.nlm.nih.gov/info=genomic_research/ show/description.) See Oyama (2000) and Moss (1992). ‘L’aspect trés mécanique et même technologique du processus mérite dêtre souligné. Les interactions successives des différents composants intervenant à chaque étape pour aboutir à un polypeptide en voie d’assemblage, résidu par résidu, à la surface d’un constitutant (le ribosome) comparapromoterable à une machine-outil qui fait avancer cran par cran une pièce en train d’être façonnée, tout cela fait penser irrésistiblement à une chaîne de production dans une usine de mécanique’ (Monod, 1970: 143). See Johnson (1999: 358–9), commenting that the choice, by Jacob, of his book title, La logique du vivant, indicates the conceptual opposition existing between ‘le vivant’ and ‘la vie’. See Arendt (1994[1961]). J Kristeva described Hannah Arendt’s conception of human essence or nature as follows: ‘Le ce que se réduit aux apparences sociales et aux attributs biologiques. Bien que les qualités, les dons, les talents, les défauts puissent singulariser l’individu, ces particularités renvoient à un ce que, spécimen qui se perd dans l’anonymat de l’espèce, ou dans la vie au sens naturel du terme – une vie biologique dont l’être humain doit s’extraire pour conquérir sa spécificité. . . . Ni vie de l’espèce, ni solipsisme: le qui s’arrache aussi bien à la nature et à la société – qui l’objectivent comme un élément soit de l’espèce, soit de la société ménagère des producteurs – qu’à l’isolement de l’appropriation de soi’ (Kristeva, 1999: 276–9). One has to distinguish here the notion of fatalism, involving inescapable aspects of life, from the notion of determinism, which describes situations where what one chooses is determined by factors outside our control. Fatalists believe that what will happen may not be changed by any choice of ours, whereas determinists may believe that our choices change the outcomes but that our choices are determined by factors outside our control. For a refutation of behavioural genetic determinism, see Ehrlich and Feldman (2003). Walter Gilbert, for example, declared in 1991, that when the human genome had been sequenced, we would know what it is to be human (Gilbert, 1993). In her PhD dissertation on Monogenic, Multigenic, and Polygenic Determinants of Cancer Risk prepared for the MIT, Helena Banava, for example, observes that ‘Risk can be genetic or non-genetic. Non-genetic factors, such as chemicals, infectious agents, and memes are lumped together under the umbrella of “environmental” (A meme can be thought of as a cultural virus, an idea, behavior, style, or usage that spreads from one person within a culture, and may confer non-genetic risk.)’ (Banava, 2002: 8–9). Lumping together all non-strictly genetic risk factors is the attitude that prevails among genetic scientists. See also Herbert (2005: 181).

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21 See the European Directive 98/44/CE, Article 3: ‘1. For the purposes of this Directive, inventions which are new, which involve an inventive step and which are susceptible of industrial application shall be patentable even if they concern a product consisting of or containing biological material or a process by means of which biological material is produced, processed or used. 2. Biological material which is isolated from its natural environment or produced by means of a technical process may be the subject of an invention even if it previously occurred in nature.’ See also the US Code, Title 35, Part II, Chapter 10, § 101: ‘Whoever invents or discovers any new and useful process, machine, manufacture, or composition of matter, or any new and useful improvement thereof, may obtain a patent therefore, subject to the conditions and requirements of this title’; § 103.(b) (1) . . .: ‘a biotechnological process using or resulting in a composition of matter that is novel under section 102 and non-obvious under subsection (a) of this section shall be considered non-obvious if – (A) claims to the process and the composition of matter are contained in either the same application for patent or in separate applications having the same effective filing date; and (B) the composition of matter, and the process at the time it was invented, were owned by the same person or subject to an obligation of assignment to the same person. (2) A patent issued on a process under paragraph (1) – (A) shall also contain the claims to the composition of matter used in or made by that process, or (B) shall, if such composition of matter is claimed in another patent, be set to expire on the same date as such other patent, notwithstanding section 154. (3) For purposes of paragraph (1), the term ‘biotechnological process’ means – (A) a process of genetically altering or otherwise inducing a single- or multicelled organism to – (i) express an exogenous nucleotide sequence, (ii) inhibit, eliminate, augment, or alter expression of an endogenous nucleotide sequence, or (iii) express a specific physiological characteristic not naturally associated with said organism; (B) cell fusion procedures yielding a cell line that expresses a specific protein, such as a monoclonal antibody; and (C) a method of using a product produced by a process defined by subparagraph (A) or (B), or a combination of subparagraphs (A) and (B).’ 22 http://www.psc.edu/general/software/packages/genbank/genbank.html. 23 Human Genome Project Information, ‘the Human Genome Project and the Private Sector’, http://www.ornl.gov/sci/techresources/Human_Genome/project/ privatesector.shtml. 24 Thomas Jefferson was opposed to the principle of intellectual property: ‘If nature has made any one thing less susceptible than all others of exclusive property, it is the

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action of the thinking power called an idea, which an individual may exclusively possess as long as he keeps it to himself; but the moment it is divulged, it forces itself into the possession of everyone, and the receiver cannot dispossess himself of it. Its peculiar character, too, is that no one possesses the less, because every other possesses the whole of it. He who receives an idea from me, receives instruction himself without lessening mine; as he who lights his taper at mine, receives light without darkening me. That ideas should freely spread from one to another over the globe, for the moral and mutual instruction of man, and improvement of his condition, seems to have been peculiarly and benevolently designed by nature, when she made them, like fire, expansible over all space, without lessening their density at any point, and like the air in which we breathe, move, and have our physical being, incapable of confinement or exclusive appropriation. Inventions then cannot, in nature, be a subject of property’ (Thomas Jefferson, 1813). 25 See Outterson (2005), Cohen and Arora (2003), Cai (2004), Hubbard and Love (2003) and Eisenberg (1989). In the field of genetics at least, patents on basic research inputs – ‘research tools’ – impede rather than support university research. However, the provocative suggestion has been made by some authors that the increased costs imposed by patented research tools may encourage ‘paradigm shifts’ and innovation in biomedical science by forcing researchers to find alternative hypotheses, in order to develop their research without relying on patented tools. See for example (Lee, 2004: 689): ‘Within the anti-commons reality of modern biomedical research, patents can frustrate downstream development and create an incentive to fundamentally reconceptualise research problems. Paradoxically, intellectual property protection in the biomedical field may actually function as shallow for technological progress but deep for scientific purposes. Christopher Hazuka asks the rhetorical question, “[I]s the patent system promoting innovation overall when thousands of laboratories, physicians, and scientists must . . . pay for the right to study or use [a particular] DNA sequence to develop therapies?” Considering only the conditions most conducive to alternative theory generation, the answer may be a surprising yes’ (Hazuka, 2002). Lee’s approach, moving beyond the utilitarianism common to both the traditional and the anti-commons theories focusing on the positive or negative impact of patents on technological progress, moving beyond the level of applied science, questions the relationship between patents and the advancement of scientific theory, that is, the scientific community’s conceptual understanding of the basic structure and properties of natural phenomena. Patents, because of their ‘disincentive’ impact on research using pre-patented tools, make continuation of ‘normal science’ costly. Lee uses the phrase ‘normal science’ according to Thomas Kuhn’s definition of it as a scientific paradigm, a dominant theoretical framework. Normal science ‘means research firmly based upon one or more past scientific achievements, achievements that some particular scientific community acknowledges for a time as supplying the foundation for its further practice’. ‘Normal science often suppresses fundamental novelties because they are necessarily subversive of its basic commitments.’ (Kuhn, 1996) ‘In traditional patent theory, patents provide an incentive to innovate in order to receive payments from others; in an anti-commons or Kuhnian sense, patents provide an incentive to innovate in order to avoid paying someone else and accepting exogenous constraints on one’s research. These legal and economic considerations shore up existing empirical, epistemological, and reputational incentives for challenging dominant paradigms. Consistent with Kuhn’s framework, patents can induce failures of normal science that then provoke paradigm shifts’ (Lee, 2004: 687).

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26 US Patent No 6,025,154 ‘Polynucleotides Encoding Human G-Protein Chemokine Receptor HDGNR10’, granted in February 2000. 27 ‘Although the genetic code is defined as the universal dictionary for the conversion of DNA to protein, it is in many instances regarded as the particular DNA sequence of an organism. The “one’s genetic code” regards an individual genome as a distinct code. Although each genome has a distinct DNA sequence and could be regarded as a code for a particular organism, that is not the formal definition of the genetic code. The formal definition is that the genetic code is the set of invariant relationships between DNA and protein’ (Kane, 2004: note 5). 28 See UNESCO’s Universal Declaration on the Human Genome and Human Rights (1997), Article 1: ‘The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity. In a symbolic sense, it is the heritage of humanity.’ 29 Should the isolation of a particular gene by cloning be considered as an invention and therefore be covered by a patent? The automated cloning of DNA fragments is a routine process and does not involve an inventive activity. If isolating a gene were enough to claim a patent, no space would remain for non-patentable ‘discoveries’ in the field of genetics. 30 See OECD (2004) and Gold et al. (2004). 31 See for example the HUGO Ethics Committee’s statement on Benefit-Sharing, 9 April 2000, http://www.Gene.ucl.ac.uk/hugo.benefit.html. 32 Greenberg v Miami Children’s Hospital Research Institute Inc, 264 F.Supp.2d 1,064 (SD Fla. 2003). 33 Moore v Regents of the University of California, 793 P.2d 479 (Cal. 1990). 34 ‘. . . if an individual consents to provide tissue samples for research purposes she loses personal control of those samples for all time coming. She is not in a position to control the fate of the samples by exercising her right to privacy. And, while her privacy regarding any information derived from those samples may continue to be protected, any residual authority depends on the nature of her original consent and, more importantly, on the assumption that its terms will not be violated’ (Laurie, 2002: 301). 35 From his analysis of Nietzsche, Foucault developed his conceptualisation of the knowledge–power nexus: ‘Nietzsche veut dire qu’il n’y a pas une nature de la connaissance, une essence de la connaissance, mais que la connaissance est, chaque fois, le résultat historique et ponctuel de conditions qui ne sont pas de l’ordre de la connaissance’ (Foucault, 1954–1975: 1,419); ‘La généalogie, elle, rétablit les divers systèmes d’asservissement: non point la puissance anticipatrice d’un sens, mais le jeu hazardeux des dominations’ (Foucault, 1954–1975: 1,004–24). ‘Far from preventing knowledge, power produces it. If it has been possible to constitute a knowledge of the body, this has been by way of an ensemble of military and educational disciplines. It was on the basis of power over the body that a physiological, organic knowledge of it became possible’ (Foucault, 1980). 36 See Gottweis (2005). See also Gibbons et al. (1994) and Brown (2000). 37 See also Lippman (1991). 38 ‘Before the last half of the twentieth century, human genetic secrets belonged exclusively to nature, they were locked securely within genes . . . Today the concern has shifted to a different type of genetic secrets. The secrets no longer belong solely to nature. Some belong to humans as well’ (Rothstein, 1997). 39 ‘The liberal state, and the twin principles of Enlightenment scientism and marketbased rationality upon which it rests, are centrally implicated in the destruction of privacy . . . Our concern with private information is not its privateness or its

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prurience, but its potential to be converted into profit. Within society more broadly, the impetus for the destruction of privacy is a perceived equivalence between information processing and truth.’ (Cohen, 2001) 40 See Duster (2003: 3): ‘There is an . . . important question: Why, in any given society, do studies of heritability focus upon trait A versus B or behavior C versus D? Once the credibility of the truth claim is bracketed, it is possible to see how a sociology of knowledge provides some answers, however tentative, that are directly related to consequences that ensue with the formation of organisational developments and institutional machineries.’

Chapter 3

Policy implications: discourses of genetic enlightenment as new disciplinary devices

What is at stake is this: How can the growth of capabilities be disconnected from the intensification of power relations? (Michel Foucault (1984b), ‘What is Enlightenment?’, in Paul Rabinow (ed.), The Foucault Reader, New York, Pantheon Books, 1984)

A. A reluctance to acknowledge the need for social, public and collective remediation of individually experienced disadvantages Significantly, the ‘construction of risks’, that is, the translation of uncertainty into calculable probabilities, happens at a varying pace and has varying impacts on the orientation of action depending on the identity of the agent expected to act to prevent or mitigate the potential loss. Although, for example, ecological risks are often denied existence before the damages are actually produced (whereas a manner to prevent those risks would be to slow down the pace of industrial production and consumption (Beck, 2001: 62)), individual genetic risks are, on the contrary, granted an ‘invasive’ existence well before the first symptoms potentially appear – an approach that conveniently shifts to the individual ‘at risk’ much of the responsibility to avoid, prevent or mitigate adverse outcomes. Epidemiological studies have for instance found important correlations between Parkinson’s disease and exposure to pesticides, herbicides and industrial solvents, (Pesticide Education Center, 2002; National Institute of Environmental Health Sciences, 2003; National Institute of Health, 1999) but these studies have attracted much less attention than breakthrough hi-tech ‘regenerative’ treatments such as therapies involving human embryonic stem cells. The dominance of biomedical approaches to health that has for some years been criticised by various scholars has become obvious in the ‘genetic era’. Biomedicine is the dominant approach to health matters in the West and in most other parts of the globe. It incorporates a world-view that

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encourages us to see disease (and also, by implication, health) as an internal property of a distinct, isolated human organism. Under the biomedical model, we understand disease as something that affects the body when some internal mechanism becomes disrupted either because of an inborn weakness or flaw or because of some sort of invading alien organism or hostile environment (or a combination of those factors). Because the individual body is the site of health and illness, it is also considered the appropriate site of all interventions aimed at promoting or restoring health. Biomedical practice relies on science and technology to provide accurate surveillance of each body in order to allow for early detection of some breakdown in one of that body’s internal systems. (Sherwin and Simspon, 1999: 121) As a consequence, although discourses of ‘genetic solidarity’, ‘genetic citizenship’, ‘genetic responsibility’ and ‘genetic literacy’ increase the moral, if not legal, duty for individuals to act preventively, to get all available information on their genetic risks and to act responsibly with regard to that information in order to minimise their own risks and risks to their families and communities, and the potential related costs, prevention as a goal does not seem as compelling in the research arena, which is much more focused on attempts to develop high-tech restorative genetic therapy rather than decreasing environmental exposure to genotoxic chemicals. Another example of the tendency to consider selectively the causes of risks situated in the individual body in preference to exogenous factors is the increasing medical profiling of workers and job candidates (Draper, 1999). The ‘new’ genetics calls on individuals to take responsibility for what happens to them, given all the things that they should know about their specific individual genetic vulnerabilities. Causation and moral responsibility, which had been separated since the early twentieth-century rise in insurance as an institution of risk-spreading, especially through workers’ compensation schemes (Handler, 2000), become combined again in discourses of genetic responsibility and self-care. Identifying individuals genetically at risk allows a shift away from risk-spreading to risk-targeting. This is true in the field of insurance – as will be explained in the second part of this volume – and, to a certain extent, in the sphere of employment.1 In this context, the insistence on individual duty to exert ‘genetic responsibility’ correlates with the resurgence of ‘paternalistic’ concerns as justifications for the genetic selection of employees. When job candidates are not ‘rational enough’ to adapt their professional expectations to their genetic risks, are employers allowed to substitute their own judgment for that of the candidates and refuse to hire qualified and suitable persons for their own good? Should ‘genetic responsibility’ be enforced by employers themselves arguing that screening out those particularly at risk is justified by the best interests of the individuals concerned? However, one would also like to note, screening out the most vulnerable workers will also

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prove less expensive for employers than accommodating the workplace to the variety of susceptibilities potentially present in the human population.2 Although work-related accidents and diseases cause one death every five seconds in the world, the World Day on Health and Safety at Work on 28 April 2004 pointed out that information on workplace safety and working conditions receives relatively little attention compared to the increasing focus on specific individual genetic susceptibilities and predispositions. Whereas both the law and public opinion consider genetic screening and genetic testing in an employment context unrelated with concerns for the health and safety of job candidates and employees illegal and unacceptable, the likelihood that genetic information about specific predispositions to diseases or susceptibilities of workers to chemicals or other toxic substances potentially present in the workplace will be used in hiring and placement decisions is presented as one of the most difficult questions the law will have to confront in the postgenomic era.3 Despite the restrictive approach adopted at international and regional levels towards the potential use of genetic information in hiring and other job-related decisions,4 the tension between employers’ obligations resulting from health and safety regulations5 and antidiscrimination policies raises complex dilemmas and disquieting legal uncertainties. I will not address in detail all potential implications of genetic screening and genetic testing in the workplace. The purpose of the following comments is merely to illustrate the complex dilemmas involved when considering the potential inclusion of genetic tests in pre-employment medical examinations or in employees’ health monitoring processes. The principle of reasonable accommodation common to the European and the American disability policies obliges employers to adapt both the workplace and recruitment and assessment processes so as to allow the participation of people with disabilities in the workforce, as long as accommodation does not constitute undue hardship to the employer’s business. Article 5 of the Council Directive 2000/78/EC of 27 November 2000 establishing a general framework for equal treatment in employment and occupation reads as follows: ‘in order to guarantee compliance with the principle of equal treatment in relation to persons with disabilities, reasonable accommodation shall be provided. This means that employers shall take appropriate measures, where needed in a particular case, to enable a person with a disability to have access to, participate in, or advance in employment, or to undergo training, unless such measures would impose a disproportionate burden to the employer. This burden shall not be disproportionate when it is sufficiently remediated by measures existing within the framework of disability policy of the Member State concerned.’6 Section 12112 of the Americans with Disabilities Act of 1990 includes, in its definition of discrimination, both the failure to make reasonable accommodations to the known physical or mental limitations of an otherwise qualified individual with a disability who is an applicant or employee, unless the employer can demonstrate that the

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accommodation would impose an undue hardship on the operation of the business, and the denial of employment opportunities to a job applicant or employee who is an otherwise qualified individual with a disability, if such denial is based on the need of the employer to make reasonable accommodation to the physical or mental impairments of the employee or applicant. Difficult cases may arise in particular when no reasonable accommodation of the workplace can be provided and the applicant or employee still wants to be part of the workforce and perform a job that may put him at risk of adverse health outcomes. Is paternalism justified in such case, or does the applicant or employee’s own choice trump other values such as welfare? How is the balance between freedom of choice and welfare? Are the conditions of the labour market restricting options for candidates and employees such that paternalism is justified to invalidate choices made under conditions of duress? (Bayer, 2003) The crucial question might arise whether an employer would be allowed, or even required, to refuse to hire a fully informed and capable job appplicant willing to take a job for the sole reason that that individual, due to specific genetic susceptibilities, would be at a higher than average risk of being adversely affected by specific chemicals present in the workplace. The Americans with Disabilities Act (ADA) has been grounded on the anti-paternalistic ethos conveyed by the cultural and social trends that have emerged in the 1970s with modern bioethics gradually imposing a principle of individual autonomy trumping medical paternalism, and the ‘rights revolution’ rebutting ‘paternalistic’ public health measures not strictly aimed at preventing ‘harm to others’. The anti-paternalistic philosophy of the ADA is the reason why the ‘threat-to-self ’ defence has not been included in the Act. Yet, the Equal Employment Opportunities Commission (EEOC) had adopted, in 1991, a broad interpretation of the ‘threat to health or safety’ defence that includes threats to the employee’s or candidate’s own health. The Supreme Court unanimously upheld the EEOC’s position that the Americans with Disabilities Act (ADA) allows employers to discriminate against at-risk employees in order to avoid a direct threat to the individual’s health. The EEOC’s position was that the ADA acknowledges the ‘threat-to-others’ defence as an example (non-exhaustive) of the legitimate qualifications that are ‘job related and consistent with business necessity’. The motivation behind the European policy against disability discrimination is not anti-paternalism, but the ‘need to take appropriate action for the social and economic integration of elderly and disabled people’,7 associated with an ethos of activation oriented towards reducing the number of people that depend on social security schemes and including as many people as possible in the employment market.8 I would like to note here the limited meaning of equality under the European directive, and under EC law more generally, where equality is understood as nothing more than the equality of competitors in a marketplace,

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where they are allowed to strive for success free from discrimination. The fact that social security may be the main guarantee against the vicissitudes of life and against the commodifying incentives of the market, which may induce individuals to accept or even demand work in environments or duties potentially dangerous to their health and safety, has been systematically ignored in EC law (Holzleithner, 2005). Yet, universality, and, to a certain extent, unconditionality of social rights based on citizenship rather than performance are necessary to decommodifying the status of individuals vis-à-vis the market. Decommodification is ‘the degree to which [the various welfare states] permit people to make their living standards independent of pure market forces. It is in this sense that social rights diminish citizens’ status as “commodities” ’. (Esping-Andersen, 1990) As the most hazardous jobs are also often the least well paid, and as one may suppose that most people do not wish to endanger their health at work if they have alternative means to get sufficient resources for living, one may guess that adequate social security schemes, by providing sufficient unemployment insurance, indeed decrease the likelihood that individuals willingly expose themselves to severe risks to their health and safety by applying for jobs that might be harmful to their health and safety. The tension is perceptible here between the current trend of European policy to reducing dependence on social security by fostering ‘activation’ of disabled and elderly (among others), and the necessity to maintain an adequate level of social security in order to prevent people from being forced into potentially dangerous choices. The best solution to the dilemma is not necessarily to allow paternalistic rejection of ‘at risk’ candidates and employees, but to ensure that economic prospects do not induce people with disabilities to seek employment that places them at risk. In circumstances where, unusually, some individuals would still choose risky employment, even if sufficient social security is in place and other employment opportunities exist, paternalistic refusal to hire them would not impose on them the welfare risk of poverty. In a famous American case, Chevron USA, Inc v. Echazabal,9 where the United States Supreme Court resolved a prior conflict between the circuit courts on the issue of discrimination against at-risk employees,10 the United States Supreme Court decided that an employer may indeed discriminate against an employee in order to protect him from direct threats to that employee’s health. The decision was not issued in the context of a risk identified on the basis of genetic testing, but regarding an employee with asymptomatic Hepatitis C who had performed various jobs in Chevron USA Inc’s refinery for some twenty years without accident or injury to himself or anybody else. In late 1993, Echazabal was diagnosed as having chronic active Hepatitis C, which has remained asymptomatic since first diagnosed, and rejected for a job he had performed for years because the company believed that his exposure to hepatotoxic chemicals in the refinery would constitute a direct threat to his health.

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The general aim of the ADA was to prevent employers’ paternalistic judgments and prejudices against qualified persons with disabilities from prevailing in employment decisions over the self-determination of persons with disabilities of their own best interests in taking a particular job. However, in Chevron, the Supreme Court, by allowing the employer to single out an employee on the basis that the job would constitute a threat to his own health, contradicts the anti-paternalistic tone of the ADA (Daniels, 2003). The company argued that its decision not to hire Echazabal was based on business necessity: not excluding Echazabal from the workforce could have exposed the employer to future lawsuits for violation of the Occupational Safety and Health Act (1970). An employer’s potential liability under that Act for hiring an individual who consents to a job’s particular dangers is an open question, the Court noted.11 The Court’s acceptance of the ‘threat to self’ defence means that a particularly susceptible or vulnerable job candidate does not have the right to voluntarily expose his health to risks inherent in the workplace. One may provide diverse interpretations or justifications for such a position. The case epitomises the tension between the anti-paternalist philosophy of the American with Disabilities Act and the ethical foundations of occupational health and safety policy. The reasoning applied by the Supreme Court in Chevron v Echazabal would probably hold in the case of an identified genetic susceptibility. According to Olivier De Schutter (De Schutter, 2004) ‘The same solution would apply under European Union law . . ., in an instance where the health and safety regulations adopted by an EU Member State would be denounced as being “overprotective” and as imposing unjustified, and therefore discriminatory, barriers to the employment of persons with disabilities.’ In such circumstances, De Schutter argues, the right of Member States to maintain or adopt provisions on the protection of health and safety at work includes the right for the Member States to prevent an otherwise qualified worker to take a job that would be unsafe for him owing to his specific disability, susceptibility or medical condition, even if employing that person does not put others at risk, and even if that person had fully consented to the risks involved by the job. Indeed, the Directive 2000/78/EC establishing a general framework for equal treatment in employment and occupation states that, with regard to disabled persons (one has to note here that whether asymptomatic persons at genetic risk would be considered as ‘disabled’ is very questionable), ‘the principle of equal treatment shall be without prejudice to the right of Member States to maintain or adopt provisions on the protection of health and safety at work or measures aimed at creating or maintaining provisions or facilities for safeguarding or promoting their integration into the working environment’ (Article 7§2). Whether this would justify a qualified and currently apt candidate to be refused a job for the reason that, given her genetic or other characteristics, the job would increase her risk of becoming ill or disabled in

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the future does not appear obvious, however. On the contrary, the logic of the directive indeed appears to encourage inclusion, with reasonable accommodation, of disabled people, rather than exclusion of ‘at-risk’ but otherwise qualified individuals from the workforce. The ‘threat to self’ defence would thus appear suspicious if it would allow employers to exclude individuals ‘at risk’ from the workforce rather than reasonably accommodate the workplace so as to render it safe for every person qualified and able to perform the required jobs. Allowing employers to judge the best interests of ‘at-risk’ employees would be problematic, as conflicting interests may be involved (Jansson et al., 2000). In contexts where at-risk job candidates or employees do not have reasonable alternatives to choosing to expose themselves to potentially harmful jobs and workplaces, one may also view the acceptability of the ‘threat to self’ defence as confirmation that being identified ‘at risk’, for whatever reason, gives rise to a ‘responsibility’ for the ‘vulnerable’ individual – paradoxically, a responsibility ‘enforced’ by employers – to bear, alone, the costs of their vulnerability. The individual’s responsibility does not result from the paternalistic concerns of government and employers for the health and safety of individual workers so much as from the utilitarian imperative of minimising the total damage and ensuing losses arising in society. From a utilitarian perspective, however, one by definition indifferent to the distributive impacts of policies, the question remains as to who, the ‘at-risk’ worker or the employer, is the most able to reduce efficiently the aggregated amount of work-related harm at the lowest social cost. Localising the ‘source’ of a risk in the body of the individual worker or job applicant does not necessarily lead to the conclusion that this individual’s efforts to minimise his risks – namely his waiver of the job – will result in decreased workplace hazards overall. The cost that such a ‘responsibility’ for his own health and safety imposes on the job candidate or employee is rarely precisely assessed. Yet, if one speaks of aggregate welfare, these individual costs should also be weighed in the balance. Evaluating and balancing these costs against the costs to an employer if he were to provide a safe workplace for the job candidate or employee should take into account, among other things, the probability of the person concerned finding another job, equally rewarding and fitting his competencies, and the possibility, at an acceptable cost, for the employer to transform the workplace to make it safe for all workers whatever their individual sensitivities, susceptibilities and predispositions.12 Genetic testing and screening of employees and job candidates may also allow employers to decrease the costs of workers’ compensation by identifying individual genetic predispositions as the main cause of injury, thus absolving themselves from compensating injured workers with genetic predispositions in case of workplace injury. For example, the United States Equal Employment Opportunity Commission filed a federal lawsuit on 9 February 2001 against Burlington Northern Santa Fe Railway who

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required predisposition genetic testing (of chromosome 17 deletion) of employees who filed claims for a wrist condition called carpal tunnel syndrome (CTS), believed to be caused by repetitive hand motion. The charge involved against Burlington Northern was that the testing policy violated the Americans with Disabilities Act. EEOC alleged that a railroad worker who refused to provide a blood sample after filing an injury claim was threatened with dismissal. Under the ADA, a company cannot require a medical examination to determine if an individual has a disability or to determine the nature or severity of the disability unless the test is related to the employee’s ability to perform the job. The company claimed that it did not violate the ADA because it only tested those who already had a condition that arguably affected their ability to do their jobs. That company’s specific use of genetic testing appears to have been misguided for several reasons. Geneticists say the predictive value of the test was speculative and the workers were apparently tested without their knowledge and consent. But what if the test had been more definitive and the employees had consented? Can genetic information ever be considered in making an employment decision? This lawsuit marked the first time EEOC had challenged genetic testing. Only three days after the lawsuit was filed, Burlington Northern agreed to stop the practice. A recent case illustrates once again the dilemma. In September 2005, the issue of DNA testing surfaced in sport when the Chicago Bulls made a $5 million/year engagement offer to Eddy Curry, a basketball player, conditional upon his taking a DNA test for susceptibility to cardiomyopathy – a heart condition that, combined with arrhythmia, could prove fatal to an athlete. Whereas the explicit justification provided by the Bulls for their requirement that Curry should take the DNA test is concern for his health and life – a typically paternalistic concern – the team, one may suspect, is above all concerned with limiting the financial risks involved in hiring someone who might develop cardiomyopathy. At a time characterised by the prevalence of narratives of individual autonomy and self-determination, and in an era where non-directiveness and informed consent prevail in discourses about genetic testing, it is hard to believe that the protection of workers against their wish to work would be motivated by concern for their good health rather than by employers’ economic concerns. If one wishes to avoid having to take difficult dilemmas involved in discussions about the ‘threat to self’ defence in cases where a candidate or employee specially vulnerable to specific chemicals present in the workplace or specially susceptible to develop severe health problems as a consequence of taking a particular job, the best way would probably be to prevent economic hardship in general and to make it more improbable that people would wish to take jobs they know would endanger their health and safety. Non-discrimination policies are insufficient to achieve that goal. What is needed is indeed a social security scheme strong enough to decommodify the status of individuals vis-à-vis the job market.

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B. Disciplining individuals through risks and behavioural epidemiology When questioned about the justification of the priority given to the Human Genome Project, compared to other socially useful projects, such as the distribution of funds to the homeless, Daniel Koshland, who was then editor of Science, provided the much quoted answer that ‘[W]hat these people don’t realise is that the homeless are impaired . . . indeed no group will benefit more from the application of human genetics’.13 The reframing of social problems in genetic terms, and the presentation of genes as having a central causal role in biological processes, are contingent upon strategic ignorance and disinterest in anything invisible at that molecular level. Martha R Herbert (Herbert, 2005: 182) observed in this regard that . . . non-genetic tests are subordinate in a commercial framework, not only because they are generally not patentable and less profitable, but also because their results can raise uncomfortable questions about environmental influences that call for social and public and not just personal and private remediation. The genocentric paradigm suggesting that disease, ill health and problematic behaviour have their privileged cause in an individual’s genes tends to disregard alterable social and economic determinants of ill health and behaviour. Indeed, the localisation of risks inside the bodies of individuals – genetic metaphors share the idea that genes can be precisely spacialised, captured in a gaze, charted or measured (Ettore, 2005: 116) – contributes to shadowing the causes of ill health and inequalities that are social or environmental rather than inherent to individuals.14 The new visibility of individual genetic specificities is accompanied by a shift in the social ascription of risks: the external, environmental risk rhetoric is progressively replaced by an internal, individual risk rhetoric, and the obligation for individuals found to be at risk to take all reasonable steps in order to prevent, mitigate and minimise their risks. When examining the evolution of discourses about human genetic counselling, one clearly distinguishes three different periods, according to the objectives, problematisation, normative orientation and practices of genetic counselling. The eugenic aim typical of the 1930s and 1940s to improve the quality of human beings, by segregation, selection, sterilisation and even elimination of those considered defective, was replaced in the 1950s through to the 1970s by objectives of public health optimisation through prevention according to a non-directive genetic counselling ethos respectful of the wishes of parents, considered responsible genetic subjects, to have healthy children. Compulsory sickle cell trait screening in African Americans occurred approximatively at that time, and was officially aimed at increasing African

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Americans’ reproductive freedom. In the contemporary period, the motivation behind genetic research might be said to lie less in the wish to select the specific traits that humans should have and deselect those traits that they wish to get rid of, than in compliance with the ancient principle ‘know thyself’. The expression new human genetics is used mostly to distinguish current molecular genetics from earlier eugenics. The divergence between the new and old genetics is essentially that the new genetics is not presented as implementing any eugenic goal. Although classical medicine had always been focused on diagnostic and therapeutic actions, in the genetic era, medical care might – given the existing gap between the possibilities of prediction and the possibilities of cure – switch to a more ‘contemplative’ attitude driven by the recognition that some of the predicted illnesses may have no cure. One may interpret human genetic research today as being at least equally oriented towards an increasing knowledge of genetic factors associated with human variations, as towards modification and enhancement of present and future human subjects. The duty of care of medical practitioners has in general evolved accordingly: providing information to the patient has become paramount.15 The fascination generated by the Human Genome Project and the ensuing framing of related ethical, legal and social issues have shaped a specific relationship between the individual and his (known or unknown) individual genome, making genetic information central to identity. What gives passion to debates about genetic privacy, the right to know and not to know, etc. is the assumption that genetic status has a central or definitional role in the formation of the self. Symptomatically, human genetics has generated a shift in medical law whereby genetic informational rights have become as fundamental as the rights of physical integrity, which traditionally inspired medical codes of practice and the rules applying to the patient–doctor relationship. Clear and accurate information allows the patient to take informed decisions and to rationally manage his genetic self. Medical malpractice law has sanctioned that evolution, particularly in the context of so-called ‘wrongful birth’ actions where parents claimed damages for the birth of a child following defective information provided by medical practitioners regarding the risks that the child would be diseased.16 Moreover, the duty to warn of genetic risks has been gradually extended to include a duty towards family members of the patient. Human genetics is the privileged tool of a developing predictive medicine, a discipline not primarily directed at preventing or curing illnesses, but focused rather on the gathering and communication of risk information. As scientific knowledge has changed rapidly, transfer of knowledge and a revised understanding of health and disease have to follow. Traditional concepts of health have become obsolete, so have the health policies based on outdated models of health. Health cannot simply be understood any more as “a state of complete physical, mental and social well-being and not merely the absence of disease and infirmity”, as the

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WHO defines, but rather as a process of challenge and response, a process of balancing, which needs understanding, protection, and management by the individual person. Health is not just a status; it is rather the balanced result of health-literate and risk-competent care of one’s physical, emotional, and social well-being and well-feeling, achieved in competent understanding, modification and enhancement of individual genetic, social and environmental properties, with the support of healthcare professionals and through equal access to healthcare services, including information, predictive and preventive medicine.17 The obsession with genetics is accompanied by increasing endeavours to develop the ‘science’ of ‘behavioural epidemiology’. As Ewald pointed out: [P]revention is an attitude which, by principle, relies on trust in science and its know-how. It presupposes the adjustment of knowledge and power, an ever-possible control of power by knowledge. Its utopia, the asymptote of a knowledge always in the process of mastering techniques and practices derived from them, will eventually reach its limit. (Ewald, 2002: 282) Behavioural epidemiology, rather than studying how natural forces (the structure of society and economic stratifications) impact on disease (epidemiology was first created by social scientists in order to help reshape society to make people healthier), studies the impact of people’s lifestyles and behaviours on the occurrence of disease. Behavioural epidemiology helps people to ignore the health impact of socio-economic and environmental conditions and encourages them to focus their attention on their own personal attitude towards their health.18 Behavioural epidemiology is criticised for failing to provide reliable risk evaluation: epidemiological risk estimates rely heavily on statistics, which, as is well known, may only provide reliable indications when performed on large and stable populations over a long period of time. A contrario, the risk estimation process does not work well for small populations or individuals. Estimating health risks on the basis of behaviours is highly problematic from this point of view, as behaviours are highly syncretic and evolving (Alcabes, 2003). Yet, the fact that two out of the six ‘new initiatives’ presented by the National Human Genome Research Initiative for the year 2006 (National Human Genome Reasearch Institute (US), 2006) were concerned with behavioural epidemiology unambiguously attests to the ‘behavioural turn’ in genetic public health. The first project, called ‘US Surgeon General’s Family History Initiative’ is described as follows: Anticipating the changes that sophisticated genetic testing and other genomics advances will have on the United States healthcare system, the

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NHGRI is continuing to work to prepare the American public for the integration of such tools into their own health care. An important but often neglected tool is the family history. Moreover, while advances arising out of the Human Genome Project will soon add important new genomics tools for these tasks, family history will remain highly relevant for years to come. Yet, many individuals are unaware of the medical histories of their relatives, and many health professionals underutilize this information in advising patients about how to maintain good health. Led by the Office of the Surgeon General, the NHGRI, the Office of the Director of the National Institutes of Health, the Centers for Disease Control and Prevention, the Health Resources and Services Administration, and the Agency for Healthcare Research and Quality are working closely to coordinate efforts to increase the American public’s awareness of the importance of family history, to provide accessible methods for easily obtaining an accurate family history, and to increase health professionals’ use of the family history in disease prevention and health promotion. These organizations are teaming up to make Thanksgiving Day 2004, the day that American families traditionally gather together, the first annual National Family History Day. The goals of National Family History Day include: increasing the American public’s awareness of the importance of family history in health; giving the American public a free web-based family history tool to gather, understand, evaluate, and use family history to improve their health; increasing health professionals’ awareness of the importance of family history; giving health professionals tools to gather, evaluate, and use family history information and to communicate with their patients about family history; increasing genomics and health literacy; preparing both the American public and their health professionals for the coming era in which genomics will be an integral part of regular health care. Thanksgiving Day 2004 served as the inaugural National Family History Day. In a phased approach, this year’s initiative focused on increasing awareness of the importance of family history and on laying a foundation to make this an effective annual national campaign. United States Surgeon General Richard Carmona was the public face of this year’s initiative, and NHGRI Director Francis Collins also served as a prominent spokesperson. The agencies involved worked closely with federal, state, and local governmental agencies, voluntary health organizations, health professional organizations, community organizations, federal grantees, and commercial sector partners, and others to reach out to the American people and health professional workforce. A coordinated national communications effort was planned. Notwithstanding the current ‘techno-market driven’ push for preparing the future integration of genomics in public health management, family history

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(revealing the presence of shared genes, behaviours and environment) indeed appears amongst the most consistent risk factors for almost all common diseases, but the questionable, yet unquestioned, presumption of public health policies insisting on family histories as privileged risk factor is that it is a moral, if not a legal, obligation for individuals to adapt their behaviours, lifestyles, etc. to their specific ‘familial risk’ status. The second behavioural epidemiological project is more explicitly called ‘Social and Behavioural Research Branch’ and is described as follows: Last year the NHGRI formed a Social and Behavioural Research Branch within its intramural program. This new branch has the overarching and broad objective to investigate social and behavioural factors that facilitate translation of genomic discoveries for health promotion, disease prevention, and health care improvements. The main focus of the branch is to conduct research on the social and behavioural aspects of translating genomic discoveries into improved health. The branch is currently focused on four conceptual domains: testing risk communications; developing and evaluating behavioural interventions; using genomic discoveries in clinical practice; and understanding social, ethical and policy implications of genomic research. This new branch is already forming relationships with other components of the NIH who work on behavioural research, in an attempt to form productive collaborations in this area. The plan is for this new branch to assist in the translation of basic biomedical research discoveries into practical behavioural interventions related to genetic disorders.19 Central to the rhetoric of the genetic enlightenment as suggested by both the media and the research-business consortiums involved in the commercialisation of genetic tests, is the discourse that genetic risks are not beyond the control of the individuals: genetic testing empowers individuals and allows them to behave responsively towards their own health, the health of their siblings and offspring, and the general health of society. The fact of being diagnosed at genetic risk for a specific disease shifts the individual’s status from being healthy to being an asymptomatic ill person who self-enrols in continuous medical surveillance and monitoring processes.20 In an attempt to dispel popular fears of genetic discrimination by life insurers, Lowden, the medical director of LabOne Canada, a company specialised in providing risk assessment testing for insurance companies, argues that [T]est results should not just lead to dire predictions about outcome. They should stimulate change. We can expect that information about risk will lead to increasing attempts to protect individuals from their genetic mistakes. Changes in lifestyle, nutrition, and other exposures may

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decrease risk. Pharmaceutical or surgical management and possibly genetic manipulation may all improve the outcome of those who are aware of their risk. (Lowden, 2003) As will be more fully developed in the second part of the book, in the genetic context, what is involved in the claim that individuals should get as much genetic information about themselves as they can in order to take genetically enlightened decisions, is a new mode of governance, a governance by genetic risk. Genetic risk information is used as a means of creating the ideal citizen of the post-Keynesian order, that is, the autonomous citizen who makes no legitimate claims on nationally organised collective solidarity but rather exercises his/her capacity for choice and manages his/her own self-care.21 The genetic essentialist foundations of the imperative of ‘genetic self-knowledge’ The challenges that the new human genetic knowledge raises for the law have been compared to the earlier paradigm shifts encompassed by the discovery of Freudian psychoanalysis (Elliott, 2001–2002). Resemblance to Freudian psychoanalysis is striking if one takes the time to look closely at the processes involved in genetic testing and counselling. It is paradoxical that, despite consisting essentially in a linguistic fiction, the ‘gene’ functions in folk etymology as the profane analogy to religious truth, as incapable of deception and as the locus of authenticity (Braman, 2004, Pugliese, 1999). Like psychoanalysis, genetic counselling is meant to render visible to the subject hidden elements of his identity as an individual at risk that the subject himself does not know; it is meant to render visible the genetic structure of the subject’s biological destiny. Like the unconscious in Freudian psychoanalysis, the genome is conceived, in the pervading genocentric dogma, as the general and diffuse cause of everything. Similarly to psychoanalysis, the genetic text that is rendered visible through the genetic tests needs further expert interpretation in order to become true information about genetic risks. The genetic text remains blind to itself absent deciphering by an expert with the hermeneutic power to enunciate the truth.22 Existentialists have objected to this kind of ‘essentialism’ by emphasising that the belief that more information about oneself necessarily increases one’s autonomy or liberty presupposes, among other things, that the self is something one can know, that the self has a nature, a definite structure independent of whether or not they are known, that there is a persisting self that is knowledgeable: To say that one is free only if one understands oneself (even if this is not a sufficient condition of freedom) presupposes that we have a self

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to be understood – that there is a structure correctly described as human nature which is what it is, obeys the laws that it does, and is an object of natural study. (Berlin, 2000) Despite the insistence of feminists, post-structuralists and others on the impossibility of fixing identities or essences in advance of their representation, the genome seems today to play the role of the internal structure of the self in the popular imagination. The kind of genetic essentialism that dominates discussions about the right to know and the right not to know one’s genetic status perpetuates the longstanding individual and liberal notion of the Enlightenment subject as a centred and unified individual ‘whose center consisted of an inner core which first emerged when the subject was born, and unfolded with it, while remaining essentially the same – continuous or identical with itself – throughout the individual’s existence. The essential center of the self was a person’s identity’ (Hall, 1993: 275). In the liberal perspective, each individual is viewed, in principle, as having a certain private realm or sphere of non-interference that is protected by a rather strong concentration of rights that trump, among other things, considerations of the general welfare and the deep intrusion into one’s life of other people’s projects and concerns (Frey, 2000).23 Yet, advances in human genetics have induced important transformations in medical practice that are resented as a disruption in the legal sphere. At the fundamental level of philosophical anthropology, the genetic representational regime disrupts liberal representations of the modernist sovereign subject. Some feminists, like Isabel Karpin (Karpin, 2005), Ann Sommerville and Veronica English24 insist that the genetic challenge to the liberal individualist conceptions of the subject provide the beneficial opportunity to deconstruct the liberal myth of the self-sufficient, autonomous individual and to acknowledge the inherent interdependency of human beings. However others, like Janet Dolgin, worry that the emerging notion of the genetic group, and the shift in the locus of privacy and identity from the autonomous individual to the genetic group threatens longstanding Western values that depend upon the ideological centrality of autonomous individuality.25 Indeed, legal protections of the individual subject in ‘genetic matters’ are contradicted by the unavoidably collective nature of genetic information. The subject of genetic information and of genetic privacy, the patient entitled to genetic confidentiality, is not even easily identifiable in the genetic context: isn’t the subject of genetic information the whole ‘genetic group’ or genetically-related family? Radical post-structuralist feminist scholars even suggest that the ‘individual’ deserving legal protection is irreducible to the spatially identifiable, physically bounded subject (Karpin, 2005). The ‘subject of genetic information’ is a transgenerational, collective, ‘non-material genomic body’ (Scully, 2005: 51), an ‘information structure’26 that overflows the traditional limits of

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material embodiment that characterise the ‘unitary vision of the subject’,27 that is, the ‘legal subject’ of privacy, confidentiality and informed consent regulations. Genetic privacy laws and informed consent rules are desperately trying to re-institute a correspondence between the ‘subject’ of genetics and a liberal individual subject, a self enclosed in a definite and unique morphology once and for all but failing to do so. Identity, in the genetic age, is colonised by otherness. The irony of rules and discourses of genetic privacy, individual choice and informed consent, genetic empowerment through genetic literacy and genetic responsibility that are being used to discipline individuals in the neoliberal society, is that they are built precisely on the liberal model and according to the modernist morality of the autonomous, independent self that genomic conceptualisations contribute to making obsolete. The ‘subject’ targeted by the new medical genetics overflows the traditional liberal unit of the individual in several ways: In space, genetic ‘interests’ exceed the boundaries of the individual’s body. As a consequence, the dual doctor–patient relationship seems prone to explode into a multiple doctor–family or genetic group relationship. The extension of the medical doctor’s duties towards members of the ‘genetic group’ and the related issue of intra-familial disclosure of genetic information further challenge the exclusive control over his personal information and biological material that are traditionally granted to the liberal individual. In time: genetic testing allows the designation of patients in an anticipatory sense. Although in classical medical practice, the quasi contractual patient– doctor relationship arose because of present or suspected actual symptoms, a genetic test may be offered to currently asymptomatic, healthy individuals. In the legal sphere, that shift is also resented as a disruption: what rights and obligations should the ‘asymptomatic ills’ be allocated by virtue of their ‘status’ as ‘genetically at risk’? Genetic testing is closer to the notion of prognostic than to the notion of diagnostic. Thus most of the time genetic testing doesn’t make known a currently existing health problem in a symptomatic individual but rather reveals, for asymptomatic, healthy persons, a mere probability or a particular susceptibility to some illnesses for which preventive or curative strategy are most often not, or not yet, available. Notwithstanding the uncertainty which characterises the predictions made possible by genetic testing,28 what is new is the identification of a clear genetic causal line (even if genetic make-up is merely exceptionally the exclusive and sufficient cause) going from an identified locus in the genome to the phenotypic manifestation of the disease.29 ‘The chanciness and luck that accompany present-day risk assessment will be replaced by the clear mark of genetic susceptibility in one’s very identity’, notes Jonsen (Jonsen, 1996: 10). One dimension of otherness that genetic information introduces in the individual takes the form of his inescapably anticipated ‘future self’, which the genetically informed individual can no longer ignore. The relationship existing between

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‘genetic self-knowledge’ and autonomy or liberty deserves new assessment in light of that new ‘genetic condition’ of self-experiencing. Intra-familial disclosure and familial management of genetic information Enabling the prediction of disease or the assessment of risk of disease with varying degrees of certainty,30 genetic information is of course important to the tested person,31 but, as mentioned before, may also be crucial to persons who share the same genetic inheritance and are exposed to virtually the same genetic risks,32 namely his or her blood-relatives. Those persons (family members) may sometimes be recognised as having a legitimate and legally protected interest, however not usually raised up to the status of a right to force intra-familial disclosure, but requiring some procedural measures enhancing the patient’s aptitudes to reflect upon the interests of those third parties and to act morally towards them. The moral or legal character of the obligations of the individual directly concerned regarding disclosure of genetic information to family members is a controversial issue.33 The duties owed by one person vis-à-vis his relatives when he is aware of the presence of specific familial genetic ailments (Rhodes, 1998), or when he is asked to cooperate in a familial inquiry in order to establish the results of a genetic test required by one of the members of his family, have yet to be assessed. The questions raised by the new human genetics in this regard are not absolutely novel however. The question that the European Court of Human Rights had to confront in Odièvre v France,34 for instance, involved a woman’s claim to access confidential information concerning her birth and to obtain copies of any documents, public records or full birth certificates in a case where her biological mother had requested that the birth be kept secret and had abandoned her rights to the child. The French law governing confidentiality at birth prevented her from obtaining information about her natural family. The Court concluded that the French law did not constitute, in that case, a disproportionate interference with the claimant’s right to privacy, but nevertheless acknowledged that the right to privacy (Article 8 of the European Convention on Human Rights) protects, among other interests, the right to personal development, and that matters relevant to personal development included details of a person’s identity as a human being and the vital interest in obtaining information necessary to discover the truth concerning important aspects of one’s personal identity. In the United Kingdom, the Administrative Court faced a related question in Rose v Secretary of State for Health and the HFEA35 involving the claim brought by two persons, one who had been conceived by artificial insemination in 1972 (before the Human Fertilisation and Embryology Act of 1990) and one who was born also from an artificial insemination procedure in 1996, both requesting disclosure of information about the respective donors. The

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Administrative Court held that Article 8 of the Human Rights Act of 1998 encompassed the right to respect of ‘genetic identity’ entitling children born from in vitro fertilization procedures to information about their biological fathers. It is far from certain however that a person’s right to respect of her ‘genetic identity’ implies that she has a right to know about genetic test results relating to her blood relatives, nor that her right to know trumps the tested person’s right to confidentiality and privacy. Genetic information, given its collective, inherited character, may inspire doubts about the validity of the classical duties of health practitioners though: to whom do they owe the duty to respect their obligation of confidentiality and beneficence? Moreover, one may wonder if the right to know of the inquirer means his family members are obliged to collaborate in the testing procedure by themselves undergoing diverse tests or by answering the many questions which arise in the context of the familial inquiry. There are indeed other factors, specific to genetic information, which contribute to its shared character. For example, genetic knowledge about individuals may have to be supplemented by information obtained from relatives in order for such knowledge to be meaningful. This problem may be a partially temporary one, due to the fact that there is at present no direct test for the gene itself in many genetic conditions, and a marker or linkage test remains necessary. Linkage tests are now less frequently used, however even where a direct gene test is available, it remains important to confirm the mutation in at least one other affected family member. This is especially important where, as is the case of most genetic disorders, there is more than one form of genetic mutation that causes the disorder (Bell, 2001). How should the twofold opposition between the right to confidentiality and privacy of some and the right to the protection of health of others, and between the right to know of some and the right of others to remain ignorant of their genetic make-up be resolved? Complex dilemmas relating to the familial disclosure of genetic information are worsened by practical difficulties. The dispersion and atomisation of families which is one of the major specificities of our times renders it impossible sometimes to carry out research on relevant blood-related persons, from which one would need to obtain information or to whom one would like to communicate certain information concerning their genetic risks. There is indeed something paradoxical in the attempts to reconstruct genetic families when, precisely, one increasingly witnesses the decomposition and recomposition of biological families several times by generation (Knoppers, 1998b). As a matter of fact, the availability of genetic testing challenges one of the most classical ethical rules governing the patient–doctor relationship: the rule of confidentiality. Because genetic disease is transmitted only by way of procreation, information about genetic disease is unique in that there is a propensity (highly variable) for the condition to be shared by members of a family who are biologically related. The issue of how individual patients and

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their doctors should act in relation to the knowledge that the patient has a genetic condition – specifically, whether the patient and/or the doctor should or must inform relevant members of the patient’s family – is a looming area of medico–legal controversy. There is a tension between the existing legal and professional obligation of the health care professional to keep confidential any medical or otherwise personal information discovered in the context of a medical examination or consultation and his competing obligation to prevent harm to others. In the landmark case Tarasoff v Regents of the University of California,36 the Supreme Court of California ruled that mental health professionals have a duty to provide adequate warning if a patient threatens the life of a third party during counselling sessions. The facts of the case were as follows. Prosenjit Poddar killed Tatiana Tarasoff. Two months earlier, he had confessed his intention to kill her to Dr Lawrence, a psychologist employed by the Cowell Memorial Hospital at the University of California at Berkeley. Tatiana’s parents sued the Regents of the University of California on two grounds: the defendants’ failure to warn the victim of the impending danger and their failure to bring about Poddar’s confinement. The defendants argued in return that they owed no duty of reasonable care to Tatiana, who was not in any doctor–patient relationship with them. But the opinion of the Court was that: . . . the public policy favouring protection of the confidential character of patient–psychotherapist communications must yield to the extent to which disclosure is essential to avert danger to others. The protective privilege ends where the public peril begins. Our current crowded and computerized society compels the interdependence of its members. In this risk-infested society we can hardly tolerate the further exposure to danger that would result from a concealed knowledge of the therapist that his patient was lethal. If the exercise of reasonable care to protect the threatened victim requires the therapist to warn the endangered party or those who can reasonably be expected to notify him, we see no sufficient societal interest that would protect and justify concealment. The containment of such risks lies in the public interest. In the case of genetic testing, should the relevant health professional inform a patient’s relatives that they could be genetically at risk even when the patient does not consent to that disclosure? In another case, Pate v Threlkel,37 the plaintiff asked the Florida Supreme Court to recognise a genetic family as a legal unit. In that case, commenced in the early 1990s, Heidy Pate claimed that Dr J Threlkel, the physician of Pate’s mother, Marianne New, was under the obligation to warn her mother that she suffered from a hereditary disease that placed her children (including the plaintiff herself) at risk of developing the same condition. At the time of

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the suit, the plaintiff had fallen ill and claimed that, had she been warned of her hereditary risk, her own condition would have been discovered earlier and might have been curable. The court recognised a duty owed by the doctor to warn his patient’s child as well as the patient herself, but also stated that, ‘[t]o require the physician to seek out and warn members of the patient’s family would often be difficult or impractical and would place too heavy a burden upon the physician. Thus we emphasise that in any circumstances in which the physician has a duty to warn of a genetically transferable disease, that duty will be satisfied by warning the patient’. However, in Safer v Pack,38 the New Jersey court went further and imposed a duty to directly warn the family members at risk. The facts were quite similar to the facts of Pate v Threlkel: in 1990, Donna Safer was diagnosed with a hereditary form of colon cancer from which her father R Batkin had died 26 years earlier. In 1992, Donna Safer brought a suit against Dr G Pack, her father’s former physician, asserting that he had provided her with negligent medical care, although Dr Pack had never treated Donna or acted as her physician in any way. Donna Safer argued that the physician was obliged to warn those at risk that his patient’s condition was hereditary, so that they might have the benefits of early examination, monitoring, detection and treatment, and thus the opportunity to avoid the most baneful consequences of the condition. The Safer court, unlike the Florida Supreme Court in Threlkel, rejected a limited interpretation of the doctor’s duty to warn (a duty to warn his patient, but not to warn members of that patient’s family directly), and defined a broad duty to warn not only the patient, but also to warn directly those members of the patient’s family at risk of falling ill with the hereditary disease at issue. Judge Kestin explained: ‘Although an overly broad and general application of the physician’s duty to warn might lead to confusion, conflict or unfairness in many types of circumstances, we are confident that the duty to warn of avertible risk from genetic causes, by definition a matter of familial concern, is sufficiently narrow to serve the interests of justice. Further, it is appropriate . . . that the duty be seen as owed not only to the patient himself but that it also extend beyond the interests of a patient to members of the immediate family of the patient who may be adversely affected by a breach of that duty.’ Interestingly enough, the court had considered that there was no essential difference between ‘the type of genetic threat at issue here and the menace of infection, contagion or threat of physical harm . . . The individual at risk is easily identified, and the substantial future harm may be averted or minimised by a timely and effective warning’. The more far-reaching implications of that case are controversial. They were even rejected by the New Jersey legislature in 1996,39 when a statute was passed for the purpose of protecting genetic privacy, which allows healthcare providers to warn relatives of those suffering from genetic disorders only if the patient has consented to such disclosure or after the patient has died.

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In the Schroeder v Perkel case, the New Jersey Supreme Court40 had observed that the duties of a physician may extend beyond the interests of his patient, to members of that patient’s immediate family who might be adversely affected by the physician’s breach of duty. In that case, the court reasoned that the doctor’s duty followed from the potential harm that might occur to the patient’s parents in case they were to conceive a second child, unaware that the second child might also suffer from cystic fibrosis. In Molloy v Meier,41 the Supreme Court of Minnesota also held that ‘A physician’s duty regarding genetic testing and diagnosis extends beyond the patient to biological parents who foreseeably may be harmed by a breach of that duty.’ The plaintiffs, Kimberly Molloy and her husband Robert Flomer, had a daughter with developmental retardation. Four years after their daughter’s birth, Kimberly Molloy consulted Dr Diane Meier to determine whether her daughter’s developmental retardation had a genetic cause. Dr Meier ordered chromosomal testing of the child, including a test for fragile X syndrome, a hereditary condition that causes a range of mental impairments. But the fragile X test was never performed, and the tests that were done revealed no genetic abnormality. After having been told by Dr Reno Backus, another physician to whom Kimberly Molloy referred her daughter, that the child was developmentally delayed with autistic tendencies of unknown origins, she asked about the risk of having another disabled child, as she intended to have a second child with her second husband, Glenn Molloy. Dr Backus told her that the chances of having a second child with the same impairments were extremely remote. Unfortunately, her second child also appeared to have the syndrome. Two years after the birth of her second child, Kimberly Molloy took a genetic test that identified her as a carrier for fragile X. Her two children were also identified as having the fragile X syndrome. The Molloys sued Dr Meier, Dr Backus and another physician for their negligence in the care they owed to the first child and to themselves. They reproached the physicians for negligently telling them that the first child did not have the fragile X syndrome when in fact the child had never been tested for it. In a case decided in Italy by the Garante per la protezione dei dati personali, the Garante allowed a woman to access her father’s genetic data despite the latter’s refusal of consent. The woman’s request was motivated by her wish to take a fully informed reproductive decision by assessing the risk of transmitting a genetic disease that affected her father. The justification provided for the decision consisted in the evaluation by the Garante that the woman’s ‘right to health’ (health being defined by the Garante as including ‘psychological and physical well-being’) trumped her father’s right to privacy.42 Other cases are imaginable where a patient’s right to privacy and confidentiality would conflict with the interests of members of his/her family regarding knowledge about their own risk status. One may imagine, for example, the following situation: a woman aware of her strong familial history

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of breast cancer decides to take a BRCA 1 gene test. Although her mother never went for the test, her grandmother had tested positive for the BRCA 1 mutation. If the woman also tests positive for the mutation, it necessarily means her mother is also positive. Should the latter be warned of her increased risk? What if the tested woman does not want to disclose that information to her mother? At the opposite end of the spectrum, the case may arise where a family member who does not want to know that he/she is at risk may be forced to know: a positive test for Huntington’s disease performed on an unborn child indicates that one (or both) parent(s) will develop the disease. Predictive and prenatal testing are available for Huntington’s disease, but not all people at risk choose to have the test.43 Conflicts of interests may also arise when, for example, having conceived a child, a man that the future mother knows to be at a 50 per cent risk of developing Huntington’s disease does not wish to be tested and prefers not to know whether he will actually develop the illness. If the woman asks for prenatal genetic diagnosis, a positive test will indicate, with certainty, that the father will have Huntington’s disease. Should the right not to know of the prospective father trump the paramount interest of the mother to know whether the unborn child is affected or not? The current global legal attitude regarding decisions to undertake prenatal genetic diagnosis is to respect the will of the mother who is physically concerned by the test. She is the patient to whom medical doctors and genetic counsellors have a duty of care (Tassicker et al, 2003). Yet the American Society of Human Genetics has already suggested that genetic information may be viewed as a ‘family possession rather than simply a personal one’. In a note explaining the suggestion, one even reads the idea of a family-health model that contemplates the physician’s patient as the entire family, where family is understood to refer to a genetic network rather than a social institution (American Society of Human Genetics, 1998). The Royal College of Physicians of the United Kingdom similarly suggested in 1991 that . . . because of the nature of genes, it may be argued that genetic information about any individual should not be regarded as personal to that individual, but as the common property of other people who may share those genes, and who need the information in order to find out their own genetic constitution. If so, an individual’s prima facie right to confidentiality and privacy might be regarded as overridden by the rights of others to have access to information about them. (Royal College of Physicians Committees on Clinical Genetics and Ethical Issues in Medicine, 1991) Even more radically, some scholars dismiss concerns about patient confidentiality by assuming the pre-eminence of the genetic family within which

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individual identity is subsumed by the identity of the whole. For example, R Burnett writes that: [T]here is no need to consider confidentiality in the genetic context because, arguably, confidentiality is not sacrificed. Confidentiality is not in danger because, even assuming that policies in favor of confidentiality outweigh a duty to warn, a duty of confidentiality is not violated in the situation involving the warning of genetic diseases. . . . Now, with the introduction of genetic mapping, . . . the patient/physician relationship has been reconfigured to reflect the individual’s ties to his or her ancestors and descendants. (Burnett, 1999: 559) According to this comment, the right to privacy is just not applicable to genetic information in genetic family contexts. At the heart of the ideological construction of the genetic family is the obliteration of privacy. The question whether members of the genetic family may refuse inclusion of their biological samples and related health information in a nationwide databank has been raised in Iceland. Let us briefly recall the context. In a homogeneous population such as the Icelandic one, individual mutations are easily identifiable, rendering the study of the genetic causes of certain illnesses less complicated. In 1999, the Parliament of Reykjavik sold DeCode Genetics, a private firm, an exclusive right to access the genetic and genealogical data of the whole Icelandic population for a 12-year period.44 Moreover, Hoffmann-La Roche, a private pharmaceutical firm based in Switzerland, has agreed to pay DeCode 200 billion dollars over a period of five years to have exclusive access to the data that DeCode would garner from the Icelandic databases concerning several rare genetic diseases. Despite the apparent incommensurability of information driven by a population’s DNA, the price of 200 million dollars has been agreed. During the debates held at the Parliament of Reykjavik, several politicians expressed the wish that the medico-genetic databank constituted by DeCode would become to Iceland what the petroleum of the North Sea is to Norway. But the question remains whether a country is authorised to sell genetic information relating to its population and if it may, whether anyone has the right to buy such information under any conditions. One of the paradoxes of the Icelandic situation is that granting exclusive exploitation rights over the genetic database to a private company might ultimately deprive Icelandic citizens whose DNA has been used from the benefits of discoveries resulting from that database. In order for the database to be useful, it must practically take into account the DNA of the whole population. Hilary Rose (2001) commented on the irony of the fact that the success of pharmacogenomic research pursued by pharmaceutical companies and venture capital involved in nationwide biobanks requires, as a precondition, a universal healthcare system, for only

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long-existing welfare states have the universal healthcare records needed for such large-scale endeavours. According to the regulations in force in most countries, notably in Europe and the United States, the establishment of such a database would require the previous consent of each individual involved. In Iceland however, individual consent has been presumed, each person being automatically included in the database unless she formally expresses her refusal. In Ragnhildur Guömundsdóttir v The State of Iceland,45 the Icelandic Supreme Court ruled that the Health Sector Database Act of 1998 does not comply with Iceland’s constitutional privacy protections. The case involved the question whether a woman could refuse health information about her deceased father to be included in the Health Sector Database. The court ruled that Ms Guömunsdsdóttir could not opt out of the database on behalf of her father, but that she could prevent the transfer of her father’s medical records (especially those concerning her father’s hereditary characteristics) because of the possibility of inferring information about her from such records. Moreover, the Court found that removing or encrypting personal identifiers such as name and address is not sufficient to prevent the identification of individuals involved in the database, since they may still be identified by a combination of factors such as age, municipality, marital status, education and profession, and the specification of a particular profession. The mere encryption of direct personal identifiers, and the various forms of monitoring entrusted to public agencies or committees, the court ruled, are not enough to comply with the Icelandic constitution’s protection of privacy. What is required is a change in the Health Database Act of 1998 (Gertz, 2004a). For the purpose that concerns us here, the case is interesting because it shows how human genetics disrupts traditional views on the individual’s right to consent and withdraw consent to research participation and the extent to which the law is forced to acknowledge the fact that the ‘subject’ of genetic information exceeds the individual liberal unit of the traditional legal subject. According to the European advisory body on data protection and privacy’s Working Document on Genetic Data adopted on 17 March 2004, . . . a new, legally relevant social group can be said to have come into existence – namely, the biological group, the group of kindred as opposed, technically speaking, to one’s family. Indeed, such a group does not include family members such as one’s spouse or foster children, whereas it also consists of entities outside the family circle – whether in law or factually – such as gamete donors or the woman who, at the time of childbirth, did not recognise her child and requested that her particulars should not be disclosed – this right being supported in certain legal systems. The anonymity granted to the latter entities raises a further issue, which is usually dealt with by providing that the personal data required

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for genetic testing be communicated exclusively to a physician without referring to the identity of the relevant individual. Does more genetic information always bring more liberty? A seemingly universal intuition is that: . . . the better informed the individual is, the more capable he is of making decisions in line with his own basic wishes, since he is more likely to succeed in realising his wishes if the beliefs he acts from are well-founded. This makes autonomy a matter of degree: generally, the more information relevant to a decision one has when making it, the more autonomous it is. From this point of view it seems difficult to defend a general right to ignorance. (Radetzki et al, 2003: 110) Information about risks to oneself is usually considered to enhance individual liberty by allowing for better informed, and thus more rational, actions and choices. Information is regarded as emancipating individuals from the constraints that uncertainty imposes on their freedom. Uncertainty is thought of as restricting the autonomous character of acts and choices. Given the potentially devastating psychological, familial, social and economic effects of adverse genetic test results, the usual way of regulating access and disclosure of genetic information has been, both in Europe and in the United States, to insist on the ideal of individual autonomy. By autonomy, I mean the rights and liberties necessary to individuals in order for them to live a life characterised as (in part at least) self-determined, self-authored or self-created, following plans and ideals – a conception of the good – that they have chosen for themselves.46 In the context of human genetics, respect for personal autonomy amounts, for example, to the recognition of a right of an individual to know or not to know about their genetic disorder. But this is contested, given that allowing a right not to know would permit people to stand uninformed, whereas autonomy is sometimes presented as requiring all the available information that may be pertinent in order to choose one’s way of living. Rosamond Rhodes, for example, held that: . . . if autonomy is the ground for my right to determine my own course, it cannot also be the ground for not determining my own course. If autonomy justifies my right to knowledge, it cannot also justify my refusing to be informed. . . . From a Kantian perspective, autonomy is the essence of what morality requires of me. The core content of my duty is self-determination. To say this in another way, I need to appreciate that my ethical obligation is to rule myself, that is, to be a just ruler over my

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own actions. As sovereign over myself I am obligated to make thoughtful and informed decisions without being swayed by irrational emotions, including my fear of knowing significant genetic facts about myself. (Rhodes, 1998) Similarly, Harris and Keywood argue that: . . . there is no such thing as a right to remain in ignorance, where a right is understood as an entitlement that trumps competing claims. This does not of course mean that information must always be forced upon unwilling recipients, only that there is no prima facie entitlement to be protected from true or honest information about oneself. Any claims to be shielded from information about the self must compete on equal terms with claims based in the rights and interests of others. In balancing the weight and importance of rival considerations about giving or withholding information, if rights claims have any place, rights are more likely to be defensible on the side of honest communication of information rather than in defence of ignorance. The right to free speech and the right to decline to accept responsibility to take decisions for others imposed by those others seem to us more plausible candidates for fully fledged rights in this field than any purported right to ignorance. Finally, and most importantly, if the right to autonomy is invoked, a proper understanding of the distinction between claims to liberty and claims to autonomy show that the principle of autonomy, as it is understood in contemporary social ethics and English law, supports the giving rather than the withholding of information in most circumstances. . . . Human beings have a schizophrenic attitude to information. On the one hand many believe, with Socrates, that the unexamined life is not worth living and put a high premium on self-awareness and self-knowledge. Others, equally righteously, believe that ignorance is bliss and the dreams of sleeping dogs should be untroubled by awkward facts. Socrates and the ostrich are the icons of these opposed viewpoints. (Harris and Keywood, 2001) The relationship between information and autonomy is not as straightforward as it is usually conceived, however, especially when the information involved increases the range of predictable events, as is the case for genetic information. A belief in the positive relationship existing between information and freedom has been criticised, both generally and in the genetic context. Isaiah Berlin, notably, draws attention to the fact that: Knowledge, especially risk-knowledge, if it allows the individual to take some preventive actions or decisions for himself or for others, also potentially impacts negatively on other ranges of opportunities and experiences

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by which the unknowing individual would have been tempted. What knowledge gives with one hand, it may well take back with the other. The growth of knowledge increases the range of predictable events, and predictability – inductive or intuitive – despite all that has been said against this position, does not seem compatible with liberty of choice. . . . if, in other words, I claim to have the kind of knowledge about myself that I might have about others, then even though my sources may be better or my certainty greater, such self-knowledge, it seems to me, may or may not add to the sum total of my freedom. The question is empirical: and the answer depends on specific circumstances. From the fact that every gain in knowledge liberates me in some respect, it does not follow . . ., that it will necessarily add to the total sum of freedom that I enjoy: it may, by taking with one hand more than it gives with the other, decrease it. (Berlin, 2000) Berlin’s critique of the information-liberty nexus also parallels Amartya Sen’s statement that having more information, and thus a wider range of choices of actions or abstentions available, may be detrimental to the individual’s liberty of welfare whilst being beneficial to his liberty of agency (Sen, 1995). Whether in fact genetic information enhances autonomy and freedom is always provisional. The fact that, in many cases, predictive genetic information is not really specific nor sensitive enough (the identification of a predisposing gene in one individual doesn’t mean that he will necessarily develop the disease; conversely, the absence of any known predisposing gene in an individual’s make-up doesn’t guarantee that he will never develop the illness and is considered ‘medically useless and potentially psychologically harming’ given that no preventive or curative strategies currently exist for the disease at issue), has made some scholars and professional groups advocate that tests for unpreventable diseases such as Alzheimer’s disease should not be provided to patients, even at their request.47 What is seldom taken into account, moreover, in discussions about the right/duty to know and the right not to know is the probable pleiotropic character of the genetic mutations detected through genetic testing. Whereas it may be perfectly sensible to wish to gain information about one’s increased risk of developing a preventable disease, when the same mutation also indicates that one is at the pre-symptomatic stage of an incurable and unpreventable disease or that one is at increased risk of developing such a disease, the test is both clinically useful and potentially devastating. The APOEe4 genotyping testing is one of those pleiotropic tests: it provides information about the risk of both atherosclerosis (coronary artery disease) – a condition for which preventive measures such as cessation of smoking, low-fat diet, exercise, and avoidance of stress may decrease the risk – and an increased risk of developing Alzheimer’s disease. Risk information about heart disease is medically useful as it allows early prevention. On

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the contrary, information about the risk of developing Alzheimer’s disease does not allow the patient to do anything about it, and a positive result may produce net adverse consequences.48 However the strong current presumption existing in favour of genetic transparency, both to oneself and towards others, contributes to concealing the fundamental and subtle ambiguities existing between information and truth (particularly the probabilistic truth of genetic risks identified through genetic tests) on the one hand, and between information and freedom or autonomy on the other. In fact, rather than determinism, what is suggested by the availability of genetic services is an extension of human agency and choice and a parallel decrease in the scope of luck and necessity. The use of new genetic diagnostic and prognostic tools does not initiate any so-called genetic revolution, they only intensify an existing tendency to shift the responsibility for ill-health away from environmental, social and economic factors to the individual, and have the potential to increase the prejudices held against some ethnic minorities, especially when, for economic and social reasons, such minorities suffer more daily exposure to unhealthy chemical agents in their environment and diet.49 Despite the claim – which may be partially true – that genetic counselling is fundamentally non-directive and that decisions about genetic risks are always left to individual choices,50 those choices become the precise medium through which a new form of governance is exercised, taking citizens’ bodies as both vectors and targets of normalisation. [T]he transformed non-directive ethos is based on the transmission of expert knowledge to create autonomous actors who, through the medium of choice consent voluntarily to act responsibly. . . . In this practice a prominent social rationality emerges: to acquire knowledge about genetic risks and embark on preventive action comes to stand out as the right way of relating to oneself (taking personal responsibility for health), the family (saving lives of relatives) and society (maintaining a healthy population).51 The opposition often assumed to exist between choice and directiveness lacks operability when, instead of opposing directiveness in the name of respect for expressed individual choices, one acknowledges that individual choices, far from being given, natural and objective facts, result, as Foucault suggested, from the disciplines, that is, from the power immanent in the social field that makes up the individual. One may regret that an insistence on the positive impact of information on an individual’s capacity to make decisions in line with his basic wishes be not accompanied by a critical assessment of the conditions under which those basic wishes are formed. This critique could be addressed more generally to most economists, and to most law and economics scholars, who consider individual preferences and

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choices as naturally, rather than socially and economically, constructed. The equation often suggested between choice and liberty or (negative) freedom is fallacious because it confines freedom to the individual’s psychism rather than empowering him with transformative powers over the dominant economic and social valuation schemes that confine his preferences and choices. Edwin Baker, for exemple, observed, regarding the economic analysis of the right of privacy, that: The law restricting secrecy . . . encourages attitudes or values more consistent with one form of social life than another, thereby reinforcing a particular conception of what people are or should be. This fact points to a serious paradox for an economic analysis that must take some set of preferences as given. The paradox is that although the analysis attempts to determine which laws are efficient or which best fulfil human desires, the answer depends on what preferences are created – thus, the answer will vary depending on which law is analyzed since each law may best satisfy the preferences it generates. The analysis cannot provide a solution to the question raised. A solution requires envisioning an alternative analysis. This alternative . . . rather than focusing on how best to maximize satisfaction of existing preferences, must consider how to determine what preferences the law ought to encourage. Presumably, this determination, like the solution to the distribution question on which economic analysis is likewise mute, must accord all people an equal voice, as opposed to input dependent on a distribution of wealth and on a set of preferences generated by the very societal institutions that are being evaluated. (Baker, 1978: 488) Klick and Parisi also made the point that: ‘human attitudes of conformism can be understood as the product of human adaptation. In an attempt to maximize their chances of success and payoffs from social interactions, humans tend to follow strategies of preference falsification or preference adaptation’ (Klick and Parisi, 2004). As a result, interpretation of the utilitarian terms of ‘pleasures’ and ‘pains’ tend to be reduced to the behavioural analysis of ‘expressed preferences’. More radical theories even avoid the balancing of individual preferences and reduce the utilitarian calculus to the pursuit of the ‘agent-neutral’ ideal of economic efficiency.52 My point is that neither the behaviouristic interpretation of utilitarian terms nor the maximisation of efficiency relieve the economic analysis of law from its most important bias: its failure to acknowledge the ‘performative’ and ‘immanent’ nature of law that Macherey described as follows: ‘the law, because of its nature of cause, always anticipating its own potential effects, is that which results in the mere affirmation of the productivity of the norm, given this other aspect of its action, which is its immanent character.’53

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Michel Foucault’s account of the dialectic between desire and power is particularly relevant to the genetic context: One should not imagine that desire is repressed, Foucault argues, for the good reason that the law is precisely constitutive of desire and of the want it inspires. The power relationship would already be present where desire is present: denouncing a power that was implemented afterwards would be illusory; but looking for desire outside of the power relationship would also be in vain.54 Yet, Foucault’s explanation of the conception of a coalescence between desire and power criticises critiques of that coalescence, which usually ensue from a reductionist conception of power: a juridico-discursive conception hiding or omitting the non-juridical, the non-forbidding dispositives of domination: Why does one so easily accept this juridical conception of power? Foucault asks: In a society like ours where dispositives of power are so numerous, its rituals so visible and its instruments eventually so reliable, in this society which has probably been more inventive than any other in designing subtle and unbound power mechanisms, how can one explain the tendency to acknowledge power merely in the negative and disincarnate form of (legal) interdiction? Why are we thinking of apparatus of domination confined exclusively in the process of legal restrictions? There are obvious general and tactical reasons: power is only tolerable if it conceals a part of itself. Its achievements are proportional to the extent to which it succeeds in hiding its mechanisms. Would power be accepted if it were entirely cynical? From the point of view of power, secrecy does not amount to abuse, it is necessary to its functioning, and this is not only because it imposes secrecy on those whom it constrains, but maybe also because secrecy is at least as indispensable to them: would they accept power if they did not conceive it simply as a mere limitation imposed on their desires, leaving an intact portion, be it limited, of liberty? Power purely as a boundary of liberty, is, at least in our society, the general shape of its acceptability . . . Even if it is true that the juridical has been able to represent, probably in a non-exhaustive way, a power essentially focused on takings and death, it is absolutely heterogenous to the new processes of power relying on techniques rather than law, on normalization rather than statutes, on control rather than punishment, and which is implemented at levels and in forms that spill over the State and its apparatus.55 An explicit example of the effectuation of power articulated on technique, normalisation and control is the classification of people into risk categories. Classifications of that kind are hardly open to contestation: ‘risk’ is an

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intellectual construction that does not identify present persons, but targets potential future events. The risk is thus a technology, or a discipline directed at the whole population rather than merely at identified individuals and groups. It is therefore a particularly streamlined technique of governance.56

C. Behavioural genetics as an ideological weapon against social policy A more extreme illustration of the ideologically driven construction of genetic knowledge is the use of ‘race’ in behavioural genetics: a significant portion of behavioural genetics is motivated by the wish to find, under the skin, the ‘proof’ both that ‘races’ exist as biological realities and that social, economic and political disadvantages systematically burdening certain racialised groups57 are caused by ‘nature’ rather than social injustice and racial prejudices. Fallacious inquiries suggest the existence of correlations between ‘race’ and IQ and insinuate that the cause of low IQ test scores in some racial groups is located in their genes. Alternatively, studies suggest in a more subtly, culturally racist way that the black–white gap in measured cognitive skills is due to the ‘bad’ quality of black parents and ‘black lifestyle’. Sander, for example, followed that line of arguments in its advocacy against affirmative action in American law schools: . . . there is nonetheless a very large black–white credentials gap among those applying to law school, and this gap does not disappear when one uses simple controls for such glib explanations as family income or primary-school funding. Researchers have made great strides over the past generation in accounting for the black–white gap in measured cognitive skills. The dominant consensus is that: (a) the gap is real, and shows up under many types of measurement; (b) the gap is not genetic, i.e., black infants raised in white households tend to have the same or higher cognitive skills as whites raised in the same conditions; and (c) there are a variety of cultural and parenting differences between American blacks and whites (e.g., time children spend reading with parents or watching television) that substantially contribute to measured skill gaps.58 (Sander, 2004) These findings are sometimes explicitly followed by public-policy recommendations inimical to affirmative action and other policies aimed at equalising opportunities to allow members of historically disadvantaged groups to reach a level playing field for their full participation in society, the background assumption being also that if the individual’s position in the society is due to traits that are either inherited or due to specificities of culture of parenting, and thus, it is assumed, unchangeable, so is the individual’s position in the society, no matter what redistributive schemes are put in place.

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Sanders even argues that affirmative action in fact harms black people because when they are admitted to schools above their capacity and matched against more qualified whites, they have to struggle more, frequently leading to lower grades and less learning, lower pass rates on the bar exam and problems on the job market. He suggests that without affirmative action, those blacks would study in lower level law schools where they would get better marks without having to struggle so much, would have higher pass rates on the bar exam and less problems on the job market, as employers, according to Sander, pay more attention to grades than to the ranking of the law school from which the lawyers graduated. The belief that unequal opportunities in life result from ‘brute luck’ or ‘nature’ or ‘genes’, rather than from a social history of oppression and domination and from enduring prejudices, absolves those who believe that inequalities among human beings are unjust only if they are unjustly created. They are free from any responsibility to compensate the position of those whose misfortune is redefined as resulting from being born with the bad set of genes or in an inefficient culture. These arguments are unconvincing for a variety of obvious reasons, among which is the highly questionable scientific validity of those studies on IQ and race. Neither the notion of ‘race’ nor intelligence has received a clear definition. It is doubtful that IQ tests do indeed measure intelligence, except if one defines intelligence precisely as the thing that IQ tests measure. The argument is obviously cyclical. Examples of attempts to comfort the idea of ‘races’ and to use it to ‘naturalise’ social and economic inequalities are numerous. The most famous are Arthur Jensen’s 1969 article on ‘How much can we boost IQ and scholastic achievement?’ (Jensen, 1969) and his 1973 book on Educability and Group Differences (Jensen, 1973), the famous book by Hernstein and Murray, The Bell Curve (Hernstein and Murray, 1994), where they claim that crime, poverty, illiteracy, welfare dependency, drug abuse and economic failure are characteristic of blacks all over the world and that an inherited low IQ among blacks is the cause of these problems. More recently, an article by Rushton and Jensen (Rushton and Jensen, 2005), reviewing 30 years of research on race differences in cognitive ability (overlooking the fact that those studies were based upon experimental results that have never been confirmed by replication), raised the following argument, grounded on a pretended genetic component of the black–white differences in mean IQ: [T]he implication for public policy is that the discrimination model (i.e., Black–White differences in socially valued outcomes will be equal barring discrimination) must be tempered by a distributional model (i.e., Black– White outcomes reflect underlying group characteristics). Although the distributional model does not rule out affirmative action or compensation-type initiatives, it does reduce the impact of the arguments in their favor based on an exclusive adherence to the discrimination model.

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Several critical responses to that article were published in the same review.59 The obvious political agenda behind revival of racial behavioural and cognitive genetics is to undermine the justifications for policies of affirmative action and other social interventions.

Notes 1 See Handler (2001), McCluskey (2002), McDonald (2005) and Ewald (2002: 277): ‘The mechanism of solidarity is not based on fault but on risk; its main instrument is insurance, rather than general legal rules for assigning liability.’ 2 Thomas Lemke relevantly observed that: ‘The translation of social into genetic risks not only sheds light on individual risk profiles, it might also allow this visibility to become profitable in both political and economic terms. One example for this strategy is the use of genetic testing in the workplace. Instead of simply forbidding potentially harmful products or putting pressure on enterprises to change hazardous production procedures (e.g. those known to cause cancer), it might prove more “economic” or politically suitable to develop and use expensive genetic tests for the diagnosis of these diseases inside the human body. In this respect, genetic governmentality favours more a reactive than a preventive strategy: While the change of the conditions that cause illnesses might be more appropriate, scientific research and social interest concentrate on the “genes for diseases”. Thus, the hope of a “victory” on cancer, Alzheimer etc. coincides with the prospective knowledge of their molecular structures and the promise of a “genetic medicine” ’ (Lemke, 2004). 3 See Van Damme, K and Casteleyn (1999). See also Council of Europe Committee of Experts on the use of medical examinations for employment and insurance purposes (2000). 4 In particular the International Labour Organization, 1985a, 1985b, 1997a and 1997b). 5 See, particularly, in the United States, the Occupational Safety and Health Act of 1970, and, in the European Union, the Council Directive 89/391/EEC of 12 June 1989 on the introduction of measures to encourage improvements in the safety and health of workers at work and the Council Directive 98/24/EC of 7 April 1998 on the protection of the health and safety of workers from the risks related to chemical agents at work. 6 The Proposal for European Guidelines on Medical Examinations Preceding Employment and/or Private Insurance (2000) adopts the similar principle that ‘the employer should be prepared to take, upon the advice of the examining physician, all reasonable measures to adapt the work or working environment in order to provide for the employment of the applicant. The applicant should not be denied the job solely because the advice of the examining physician is that he can only be employed under specific conditions’. 7 Council Directive 2000/78/EC, recital (7). 8 Prevention of paternalistic attitudes and prejudices against disabled people is not even mentioned in the European Directive. Should one understand that paternalistic attitudes may be tolerated or even required in the European Union in order to put everyone to work? 9 Chevron USA Inc v Echazabal, 536 US 73 (2002). Certiatori to the United States Court of Appeals for the Ninth Circuit, No. 00–1406. Argued 27 February 2002 – Decided 10 June 2002. 10 Compare with Echazabal v Chevron USA, Inc, 213 F.3d 1098, 1108 (9th Cir. 2000), ruling in favour of job applicant Echazabal and against the EEOC’s position;

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Genetic knowledge and the rise of genetics as a new perceptual regime Moses v Am. Nonwovens, Inc, 97 F3d. 446, 447–8 (11th Cir. 1996), allowing discrimination against an epileptic worker whose contact with dangerous machinery would have posed a direct risk to his own health. In the UK, that question was raised in Coxall v Goodyear Great Britain Ltd [2002] EWCA Civ 1010, which ruled that the employer may be under a common law duty to dismiss an employee so as to protect his own good health (the decision is inconsistent with precedent: Withers v Perry Chain Co Ltd. [1961] 1 WLR 1314, Kossinski v Chrysler United Kingdom Ltd [1973] 15 KIR 225; Henderson v Wakefield Shirt Company Ltd [1977] PIQR P413, Hatton v Sutherland [2002] EWCA civ 76 ICR 613, CA: ‘the common law does not require employers to refuse to employ a person who is willing to work for them simply because they think that it is not in the person’s best interest to do the work.’ See Bohrer (2002) arguing that, behind a ‘veil of ignorance’, the just solution that would be agreed would consist in testing workers for their specific susceptibilities, exclude those at special risk, and compensate them for being excluded, according to a system where employers would ‘pay to discriminate’. First Human Genome Conference, October 1989, remark quoted in Lewontin, (1991). ‘Most health inequalities cannot be attributed either to different genetic susceptibilities or to differences in medical care, and are only partially explained by such health-related individual behavior as smoking, drinking, diet, and exercise. They are due rather to the effects of the different social and economic circumstances in which people live, including unemployment, poverty, housing, and pollution’ (Sexton, 2002). See also London School of Hygiene and Tropical Medicine Department of Public Health and Policy (2000). See Veatch (2000): ‘while twentieth-century medical ethics has focused on the duty of physicians to benefit their patients, the next century will see that duty challenged in three ways. First, we will increasingly recognise that it is unrealistic to expect physicians to be able to determine what will benefit their patients. Either they limit their attention to medical well-being when total well-being is the proper end of the patient or they strive for total well-being, which takes them beyond their expertise. Even within the medical sphere, they have no basis for choosing among the proper medical goals for medicine. Also, there are many plausible strategies for relating predicted benefits to harms, and physicians cannot be expert in picking among these strategies. Second, increasingly plausible ethical systems recognise that in some cases, patient benefit must be sacrificed to protect patient rights including the right to the truth, to have promises kept, to have autonomy respected, and to not be killed. Third, ethics of the next century will increasingly recognise that some patient benefits must be sacrificed to fulfil duties to others – either the duty to serve the interests of others or other duties such as keeping promises, telling the truth, and, particularly, promoting justice. Physicians in the twenty-first century will be seen as having a new, more limited duty to assist the patient in pursuing the patient’s understanding of the patient’s interest within the constraints of deontological ethical principles and externally imposed duties to promote justice. The result will be a duty to be loyal to the consumer of health care with the recognition that often this will mean that the physician is not permitted to pursue the physician’s understanding of the patient’s well-being.’ See Botkin (2000), Baugher (2000), Vehmas (2002), Green (1997b), Gosseries (2000, 2002) and Coleman (2002). See Sass (2004). See also Petersen (2005): ‘the notion that the body and health are projects to be worked on by the self has become pervasive in many contemporary societies.’

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18 The Baltimore City Cardiovascular Health Partnership Strategy Development Workshop, held in 2002 from an initiative by the National Institutes of Health, the National Heart, Lung, and Blood Institute and the Office of Prevention, Education, and Control, aimed at ‘Mobilizing African-American communities to address disparities in cardiovascular health’, is a typical example of this process. See Office of Prevention, Education and Control (US) (2002). 19 See Moss (2005: 3): ‘Be it as it may, what has captured the attention of the media and entered into both material and ideological processes of social reproduction has been a new, or at least regenerized, preformationisitic discourse of human nature that anchors its disciplinary identity in behavioural genetics and evolutionary psychology. . . . The new discourse of human nature certainly takes itself to be relevant to our ethical self-understanding and no false modesties get in the way of it saying so.’ 20 See Scott et al (2005). Online advertisements for genetic services rely on the idea that it is indeed more ‘rational’ to ‘know one’s genes’ than to ignore them: ‘Imagine you were dealt a hand of cards and then were asked to play out your hand, without even seeing the values of the cards. Without knowing the cards, you would have no idea how to best play out your hand. The outcome would depend on pure chance. . . . Seeing the results of your Genovations test is like seeing the cards you’ve been dealt by Nature. Once you know the cards, you can develop the most effective strategy to play out your hand. That means working with your healthcare provider to carefully develop a diet, lifestyle, and supplement program that matches the unique health risks for your body. Whether you choose to see your genes or not, they are always there.’ (Advertisement for genetic tests sold on the internet: http:// www.thewellnessdoctor.com/genetic.htm.) ‘At DNA Direct, we offer confidential genetic testing, personalized results interpretation, and expert support services – to put the power of your genes into your hands . . . At DNA Direct, we believe that testing is about empowerment – your body and your health are ultimately your responsibility, and your genes offer tremendous insight into personal, medical and lifestyle choices . . . Genes are a valuable part of the equation, and they must be interpreted in context and in privacy. We have set up a unique service that does just that – while providing individuals with knowledge and insight to take control of their personal health’ (http://www.dnadirect.com). 21 See Mykitiuk (2000), Lemke (2002, 2003, 2004) and Lupton (1993). More generally, see Baker and Simon (2002: 3–4): ‘there has been a series of developments in the United States and elsewhere that suggest the appeal of a domestic social policy of “more insurance for more people” has begun to fade in favour of policies that embrace risk as an incentive that can reduce individual claims on collective resources. Significantly, these developments are occurring in both public and private forms of insurance, so that they cannot be attributed solely to a re-examination of the role of the state in the distribution of risk and responsibility’. 22 See Foucault (1976a: 76–94). See also Pugliese (1999: 420), making the parallel observation that, ‘in the texts of forensic genetics, DNA is represented as offering the possibility of “unlocking the black box of identity”. Situated in the inner recesses of the cell, coiled and supercoiled along the structures of the double helix, is “the uniqueness of a human being, resident in that person’s DNA”. The personifying trope of resident here figures identity as a self-identical entity naturally inhering in a person’s DNA. The labor of forensic genetics is predicated on the fact that a person’s unique identity, “resident in that person’s DNA, can be deciphered and written down”. What I’m drawing attention to here is one of the

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Genetic knowledge and the rise of genetics as a new perceptual regime fundamental presuppositions of forensic genetics: that DNA identity predates the operations of discursification and textual labor; that it is always already there, merely awaiting the exegetical work of the forensic scientist, who will simply decode, decipher and transcribe it. This presupposition straddles the field of genetics from the micro-individual examination of a person’s DNA identity to the macro-global enterprise of the Human Genome Project, which has termed the map of the human genome it is aiming to produce the book of man. Significantly, the phallocentric language of this title signals the suppression and homogenization of difference in a project which purports to describe the entirety of the human genome and the location of all the genes that constitute it.’ The right to privacy has become increasingly formal and procedural, though, in a society where control and surveillance have intensified. ‘[I]nterconnectedness and responsibility to others are brought to the fore in the genetic sphere in a manner which seems to run counter to current ethical and legal orthodoxy. Extreme notions of individual rights and autonomy are insufficient to deal with these complex and interwoven interests. A more useful framework is gained by combining notions of autonomy with a modified version of communitarianism which recognises decisions made by one person inevitably affect others and that an individual cannot have rights without also accepting that he or she has certain duties’ (Sommerville and English, 1999). Dolgin (2000) is also concerned that ‘The genetic family insists only on one thing – the recognition of biological information. In that, it upsets a society and a legal order committed to the position that autonomous choice can sustain a moral frame within which family life is distinguished from life in other social domains . . . At the edges of a broad commitment to freedom, and thus choice, the law faces the medicalized family, and begins to elaborate its variant: the genetic family. At least in the first instance, this family serves neither individualism nor choice. It reflects the amorality of DNA through which it is delimited, and to which it can be reduced. Unlike the notion of biogenic substance as traditionally defined, DNA is indifferent to the content of family life. This construct of family differs from others in abandoning even the repentance that contemporary families should be modelled on nostalgic images of traditional families within which, it is presumed, enduring love and absolute loyalty were assured.’ See Haraway (1997: 247): ‘Most fundamentally, . . . the Human Genome Projects produce entities of a different ontological kind than flesh-and-blood organisms . . . or any other sort of “normal” organic being . . . the Human Genome Projects produce ontologically specific things called databases as objects of knowledge and practice. The human to be represented, then, has a particular kind of totality, or species being, as well as a specific kind of individuality. At whatever level of individuality or collectivity, from a single gene region extracted from one sample through the whole species genome, this human is itself an informational structure.’ ‘It can no longer be safely assumed that consciousness coincides with subjectivity, nor that either of them is in charge of the course of historical events. Both liberal individualism and classical humanism are disrupted at their very foundations by the social and symbolic transformations induced by our historical condition . . . One of the most pointed paradoxes of our era is precisely the clash between the urgency of finding new and alternative modes of political and ethical agency on the one hand, and the inertia of self-interests of neo-conservatism on the other’ (Braidotti, 2004). Depending of the patterns of inheritance of the genetic diseases studied – whether the illness is monogenic or not, whether it is monofactorial or not – the degree of certainty and accurateness of the conclusions driven by genetic information

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regarding the future outburst of an illness or as to the probability of transmission of that illness to the offspring will vary substantially. The matter will be developed further later. ‘It holds the prospect for transforming suspicions about genetic susceptibilities into probabilistic statements about the likelihood of a given individual contracting cancer, hypertension, or Alzheimer’s disease’ (Macklin, 1992). Even though the current practice doesn’t permit yet, in most cases, to determine the time of occurrence of late onset illness. The judicial relationship between that person and the genetic information produced by the tests are usually qualified as individual rights. See Knoppers (1998a), De Solas (1994), Abbing (1995) and Apel (2001). See, for an unusual defence of legal duties approach, Rhodes (1998), criticised by Takala and Häyry (2000). See also McTeer (1995: 893). ‘. . . L’analyse des liaisons génétiques implique la participation de tout le groupe familial. Il faut obtenir des renseignements génétiques sur tout le groupe familial, aussi étendu soit-il. On doit souvent tester plusieurs générations et des membres différents de la famille jumeaux, parents, grands parents, tantes, oncles, cousins pour savoir quels allèles sont liés entre eux ou bien connaître la taille du fragment d’ADN où réside le gène dans la famille étudiée. Comment peut-on faire sans exposer des gens à des risques? certains membres du groupe familial peuvent désirer connaître leur patrimoine génétique, d’autres non, et d’autres encore peuvent désirer garder le secret visàvis des autres membres de la famille’ (TeichlerZallen, 1992). Odièvre v France, 42326/98 (2003) ECHR 86 (13 February 2003). Rose v Secretary of State for Health and the HFEA [2002] EWHC 1593. Tarasoff v Regents of the University of California, 17 Cal. 3d 425, 551 P.2d 334, 131 Cal. Reptr. 14 (1976). See Riccardi (1996). Pate v Threlkel, 661 So.2d 278 (Fla. 1995). Safer v Estate of Pack, 677 A.2d 1188 (1996). Genetic Privacy Act, NJ, Stat. Ann & 17B:30. Schroeder v Perkel, 87 NJ 53 at 69–70 (1981). Molloy v Meier, 679 NW 2d 711, 719 (Minn. 20 May 2004). See Offit et al (2004). Garante’s Bulletin (Cittadini e Società dell Informazione 1999, No 8, 13–5), cited in Article 29 Data Protection Working Party, Working Document on Genetic Data, 17 March 2004, 12178/03/EN, WP 91 (The Working Party was set up under Article 29 of Directive 95/46/EC. It is an independent European advisory body on data protection and privacy.): ‘In linea de principio deve osservarsi che la conoscenza, prima del coceptimento o durante la gravidanza, del rischio probabilistico di insorgenza di patologie, anche di tipo genetico, sulla persona che si intende concepire o sul nascituro puo certamente contrubuire a migliorare le condizioni di benessere psico-fisico della gestante, nel quadro di une piena tutela della salute come diritto fondamentale dell’individuo ex art 32 Cost. L’accesso ai dati sanitari del padre della richiedente appare giustificato dall’esigenza di tutelare il benessere psico-fisico della stessa e tale interesse puo, nella circostanza in esame, comportare un ragionevole sacrificio del diritto alla riservatezza dell interessato.’ It has even been found that most people at risk of Huntington’s disease choose not to be tested (Binedell et al, 1998). The Health Sector Database Act No 139/1998 authorises the creation and operation of a centralised database of non-personally identifiable health data, with the aim of increasing knowledge for the purpose of improving health and health services. Several other population genetic databases have been developed in recent years around the world among which the UK biobank, the Estonian Genome

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Genetic knowledge and the rise of genetics as a new perceptual regime Project, the Cart@gene project of the applied genetic medicine of Quebec, the Personalized Medicine Research Project of the Marshfield Clinic of Wisconsin, the Newfound Genomics Enterprise of Terre-Neuve, the Latvian Population Genome Database Project (Lettonia), and the Tonga Islands DNA Bank Project. See Boucher and Trottier (2003). Icelandic Supreme Court, No 151/2003, 27 November 2003. See Onora O’Neil (O’Neill, 2002), recalling the wide variety of notions that have been associated with the concept of autonomy by scholars such as Gerald Dworkin’s (Dworkin, 1988), listing liberty (positive or negative), dignity, integrity, individuality, independence, responsibility and self-knowledge, self-assertion, critical reflection, freedom from obligation, absence of external causation, and knowledge of one’s own interest as concepts that have been equated to the concept of autonomy, or as Ruth Faiden and Thomas Beauchamps (Faden et al, 1986) according to whom autonomy may also be defined as privacy, voluntarism, selfmastery, choosing freely, choosing one’s own moral position and accepting responsibility for one’s choices. A correlation has been detected, for example, between APOE4 genotype and a greater probability of developing Alzheimer’s disease, but this is only one of the factors of the illness. See Wachbroit (1998). For more information about ApoE genotyping, see http:// www.labtestsonline.org/understanding/analytes/apoe/test.html. See for example (Byrne, 2004): ‘Today, our so-called health systems are in fact 90 per cent illness systems. They spend almost all their resources on treating ill health, and only a small amount on promoting good health. Imagine the reverse situation. Imagine the day when Europe makes a real shift from a focus on illness to a focus on health. Not only through information, education and prevention measures, but also through each and every policy impacting on health: from better housing, healthier work conditions to a clean environment.’ The World Medical Association, in its Declaration on the Human Genome Project, explicitly mentioned that ‘One should respect the will of persons screened and their right to decide about participation and about the use of the information obtained’ (World Health Organization, 2005). Similarly, the Council for International Organisations of Medical Sciences, in its 1991 Declaration of Inuyama, held that ‘voluntarism should be the guiding principle in the provision of genetic services’. See Koch and Svendsen (2005). See also Lupton (1993: 433): ‘[R]isk discourse as it is currently used in public health draws upon the fin de millennium mood of the late 20th century, which targets the body as a site of toxicity, contamination, and catastrophe, subject to and needful of a high degree of surveillance and control. No longer is the body a temple to be worshipped as the house of: it has become a commodified and regulated object that must be strictly monitored by its owner to prevent lapses in health-threatening behaviours as identified by risk discourse’, and Novas and Rose, 2000: 507: ‘[G]enetic forms of thought have become intertwined within ethical problematizations of how to conduct one’s life, formulate objectives and plan for the future in relation to genetic risk. In these life strategies, genetic forms of personhood make productive alliances and combinations with forms of selfhood that construct the subject as autonomous, prudent, responsible and self-actualising.’ See for example Lyons, 1993: 435: ‘Sometimes, utilitarian terms have been given a self-consciously behavioristic interpretation, as when references to pleasure and pain are replaced by concern for individuals’ preferences or one’s willingness to pay. In other cases, normative doctrines have departed from traditional

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utilitarianism, largely because of worries about interpersonal comparisons of utility. For example, the utilitarian requirement that the overall net balance of pleasure over pain should be maximised has been replaced, in some quarters, by notions of economic efficiency, some versions of which do not require us (even in principle) to compare the benefits conferred and burdens imposed on one individual with those conferred and imposed on others.’ ‘La loi, du fait de sa nature de cause, anticipant toujours sur ses effets possibles, est celle qui résulterait de la seule affirmation de la productivité de la norme, compte tenu de cet autre aspect de son action, qui est son caractère immanent’ (Macherey, 1989: 215). My translation from (Foucault, 1976a: 107–12): ‘[I]l n’y aurait pas à imaginer que le désir est réprimé, pour la bonne raison que c’est la loi qui est constitutive du désir et du manque qui l’instaure. Le rapport de pouvoir serait déjà là où est le désir: illusion donc de le dénoncer dans une répression qui s’exercerait après coup; mais vanité aussi de partir à la quête d’un désir hors pouvoir.’ Foucault (1975: 113–14) (my translation). See also Lemke (2002): ‘Instead of eugenic programmes enforced by state institutions, relying primarily on repressive means, there we find apparatuses of risk, aiming at the productive enhancement of the individual human capital in the name of self-determination and choice. Indeed the term self-determination undergoes a significant transformation the more the self is conceived of as grounded in genetic information. Information does not belong to any pre-existing metaphysical category. In this perspective, the use of genetic diagnosis is not up to individual freedom of personal choice. The wish not to know about your genetic make-up or risk profile could be regarded as no will at all: the sign of a deficient or illegitimate will, or even (why not?) the first symptom of a genetic disorder.’ By the term ‘governance’ I refer to the Foucauldian and post-structuralist approach of thinking about the linkages between questions of government, authority and politics, and questions of identity, self and personhood. The notion of governmentally, developed by Foucault mostly in his lectures at the Collège de France, allows to think about the linkages existing between the technologies of power and the technologies of the ‘self’, a specific relation to oneself that commands the constitution of oneself as moral subject. See Foucault (1984b: 36–45). I use the concept of racialized group, suggested by Kwame Anthony Appiah to designate the racial categorisation imposed on certain groups on the basis of superficial attributes or gross morphology such as skin colour, hair texture, etc. For a critique of Sander’s paper, see Moran (2005). See, in particular, the article by Robert J Sternberg, ‘There are no public-policy implications. a reply to Rushton and Jensen.’ (Sternberg, 2005)

Chapter 4

Genetic conceptualisations of ‘normality’ and the idea of genetic justice

L’évidence, c’est la présence pour la conscience de l’objet en personne . . . Une évidence, c’est une présence. (Jean-Paul Sartre (1940), L’imaginaire, Gallimard, p 201) Pragmatism makes us aware that the everyday practice rules out suspending claims to truth in principle. The network of routine practices relies on more or less implicit beliefs that we take to be true against a broad background of inter-subjectively shared or sufficiently overlapping beliefs. Everyday routines and habituated communication work on the basis of certainties that guide our actions. This ‘knowledge’ that we draw on performatively has the platonic connotation that we are operating with ‘truths’ – with sentences whose ‘truth’ conditions are fulfilled. (Jürgen Habermas (2005), Rightness versus Truth, in Truth and Justification (Studies in Contemporary German Social Thought), MIT Press)

The surfacing of pre-symptomatic and susceptibility genetic information requires us to redefine what exactly represents normal inherited conditions and what deviation from that normality constitutes a valid need for medical and genetic care. According to the standard medical model, necessary medical care was conceptualised as the prevention and treatment of illnesses, diseases and dysfunctions, and the restoration of normal functioning. In the 1980s, the distinction between therapy and enhancement served as criteria of access to publicly funded medical care. But the distinction soon failed to provide clear-cut solutions when psychiatric care, plastic surgery, and fertility clinic services became more common. There is no single standard of health. The World Health Organization’s definition of health as ‘a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity’1 seems to have opened the way for a more inclusive notion of human health, broader than the mere absence of substantial impairment2 whilst, at the same time, attributing to the healthcare sector the role of guaranteeing, to a certain extent, people’s quality of life.3

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A. Determinants of normality: the consensus human genome sequences as ‘normal genomes’ Before the launching of the Human Genome Project, gene mapping and sequencing had been practised in molecular biology for some time but on an ad hoc basis: from observed phenotypic changes or pathologies, attempts were made to track the expression of symptoms to gene sequences which were then isolated and characterised. The assumption was that genetic alterations were associated with phenotypic expressions but not that those genetic alterations were central or exclusively determining phenotypic expressions. The Human Genome Project replaced that ad hoc attitude: the availability of the global sequence of the human genome soon reoriented research to detecting variations from the ‘genetic norm’ that had been produced. During the first decade of the Human Genome Project, emphasis was placed on the study of what human beings have in common. The Human Genome Project highlighted the universality of the human genome. It did this so well so that it could claim to have provided a means to see and describe the normal human genome. Despite the Congress of the United States Office of Technology Assessment’s 1988 statement that ‘the idea of genetic normalcy, once farfetched, is drawing closer with the development of a full genetic map and sequence’,4 the human genome reference sequences are merely consensus sequences and cannot be said to represent a ‘typical’, ‘average’ or ‘normal’ human being. Suggesting, as Renato Dulbecco (one of the first scientists to put forward the idea of a large-scale sequencing of the human genome) did, that ‘[t]he sequence of the human DNA is the reality of our species’ (Dulbecco, 1986), is misleading. The human genome as it is described in the published reference sequences does not exist5 as a unique genome common to all human beings. No one actually possesses a genome identical to that described by the Human Genome Project. At best, the genome sequences published by the HGP and Celera are conventional templates. The human genome reference sequences are composite maps based on chromosomal segments originating from a few different individuals. In fact it seems that the majority of the DNA used to compile the HGP and Celera reference sequences originated from just two men: 74.3 per cent of the HGP sequence is derived from one male individual, presumably from the Buffalo area, while 71 per cent of the Celera sequence has been compiled from the genome of one single individual, selected among five donors, two males and three females – one African-American, one Asian-Chinese, one Hispanic-Mexican, and two Caucasians, DNA from the four other donors being used to fill in the gaps (Gannett, 2003). The human genome produced by the Human Genome Project is, in Thomas Lemke’s words, merely a consensus genome: In view of this constitutive deviation, the genome project is aimed at nothing less than the construction of a consensus genome, . . . i.e. a

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uniform genetic standard which can be derived from the DNA sequences of various individuals without therefore being identical with the DNA of a single natural person. The human being in the Human Genome Project is, in other words, a canonical sequence compiled from many individuals. This certainly does not mean that in the case of this artificial human we are dealing with a democratic representation of individuals or a statistical median of the population. Instead, the human in the human genome is a very special person who will possess both an X and a Y chromosome. It will therefore be a man. Thus he will be an average collection in terms of his chromosomes, of sequences (i.e. the chemical structures found in his genome) which occur in men and women of different nations: the United States, Europe and Japan. In other words, he will be an average male from the industrialised nations, who together are internationally researching the genome. (Lemke, 2004) Given the discrepancy between the limitation of the Human Genome Project’s sampling from predominantly white, northern populations and its declared ambition to create a generic genome, the Human Genome Diversity Project (HGDP) was launched in 1993 with the aim of concentrating the efforts of anthropologists, geneticists, doctor, linguists and other scholars from around the world to document the genetic variation of the human species worldwide. The project of mapping ‘ethnic’ diversity in human species was presented as a necessary complement to the HGP. Unsurprisingly, the project faced strong opposition and was mainly accused of using twenty-firstcentury technology to propagate concepts of nineteenth-century racist biology, and to violate the rights of indigenous people by considering them as research and patenting material (Lock, 1999; Reardon, 2001, 2004). Although initially intended to investigate genetic variations in a broad range of ‘ethnic’ populations, the HGDP soon applied itself to obtaining samples from particular populations that are on the verge of disappearing.6 That targeting of discrete, marginal populations reinforces the notion that the HGP had provided a ‘generic’ human genome, whereas the genomes described by the HGDP were necessarily translating the ‘marginal’ identities of the ‘exotic’ others (Karpin, 2005: 208). Although the genomes produced by both the HGP and the HGDP are metaphoric, the genome produced by the HGP is perceived to be the normal genome, while those produced by the HGDP are ‘outside’ the norm.7 The HGDP, however well intentioned, revives the theories professed by typologists: an essentialist approach to human genetic variation, as they consider some or all genetic variation as deviation from a norm that defines species or populations in terms of the genetic characteristics of their members. Typologists believe that biological species – and particularly the human species – can be defined in terms of certain properties essential for membership of the human group. These properties provide a standard of normality

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or typicality.8 Population thinkers, on the contrary, believe that membership of a species derives from genealogical relationships, and that there is no inbuilt standard for phenotypic or genotypic normalcy or typicality (Gannett, 2003: 146). There is no achievable categorisation by reference to a genetic normalcy. According to the theory of evolution, there is no such thing as a fixed ‘normal’ genome for a species. From an evolutionist viewpoint, what is normal is variation, as it is variation that allows evolution. The HGP alone did not provide a basis for a typological approach: ‘To say that a set of genes such as those published as the consensus human genome sequences are typical or normal for the human species would require that virtually all members of the species be shown to share the same genes. The concept of a norm . . . implies that the majority of the population must or should somehow be part of the norm. Such genes and functions cannot be revealed simply by sequencing the partial genomes of a small number of individuals.’9 Yet, the additional work of the HGDP risks creating the impression that there is indeed a ‘normal’ dominant human genome and several ‘marginal’, ‘exotic’ and soon-to-be extinct genomes. ‘Understanding genetic data as a deviation from a canonical genomic norm is an interpretive choice, connected . . . with the methodological shift after the sequencing of the human genome was established as a coordinated project. It is not intrinsic to the information provided by molecular biology’ (Scully, 2005: 63). In the legal sphere, the dominant view perceives ‘the human genome’ as both the biological basis of individual identity and the ‘heritage of humanity’, the integrity of which has to be protected by international and national prohibitions of germline gene modification. Notwithstanding the fact that no such ‘genetic legacy’ may in fact be identified and delimited as the genome is constantly recombined each time an individual is conceived, and is constantly mutating,10 Article 1 of UNESCO’s International Declaration on Human Rights and the Human Genome (1997) states that ‘The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity. In a symbolic sense, it is the heritage of humanity.’ Article 3, however, acknowledges that: The human genome, which by its nature evolves, is subject to mutations. It contains potentialities that are expressed differently according to each individual’s natural and social environment, including the individual’s state of health, living conditions, nutrition and education. Nevertheless this article describes external factors that influence individual genotypes as ‘mutations’, thus implicitly confirming the notion of a ‘genetic norm’ (Rock, 1997). The prohibition of certain practices of genetic engineering, such as reproductive cloning or germline therapy are grounded on conceptions that consider deliberate alteration of the human genome as an infringement of human dignity. As a consequence, the Convention of the

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Council of Europe on Human Rights and Biomedicine provides in its Article 13 (Interventions on the Human Genome), that ‘An intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic or therapeutic purposes and only if its aim is not to introduce any modification in the genome of any descendants.’ The Convention’s explanatory report states that: ‘The progress of science, in particular in knowledge of the human genome and its application, has raised very positive perspectives, but also questions and even great fears. Whilst developments in this field may lead to great benefit for humanity, misuse of these developments may endanger not only the individual but the species itself. The ultimate fear is of intentional modification of the human genome so as to produce individuals or entire groups endowed with particular characteristics and required qualities. In Article 13, the Convention provides the answer to these fears in several ways. In every case, any intervention which aims to modify the human genome must be carried out for preventive, diagnostic or therapeutic purposes. Interventions aimed at modifying genetic characteristics not related to a disease or to an ailment are prohibited. As long as somatic cell gene therapy is currently at the research stage, its application can be allowed only if it complies with the standards of protection provided for in Article 15 and the following Articles. Interventions seeking to introduce any modification in the genome of any descendants are prohibited. Consequently, in particular genetic modifications of spermatozoa or ova for fertilisation are not allowed. Medical research aiming to introduce genetic modifications in spermatozoa or ova which are not for procreation is only permissible if carried out in vitro with the approval of the appropriate ethical or regulatory body. On the other hand the article does not rule out interventions for a somatic purpose which might have unwanted side-effects on the germ cell line. Such may be the case, for example, for certain treatments of cancer by radiotherapy or chemotherapy, which may affect the reproductive system of the person undergoing the treatment. The motivation of the acts will thus be paramount in the assessment of their legality.’ These texts illustrate the global perception that the genome is uniquely definitional for the individual and collective identity of human beings, and that it imposes an obligation not to alter it deliberately. The assumption is that having one’s genome deliberately modified by other human beings rather than configured by the natural lottery would both negatively impact on one’s dignity as an individual and threaten the integrity of the human species.11 The embracing of genocentric representations by the law results in the concept of identity being mainly defined in biological rather than in social terms. As Dreyfuss and Nelkin observed (Dreyfuss and Nelkin, 2002):

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[s]ociety appropriates science to support prevailing values, sometimes extending it beyond the limits of well-accepted knowledge. Thus the enthusiasm of some members of the scientific community draws public attention to genetic relationships. Media articles on reproductive technologies imply that women should reproduce at all costs for they will be emotionally desperate without their own children. Those unable to conceive seek out surrogate mothers in order to have genetically related children. Films and articles on parent-child relationships suggest the importance of genetic integrity, of ‘flesh and blood’. Genealogy services are flourishing as people pursue their roots. ‘How To’ books and articles written for adoptees stress the importance of finding one’s natural or birth parents and suggest that knowing one’s genetic heritage is a way to define identity. The very concept of identity is defined more in biological than in social terms. In Bragdon v Abbott,12 for example, the United States Supreme Court equated ‘limitations on reproduction’ with a disability for the purpose of the Americans with Disabilities Act: The life activity upon which the respondent relies, her ability to reproduce and to bear children, constitutes a ‘major life activity’ under the ADA. The plain meaning of the word ‘major’ denotes comparative importance and suggests that the touchstone is an activity’s significance. Reproduction and the sexual dynamics surrounding it are central to the life process itself. In the United Kingdom, IVF for infertile couples has become considered a medical necessity justifying that the NHS will fund one free IVF treatment cycle for infertile couples when the woman is under 40.13 Indeed, as observed later in this book, the genetic reconceptualisation of individual identity has far-reaching consequences for the ‘legal subject’.

B. Determinants of abnormality and disease: from symptoms to their presumed genetic roots Extension of the notion of ‘genetic disease’: from phenotypes to genotypes Objectivist views about disease consider that there are facts about the human body on which the notion of disease is founded. Their opponents, called constructivists,14 contend that such an organic conception is merely an illusion. They argue that any agreement on the definition of disease, or any universally accepted characterisation of an individual trait as disease, is always contingent upon a universal, yet sometimes unnoticed, acceptance of a

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value system.15 The displacement of perception from phenotype to genotype and the new representations of what counts as ‘genetic disease’ transcend the opposition between objectivist and constructivist views. According to the genetic paradigm, the localisation of ‘abnormal’ genes in an individual’s cells encourages an objectivist view of disease: carrying those genes is the marker of disease.16 At the same time, as will be further explained later, individual characteristics that require biomedical interventions, lifestyle adaptation, preventive actions, etc. are not confined to the traditionally conceived ‘diseases’ but come to include any condition that prevents individuals from fully participating in socio-economic life. ‘Diseases’, in that sense, are ‘constructed ’ as a failure to reach a ‘normal’ level of social and economic participation. With the rise of genetics as new reperesenational regime, the critera of ‘genetic disease’ tend to shift from phenotype to genotype. The standards of disease or abnormality migrate, it seems, from a set of functions to a set of genes, from ‘visible’ symptoms to their assumed genetic roots. From a restrictive postSecond World War definition of ‘genetic diseases’, which only encompassed monogenic diseases with 100 per cent heritability – thus, diseases with a very high degree of penetrance – such as Huntington’s disease and Phenylketonuria (PKU), the concept of genetic disease has evolved to a broader conception which includes complex polygenic and multifactorial conditions with less than 100 per cent heritability: heart diseases, some forms of cancer, diabetes, and autism have been gradually included in the category of genetic diseases.17 As tests are being developed to identify the presence of genes correlated with complex behavioural traits, such as schizophrenia, alcoholism, etc. the expansion of the category of ‘genetic diseases’ is virtually infinite. One may but agree with Capron’s critique of such an expansion (Capron, 1990): To speak of a genetic disease presupposes the category of nongenetic diseases. But genes do not have diseases, only organisms do. And the human organism always exists in an environment. In a different environment, that which is manifested as a ‘genetic disease’ would be no disease at all. Simultaneously to the expansion of the notion of ‘genetic disease’, one logically experiences a correlative expansion of the notion of ‘patient’: the notion of ‘patient’ has come to incorporate healthy individuals found to be at risk of disease (Scott et al, 2005), and who reposition themselves as patients in order to benefit from screening, monitoring and preventive services. Rogeer Hoedemakers and Henk ten Have (Hoedemakers and ten Have, 1999), having reviewed textbooks on medical genetics, (semi-)official reports and articles focusing on genetic screening and testing of cystic fibrosis and prenatal diagnosis and books on recent developments in molecular genetics intended for a broader public, observed that, ‘. . . the concept of abnormality is often used independent of the degree of certainty with which the altered genotype develops into a (seriously) harmful phenotype’.

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Conceptualising ‘abnormality’? The abstract norm of the normal human genome is easily blurred not only with the capabilities required for functioning in the advanced free-market economy, but also with optimal responses to drugs developed and marketed thanks to the growing pharmacogenomic capacities. Shildrick rightly observed that ‘while the abstract genomic body marks a site of largely inaccessible epistemic practices, they are ones that nevertheless mark out the composition of the materially embodied norms that affect us all’ (Shildrick, 2004). The reframing of abnormality as a deviation from the standard human genetic sequences produced by the Human Genome Project, or as a sub-optimal response to newly marketed drugs, for example, shifts the standard of normalcy away from both the controversial locations where typologists and population thinkers had placed it and from phenotypic standards, and binds it to the evolving offerings of human genetic services. Standards of ‘normalcy’ and ‘health’ are defined less by reference to the ‘normal functioning’ of the organism and increasingly by reference to the development of new biomedical devices targeted at variations from the ‘normal genome’. The more the availability of genetic services increases, the broader the concept of genetic disease becomes, and ‘[The] wider the definition of disease and the narrower the view of normalcy, the bigger the genetics market’ (Caufield, 1999). While the artificiality of concepts of disease and abnormalcy becomes eminently visible in this process, ‘linguistic’ resources to enunciate and locate their new unstable, dynamic, changing anchors are missing.18 The concepts of disease and abnormalcy appear to have become exemplary instances of Derrida’s ‘metaphysics of presence’ according to which privilege is granted, and the quality of truth is acknowledged, to that which is most apparent to our consciousness over that which is absent.19 Well before the phantasmagoric prospects of human genetic engineering become real, and even if those prospects never come true, the sweeping process already challenges the normativity of a given, normal, healthy human nature. In medical deontology as in law, freedom and responsibility had traditionally been conceived as intrinsically limited by the given human nature, and that limit was ascribed a normative value.20 Article 12 of the Council of Europe’s Convention on Human Rights and Biomedicine prescribes that: Tests which are predictive of genetic diseases or which serve either to identify the subject as a carrier of a gene responsible for a disease or to detect a genetic predisposition or susceptibility to a disease may be performed only for health purposes or for scientific research linked to health purposes, and subject to appropriate genetic counselling. Article 23 requires that ‘An intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic or therapeutic purposes

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and only if its aim is not to introduce any modification in the genome of any descendants’.21 The Convention seems to presuppose ‘genetic diseases’, ‘health purposes’, ‘preventive, diagnostic or therapeutic purposes’ to have given meanings and to be stable standards. Yet, shifts in the representation and definition of health and normality resulting in part from genocentric perceptions place those standards, along with the standard of ‘human nature’, in levitation, suspended to technological drifts.

C. Towards a socio-economic definition of ‘normal species functioning’ The substitution of external biotechnological and neoliberal teleologies to individual organic teleology Transformations in the concepts of disease and normality result in changes in the concept of medical need, which ceases to be a biological given,22 and becomes a function of technological possibility, the idea being that the more genetic tests and successful therapies are developed for so-called genetic disorders, the more the health of those without access to these services will decline in comparison to those with access.23According to Georges Canguilhem, the ‘normal’ may be a standard set according to choices and decisions external to the object characterised as normal (the normal train is the train that fits the space between train tracks), or the ‘normal’ may be defined and qualified by reference to the intrinsic qualities of the object. In both cases, the specificity of an object or fact said to be ‘normal’ by reference to either external or internal norms raises the possibility that it becomes itself taken as a reference for objects awaiting their characterisation as normal.24 ‘[O]nce human nature loses its metaphysical status, individual can be judged only with reference to the social, more precisely, with reference to the average man’, Ewald (1990) maintained. Yet, Skouteris (2004) usefully explained that the diversity of normative status that has been attached to the notion of the average man testifies to the normative content of statistical discourses. Although Quetelet initially conceived the ‘average man’ as a summary of the characteristics found in a population, he ended up conceiving the average man as a normative ideal type, the symbol of perfection. He was fascinated by similarities and used the term ‘errors’ in order to designate the divergences from the mean. Galton was, on the contrary, by reason of his eugenic interest in heredity, fascinated by exceptional human traits, which, he believed, confirmed the Darwinian theory of evolution. That is why he called divergences from the mean ‘deviations’ or ‘dispersions’ and not ‘errors’, and used the term ‘mediocrity’ in order to designate the average. Anyway, when the social or the ‘average man’ (be that notion defined following Quetelet or following Galton) becomes the standard against which

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normality and deviations are articulated,25 the ‘normal’ is increasingly defined by reference to standards external to the individual.26 In the socioeconomic field, the notion of impairment or disease is increasingly coalescent to the concept of disability, while the notion of disability extends to ‘the fact of being regarded as disabled’. Those standards external to the individual (or, shall we say, impersonal) are also alien to classical normative conceptions of nature. The term ‘nature’ has always been ambiguous though. The Greek notion of physis, for example, is broader than the French notion of nature, whose Latin origin links to the verb naître in French (nascor) and to a notion of natality or genesis of things. By contrast, the Aristotelian notion of nature or physis involves – rather than a fixed origin – an innate thrust towards alteration, transformation, metamorphoses, a movement guided by an internal teleology (Aristotle, 1979 [350BC]). The Continental tradition seems attached to a concept of nature definitionally opposed to the teleology of artificiality, a concept of nature as something spontaneous rather than created, and that attaches value to the integrity of the spontaneous or inherent teleology of organisms, given in the past. Typically, the French romantic conception of nature tends to consider that what is natural is what has been generated by nature, without artificial, human intervention. According to John Stuart Mill, The word nature has two principal meanings: it either denotes the entire system of things, with the aggregates of all their properties, or it denotes things as they would be, apart from human intervention. In the first of these senses, the doctrine that man ought to follow nature is unmeaning; since man has no power to do anything else than follow nature; all his actions are done through, and in obedience to, some one or many of nature’s physical or mental laws. In the other sense of the term, the doctrine that man ought to follow nature, or, in other words, ought to make the spontaneous course of things the model of his voluntary actions, is equally irrational and immoral. Irrational, because all human action whatever consists in altering, and all useful action in improving, the spontaneous course of nature. Immoral, because the course of natural phenomena being replete with everything which when committed by human beings is most worthy of abhorrence, any one who endeavoured in his actions to imitate the natural course of things would be universally seen and acknowledged to be the wickedest of men. The scheme of Nature, regarded in its whole extent, cannot have had, for its sole or even principal object, the good of human or other sentient beings. What good it brings to them is mostly the result of their own exertions. Whatsoever, in nature, gives indication of beneficent design proves this beneficence to be armed only with limited power; and the duty of man is to cooperate with the beneficent powers, not by imitating, but by perpetually striving

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to amend, the course of nature – and bringing that part of it over which we can exercise control more nearly into conformity with a high standard of justice and goodness.27 (Mill, 1998) J S Mill prefigures modern liberal egalitarians: this excerpt might be interpreted as advocating a genetic interventionist approach to genetic disabilities of the kind advocated by Buchanan et al (Buchanan, 2001). Justice in the genetic era, these authors argue, demands that genetic traits incompatible with normal participation in the ‘current dominant cooperative framework’ (observing that ‘in the US and other developed societies, cooperative framework consists, to a large extent, of the competitive market system’) be genetically enhanced even though possession of such genetic traits does not cause disease in the classical sense of the term and even where possessing those genetic traits does not cause suffering. The substitution of an external teleology to the individual organic teleology arises in a context where the present tends to prevail as the unique figure of authenticity, and where reality has become a concept entirely comprised in the present, the temporal mode of real-time (Brown, 2003). Rubenfield noted that ‘Indeed, one of the emerging constant in the theorization of futurity is that it is only the present which is real to us whereas the past and the future are only available to us through imagination and representation.’ Whereas ‘[w]e are used to thinking of modernity as defined in part by future-oriented ideals of progress, increasing technological control, and so on . . . modernity achieved its break with the past only by according the present the most profound normative and ontological privileges, and this privileging of the present eventually gave to modern man . . . as little reason to think of his society’s future as he has to think of its past’ (Rubenfeld, 2001: 4). In this cultural perspective, the current presence of things, rather than their spontaneous genealogy, is taken as a sign of their belonging to the domain of truth, authenticity or facts. In such an intellectual framework, technology may be opposed to nature, though not necessarily. One may wonder whether ‘adaptation to normal species functioning’, defined according to the external teleology of the present state of biotechnology and the current neoliberal mode of cooperation, would also require, if ever possible, the alteration of genetic configurations predisposing an individual to sub-optimal temperaments and behaviours. In behavioural genetics, very limited statistical correlations continue to be used to comfort the widespread idea that any physical or psychological disease or any behavioural trait, within the ‘normal range’ or ‘abnormal’, has a privileged genetic cause.28 The aim is to provide people (and society) with probability estimates of behavioural traits to which they or their children are genetically predisposed (Watts, 2004; Rose, 2004; Hedgecoe, 2001). Current and future behavioural genetic read-outs promised by behavioural genetics might include not only a

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list of the subject’s basic personality predispositions such as altruism, empathy, optimism, tendencies towards extraversion, novelty-seeking and other traits usually studied by personality or social psychologists,29 but also a list of any behavioural or social illnesses such as schizophrenia (Peltonen, 1995; Gershon, 1998), depression,30 Alzheimer’s,31 autism,32 attention-deficit hyperactivity disorder (ADHD),33 Tourette’s syndrome (Price, 1985) and ‘deviant’ behavioural characteristics such as alcoholism34 or even criminality35 or susceptibility to aggression, sexual orientation,36 substance abuse (Gordon, 1994), infidelity,37 rape and exhibitionism (Brunner et al, 1993), and other conduct deemed antisocial. Mental health clinicians, criminologists and personality psychologists conceptualise and measure antisocial behaviour somewhat differently but all three fields have in common the underlying assumption that antisocial behaviour is behaviour that violates the rights and safety of others38 that the subject is at risk of developing (Florencio, 2000: 533). The scientific validity of most so-called behavioural genetic research is highly questionable. A recent example is the publication, in the very serious Proceedings of the Royal Society of London, of a specious twin study that claims to prove the genetic influences on variations in female orgasmic function on the basis of responses by adult females from the TwinsUK register to a questionnaire including questions on sexual problems. On that basis, the authors pretend to have shown that the wide variation in orgasmic dysfunction (sic) in females has a genetic basis and cannot be attributed solely to cultural influences (Dunn, 2005). The finding of a ‘gene for’ female anorgasmia would not only minimise the relational and environmental causes of such a ‘dysfunction’ and reframe that behavioural trait as a ‘disease’, it would also open the way to develop and commercialise new financially promising ‘drugs’ that would ‘cure’ that newly defined female genetic disease. Besides the questionable scientific validity of those researches, their desirability is even more uncertain. As far as deviant behaviours are concerned, their linkage to genetic factors has led to significant controversies. As such behaviours are socially and contingently defined as abnormal or nonconventional, they are political in nature and are highly susceptible to generating stigmatisation and discrimination. As cultures vary in their definitions of normalcy and deviance and since some behavioural conditions, such as schizophrenia, are widely considered as illnesses whilst other behavioural traits consisting in borderline personality disorders may be socially acceptable or completely rejected depending on the cultural context, some scholars advocate assuming the broadest possible definition of what is normal in order to minimise harm to those whose behaviour differs from the majority (Wertz et al, 2001: 61). The Nuffield Council’s Report on genetics and human behaviours (Nuffield Council on Bioethics, 2002), restricting its field of investigation to ‘human behaviour within the normal range, as opposed to traits that are defined as illnesses or diseases’, noted the difficulties in defining a normal range of

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behavioural traits. To avoid accusations of stigmatising certain kinds of behaviour, namely those that are at the extremes of an acceptable range, the Nuffield Council chose to define, for the purposes of its report, the normal as having a statistical meaning, as referring to the range of variation, ‘usually that which includes about 95 per cent of the population, and which is thought not to contain any individuals with clinical disorders or diseases’. However, it recognised the possibility of defining an abnormal behaviour as a ‘behaviour which results in impaired function in society for the individual, either from the individual’s own perspective, or from an objective standpoint, regardless of whether the behaviour is statistically rare or not’. In contrast with the concept of ‘normal species functioning’ as capacity for normal participation in the ‘current dominant cooperative framework’, Canguilhem insisted on another conception of adaptation, as adaptability over time rather than optimal adaptation to the present. Distinguishing between a form of adaptation that is a specialisation for a given task in a stable environment, which is threatened by any accident modifying that environment, and another form of adaptation which is freedom from the constraints of a stable environment, and thus power to overcome any difficulties arising from a change in environment, Canguilhem defined the normality of a species as a certain tendency to variety, which constitutes a kind of insurance against excessive specialisation without reversibility and flexibility constituting successful adaptation. When it comes to adapting, perfect adaptation, Canguilhem further argues, is the beginning of the end of species.39 Adaptation, as adaptability to environmental and contextual changes, is a principle of openness to the development of an unpredictable future environment, which calls to mind the previously mentioned Aristotelian notion of nature (physis) as an innate thrust towards alteration, transformation, metamorphoses. Adaptation as adaptability is, in a sense, incompatible with adaptation as optimisation, in the pragmatic sense (as a principle that moulds the organisms almost exclusively by reference to the present, immediate expectations and demands of the current environment, or of the dominant cooperative framework). Having this distinction in mind, one understands why Hannah Arendt was opposed to the myth of progress, despite her passion for the new: ‘Le progrès est le programme du Genre humain, menant son action derrière le dos des hommes en chair et en os.’40 Whereas the new is linked to the unexpected, progress, on the contrary, involves the linear development, be it exponential, of an external, technological model that is already present. The potentially psycho-pathogenic effect of substituting external biotechnological and neoliberal teleologies to individual organic teleology in the definition of standards of normality and health has been identified by various critical social scientists and psychoanalysts. Buin (2003) argues that:

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[n]ormopathy is the new form of desubjectivation: naturalized, normalized, finalized as to perceive social processes as natural, the normopath’s language, thoughts, behaviours, molded on the goals of performance and efficiency, have lost all their potential for contestation. The normopath’s virtues are acceptance and docility. His life is entirely planned according to a program that is integrated into an immense anencephal machinery.41 Jacques Lacan explained how the autonomous self is produced as an optical effect as a body attempts to conform to an encoded visual surface and to inhabit a landscape constituted as the field of another’s gaze. Thus, Lacan writes, the subject ‘caught up in a lure of spatial identification’ assumes ‘an alienating identity, which will mark with its rigid structure the subject’s entire mental development’.42 Guillaume Leblanc, after Lacan, writes that: [W]ithout this race for normality that originates initially in violence resulting from the child’s necessary attachment to parental law, synonymous to his attachment to social rules, I am never confident of performing enough. How can I be assured that I am sufficiently complying with the norm? Shouldn’t I demonstrate it more? The race towards normality is an endless race. Any life is an unjustified life that seeks to justify itself with reference, precisely, to the norms. Justification is a process that exceeds the idea of justice that it contains. . . . That is why any standpoint holding that the just precedes the good is necessarily partly insufficient. It fails to address that primal condition, anterior to justice, which is that ‘normality’ can only have a subjective meaning, which points to an existence’s minimal cohesion, that which provides for a particular possibility of persistence, despite that existence’s inherent sufferings.43 ‘Liberal eugenism’ and the neoliberal dreams of equality The question of ‘liberal eugenism’ has been widely addressed in the literature.44 Because those issues have been so widely discussed by others, and because other less spectacular issues require more urgent attention, I will not provide here a full discussion of liberal eugenism per se. More important for my purpose here is to identify the features of the socio-political climate attested by the weight given to the issue of liberal eugenism in legal, economic, social and political discourses. Notwithstanding the intellectually exciting character of the debates about germ-line genetic therapy and enhancement, cloning and other issues related to the genetic engineering of humans, the spectacular appeal of those virtual questions to philosophers, lawyers, sociologists and others rests on three dubious intellectual assumptions (Salvi, 2002). Genetic reductionism (the

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idea that genes are crucial in ‘programming’ the prospects of health, diseases, and most non-pathological traits in humans), genetic essentialism (professing that genes are the fundamental definitional resource of identity and the locus of a being’s authenticity) combine with blind confidence that genetic technology will allow human beings to control, through genetic engineering, the phenotypic outcomes of their interventions on genes, not only for monogenic diseases, but also for a wide range of common polygenic, multi-factorial diseases, and for non-diseased, socially desired traits. While libertarian scholars campaign against future legal restrictions to consumers’ right to purchase whatever genetic services they would choose, the prognosticated worsening of inequalities ensuing from a market-based approach to the distribution of genetic enhancement has made egalitarians consider whether some forms of genetic enhancement would be due as a matter of justice to those less favoured by the ‘genetic lottery’ whose ‘natural assets’ are insufficient to allow them to participate effectively in the social cooperative framework. In an atmosphere saturated with genomic mythology, a prevalent fear is that the use of genetic engineering technologies will result in the creation of a genetic underclass or a genetic ghetto composed of people systematically discriminated against and stigmatised because they have a sub-optimal genetic makeup. The phantasmagoric prognostication of a society divided between a wealthy genobility – composed of people belonging to families who could afford to pay to be genetically enhanced – dominating the poor ‘naturals’ who did not have the means or wish to invest in their own genetic enhancement, are among the darkest nightmares inspired by human genetics. The now famous argument popularised by Buchanan and colleagues is that if a sufficient number of wealthy people choose to privately finance genetic enhancement of their children or themselves, and the dominant cooperative framework accordingly undergoes significant shifts, it may happen that some citizens, currently participating in the dominant cooperative framework (F1), become unable to reach the minimal level of participation in the new dominant cooperative framework (F2). In their book From Chance to Choice, Buchanan et al (2001) recommend that some people should be enhanced when necessary in order for them to meet the threshold of strengths and talents expected for participating in the new F2 cooperative framework, rather than changing or adapting the cooperative framework to remain open to the inclusion of all the genetically naturals (not-enhanced). Buchanan and his colleagues even suggested that: [I]t is not inconceivable that we would come to reclassify as a disease any correctable genetic condition that has a significant adverse impact on equality, because we would come to regard it as an adverse departure from normal functioning.45 (Buchanan et al, 2001)

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It is thus not inconceivable either that we would come to reclassify as a disease any detectable genetic trait that would also negatively impact on opportunities. Because there is no good reason to distinguish and privilege genetic over other epigenetic and environmental causal contributions to phenotypic traits impairing full participation in the dominant cooperative framework, one might well agree indeed with the idea that genes are just another type of developmental resource that should be, like all other developmental resources, included in considerations of distributive justice. Yet genetic engineering is probably not, in most if not in all cases, the most appropriate, efficient and practical means of achieving equality of opportunity.46 But in the current dominant representation, adapting or upgrading individuals is presented as more efficient than altering the ‘naturally evolving’ dominant cooperative framework in order to make it more hospitable for the broadest variety of identities and abilities. Whereas the notion of ‘normal species functioning’ is increasingly shaped by reference to the features and requirements of the dominant cooperative framework, the role of healthcare becomes increasingly understood as the provision of the physical and psychological conditions for equality of opportunity and full participation in the dominant cooperative framework. ‘Liberal eugenism’, despite its rejection of authoritarism and its proclaimed respect for individual choice and human diversity, shares several features with ‘old’ eugenism. As already suggested earlier, liberal eugenism efficiently ‘imposes’ specific expectations of human normality and functioning that are unconsciously or consciously endorsed by individuals disciplined by the imperative of genetic self-knowledge, genetic risk avoidance, etc.47 As already maintained before, individual preferences, tastes and desires are not pre-social natural phenomena. Also like the old eugenism, liberal eugenism further deepens the gap between ‘causes’ of diseases or disabilities (which are increasingly identified as genetic, thus endogenous, inherent to the individual, contained in the individual’s genetic structure) and ‘criteria’ or standards of health, normality, or ability (which are increasingly exogenous or impersonal). A further comment I wish to make here refers to the paradox that the idea that genetic enhancement might be appropriate as a matter of justice seems particularly appealing in the United States. That the notion that genetic services, including genetic enhancement of non-pathological traits, will be beneficial to equalise opportunities in society be so pervasive in the United States sounds somewhat paradoxical, as, traditionally, the ‘state action doctrine’ prevents the State from correcting or compensating for inequalities that are not of its own creation. According to a conservative interpretation of the state action doctrine, still influential in the United States, disparities in opportunities that occur ‘naturally’, which are not the result of historic oppression or domination, are not ‘unjustly created’ and do not require redress or compensation by society. Natural or economical barriers to

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equality of opportunity are thus to be borne by those afflicted by them.48 The abortion funding case is exemplar in this regard. In Roe v Wade,49 the Court had decided that (1) abortion is encompassed within the right to privacy; (2) that restrictions to abortion must be narrowly tailored to serve compelling state interests; (3) that before viability, the state’s interest in foetal life is not compelling; (4) that after viability (after the end of the first trimester), the state must allow abortion as necessary to protect a woman’s health or life. The same day, in Doe v Bolton,50 the Court had defined the concept of health as including ‘all factors – physical, emotional, psychological, familial, and the woman’s age – relevant to the well-being of the patient’. In 1976, in an attempt to undermine Roe through regulation, the Congress enacted the first Hyde amendment as a rider to the appropriation bill for the Department of Health, Education and Welfare (later renamed the Department of Health and Human Services (HHS)). The amendment forbids the use of federal funds (Medicaid and all other HHS funds) for abortions provided to poor women, except in cases where abortion is necessary to save a woman’s life or in case of rape and incest. First implemented in 1977, the Hyde amendment has guided public funding for abortions under the joint federal-state Medicaid programs for low-income women.51 On June 20 1977, in Mahler v Roe,52 Beal v Doe53 and Poelker v Doe,54 the Supreme Court upheld the restrictions on public funding for abortion. In Mahler, the Court declared that restriction on funding non-therapeutic abortions ‘does not impinge upon the fundamental right recognized in Roe’ because it imposes ‘no restriction on access to abortion that was not already there’. In the same decision, the Court decided that the equal protection clause of the Fourteenth Amendment does not require funding of abortions that are not therapeutic for indigent women just because it covers the expenses associated with childbirth. It thus considered that States may constitutionally promote childbirth over abortion through Medicaid. In Beal, it was confirmed that the federal Medicaid status does not require funding of abortions that are not medically necessary. In Poelker, it was found that public hospital’s failure to provide non-therapeutic abortions did not violate the equal protection clause. In Harris v McRae55 the plaintiffs challenged the government’s failure to fund medically necessary abortions for poor women. The Supreme Court held that: ‘. . . Although government may not place obstacles in the path of a woman’s exercise of her freedom of choice, it need not remove those not of its own creation, and indigency falls within the latter category’, and that ‘[A] wom[a]n’s freedom of choice [does not carry] with it a constitutional entitlement to the financial resources to avail herself to the full range of protected choices’.56 The decision was much criticised. In his dissenting opinion, Justice Brennan, joined by Justices Marshall and Blackmun, decried the Court’s ‘failure to acknowledge that the discriminatory distribution of the benefits of governmental largesse can discourage the exercise of fundamental liberties just as effectively as can an outright denial of those rights through criminal and

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regulatory sanctions’. Justice Stevens, in another dissenting opinion, argued that government must use neutral criteria in distributing benefits. Another exemplar case of the United States Supreme Court’s reluctance to consider that individuals may claim assistance from the State is DeShaney v Winnebago Country Dept of Social Services,57 the Supreme Court had to determine a claim raised by Joshua DeShaney against state workers who, despite receiving reliable reports that Joshua was physically abused by his father as a four-year-old, did nothing to protect him. Eventually, the boy fell into a coma as the result of beating and emerged with severe mental retardation. He claimed that the relevant state agencies should have protected him. The Court, after having expressed compassion, refused to consider how the State’s protective agencies should have acted in such a case, whether it should have acted or whether its indifference was legitimate, considering that the harm suffered by Joshua was caused by Joshua’s father, not by the State. The [Due Process] Clause is phrased as a limitation of the State’s power to act, not as a guarantee of certain minimal levels of safety and security. It forbids the State itself to deprive individuals from life, liberty or property without due process of law, but its language cannot fairly be extended to impose an affirmative obligation on the State to insure that those interests do not come to harm through other means.58 Compared with those past decisions, the enthusiastic liberal-egalitarian endorsement of the idea that individuals should be offered genetic upgrading when, for reasons identified as genetic, they have less-than-optimal opportunities to participate in the dominant cooperative framework, seems to lack normative coherence, yet it corroborates the paradoxical idea that the institutional, social and economic structure of society is increasingly assumed to have a fixed nature, while the cultural, social and genetic characteristics of individuals have become unusually plastic. Things happen as if human nature, having lost both its organic anchor and its normative power, would not stand in the way of adapting individuals to the requirements of increasingly rigid institutional, economic and social structures. The ‘naturalisation’ of present institutional, economic and social structures, reinforces the determinist view that one can expect nothing but what is. From the point of view of efficiency, it means that whatever occurs to the institutional, economic and social structure is efficient, just because it occurs.59 Edmund Burke, in his Reflections on the Revolution in France, published in 1790, had already warned against that kind of reasoning: These metaphysic rights entering into common life, like rays of light which pierce into a dense medium, are, by the laws of nature, refracted from their straight line. Indeed, the gross and complicated mass of human passions and concerns, the primitive rights of men, undergo such a

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variety of refractions and reflections that it becomes absurd to talk of them as if they continued in the simplicity of their original direction. The nature of man is intricate; the objects of society are of the greatest possible complexity; and therefore no simple disposition or direction of power can be suitable either to man’s nature, or to the quality of his affairs. (Burke, 1987 [1790]: 61–2) The ‘price’ for the ‘naturalisation’ of structures is the requirement that individuals sometimes exhibit radical plasticity. In the forcasted post-genomic era, they need to be flexible even in their genes. The question is not merely of intellectual interest but has important practical consequences. To the extent that the structures of a society and their potential evolution are considered to be natural, the government is under no duty to correct the structural inequalities of means or power amongst the members of society. Redistribution of ‘genetic talents’ – if ever possible, theoretically or practically – would, to a very relative extent, reduce the tension between the market and human rights, but the danger lies in forgetting that the aim of human rights is not economic efficiency, but rather the critique of that objective when it hinders visibility and the contestation of disciplinary devices that are used in the current fabric of our political economy to control individual self-perception. When human rights are apprehended from the exclusive perspective of their opposition to the market, and when critique of market mechanisms and of the algorithms used to classify people according to criteria such as merit, need, utility, and so on is silenced by demands of inclusion and participation to the market, that reductionist conception of human rights becomes instrumental to the market, since it advocates the reduction of margins, the inclusion of all potentially productive forces into the market project. With the success of the liberal eugenic thesis and accompanying shifts in definitions of what constitutes the normal, the healthy, the natural, the exhausted source of self-legitimising natural law has been replaced by the self-legitimising settings of the present. The result is strikingly similar to what libertarians have been reproached for: the conservation of the present structure of society. But unlike libertarian conservatism, which continuously conserved disparities of power and wealth from one generation to the next, the ‘dream’ of liberal eugenism prevents, or rather suppresses, domination and power disparities by creating new subjectivities that have never been dominated, and do not aspire to any liberation, but are rather shaped from the outset according to the teleology of artificiality, a teleology of the present that makes any alternative political framework unthinkable. In a ‘post-genetic redistribution era’, otherness in oneself would be eradicated, as would the distance between law and justice. The increase in scholarly interest in ‘liberal eugenism’, the current

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fascination with the ethical, legal, cultural and philosophical assessment of the spectacular yet virtual possibilities of genetically engineering humans ahead of their occurrence, and the increasing sophistication in the models of ‘genetic justice’ proposed in advance, may well be symptomatic of the paradoxes of a social structure that, while worsening remediable inequalities in the present, dreams that, in the future, genetic engineering and the genetic enhancement of individuals will dispense with redistributive schemes and realise an equalitarian society without requiring the wealthiest and most powerful to share their assets.

Notes 1 Official record of the Constitution of the World Health Organization (July 1946) no 2: 100, preamble. 2 In the context of abortion, the Supreme Court, in Roe v Wade, 410 US 113 (1973), decided – among other things – that even after viability, the state must allow abortions necessary to protect a woman’s life or health. In Doe v Bolton, 410 US 179 (1973), decided the same day, on 22 January, 1973, the court defined health to include ‘all factors – physical, emotional, psychological, familial and the woman’s age – relevant to the well-being of the patient’. But though abortion was allowed for all those reasons, funding of abortion was severely restricted and excluded emotional, psychological familial and age reasons . . . 3 Sometimes, as in the WHO definition, the notion of health is employed, particularly in its broader interpretations, as a notion roughly equivalent to the concept of quality of life (Brock, 1993: 95). 4 Unlike previous positive and negative eugenic policies, the ‘eugenics of normalcy’ the report describes would consist in ensuring ‘not merely that a person lacks severe incapacitating genetic conditions, but that each individual has at least a modicum of normal genes. One commentator has argued that individuals have a paramount right to be born with a normal, adequate hereditary endowment. This argument is based on the idea that there can be some consensus about the nature of a normal genetic endowment for different groups of human species’ (Office of Technology Assessment (US), 1988). 5 See Atlan (1993–4): ‘le génome humain n’existe pas si l’on envisage un génome unique qui serait commun à tous les individus de l’espèce. Au contraire, chaque individu a un génome qui lui est propre et qui n’est identique à aucun autre, sauf cas de vrais jumeaux . . . Donc il ne peut s’agir au départ chez l’homme que de séquencer un génome d’un individu, ou de quelques-uns, ou encore une association de chromosomes dont chacun proviendrait d’un individu différent . . . Ceci est en général mal compris par les non-spécialistes, pour qui le génome est à la fois le lieu mystérieux où se trouverait le secret de la vie, conservé comme un patrimoine commun à l’espèce humaine, et le lieu non moins mystérieux où seraient déterminées toutes les propriétés singulières d’un individu, présentes et à venir, à la façon d’un destin.’ 6 The sustaining rhetoric of the North American Committee of the Human Genome Diversity Project is that ‘[A]t a time when we are increasingly concerned with preserving information about the diversity of the many species with which we share the Earth, surely we cannot ignore the diversity of our own species’. See http://www.stanford.edu/group/morrinst/hgdp/faq.html. 7 Here, as in Auguste Comte’s positivist biological conception of the normal and

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the pathological, the ‘abnormal’ does not have its own norms but constitutes a measurable ‘outside’ of the norm. See Canguilhem (1966: 18–31). The ‘standards’ provided by the ‘type’, however, are not of practical use for a medical doctor: ‘si la vérité est dans le type, la réalité se trouve toujours en dehors de ce type et elle en diffère constamment. Or, pour le médecin, c’est là une chose très importante. C’est à l’individu qu’il a toujours affaire. Il n’est point le médecin du type humain, de l’espèce humaine’ (Claude Bernard, Principes de la Médecine expérimentale, PUF, p 142, cited in Canguilhem, 1965: 157). See L J Davis, Enforcing Normalcy: Disability, Deafness and the Body, New York: Verso, 1995: 29 cited by Taylor and Mykitiuk, 2001. Henri Atlan criticised the qualification of the human genome as heritage of humanity, arguing that although the notion of ‘genetic heritage of humanity’ suggests a legacy, transmitted across generations, that has to be managed, preserved, or, better, made fructify, since the genome is constantly recombining and mutating (Atlan, 1993–4). Habermas famously argued in The Future of Human Nature that being born ‘genetically designed’ by one’s parents or someone else undermines the possibility for the child to develop a sense of self as equal to others, and, more generally, that current trends in human biotechnology jeopardise the self-understanding of the species. Bragdon v Abbott 524 US 624 (1998). See also Shildrick (2004) and Dreyfuss and Nelkin, 1992: (319–20). ‘Although there is a biological reality to disease, biological processes take on particular forms in different human groups and in different periods of time. Disorders and disabilities are not merely physiological or physical conditions with fixed contours. Rather, they are social products with variable shapes and distributions. Defining and studying these categories and the people assigned to them is necessarily subjective, reflecting how those with power at any particular historical time construct them as problems’ (Lippman, 1991: 17). See Kitcher (1996: 208–9). For a feminist, post-structuralist framing of the issue, see Scully (2005). See the recent definition of handicap by the French Law 2005-102 of 11 February 2005 ‘pour l’égalité des droits et des chances, la participation et la citoyenneté des personnes handicapées’, Article 2, 1˚: ‘. . . Constitue un handicap, au sens de la présente loi, toute limitation d’activité ou restriction de participation à la vie en société subie dans son environnement par une personne en raison d’une altération substantielle, durable ou définitive d’une ou plusieurs fonctions physiques, sensorielles, mentales, cognitives ou psychiques, d’un polyhandicap ou d’un trouble de santé invalidant.’ For a regularly updated list of diseases for which genetic tests are available, see the NIH funded database at http://www.genetests.org. Bill Hill made the relevant suggestion that ‘The tools the human species make in turn make them. So the notion of the “natural selection” process touted by Darwin and his followers seems to be increasingly transforming itself into an artificial process driven by a social collective which seeks survival through technology’ (Hill, 2000). See Derrida (1974). The essence of the Hippocratic oath is a commitment not to change human nature but to restore normal organic functioning when such functioning is disturbed and could not spontaneously return to a normal running. That ideal of ‘restoring normal organic functioning’ is still inspiring most international policy statements and conventions in the new field of genetics and biomedicine, despite the fact that the reference to the natural rather than the social seems increasingly arbitrary.

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21 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 Oviedo, 4.IV. 1997. 22 Callahan, 1991: ‘the very notion of need has been rendered systematically opaque and ambiguous’, and has ‘increasingly been drained of substantive meaning’. 23 See Mehlman and Botkin (1998: 90). 24 See Canguilhem (1966: 178). 25 See Hoedemakers and ten Have (1999): ‘In everyday usage, the normal represents usualness: that which is familiar, habitual, common, found frequently, or in accordance with what can be expected. What is normal is usually founded in collective beliefs: it is largely determined by the social environment in which an individual lives and is based on shared or common language, shared perceptions, experience and tradition. The abnormal represents that which is considered different from what is usual, common, habitual, unfamiliar or unexpected.’ 26 See Mori (2000): ‘the traditional paradigm of medicine assumes that health is a natural given depending on a body’s intrinsic teleology, and that medicine aims at restoring or preserving health, making a physician only an assistant to nature . . . nowadays, this paradigm is becoming obsolete, because the concept of health is no longer a natural given’ and interventions on the human body attempt not only to help nature’s teleology, but also to change it whenever doing so can satisfy human needs and wants. We should abandon the term medicine and adopt the term healthcare to mark such an epoch-making transition, analogous to that making the passage from alchemy to chemistry.’ 27 In this excerpt, J S Mill refutes any usefulness to the concept of nature for guiding human actions. The source or guide of morality cannot be found in nature: the high standard of justice and goodness should guide human actions, not nature. Those standards Mill had in mind were probably those of the time being, those on which present, living people agree. Mill conceived self-government on the model of speech, that is, as government by the present will of the governed. See Rubenfeld (2001: 48). 28 Highly relevant critical comments on the use of statistics and probabilities in medicine and biology, and particularly in studies on the genetics of ADHD and on IQ heritability, may be found in Chapter VIII, ‘Statistiques et probabilités’ in Atlan (2003: é277–92). See also Degrandpre (1999), Lewontin (1974), Brock and Dworkin (1974) and Block (1995). Notwithstanding those critiques, confusions between correlation and causation are impressively frequent in genetic research. Statistical correlations are mainly used to comfort specific beliefs that in turn serve philosophical, medical and commercial interests (Munafo and Flint, 2003): ‘. . . reports of highly significant associations between candidate genes and personality traits, published in journals with high impact factors, have not been followed by convincing replications. . . . there are a number of possible reasons for the failure to find convincing evidence for genetic associations with personality. First, genetic effects on complex traits are probably modest, with at most a doubling or halving of liability (i.e. an odds ratio between 0.5 and 2) to exhibiting a measured trait because of possession of any particular single-locus genotype, so that many individual studies so far carried out have been underpowered. Second, there could be variation in allele frequency of candidate genes among the populations studied. Replication is known to be problematic for genetic linkage studies under conditions of genetic heterogeneity; similar difficulties confront association studies. Third, sampling biases could be responsible for differing outcomes: for example, associations may only be found in extreme samples, or there may be publication bias as significant results are published either preferentially or earlier than negative results.’

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29 See for example Cloninger et al (1996). 30 See Kendler (1992: 257) and Marshall (1994). A joint study by UK, United States and New Zealand scientists claims an association between how people cope with stressful experiences such as divorce, unemployment, etc. and variations in a single gene, 5-HTT (the gene for serotonin transporter). The gene comes in two versions, short and long. Everyone has two copies of the gene. The researchers looked at a group of 847 people born between April 1972 and March 1973 in Dunedin, New Zealand. The group has been followed since birth. Researchers were able to look at which version of the gene they had, and what stressful events they had experienced. They focused on those who had suffered several stressful experiences in the five years between the ages of 21 and 26. It was found that those 265 people who had two short versions of the gene were more likely to become depressed – 43 per cent of them had developed depression after stressful life events. In contrast, only 17 per cent of the 147 who had two long copies of the gene were affected by depression. See Science, vol 301, p 386, 2003; http:// www.newscientist.com/article.ns?id=dn3956. 31 The method is statistical. Alzheimer’s disease, for example, is now known to be associated with the presence of a genetic mutation on the gene coding for the apolipoprotein E.(APOE4). See Lendon et al (1997). 32 See Bartlett et al (2005) and Bailey, (1995: 63). IntegraGen, a French biotech company, intends to launch the first genetic test for autism in 2006. 33 See Thapar et al (1995: 537) and Thapar (1999: 105). 34 See Karp (1994: 304) and Holden (1998: 1348). United States researchers recently announced they have identified a gene linked to alcoholism and depression, the first to be associated with both conditions. Scientists at the Washington University School of Medicine think that variations in a gene called CHRM2 either increase or decrease the likelihood that a person will be affected by one or both of the disorders: ‘Clinicians have observed a connection between these two disorders for years, so we are excited to have found what could be a molecular underpinning for that association,’ said team leader Alison Goate. The research, reported in September 2004 in the journal Human Molecular Genetics, is part of the ongoing United States Collaborative Study on the Genetics of Alcoholism (COGA). This project involves the collection of interview responses and DNA samples from over 10,000 people with alcohol dependence and their families. In the latest study, the Washington University team looked at DNA from 2,310 people from 262 families in which at least three members were affected by alcoholism. They then looked at the COGA participants affected by depression, and found that both these approaches pinpointed the same region of chromosome seven. The region contained the already-known CHRM2 gene, which is involved in key brain functions such as attention and memory. 35 See Mednick et al (1984), Goodman (1995: 276) and Greenspan, (2001). In 1995, the Supreme Court of Georgia rejected a plea by the accused to offer evidence based on ‘very recently published articles and scientific studies that suggested a possible genetic basis for violent and impulsive behaviour in certain individuals’. See Mobley v State, 265 Ga. 292; 455 SE 2d 61 (1995) cited by Laurie, 2002: 97. 36 See Bailey (1993) and Hamer et al (1993: 321). See also Le Vay (1991), and Bailey and Pillard (1991). 37 ‘In humans, in contrast to animals, the genetic influences on infidelity are unclear. We report here a large study of over 1,600 unselected United Kingdom female twin pairs who confidentially reported previous episodes of infidelity and total lifetime number of sexual partners, as well as attitudes towards infidelity. Our findings demonstrate that infidelity and number of sexual partners are both under

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moderate genetic influence (41 per cent and 38 per cent heritable, respectively) and the genetic correlation between these two traits is strong (47 per cent). Conversely, attitudes towards infidelity are driven by shared and unique environmental, but not genetic, influences. A genome-wide linkage scan identified three suggestive but non-significant linkage areas associated with infidelity and number of sexual partners on chromosomes 3, 7 and 20 with a maximum LOD score of 2.46. We were unsuccessful in associating infidelity or number of sexual partners with a locus implicated in other mammals’ sexual behavior, the vasopressin receptor gene. Nonetheless, our findings on the heritability of sexual infidelity and number of sexual partners provide support for certain evolutionary theories of human sexual behavior, as well as justifying further genetic and molecular research in this domain’ (Cherkas et al, 2004). See the Nuffield Council on Bioethics’s report on ‘Genetics and human behaviour: the ethical context’, launched on 2 October 2002, focusing on behavioural and personality traits such as intelligence, sexual orientation and antisocial behaviour, rather than diseases or disorders (Nuffield Council on Bioethics, 2002). ‘Il existe une forme d’adaptation qui est specialisation pour une tâche donnée dans un milieu stable, mais qui est menacée par tout accident modifiant ce milieu. Et il existe une autre forme d’adaptation qui est indépendance à légard des contraintes d’un milieu stable et par consequent pouvoir de surmonter les difficultés de vivre resultant d’une alteration du milieu. Or, nous avions défini la normalité d’une espèce par une certaine tendance à la variété, sorte d’assurtance contre la specialisation excessive, sans réversibilité et sans souplesse qu’est une adaptation réussie. En matière d’adaptation le parfait ou le fini est le commencement de la fin des espèces’ (Canguilhem, 1966: 197). Arendt (1983): 178. See Buin (2003): ‘La normopathie est la forme nouvelle de la désubjectivation: naturalisée, normalisée, finalisée afin d’accepter comme “naturels” les processus sociaux. Son langage, sa pensée, son comportement normés en vue de performance et d’efficacité, ont perdu tout pouvoir de contestation. Il a vertu d’acceptation et de docilité. Sa vie se résume à un programme, intégré à celui d’une immense machinerie acéphale.’ ‘Ce développement est vécu comme une dialectique temporelle qui décisivement projette en histoire la formation de l’individu: le stade du miroir est un drame dont la poussée interne se précipite de l’insuffisance à l’anticipation – et qui pour le sujet, pris au leurre de l’identification spatiale, machine les fantasmes qui se succèdent d’une image morcelée du corps à une forme que nous appellerons orthopédique de sa totalité, – et à l’armure enfin assumée d’une identité aliénante, qui va marquer de sa structure rigide tout son développement mental. Ainsi la rupture du cercle de l’Innenwelt à l’Umwelt engendre-t-elle la quadrature inépuisable des récolements du moi’ (Lacan, 1949). My translation from G Le Blanc (2004): ‘Sans cette course vers la normalité qui trouve ses origines dans une violence première qui est l’effet de l’attachement nécessaire de l’enfant à la loi parentale, synonyme d’attachement à des règles sociales, je ne suis jamais assuré d’en faire assez. Qui me dit que je suis suffisemment dans la norme? Ne faut-il pas le montrer davantage? La course vers la normalité est une course sans fin. Toute vie est une vie injustifiée qui cherche à se justifier au regard même des normes. La justification est un procédé qui excède l’idée de justice qu’elle contient’. . . . ‘C’est pourquoi toute proposition qui prétend que le juste précède le bien est nécessairement, partiellement insuffisante. Lui manque la prise en compte de cette condition primordiale, antérieure à la justice, qui est que ‘la normalité n’a de sens que subjectif. Elle désigne la cohésion

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minimale d’une existence, ce qui lui assure une certaine possibilité de perséverance, et ceci en dépit des souffrances qui sont les siennes.’ See, for example, Stock (2002), Ackerman (1981), especially the chapter on ‘birthrights’, and Mehlman (1998), Buchanan et al (2001), Lindsay (2005), Farrelly (2004, 2005), Dworkin (2002), Mehlman (2003), Habermas (2002) and Fukuyama (2003). Arthur Caplan, in the same vein, argued that we exercise, take vitamins, and eat well not to enhance ourselves beyond health, but to be healthy. So enhancement is a part of health. At the same time, for anyone with a congenital defect, being genetically adjusted to an average level of functioning is plainly an enhancement – and, as such, is not different in kind from going all the way up to the maximum, healthiest level (Caplan, 1998). See Lewens (2002). See Lemke (2002 and 2005). See Sunstein (1993: 68–81;90–91) criticising the ‘status quo neutrality and the State action doctrine in constitutional law’. See also Chemerinsky (1985), Marshall (1985) and Seidman and Tushnet (1995). Roe v Wade, 410 US 113 (1973). Doe v Bolton, 410 US 179, 188 (1973). According to a recent survey, 32 States and the District of Columbia follow the federal standard and provide abortions in cases of life endangerment, rape and incest. Four of these States also provide state funds for abortions in cases of fetal abnormality. Three of these States also provide state funds for abortions that are necessary to prevent grave, long-lasting damage to the woman’s physical health. One State provides abortions only in cases of life endangerment, in apparent violation of the federal standard. Seventeen States use state funds to provide all or most medically necessary abortions. Four of these States provide such funds voluntarily. Thirteen of these States do so pursuant to a court order. See Guttmacher Institute (2006). Mahler v Roe, 432 US 464 (1977). Beal v Doe, 432 US 438 (1977). Poelker v Doe, 432 US 519 (1977). Harris v McRae, 448 US 297 (1980). The right to individual autonomy, often termed as privacy in the United States, has essentially remained a negative right in the American caselaw. DeShaney v Winnebago Country Dept of Social Services, 489 US 189, (1989). Judge Rehinquist, 489 US at 195. For a critique, see Tribe (1985, 1989). Francis Fukuyama provides a caricatural example of this kind of position when he tries to explain the failure of socialist revolutions by the end of the century and their replacement by liberal democracy on the grounds that ‘[O]ne important reason for this worldwide convergence on liberal democracy had to do with the tenacity of human nature. For while human behavior is plastic and variable, it is not infinitely so; at a certain point deeply rooted natural instincts and patterns of behavior reassert themselves to undermine the social engineer’s best-led plans . . . Political institutions cannot abolish either nature or nurture altogether and succeed. The history of the twentieth century was defined by two opposite horrors, the Nazi regime, which said biology was everything, and communism, which maintained that it counted for next to nothing. Liberal democracy has emerged as the only viable and legitimate political system for modern societies because it avoids either extreme . . .’ (Fukuyama, 2003: 14).

Chapter 5

Beyond genetic universality and authenticity: the lure of the ‘genetic underclass’

The belief in reality is essentially the conviction that an entity transcends immediate sense data; or, to put the same point more plainly, it is the conviction that what is real but hidden has more content than what is given and obvious. (Gaston Bachelard (1984), The New Scientific Spirit, Beacon Press, pp 31–2)

A. The genomic narratives of universality A widely shared conception is that, unlike other risks, the distribution of ‘genetic risks’ among humans does not follow the lines of other social and economical classifications.1 This idea is probably one of the reasons why obvious questions of prioritisation are rarely raised at the political level, and why large public support has been unconditionally granted to the Human Genome Project and other subsequent human genetic and genomic research projects, despite the lack of guarantee that the fruits of that hi-tech research will be universally available to all humankind. The rhetoric of universality of the human genome is also used by those who wish to establish normative bases for a principle of ‘genetic solidarity’ advocated by the British Human Genetics Commission in its May 2002 report entitled ‘Inside information: balancing interests in the use of personal genetic data’. According to the report’s authors, Genetic knowledge may bring people into a special moral relationship with one another. We have therefore proposed the following concept of genetic solidarity and altruism, which promotes the common good: we all share the same basic human genome, although there are individual variations which distinguish us from other people. Most of our genetic characteristics will be present in others. This sharing of our genetic constitution not only gives rise to opportunities to help others but it also highlights our common interest in the fruits of medically-based genetic research.

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Jennifer Kulynych and David Korn, relying on the same definition of the principle of genetic solidarity, argue that: . . . every patient has a direct and personal stake in preserving researchers’ ready access to medical information accumulated in archived medical records and tissue samples. One might assert that individual patients, every one of whom stands to benefit directly from the fruits of research conducted with medical information, bear an ethical responsibility to contribute to the ongoing research endeavour by contributing to the record of their experiences to this vast population database. (Kulynych and Korn, 2002) The reasoning regarding ‘genetic solidarity’ parallels the rise, in the context of organ donation, of the notion that relinquishing our organs after death has in fact become obligatory for most people, and that failure to donate our organs after death is somehow morally wrong (Micah Hester, 2006). Yet, absent of further guarantees that the benefits accruing from research will be universally available, one may doubt the existence of any legal or simply moral duty to contribute to genetic research by consenting to having one’s biological sample and medical information collected in a biobank. While the idea that individuals have a duty of ‘genetic solidarity’ to contribute their personal samples and information to advance genetic research is becoming increasingly common, the question of who should pay for the genetic services that might become available as a result of that research remains curiously unaddressed. Although new human genetics and genetic technologies and services developed in the wake of significant public and private funding are presented to the public and to taxpayers as public goods with universal promises of health and welfare enhancement, the question of how those public goods will actually be allocated in a context characterised by evidence-based medicine, restructuration, public health cost containment, and the privileging of individual and consumer choices, is hardly ever discussed (Mykitiuk, 2002). Despite the (generously funded) emergence of ‘public health genomics’, a new discipline defined as ‘the responsible and effective integration of genome-based knowledge and technologies into public policy and into health services for the benefit of population health’2 (Brand:2007), the basic question of who will pay for the integration of genetic tests into routine health services is not even raised. The rhetoric of universality through which the Human Genome Project has been advertised can also be criticised on the basis that decisions about research agenda, which determine which tests and therapies will be developed, are often framed according to the market rationality of cost–benefit calculations and do not necessarily reflect concerns for those most in need of preventive, diagnostic and therapeutic devices.3 In turn, decisions about research agendas in human genetics thus make the burden of genetic risk unevenly burdensome for different groups of people.

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That fact blurs the classical distinction between pure and applied science.4 Decisions about the allocation of research funds to specific researches impact upon social perceptions of who is and who is not disabled. Power over applications of genetic research is power to define who will be considered at genetic risk in the future.5 Disparities in the availability of future treatments will probably transform our perceptions of what genetic diseases constitute severe or benign diseases, as the development of mitigating measures might allow those whom they will benefit to better participate in socio-economic life.6 Some evolution in that direction may already be visible in the United States: Katz Rothman reported that associations of parents of children with certain genetic diseases have evolved since prenatal and pre-implantation genetic testing for specific diseases have become available to the middle and upper classes: the number of middle class and upper class parents has decreased and, with it, the private support for those patients and families of patients with the genetic diseases targeted by the prenatal and pre-implantation tests.7 Whereas the popularity and political success of policies specifically prohibiting genetic discrimination in insurance and employment are based on the notion that ‘we all have genetic flaws’, current policies often fail to acknowledge that both the meanings and impacts of those flaws on people’s opportunities is contingent not only upon their having a particular ‘flaw’ but on the existence of biotechnological detection and remedial devices, which will not be universally available.

B. The Platonician opposition between invisible genomic authenticity and deceiving appearances In addition to the issues of availability and access to new genetic services, the production of genetic knowledge itself challenges the rhetoric of universality. The encounter of ‘race’ and genetics, described in detail in later sections, is particularly illustrative in this regard. A common assumption is that the possibility of seeing interpersonal differences at the genetic level is a victory of rational thought over deceptive sensorial perception. Advances in human genetics, it seems, shift scrutiny from the superficial layer of physiognomy, anatomy, physiological appearance, and expressed behaviours to the ‘invisible’ internal, molecular milieu. The privilege that would, since the inception of the Human Genome Project, be granted to genetic explanations over non-genetic causes of inter-individual differences and identities is indeed represented as a victory of cognitive rationality and judgment over sensorial perception and superficial appearances. Information extracted from the genome is believed to be more reliable than any of the perceptual substitutes that are currently used to evaluate a person’s identity8 and, to a certain extent, her prospects in life. Whereas evaluations based on frequently misleading perceptions are vulnerable to prejudices, genetic insights are regarded as truly

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objective and telling of who the person really is, independent of her skin colour, gender, beliefs, physical appearance, age and occupation. Focusing on this issue of ‘race’ and genetics will provide an opportunity to question the contemporary critical concept of geneticisation, widely used in social science to reflect the persisting influence of genetic reductionist views and their adverse ethical, legal and social consequences. Geneticisation has been defined as ‘the ever growing tendency to distinguish people one from another on the basis of genetics; to define most disorders, behaviours, and physiological variations as wholly or in part genetic in origin’ (Feminist Health Care Ethics Research Network, 1998: 64). Using the concept of geneticisation as a justification for exceptionalist genetic policies may be misleading, however, as it falsely suggests that the new identities emerging from genetics are exclusively and directly related to genes, and not to those other well-entrenched elements of classifications such as a pretended race, sexual orientation, gender, socio-economic status, etc. The molecular gaze tends to eclipse the recurrence and repetition of classical themes of exclusion (Braidotti and O’Grady, 1996). There is, to a certain extent, a revival of the Platonician notion that whereas classifications on the basis of appearances available ‘spontaneously’ (such as differences in the phenotypic characteristics of individuals that are traditionally used to divide people into racial categories, for example) are misleading, erroneous and often invidious, a contrario, ‘invisible’ truths contained in the genome – because they somehow depart from perceptible anatomical differences – provide reliable ‘truths’.9 The genotype, it is assumed, is the locus of authenticity and ‘inner’ truth, uncontaminated by political, social and economic circumstances. Genetic information is represented as particularly powerful and reliable: no other information about a person displays such a level of unalterability and stability, as genetic information, present in each cell of the organism, remains mostly unchanged over the whole life of the person, regardless of his clinical state (Harper, 1992). Genotypes are perceived as ‘inherent’ and ‘permanent’. Unlike infectious and other diseases, genetic diseases seem to be there at birth, virtually inscribed in the genes. That ‘inherent’ character has inspired Jean-Christophe Galloux with the consideration that ‘genetic material sketches the mask through which law and society recognise the person; a mask not made of familiar traits, influenced by the passing of time and sentiments, but an immutable mask, an internal blueprint, confirmed and unalterable’.10 As a consequence, it is assumed that because genetic tests allow genotypic characteristics to gain prominence over ‘visible’ phenotypic characteristics, ‘genetic discrimination’ is a kind of discrimination that may be unjust from the point of view of justice, as genetic shortcomings are in no way morally deserved by those who carry them. Yet, genetic discrimination, unlike, for example, discrimination grounded on race or gender, is not conceived as inspired by false assumptions or prejudices. Genes being represented as the ‘true’ locus of identity and authenticity, unaffected by social

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dominations and hierarchies, the assumptions they inspire regarding individual abilities, talents and prospects are a priori received as objective and impartial. In other words, the current aversion to genetic discrimination and the ensuing genetic privacy and genetic non-discrimination policies leave ‘geneticised’ representations unaltered or even reinforced. The post-colonial sociologist Paul Gilroy had hoped that observation of interpersonal differences at the deep molecular level would defuse the superficial concept of race for ever: Where screens rather than lenses and mirrors mediate the pursuit of bodily truths, ‘race’ might best be approached as an after-image – a lingering symptom of looking too intensely or too casually into the damaging glare emanating from colonial conflicts at home and abroad. (Gilroy, 1998: 845) Yet, one should acknowledge that even though the visual episteme has taken a prevailing importance in recent years, it does not account for the whole story, as far as the idea and conceptualisation of race are concerned. The notion of invisible membership in a ‘racial’ category has long been part of the history of the United States. The ‘one-blood-drop standard’ has long served to identify as ‘black’ any person with any trace of sub-Saharan ancestry (however small or invisible) unless the person could claim an alternative nonwhite ancestry, such as Native American, Asian, Arab, Australian aboriginal. The main objective of the one-blood-drop standard, gradually integrated in statutory form in the States since 1910,11 was to prevent interracial relationships and thus keep the ‘purity’ of the ‘white race’. Even before the statutory implementation of the one-drop standard, in Plessy v. Ferguson12 (upholding the ‘separate but equal’ policy in 1896, long before the birth of biotechnological technologies we now see flourishing), the Supreme Court supported the Louisiana State Supreme Court’s decision that the Louisiana ‘Separate Car Act’, which prohibited black and white people to travel in the same car on trains, was not unconstitutional. The case involved Homer Plessy, who, despite his ‘white’ appearence, had been identified as ‘Negro’ with his seven-eighths white and only one-eighth black ancestry.13 The re-framing of the question of ‘race’ in the context of genetics epitomises the complex tension between surface and depth, between visible phenomena and hidden truths, where the values of objectivity and impartiality are thought to pertain to the domain of the hidden and the deep. According to Paul Gilroy, [T]oday, we have been productively estranged from the anatomical scale defined at the end of the eighteenth century when natural history gave way initially to biology. We are more sceptical than ever about the status of the visible differences in relation to the unseen. On what scale is

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human sameness, human diversity now to be calibrated? Can a different sense of scale and scaling combine with a new sense of illumination to form a counterweight to the appeal of absolute particularity celebrated under the sign of ‘race’? Can a sense of the arbitrariness of scale help to answer the seduction of self and kind projected on to the surface of the body but stubbornly repudiated inside by the proliferation of invisible differences that produce catastrophic consequences where people are not what they seem to be? In the instability of scales that characterize our episteme, how is racialized and radicalising identity to be imagined when we know that it has already been imaged? Is there still a place for ‘race’ when human life and human differences are contemplated in a relentlessly sliding scale? (Gilroy, 1998) It will be shown in the next section that Gilroy’s suggestion that there might be no place for ‘race’ when human life and human differences are contemplated in a relentlessly sliding scale is unfortunately contradicted in practice, as discourses of genetics are used to sustain specific discourses about races.

C. The encounter of ‘race’ and genetics The critical notion of ‘epidermalization’ bequeathed to our time by Franz Fanon is valuable here . . . It refers to a historically specific system of making bodies meaningful by endowing them with qualities of ‘color’. It suggests a perceptual regime in which the racialized body is bounded and protected by its enclosing skin. The observer’s gaze does not penetrate that membrane but rests upon it and, in doing so, receives the truths of racial difference from the other body. . . . Dermo-politics succeeded biopolitics. Both preceded nano-politics. (P Gilroy (2004) Between Camps, Routledge: 46) Epidermalization signifies the implosion of bioscience and racism in strategic, often subtle forms. Epidermalization is the management of the boundaries that demarcate difference as biological (as ‘natural’ and ‘essential’), but also as ethnicity (that is, plugged into extensions of nation, place and culture). As its name indicates, epidermalization is a kind of membrane-management: a regulation of what is porous, what is flexible, what is permeable and what is identified as pathogenic. In this sense, epidermalization is the process by which biological materiality becomes a racialized and politicized materiality. (E Thacker (2004), ‘Genetic difference in the global genome’, Leonardo On-line.)

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‘Race’ is not a genetic category One major lesson of the Human Genome Project is that so-called race or ethnicity counts for very little in the genetic differences between people.14 Two persons identified as belonging to the same race or ethnic group may be genetically much more different from each other than two persons identified as belonging to different ethnic groups. Genetic variation within a single supposed race greatly exceeds any systematic variation between supposed races. It has been found that 85 per cent of all identified genetic variations occur between two individuals from the same ethnic group, whilst only 8 per cent of genetic differences are between ethnic groups. The HGP has demonstrated that only 0.012 per cent of the variation between humans can be attributed to differences in so-called race. These findings confirm that the notion of race has always been a discursive and ideological category, not a genetic one.15 Specific genetic diseases, however, are prevalent in certain populations. For example, Asian, Mediterranean and Middle Eastern populations are at varyingly increased risk of carrying the gene for thalassaemia, one-twelfth of African Americans are carriers of sickle-cell anaemia,16 one twenty-fifth of Caucasians of North European descent are carriers of cystic fibrosis, and Jews of Ashkenazi descent have a 1:30 probability of being carriers of the gene responsible for Tay-Sach disease.17 They are also more susceptible to suffering from Canavan’s disease, and of specific genetic predispositions to breast cancer. Contrary to what is increasingly assumed, the fact that certain genetic diseases are more frequent in particular ethnic groups than in the general population does not provide any scientific basis for the social and ideological notion of race. The prevalence of those specific diseases in certain groups does not have anything to do with the morphological traits that people often associate with racial classification (e.g. skin pigmentation, hair texture, skeletal morphology . . .), but is due to the environmental specificities in the geographical regions where these groups have their ancestry. It is well known, for example, that the genetic mutation that causes sickle-cell disease in persons having inherited both versions of the mutated gene also provides a survival advantage with regards to malaria in comparison with those who only have one copy of the gene mutated. In some regions worst affected by malaria, almost 40 per cent of the population carries one copy of the sicklecell mutated gene. The genetic trait is not related to a pretended race, but to the environmental specificity of the region of origin. Although physiological features may be characteristic of people with particular geographic origins, none or almost none of those physiological features are universal among the persons reported to belong to that population with that common geographic origin (Dupré, 1998). Traits that typify human species, if any, (e.g. language capacity, large brain, . . .) are shared among populations from all regions owing to

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recent common ancestry and shared selective pressure during human speciation. (Tishkoff and Kidd, 2004) While ancestry may indeed be genetically important in explaining why specific diseases are more frequent in specific populations, skin colour can be a seriously misleading criterion for measuring ancestry and a very imprecise proxy for disease risks. Several scholars have consequently argued against the use of racial or ethnic categories in genetic research (Lee, 2003, Ossorio and Duster, 2005, Kahn, 2003). In the clinical context, misrepresentations have led to delayed diagnosis when the patient is ascribed to a racial or ethnic group in which the genetic disease at stake has a comparatively lower frequency of occurrence, but is not altogether non-existent. African-American children with cystic fibrosis, a disease much more common in Caucasian populations (1:2,000) than in African populations (1:17,000), are generally diagnosed at a later stage than Caucasian children, though the consequences of late diagnosis may be extremely severe (Brito, 2002). The same errors may cause mistakes and delays in diagnosing sickle-cell anaemia in ‘white’ patients.18 Lewontin (Lewontin, 2005) outlined the situation as follows: A common claim . . . is that racial categories are of considerable medical use, especially in diagnostic testing, because some genetic disorders are very common in ancestral racial populations. . . . So, it is argued, racial information can be a useful diagnostic indicator . . . There is a confusion here between race and ancestry. Sickle-cell anaemia is in high frequency not only in West Africans but also in some ‘white’ Middle Eastern and Indian populations. . . . Moreover, a person with, say, one African great-grandparent, but who is identified by herself and others as ‘white’, has a one in eight chance of inheriting a sickle-cell mutation carried by his ancestor. There are, in addition, a number of other simply inherited haemoglobin abnormalities, the thalassemias, that are in high frequency in some places in the Mediterranean (Sardinia), Arabia and Southeast Asia. The highest frequency known for a thalassemia (80 per cent) is in Nepal, but it is rare in most of Asia. The categorisation of individuals simply as ‘white’ or ‘Afro-American’ or ‘Asian’ will result in a failure to test for such abnormal haemoglobins because these abnormalities do not characterize the identified ‘race’ of the patient. An important practical – and indeed political – problem for policies dealing with screening in ethnic groups is determining what identifies individuals’ ethnicities. A small population in the South of Ireland, for example, looking Irish and having Irish names, have been found to suffer from thalassaemia

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and other ‘Mediterranean’ genetic diseases, transmitted through their Mediterranean ancestry. Acknowledging the problems associated with the use of race for screening and diagnostic purposes, the Agency for Health Care Policy and Research (AHCPR) recommended, in 1993, the screening of all new borns for sicklecell disease, since the targeting of specific groups actually overlooks some affected infants.19 Genetic screening policies in ‘racialised’ communities A well-known illustration of how genetics is being superimposed upon existing stigma is the history of sickle-cell screening in the United States. In the 1970s, four black Army recruits died suddenly during basic training in Fort Bliss, Texas, at 4,060 feet above sea level. All were heterozygous for sickle-cell anaemia. The event caused a large controversy, containing conflicting messages which are generalisable to genetic diseases in minorities: on the one hand there was the indignation about neglect of this disease and public pressure to increase research and testing for sickle cell; and on the other, there were proposals to systematically screen black couples for the trait before marriage, to exclude (even healthy) carriers from specific occupations, and to increase insurance rates for the persons concerned, all raising the question of racial discriminations. Systematic screening, in conjunction with pre-existing prejudices against those identified as African-Americans, led to a wide range of discriminations against the targeted population (Duster, 2003, Nelkin, 2002). Sickle-cell anaemia was the targeted genetic condition in the few American states that have ever required genetic tests for school-aged children or adults. Programmes of mandatory sickle-cell carrier screening for AfricanAmericans organised by state legislatures in the early 1970s were presented as inspired by the focus on civil rights and individual reproductive rights to choose, which also led to the abandonment of many mandatory sterilisation statutes. The suggestion was that a carrier might wish to consider such information when making reproductive decisions, since, if the person with whom he/she decides to conceive a child carries the same genetic status, they would have a 25 per cent risk of giving birth to a child affected with sickle-cell anaemia. Mandatory screening was thus officially implemented for the sake of reproductive choice. Yet, because no means existed to detect sickle-cell trait or disease in utero (prenatal diagnosis was not yet feasible) nor for mitigating or curing sickle-cell disease after birth, the only possibility offered by mandatory screening to potential parents who were both carriers of the mutation was not to have children at all. Symptomatically, the African-American community was the only one for which such mandatory programmes were implemented – in contrast to voluntary screening programs for Tay-Sachs disease, a condition prevalent in the Jewish community. In 1972, the United States Congress passed the

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‘National Sickle Cell Anaemia Control Act’,20 as an amendment to the ‘Public Health Service Act’21, to finance and encourage states to screen all AfricanAmericans for the sickle-cell trait.22 As the National Sickle Cell Anaemia Control Act provided that only voluntary screening programmes could receive federal funding, states progressively abandoned their mandatory screening programmes. However, because genetic counselling was not provided before or after the 1972 Act, the programmes had psychologically disastrous consequences on those screened positive, who weren’t told that being a carrier of the gene implicated in sickle-cell anaemia does not reveal any personal increased risk of developing the disease. Furthermore, as social institutions did not know exactly how to use and interpret the test results, sicklecell carriers, although healthy and at no increased risk, were discriminated against and stigmatised in insurance and employment. According to Nickens (1996), the sickle-cell issue has provided two lessons: (1) that genetic disease can serve both as a rallying point for drawing attention to the needs of a group, and at the same time as a source of increased stigmatisation with imputation of innate defectiveness; (2) that during periods where knowledge about a genetic disease is incomplete, there is great opportunity for serious policy errors. The legitimacy of compulsory genetic screening policies in racialised communities, and of preventing couples where both partners are found to be carriers from conceiving children unless they undergo prenatal diagnosis, involves fundamental rights of individual privacy and autonomy. In Europe,23 those fundamental rights cannot be breached except where the intrusion is necessary in a democratic society to serve a compelling state interest in protecting, among other things, public health.24 In the United States, regulation limiting certain fundamental rights may be justified only by a ‘compelling state interest’ and must be narrowly tailored to serve that interest.25 Whether mandatory genetic screening meets these standards is doubtful: although a state could argue that its mandatory testing program reduces the rate of genetic disease transmission by preventing the birth of children affected by the diseases at stake, the argument would be weak in several respects: Preventing the birth of individuals is very different from preventing the transmission of a disease. In absence of reliable gene therapy, it is doubtful that the state can have a legitimate interest in preventing births. Several cases decided by the United States Supreme Court have consistently held that the State has a legitimate interest in protecting foetal life and that states may thus favour pregnancy over abortion by funding the former but not the latter. In Mahler v Roe (1977)26 and Harris v McRae (1980)27 the Court upheld the refusal of federal and state governments to pay for abortion services on the ground that states are permitted to favour pregnancy over abortion by choosing to fund one choice but not the other. In Rust v Sullivan (1991),28 the Court decided that federal or state-funded health programmes

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are allowed to prohibit participating healthcare providers from providing information relating to abortion decisions. In Planned Parenthood of South-eastern Pennsylvania v Casey (1992),29 the Supreme Court held that statutes imposing waiting periods and information about foetal development to women in order to incite them to choose pregnancy over abortion furthered the state’s interest in protecting foetal life and did not impose an undue burden on a woman’s right to choose whether to procreate. Yet another series of cases, involving sterilisation laws rather than the regulation of abortion, suggests that states may have a legitimate interest in preventing some people from procreating. In the wake of eugenic laws that had been passed in various American states,30 the US Supreme Court upheld a Virginian sterilisation law in Buck v Bell (1927).31 In the Opinion of the Court, delivered by Justice Holmes, one reads that: We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetence. It is better for the entire world if, instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. The kind of indirect power of life and death (indirect because the death of those who sap the strength of the State is not directly proposed) claimed here by Holmes for the sake of public welfare is a kind of ‘involuntary patriotism’ that resembles the indirect power of life and death described by Michel Foucault as a privilege of the sovereign power. The indirect power of life and death does not allow the sovereign to exercise an absolute and unconditional right of life and death over his subjects, as was the case in earlier versions of sovereign privilege. Be the Sovereign threatened in his existence, however, and he may then legitimately require his subjects, to take part in defending the State. Although the Sovereign may not directly plan his subject’s death, he may legitimately expose their life (Foucault, 1976a: p 177). Quite surprisingly, Buck has never been overruled. In a later sterilisation law case, Skinner v Oklahoma (1942),32 the United States Supreme Court held that an Oklahoma statute requiring the sterilisation of persons convicted of larceny, but not of persons convicted of embezzlement, violated the equal protection clause. Skinner constitutes the first judicial affirmation of reproductive rights. Yet, despite the acknowledgement by the Court that ‘this case touches a sensitive and important area of human rights’, the fundamental

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justification of recognising those rights was more their instrumental value for the ‘existence and perpetuation of the race’ than concern for individual autonomy. The Court affirmed that ‘Oklahoma deprives certain individuals of a right which is basic to the perpetuation of a race – the right to have offspring’. It went on to say: ‘We are dealing here with legislation which involves one of the basic rights of man. Marriage and procreation are fundamental to the very existence and survival of the race.’33 Skinner reversed the precedent of Buck not on the ground that forced sterilisation constituted in itself a violation of human rights, but merely on the ground that: strict scrutiny of the classification which a State makes in a sterilisation law is essential, lest unwittingly or otherwise invidious discriminations are made against groups or types of individuals in violation of the . . . equal protection of the laws . . . Sterilisation of those who have twice committed grand larceny with immunity for those who are embezzlers is a clear, pointed, unmistakable discrimination. . . . The decision in Skinner denounced the fact that an individual twice convicted of larceny could be sterilised under the law, but the Court’s decision was grounded on the doubts the Court held vis-à-vis the scientific validity of the Oklahoma statute’s eugenic content: We have not the slightest basis for inferring that that line [between larceny and embezzlement] has any significance in eugenics or that the inheritability of criminal traits follow the neat legal distinctions which the law has marked between those two offences. The court in Skinner in fact confirmed that a state has a legitimate right to limit reproduction where the inheritability of undesirable traits is scientifically proven, as the Court believed was the case in the context of mental illness. The Skinner court merely objected to the state of Oklahoma’s illegitimate pretension to limit reproduction in the context of crime because no certain information existed that could establish the inheritability of criminal behaviour. Buck v Bell has later been cited in most subsequent cases involving reproductive rights. In Roe v Wade (1973), one reads that: The privacy right involved, . . ., cannot be said to be absolute. In fact, it is not clear to us that the claim asserted by some amici that one has an unlimited right to do with one’s body as one pleases bears a close relationship to the right of privacy previously articulated in the Court’s decisions. The Court has refused to recognise an unlimited right of this kind in the past.34

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In a 2001 federal appeal case involving a claim of forced sterilisation, Vaughn v Ruoff,35 Buck was again cited extensively.36 It thus results from the United States Supreme Court’s decisions that whereas states may have a legitimate interest in protecting foetal life, which justifies privileging the choice of giving birth over the choice of abortion, they also seem to have a legitimate interest in preventing the birth of some individuals or procreation in some families. Yet it is highly improbable that states would rely on such a rationale to impose genetic screening upon specific communities. In any case, in order to be constitutionally acceptable, mandatory screening would have to comply with the proportionality standard. The condition of the coercive measures necessity for reaching a particular goal is not met in the case of compulsory genetic screening: voluntary education and testing might be as effective as mandatory testing. Moreover, the cost-effectiveness of systematic and compulsory genetic screening is not obviously apparent. Indeed, evaluating the long-term effects of genetic programs in public health is a complex task, as explained in the 2002 WHO Advisory Committee on Health Research’s report (World Health Organization, 2002: 112): Preventing parents who are carrying the same genetic defect from reproducing, and hence having affected children, will tend to interfere with the normal evolutionary mechanism for reducing the frequency of deleterious genes within a population. In offering similarly affected parents the possibility of prenatal diagnosis and termination of pregnancies of affected babies, and thus encouraging them to have children, more carriers will be produced. On the other hand, in the past, families who had children with severe genetic diseases often tended to increase their size as a compensatory mechanism; since the instigation of prenatal diagnosis for thalassaemia in Mediterranean populations, family sizes have fallen to more or less match the population norm. Of course, pre-implantation diagnosis, with exclusion of doubly affected or carrier embryos, would solve some of these problems. However, the solution suggested would require either the systematic implementation of in vitro fertilisation for fertile couples composed of two carriers of the deleterious gene, or, alternatively, pre-implantation or prenatal diagnosis to prevent the birth of perfectly healthy children who could later transmit the trait to their own offspring, an even more disproportionate solution. A relatively recent occurrence of involuntary genetic testing in ‘racialized’ groups gave rise to the famous case of Norman Bloodsaw v Lawrence Berkeley Laboratory (1998).37 The facts were the following: a laboratory managed jointly by the United States Department of Energy and the University of California had, between 1981 and 1995, carried out a programme of secret testing of some targeted groups of employees (namely blacks, Latinos and women) for evidence of sickle-cell trait, syphilis and pregnancy. Sickle-cell

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screening was carried out on all black American employees without their knowledge.38 Tests were performed on blood and urine samples collected during the compulsory pre-employment medical examination and in the context of subsequent optional medical examinations offered to all employees. The tests were abandoned in 1995 by the employer: from then on, all current and future black employees would have been tested for sickle cell at birth, as a consequence of the National Sickle Cell Anaemia Control Act (an amendment to the Public Health Service Act), passed by the Congress in 1972.39 This legislation provided for funding and encouraged states to screen all African-Americans for carriage of the sickle-cell trait. In January 1995, some employees discovered they had been tested without their consent and brought a case for their own sake and the sake of all present and past employees. They alleged that their blood and urine samples had been tested for syphilis; that, in addition, black employees’ samples had been tested for sickle-cell trait; and those of female employees had been tested for pregnancy, all without their knowledge and consent and without subsequent notification that the tests had been conducted. They argued this practice amounted to: a violation of the Americans with Disabilities Act,40 which makes it illegal for an employer to perform medical tests that are not job-related nor consistent with business necessity; a violation of their right to privacy as protected by the federal constitution and as protected by the Constitution of the State of California; and a violation of Title VII of the Civil Rights Act of 196441 as the claimants argued the singling out of black and female employees for additional non-consensual testing constitutes a discrimination under Title VII of the Civil Rights Act. The District Court for the Northern District of California dismissed these claims, on the basis that they were time-barred as the most recent examination occurred over two years before the filing of the complaint. The court determined that the limitations period began at the time the tests were taken, because the plaintiffs had at that time reasons to know of the practices they were complaining about. Regarding the alleged violation of the ADA, the Court maintained that: . . . because the medical questionnaires inquired into information such as venereal disease and reproductive status, plaintiffs were on notice at the time of their examinations that Lawrence was engaging in medical inquiries that were neither job-related nor consistent with business necessity. The district court thus held that all of the ADA claims were time-barred. With regard to the invasion of privacy claims, the court held they were also time-barred, for the same reason, and that they alternatively failed on their merits as the tests were performed as part of a general medical examination ‘that covered the same areas as the tests themselves’. In consequence, any ‘additional incremental intrusion’ from the tests was so minimal that no constitutional violation could have occurred despite defendants’ failure to

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identify ‘an undisputed legitimate governmental purpose’. Finally, concerning the Title VII claims, the Court considered them time-barred for the same reason. Additionally, it held them to be unsupported as the plaintiffs failed to show any connection between the reproached tests and their employment terms or conditions. However, the US 9th Circuit Court of Appeals reversed the District Court’s decision. On appeal, the Court decided that the District Court erred in considering that reasonable persons in the plaintiffs’ position would have had reason to know that the tests were being performed. Material and disputed issues of fact existed with respect to whether or not plaintiffs should have known that the tests were being performed. Thus the claims, according to the Circuit Court of Appeal, were not time-barred. With respect to the claims grounded on privacy, the court acknowledged, unlike the first judgment, that ‘[O]ne can think of few subject areas more personal and more likely to implicate privacy interests than that of one’s health or genetic makeup’. As for the claims grounded on Title VII, it was decided on appeal that, given Title VII’s prohibition of discrimination not only in the ‘terms’ and ‘conditions’ of ongoing employment but also in the ‘terms’ and ‘conditions’ under which individuals may obtain employment, the conditionality of employment of black and female individuals at Lawrence upon allegedly unconstitutional invasions of privacy to which white and/or male employees were not subjected constituted a violation of Title VII. However, the appeal decision confirmed the dismissal of the ADA claims. The court held that, whereas the ADA limits pre-employment examinations and ‘monitoring’ examinations to an individual’s ability to perform job-related functions, it does not impose restrictions on the scope of entrance examinations, that is, the examination conducted after an offer of employment has been made.42 It only guarantees the confidentiality of the information gathered and restricts the uses to which an employer may put this information. Lawrence discontinued non-consensual syphilis testing in April 1993 (acknowledging the limited usefulness of screening healthy populations). Since December 1994 they have continued to perform pregnancy testing, but only on an optional basis. The case ended with Lawrence Berkeley National Laboratory reaching a provisional $2.2 million settlement with the concerned group of employees, though the laboratory continues to deny any wrongdoing (Lehrman, 2000). The reconstruction of ‘races’ in genetics Despite the fact that no genetic basis has ever been found to justify the notion of race, race is today increasingly used as a proxy for identifying groups of people with uneven reactions to specific drugs or groups for which specific genetic screening tests are developed and patented. Two recent cases illustrate how ‘race’ is being reframed or reconstructed as a biological concept – not as

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the result of explicit racist ideology but rather as a result of profit-driven market incentives. The first case is the development, approval and marketing of the first ‘ethnic drug’, a drug to treat heart failure in black patients.43 The second case involves the introduction of specific racial references in a patent claim for the identification of a particular mutation in the BRCA2 gene for diagnosing a predisposition to breast cancer in Ashkenazi-Jewish women (Kienzlen, 2005). The development of ethnic drugs and ethnic genetic tests makes race a commercial category, despite the non-existence of any established standard for defining when people are black or Ashkenazi Jews. Although symptoms of heart failure and breast cancer do not vary according to the patient’s racialised group, in both cases, the conditions are defined, essentially for commercial reasons, as specific racial diseases, despite the fact noted by Marks (2005) that genetic differences among groups are graded and not dichotomous, and that all human groups, however constituted, are exposed to specific health risks: poor people, prostitutes, athletes, African Americans, etc. all have particular health risks, and race is not the cause of those risks, but masks the real causes. In the following two cases, race as biology is referred to mainly for the purpose of obtaining regulatory approval, developing marketing campaigns and establishing intellectual property rights (Sankar and Kahn, 2005, Kahn, 2003, Kahn, 2004, Lillquist and Sullivan, 2004, Ossorio and Duster, 2005, Lee et al, 2001, Lee, 2003). In both cases, the reframing of the population into races serves to create markets or uses for products that would not have passed the tests for commercialisation or patentability if presented as designed for the general population. The use of race in pharmacogenomics Although the announced goal of pharmacogenomics is to develop drugs tailored to patients’ personal genetic specificities, pharmacogenomic products will more probably first be developed to treat variations within predefined racialised groups, not individuals. The concept of race is indeed used in pharmacogenomic research as the independent variable or marker supposed to explain the absence or presence of biochemical agents involved in drug metabolism. Whereas ‘race-based’ protocols are perceived by some as justified by manifest racial disparities in treatment response rates and as a step in the right direction on the path to individualised pharmacotherapy (Bloche, 2004, Condit and Bates, 2005), others fear that racial profiling in medicine will lead to medical mistakes, stigmatisation, discrimination, and exacerbation rather than alleviation of health disparities.44 Ironically, although the Human Genome Project seemed to confirm the fallacy of a genetic basis for ‘race’, the use of ‘race’ in understanding human genetic variation has become a central focal point in the development of genomic research tools in medicine (Lee, 2003). To this end, private and public banks of DNA samples

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from racially identified populations are proliferating for the purpose of exploring the connection between race and genetics.45 The FDA recently approved the first drug ever intended for one racial group (Saul, 2005). The trials preceding the drug’s approval had included 1,050 patients recruited exclusively among ‘patients with moderate to severe heart failure who have identified themselves as being African American’. Patients were recruited with the help of the Association of Black Cardiologists, which received $200,000 US in exchange for their contribution to organising the research.46 An important practical problem of research targeting ‘racial’ populations consists in defining – or rather inventing – an operational definition of ‘race’. In discussing the results of a qualitative sociological study comparing the epidemiological and lay conceptions of the meaning of ‘race’, Shim (2005) suggested that although racial self-identification is the preferred method by which epidemiologists measure race, it is not necessarily a meaningful way to measure the impact of ‘race’ on people’s condition of life. Rather it is the racial or ethnic category that is placed upon them by others that more directly structures their everyday experiences and their material and social environment.47 Anyway, the official rhetoric of the new ethnic drug’s maker, NitroMed, of Lexington, Massachussetts, involved the declaration that ‘[D]eath rates from heart failure are more than twice as high in black patients than in white patients’, and presented the new drug as an opportunity to address ‘the disparity of outcomes for African-American heart failure patients’. Heart failure of the kind to be treated with the new drug (BiDil), is framed by the firm as ‘a pathophysiology found primarily in black patients that might involve nitric oxide (NO) insufficiency’.48 This is a very significant example of how distinctive diseases become more conceptualised by reference to marketed biotechnological solutions rather than by reference to symptoms. Because a specific drug is being marketed especially for African-Americans, heart failure, a pathology that causes identical symptoms in all types of populations, is redefined as a specific disease when it happens to a person identifying herself as black. Thus, in the emerging pharmacogenomics, race is presumed to correspond to a higher prevalence of lack of the needed enzymes for metabolising synthetic pharmacopeia. The use of race indicates a shift of focus from the limitations of the pharmacopeia at stake to the biological shortcomings described as associated with belonging to a racial group, deviating from the mythical standard of genomic normality (Lee et al, 2001). In this perspective, genetic normality seems to be increasingly defined by reference to the adequate response to marketed drugs. When seeking to identify the causes of a drug’s failure to prevent, mitigate or cure disease, the focus moves away from the molecules combined in the drug to concentrate on the faulty individual genomic deficiencies. Defining asymptomatic carriers of genetic mutations involved in diseases as having a disease makes standards of disease shift from set of functions to set of genes. A contrario, the identification of disease as a genetic abnormality or defect presupposes a model of genetic normalcy.

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Sandra Soo-Jin Lee and her colleagues (Lee et al, 2001) raised the argument that: [G]enetic and biological differences should be studied directly, not through the distorting lens of a previous era’s racial thinking. There may, however, be one exception in health disparities research. Studies of the health effects of racism per se may be one arena where using traditional political categories of race is justified. If, as NitroMed’s rhetoric seems to assume, genetic factors play a role in drug response, one may wonder why the firm did not try to identify those genetic factors themselves so that they can be considered directly, rather than considering race or ethnicity as a loose proxy for predicting drug response (Tate and Goldstein, 2004: 37). A response might be that the use of race, notwithstanding the weakness of its scientific justifications, presents, in the case of BiDil, significant ‘commercial’ advantages. BiDil, contrary to what its promoters claim, is not a ‘new’ drug: in fact it is merely a combination of two existing drugs – isosorbide dinitrate and hydralazine – for which the patent covering general use expired in 2007, whereas the recently granted patent protection for the use of BiDil in black patients will extend until 2020. The merging of the two existing drugs in a single pill was thus an expedient way to extend intellectual property protections beyond their original legal time span. Moreover, the redefinition of BiDil as an ‘ethnic’ drug was also a means of gaining regulatory approval. The same BiDil had been refused regulatory approval in 1986 because it was found to be insufficiently effective in treating congestive heart failure in two large, ethnically mixed clinical trials. One should note, however, that when a drug is approved by the FDA for use in only a specific segment of the population, it can be prescribed to anyone. The use of race in patent specification More recently, following a decision by the opposition division of the European Patent Office that a patent49 on breast and ovarian cancer susceptibility gene BRCA250 owned by the firm Myriad Genetics (Paradise, 2004) was to be maintained in amended form, Myriad limited its claims for the patent and changed the phrasing of the related documentation. The patent now relates to a gene probe that comprises one single mutation (185delAG) prevalent in the Ashkenazi-Jewish population. That specific mutation affects about 1 per cent of Ashkenazi Jews, as compared to just over 0.1 per cent of the general population. The patent claimed thus relates, according to the new phrasing, to a gene probe ‘for diagnosing a predisposition to breast cancer in AshkenaziJewish women in vitro’.51 As a result, women seeking testing would have to declare whether they are Ashkenazi Jews or not. A basic practical difficulty

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with targeting ‘Jewish women’ is the fact that Jewish identity, unlike genes, does not follow biological patterns of inheritance: according to Jewish tradition, religion is passed down through the mother, so that a child with a Jewish father and a non-Jewish mother will not be considered by others nor perceive himself as Jewish, despite the fact that he will inherit as many genetic traits from his father’s ancestry as from his mother’s. In any case, those who identify themselves as Jewish would be excluded from testing or charged exceedingly expensive prices for their sample to be tested in the Utah-based Myriad laboratory. In addition to the fact that a requirement to disclose one’s ethnicity as a precondition for being tested seems to contradict the right to privacy, it also introduces obvious discrimination in access to a potentially life-saving diagnostic and predictive procedure. In other words, granting the patent in the terms claimed by Myriad Genetics would result in women identifying themselves as Jewish facing genetic discrimination in access to breast cancer risk testing. The European Society of Human Genetics, strongly opposed to the selection of a particular racial group as a diagnostic target in a gene patent claim, called on the European Patent Office, due to re-hear the patent claim by Myriad Genetics on 29 June 2005, to revoke the patent on the basis of the following considerations: a) The introduction of genetically discriminating considerations in patent language is contrary to the ‘ordre public’ and morality, and, as such, excluded from patentability according to Article 53(a) of the European Patent Convention,52 which excludes the granting of European patents in respect of inventions the publication or exploitation of which would be contrary to ‘ordre public’ or morality, provided that the exploitation shall not be deemed to be so contrary merely because it is prohibited by law or regulation in some or all of the Contracting States. b) The definition of racial, ethnic or otherwise hereditarily determined groups is fraught with technical uncertainties and lack of precision, which, once introduced in patent language, will lead to a burgeoning of poorly determined terms. c) While the latter would further inflate the cost of intellectual property protection, ‘both aspects may well unfavourably affect the perception of the work of the patent authorities by European citizens and genetics community’53. On 29 June 2005, however, the European Patent Office decided to maintain the patent in its amended form, as it ‘relates to use of a particular nucleic acid carrying a mutation of the BRCA 2-gene which is associated with a predisposition to breast cancer for in vitro diagnosis of such a predisposition in Ashkenazi-Jewish women’.54

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D. The lure of the ‘genetic underclass’ Both the figuration of heart disease in blacks as a different disease than heart disease in other groups, on the assumption that there are specific genetic factors correlated with being black that cause the disease – ‘race’ being used as a proxy for presumed genetic specificities – and the differential treatment of Ashkenazi-Jewish women in breast cancer gene screening are examples of the ambiguous methods used to characterise genetic diseases and genetic abnormality. Whereas standards of health and normality seem to have moved at the level of the gene, that is, ‘beyond the skin’ and other visual markings, genetic inquiry is still oriented according to privileged perceptual and visual epistemes. ‘Race’ (rather than ancestry) is being used as proxy for differential reactions to drugs, and as a target for genetic tests tracking specific mutations. This illustrates how the production of genetic knowledge, or the explanatory form of genetics, despite presenting itself as a depth ontology (the belief is that biologists decipher the genetic code constituting a deep inner truth merely expressed on the surface of corporeality), rather results in fact from a complex interaction between depth and surface (Novas and Rose, 2000). That articulation is contingent on a varying combination of medical, commercial, scientific or ideological interests. As a consequence, the ‘new’ genetic knowledge, even expurgated from its ancient eugenic overtones, cannot be conceived as a purely apolitical, unhistorical emergence.55 Yet, in dominant representations, human genetics shifts the danger of exclusion and discrimination under the skin and behind visible patterns of classification to locate it more at the invisible level of the gene. Genetics, in that view, threatens to generate a radically new ‘genetic underclass’ of people discriminated against in insurance and employment on the ground of their genetic make-up, or unable to access the genetic engineering services that would allow them to fully participate in the dominant cooperative framework of the genetically technologised society. The notion that genetic discrimination in employment and insurance on the one hand, and unequal access to genetic services such as reprogenetics, genetic therapies and genetic enhancement on the other hand, will cause the emergence of a specific genetic underclass of people, unemployable and uninsurable because of their sub-optimal genotype, has motivated the drafting of symmetric genetic non-discrimination legislation (following the model of race and sex discrimination). The shortcomings of such a well-intentioned approach are numerous, as explained in greater detail in the second part of this volume. Kelly (2005) rightfully notes that: . . . focusing on mechanisms of genetic discrimination and inequalities of access to genetic treatment and enhancement technologies, the use of the underclass metaphor loses much of its analytic potential. Sociologically, theories of the underclass point to cumulative dynamics of social

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disadvantage, geo-spatial and social forms of segregation and exclusion, and above all marginality and structural barriers to participation in the mainstream. Moreover, warnings against the creation of a new ‘genetic underclass’ fail to acknowledge that inquiries ‘beyond the skin’ are still directed by privileged perceptual and visual episteme, as recent examples have shown. In societies pervaded by economic, social and racial stratifications, one may fear that genetics will first be used to justify existing inequalities in genetic terms, in order to absolve institutions from their responsibility (de Melo-Martin, 2003). Brian Barry, in the opening pages of his most recent book, commented that: Even in the richest country in the world, just north of the academic enclave in New York centered on Columbia University, lies Harlem, where it has been estimated that a black male born and brought up in some areas has less chance of reaching the age of 65 than a child born and brought up in rural Bangladesh. Some Americans (perhaps even a majority) purport to believe that this is not in some way a reflection on the way in which their society is organized, but only on the moral (and maybe also genetic) degeneracy of the denizens of the ghetto. (Barry, 2005: 3–4) We have seen that existing ‘epidermic’ cultural, social and economic stratifications do have an impact upon research agendas, and on the substance of produced genetic knowledge. The category of ‘race’ (rather than ancestry), for example, continues being widely used in genetic research, particularly in pharmacogenomics and behavioural genetics. Even for genetic conditions that potentially burden the general population without distinction, the risk of discrimination on the basis of the belonging to certain communities may not be excluded when the population of those groups is systematically screened for research purposes. The risk of genetic discrimination may, for members of those groups found to have the genetic trait, be worsened by existing stigma and prejudices grounded on ‘race’ and ‘ethnicity’.56 The representation of genetic risks as potentially burdening all human beings universally and indistinctively, independent of their socio-economic status, income brackets and vulnerability to oppression, is thus a misleading product of genetic reductionist beliefs (Sherwin and Simpson, 1999: 123). The segmented approach of ‘genetic exceptionalist’ legislation doesn’t take seriously the situation of persons who experience discrimination on multiple grounds. As termed by Susan M Wolf, ‘. . . anti-discrimination doctrine will obscure connections between disadvantaging based on race, gender, and genetics and will fail to serve those most burdened by those connections (Wolf, 1995: 349).’

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Contrary to what is misleadingly suggested in part of the literature on ‘genetic justice’, we are not presently occupying a kind of original position nor are we in a state of nature where current inequalities may be ignored, or in a just society where people have real equality of opportunity.57 Rosanvallon (1996), for example, revitalised the metaphor of the veil of ignorance – presenting it not as the counterfactual heuristic artefact intended by Rawls (1971) but as an imaged description of our actual situation – in postulating that we were on the threshold of the ‘genetic era’, being on the imminent point of becoming able to ‘see’ the presently unpredictable health destiny of individuals. Lifting the veil of molecular ignorance would not add much to what we already know about health, wealth and power disparities in our societies, though. If it exists at all, the veil of ignorance is already broadly translucent. A new social contract negotiated exclusively in view of not new but newly perceptible genetic inequalities would keep intact most inequalities existing today – including inequalities resulting from social and economic structures, and those reflected in the disparity of research funding allocated to diseases according to the level of solvency of the countries where they are more widespread. One can but acknowledge that genetic research does not merely discover a pre-existing reality but is also productive of a new reality; new patterns of classifications that are as much or more commanded by the present fabric of our political economy as by genuine genetic differences between people. In the same way as consumer sovereignty and demand have been subsumed under industrial sovereignty and created needs, one may say that, preceding the creation and use of genetic risk information, existing power relations decide what is to be considered as relevant risk information about people. The ensuing fundamental question is the following: from what stage of the process leading to the production of economic and genetic truths are issues of justice, fairness and equality raised? How deep is the level from which the impartiality and legitimacy of truth-producing processes are evaluated? How is the substance of the real, the objective domain of facts, decided? Is the law bound to take on the representations of the real that both biotechnology and economics provide in their respective fields? Or is legal inquiry (or rather legal philosophy) allowed to construct its vision of reality by observing the interactions that the fields may have over time between each other and with society generally? Observation of these interactions and dialectical interplays is useful in dissipating the hopeless longing for a genetic enlightenment and the mirages of certainties pervading current discourses about our post-genomic future. Jasanoff (2004)’s concept of co-production is highly relevant, as: A different understanding of science and its relation to power is needed. In place of a framework that casts science and power as already-formed

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entities that oppose each other, the simultaneous emergence of novel forms of knowing, and of governing the human, . . . challenges us to find conceptual tools that will draw into view the ways in which knowledge and power form together.58 The new inquiry paradigm suggested should lead one to think of the social/ economic/technical/political structure of society and biotechnological innovation as related to each other, as parts of the same metabolism, interacting in a dialectical manner, each being performative for the others. I have been concerned so far with the ‘archaeology’ of the dominant genetic representational regime, that is, with the identification of those features of our present representations of the social contract that have made genetic ‘truth claims’ possible. It is now time to assess the impacts that new genetic knowledge – and knowledge of genetic interpersonal differences particularly – could, in turn, have on our representations of the welfare state, and on contemporary modes of governance, and to try answering a crucial, yet seldom addressed question: what could the role of law be in such a post-juridical paradigm of power? That question will haunt the following part of this volume.

Notes 1 ‘We all have genetic flaws. Scientists estimate every human being has between 5 and 50 significant genetic mutations, making everyone ultimately unemployable and uninsurable’ (Slaughter, 2002). 2 See for example Brand (2007) about the Public Health Genomics European Research Network (PHGen). 3 See Sexton (2002): ‘. . . both the public and private health services that would disseminate the new drugs and procedures make cost-benefit decisions and value judgements about who should get what treatment. Many of the groups now considered to be the biggest potential beneficiaries of genetic research, such as the elderly and the seriously ill, are left by the wayside as treatments are rationed. In contrast, however, health services and insurance companies may vigorously promote some products, such as prenatal and adult gene testing, if they believe they might save the costs of supporting people in the long term. Moreover, the increasing privatisation of healthcare services around the world means that access to health care and medical products, including drugs and tests, is increasingly based not on need but on ability to pay – or to get health insurance. Private insurers tend to select the best risks – people who tend to be healthy anyway – and to reject those who have chronic illnesses or who cannot afford the insurance. The more health care financing is based on insurance, the more it will rely on assessments of individuals’ presumed risk of ill-health – something gene testing is posed to make enormously more complicated and supposedly accurate. . . . Just as private health services and insurers leave out people who can’t pay, so biotech research leaves out the illnesses from which those people suffer. Because large numbers of the people who can’t pay suffer from tropical diseases, those diseases are largely ignored by researchers. While pneumonia, diarrhoea, tuberculosis and malaria account for more than one-fifth of the world’s disease burden, they receive less than 1 per cent

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of the funds devoted to health research. The private sector is not inclined to put its own money into researching products for financially non-solvent people, which is why it requires public subsidies to do so. Public funds for healthcare services are also in short supply. The International Monetary Fund (IMF) has compelled many debt-ridden countries to cut back their public spending on health in order to be considered eligible for loans. Those public health services that still remain in these countries have been pushed into charging their patients user fees. The result? People simply use medical services less – and sometimes die of easily-treatable diseases such as tuberculosis because they cannot afford the treatment.’ See also Buchnan (1996). See Duster (2003: 137): ‘[C]ontemporary scientists are often drawn to make a separation between pure and applied science, and pure and applied genetics. But this is a distinction that is hard to sustain as one get closer and closer to the decisions about what kinds of questions are to be investigated in human genetics.’ ‘Knowledge is power. Genetic research will give private companies involved in genetic research power over its applications. Commercial gene pool expeditions involving large parts of the Icelandic, Newfoundland, Quebec, Utah, Sardinian, Estonian and Tonda populations will surely lead to findings with significant healthcare benefits. But we have to make sure that we keep the ability to steer those who are accountable to shareholders into a system that is accountable to the public good. In that respect, it is important to constantly keep in mind the need for public involvement in genetic research. The public involvement through governmental funding and open debate not only constitutes a moral sign-post but will also make it possible to stimulate research on commercially less interesting healthcare interventions. In the end, public funding remains crucial for scientific progress; we should not forget that scientists who are allowed to ponder questions freely, without immediate concerns about commercial viability, have come up with some of the most significant findings’ (Lemmens, 2001). In this regard, when a relatively low amount of funding is granted to a group of patients who also belong to a suspect category because of their race or gender (on the assumption that certain genetic diseases concern only men or only women), I would argue that the government is under a duty to justify its allocation choices thoroughly, by displaying the compelling reasons of such a choice that puts at a disadvantage one historically oppressed or disfavoured category of persons. In the other cases, when disparate funding does not raise suspicion of prejudice because the disease at stake is spread evenly in all the categories of the population, the qualification of discrimination is much less obvious. The ideal of equal concern should, however, prompt governmental authorities to engage in substantial reflection on their motivations and reasons of their distribution of scarce resources. Gender Studies Programme Seminar in the framework of the ‘Biotechnologies’ series and in collaboration with the SPS Department Prof. Silvana Sciarra (EUI – LAW) Dawn Lyon (RSCAS) Turning the Book of Life into a Catalog: Issues raised by genetic research, Barbara Katz Rothmann (CUNY – City University of New York) 9 December 2002. See Shildrick (2004: 152): ‘. . . where physical appearance alone can be misleading, evidence of genetic links appears to offer certainty about the relations of kinship. Clarity about parental and generational lines – about who belongs to whom – remains fundamental to western notions of family life, and where the nuclear family has been pitched as the foundation of civilised society itself, the authoritative discourse of genetics will clearly play a master role in cases of uncertainty’. Michel Foucault made a parallel observation regarding ‘truth’ and ‘history’: ‘. . .

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pour qu’elle ne soit pas compromise par l’histoire, il est nécessaire non pas que la vérité se constitute dans l’histoire, mais seulement qu’elle se révèle en elle; cachée aux yeux des hommes, provisoirement inaccessible, tapie dans l’ombre, elle attendra d’être dévoilée. L’histoire de la vérité serait essentiellement son retard, sa chute ou la disparition des obstacles qui l’ont empêchée jusqu’à maintenant de venir à la lumière. La dimension historique de la connaissance est toujours négative par rapport à la vérité’ (Foucault et al, 1971: 1,348). ‘Le materiel génétique modèle le masque par lequel la société et le droit reconnaissent la personne; un masque non plus fait de traits familiers, soumis aux caprices du temps et des sentiments, mais un masque immuable, une empreinte intérieure, fidèle et inaltérable’ (Galloux, 1988). The ‘one-blood-drop’ standard took statutory form Tennessee and Louisiana in 1910, in Texas and Arkansas in 1911, in Mississippi in 1917, in North Carolina in 1923, in Virginia in 1924, in Alabama and Georgia in 1927 and in Oklahoma in 1931. Although Florida, Indiana, Kentucky, Maryland, Missouri, Nebraska, North Dakota and Utah retained their old blood fraction statutes, they amended their blood fractions to be equivalent to one-drop de facto. By 1925, almost every State applied the one-blood-drop standard. Plessy v Ferguson, 163 US 537 (1896). The ‘separate but equal’ doctrine was overruled in 1954, by the Supreme Court’s decision in Brown v Board of Education of Topeka, 347 US 483, 1954. See Foucault (1976b): ‘Par toute une série de recoupements avec la préhistoire et la paléontologie, on peut établir qu’il n’y a jamais eu de “races” dans l’espèce humaine; mais tout au plus un phénomène de “raciation”, lié à l’existence de certains groupes isolés. Ce processus, loin d’avoir abouti, s’est inversé à partir du néolithique et, par l’effet des migrations, déplacements, échanges, brassages divers, il a été relayé par une “déraciation” constante. Il faut concevoir une humanité où ce ne sont pas des races qui se juxtaposent, mais des “nuages” de populations qui s’enchevêtrent et mêlent un patrimoine génétique qui a d’autant plus de valeur que son polymorphisme est plus accentué. Comme le disait Mayr, l’humanité est un “pool de gènes intercommuniquants”: des populations, c’est-à-dire des ensembles de variations, ne cessent de s’y former et de s’y défaire. C’est l’histoire qui dessine ces ensembles avant de les effacer; il ne faut pas y chercher des faits biologiques bruts et définitifs, qui, du fond de la “nature”, s’imposeraient à l’histoire.’ ‘The French scientist Buffon is credited with introducing the concept of “race” into the biological literature in 1749, arguing from the outset that race was an arbitrary classification, serving only as a convenient label and not designating a definable scientific entity. It has been suggested that the systematic application of the concept of race can be associated with the development of the capitalist economy and global expansion by entrepreneurs, particularly with the slave trade and the arrival of a substantial number of Europeans in North America, followed by the subjugation of the indigenous peoples. It was not until the abolition of the slave trade in America in the later part of the nineteenth century, however, when Darwinian theory of biological change supplemented Herbert Spencer’s theory of social evolution, that the way was opened up for “race” to harden into a scientific concept that became increasingly difficult to refute. As is well-known, this theory of social evolution incorporated the twin ideas of progress and hierarchy, in which the “European race” was judged as the most advanced’ (Lock, 1999: 85–6). See also Hall (1993: 274), cited in Pugliese (1999): ‘Contrary to widespread belief – race is not a biological or genetic category with any scientific validity. There are different genetic strains and pools, but they are as widely dispersed within what are called races as they are between one race and another. Genetic difference – the last

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refuge of racist ideologies – cannot be used to distinguish one people from another. Race is a discursive not a biological category. That is to say, it is the organising category of those ways of speaking, systems of representation, and social practices (discourses) which utilise a loose, often unspecified set of differences in physical characteristics – skin colour, hair texture, physical and bodily features etc. – as symbolic markers in order to differentiate one group socially from another.’ On the correlations of human genetic variations and ‘race’, see National Human Genome Center at Howard University (2004). Sickle-cell disease is much more common in certain ethnic groups affecting approximately one out of every 500 African-Americans. Because people with sickle trait were more likely to survive malaria outbreaks in Africa than those with normal haemoglobin, it is believed that this genetically aberrant haemoglobin evolved as a protection against malaria (Medline Plus, Medical Encyclopedia, http://www.nlm.nih.gov/medlineplus/ency/article/000527.htm). See the September 1997 Final Report of the United States Task Force on Genetic Testing, Appendix 6. ‘Scientific advances and social risks: historical perspectives of genetic screening programs for sickle-cell disease, Tay-Sachs disease, neural tube defects and Down’s syndrome’, 1970–97, http://www.genome.gov/10001733. Lewontin (2005) explains that ‘individuals identified by themselves or others as belonging to one “race”, based on the small number of visible characters used in classical race definitions, are likely to have ancestry that is a mixture of these groups, a fact that has considerable significance for medical uses of race identification’. Agency for Health Care Policy and Research, 1993. National Sickle Cell Anaemia Control Act. Pub. L. No. 92–294, 86 Stat. 138 (16 May 1972). Public Law 92–294. The statute was amended in part and repealed in part in 1981, in the Omnibus Reconciliation Act, 95 Stat. 827 (1981). Article 26 §1 of the Council of Europe’s Convention on Human Rights and Biomedicine: ‘1. No restrictions shall be placed on the exercise of the rights and protective provisions contained in this Convention other than such as are prescribed by law and are necessary, in a democratic society in the interest of public safety, for the prevention of crime, for the protection of public health or for the protection of rights and freedoms of others . . .’.

24 The 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 (ETS 164) of 4 April 1997, provides in its Article 5, that ‘[A]n intervention in the health field may only be carried out after the person concerned has given free and informed consent to it. This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks. The person concerned may freely withdraw consent at any time.’ 25 See Kramer v Union Free School District, 395 US 621, 627 (1969); Shapiro v Thompson, 394 US 618, 634 (1969); Sherbert v Verner, 374 US 398, 406 (1963), Griswold v Connecticut, 381 US, at 485; Aptheker v Secretary of State, 378 US 500, 508 (1964); Cantwell v Connecticut, 310 US 296, 307–8 (1940); Eisenstadt v Baird, 405 US, at 460, 463–4; Roe v Wade, 410 US 113 (1973). 26 Mahler v Roe, 432 US 464 (1977).

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Harris v McRae, 448 US 297 (1980). Rust v Sullivan, 500 US 173 (1991). Planned Parenthood of South-eastern Pennsylvania v Casey, 505 US 833 (1992). In 1896, Connecticut made it illegal for an epileptic, an imbecile or a feeble-minded person to have extra-marital sexual intercourse if the woman was under the age of 45. By 1905, Kansas, New Jersey, Ohio, Michigan and Indiana had eugenic marriage laws. The first United States law forcing the sterilisation of people based on genetic defects was passed in 1907 in Indiana. Buck v Bell, 274 US 200 (1927). Skinner v Oklahoma, 316 US 535 (1942). Skinner v Oklahoma, 316 US 1942. at 536 and 541. Roe v Wade, 410 US 113 (1973) (United States Supreme Court) Opinions Blackmun, J, Opinion of Court VI. Vaughn v Ruoff, 253 F.3d 1124 (8th Cir. 2001). ‘It is true that involuntary sterilisation is not always unconstitutional if it is a narrowly tailored means to achieve a compelling government interest. See Buck v Bell, 274 US 200, 207–8 (rejecting due process and equal protection challenges to compelled sterilisation of mentally handicapped woman). It is also true that the mentally handicapped, depending on their circumstances, may be subjected to various degrees of government intrusion that would be unjustified if directed at other segments of society. See Cleburne, 473 US at 442–47; Buck, 274 US at 207–8. It does not follow, however, that the State can dispense with procedural protections, coerce an individual into sterilisation, and then after the fact argue that it was justified. If it did, it would invite conduct, like that alleged in this case, that is ripe for abuse and error. See Buck, 274 US at 206 (noting that Virginia’s sterilisation law required the state to comply with its “very careful provisions by which the act protects the patients from possible abuse”). Even assuming Missouri had a compelling interest in preventing further births by Margaret, such a compelling interest does not justify dispensing with procedural protections. Sterilisation results in the irreversible loss of one of a person’s most fundamental rights, a loss that must be preceded by procedural protections. Ruoff’s conduct violated Margaret’s Due Process Clause right to be free from coerced sterilization without appropriate procedures.’ Norman Bloodsaw v Lawrence Berkeley Laboratory, 135 F.3d 1260 (US 9th Circuit Court of Appeals), 3 February 1998. The Department requires federal contractors such as Lawrence to establish an occupational medical program. Since 1981, it has required its contractors to perform pre-placement examinations of employees as part of this programme, and until 1995, it also required its contractors to offer their employees the option of subsequent periodic health examinations. The mandatory pre-placement examination occurs after the offer of employment but prior to the assumption of job duties. The Department actively oversees Lawrence’s occupational health programme, and, prior to 1992, specifically required syphilis testing as part of the pre-placement examination. Public Law 92–294. The statute was amended in part and repealed in part in 1981, in the Omnibus Reconciliation Act, 95 Stat. 827 (1981). Americans with Disabilities Act 1990 (Pub. L. 101–336) § 12112 (d) Medical examinations and inquiries (1) In general. – The prohibition against discrimination as referred to in subsection (a) of this section shall include medical examinations and inquiries. (2) Pre-employment. – (A) Prohibited examination or inquiry. – Except as provided in paragraph (3), a covered entity shall not conduct a medical examination or make inquiries of a job applicant as to whether such applicant is

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an individual with a disability or as to the nature or severity of such disability. (B) Acceptable inquiry. – A covered entity may make pre-employment inquiries into the ability of an applicant to perform job-related functions. (3) Employment entrance examination. – A covered entity may require a medical examination after an offer of employment has been made to a job applicant and prior to the commencement of the employment duties of such applicant, and may condition an offer of employment on the results of such examination, if – (A) all entering employees are subjected to such an examination regardless of disability; (B) information obtained regarding the medical condition or history of the applicant is collected and maintained on separate forms and in separate medical files and is treated as a confidential medical record, except that – (i) supervisors and managers may be informed regarding necessary restrictions on the work or duties of the employee and necessary accommodations; (ii) first aid and safety personnel may be informed, when appropriate, if the disability might require emergency treatment; and (iii) government officials investigating compliance with this chapter shall be provided relevant information on request; and (C) the results of such examination are used only in accordance with this subchapter. (4) Examination and inquiry. – (A) Prohibited examinations and inquiries. – A covered entity shall not require a medical examination and shall not make inquiries of an employee as to whether such employee is an individual with a disability or as to the nature or severity of the disability, unless such examination or inquiry is shown to be jobrelated and consistent with business necessity. (B) Acceptable examinations and inquiries. – A covered entity may conduct voluntary medical examinations, including voluntary medical histories, which are part of an employee health program available to employees at that work site. A covered entity may make inquiries into the ability of an employee to perform job-related functions. (C) Requirement. – Information obtained under subparagraph (B) regarding the medical condition or history of any employee is subject to the requirements of subparagraphs (B) and (C) of paragraph (3). 41 Section 703(a) of Title VII of the Civil Rights Act of 1964 provides that it is unlawful for any employer: (1) to fail or refuse to hire or to discharge any individual, or otherwise to discriminate against any individual with respect to his compensation, terms, conditions, or privileges of employment, because of such individual’s race, color, religion, sex, or national origin; or (2) to limit, segregate, or classify his employees or applicants for employment in any way which would deprive or tend to deprive any individual of employment opportunities or otherwise adversely affect his status as an employee, because of such individual’s race, color, religion, sex, or national origin. 42 See the United States Equal Employment Opportunity Commission, Questions and Answers: Enforcement Guidance on Disability-Related Inquiries and Medical Examinations of Employees under the Americans with Disabilities Act (ADA): ‘[T]he ADA limits an employer’s ability to make disability-related inquiries or require medical examinations at three stages: pre-offer, post-offer, and during employment. The rules concerning disability-related inquiries and medical examinations are different at each stage. At the first stage (prior to an offer of employment), an employer may not ask any disability-related questions or require any medical examinations, even if they are related to the job. At the second stage (after an applicant is given a conditional job offer, but before he or she starts work), an employer may ask disability-related questions and conduct medical examinations, regardless of whether they are related to the job, as long as it does so for all entering employees in the same job category.

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At the third stage (after employment begins), an employer may make disabilityrelated inquiries and require medical examinations only if they are job-related and consistent with business necessity.’ http://www.nitromed.com/bidil/bidil.asp. See, among others, Hoffman, 2005; Lee, 2003; Lee et al, 2001; Lewontin, 2005. See Kaiser (2003), Goldstein and Writers (2003), Pollack (2003) and Holden (2003). NitroMed Initiates Confirmatory BiDil® Trial in African American Heart Failure Patients – First prospective heart failure trial conducted exclusively for black patients – 17 March 2001, http://web.archive.org/web/20040904181112/http:// www.nitromed.com/press/03–17–01.html. The operational definition of race used for recruitment of subjects is similar to that which has been used by the authors of The Bell Curve, who explained that they ‘. . . frequently use the word ethnic rather than race, because race is such a difficult concept to employ in the American context. What does it mean to be “black” in America, in racial terms, when the word black (or African-American) can be used for people whose ancestry is more European than African? How are we to classify a person whose parents hail from Panama but whose ancestry is predominantly African? Is he a Latino? A black? The rule we follow here is to classify people according to the way they classify themselves. The studies of “Blacks” or “Latinos” or “Asians” who live in America generally denote people who say they are Black, Latino, or Asian – no more, no less’ (Herrnstein and Murray, 1994: 271). NitroMed, Inc, Press Release: NitroMed Receives FDA Letter on BiDil NDA, a Treatment for Heart Failure in Black Patients, http://www.prnewswire.com/ cgi-bin/stories.pl?ACCT=104&STORY=/www/story/03–08–2001/0001443473, 8 March 2001. Patent no EP785216. Test for BRCA1 and BRCA2 genes, associated with breast, ovarian and colon cancers, are well established. Hereditary breast cancer accounts for approximately five to ten percent of all breast cancers (for at least 95 per cent of breast cancer, there is no inherited genetic susceptibility), with mutations in BRCA1 and BRCA2 thought to be responsible for the overwhelming majority (about 90 per cent) of inherited cases. Women who carry one of the BRCA1 or BRCA2 mutations have an estimated 80 per cent risk of developing breast cancer before the age of 70 and may also be at elevated risk for colon, fallopian tube, and peritoneal cancers. Over 700 mutations of BRCA1 have been discovered to predispose to the development of both ovarian and breast cancer, and 800 mutations of BRCA2 are known to predispose to those cancers. See EPO press release, Munich, 21 January 2005: The patent now relates to a gene probe of a defined composition and no longer includes claims for therapeutic and diagnostic methods. Convention on the grant of European patents (European Patent Convention), of 5 October 1973. European Society of Human Genetics, 2005. EPO press releases, ‘Patent on Breast Cancer Gene 2: patent maintained in amended form after public hearing’, 29 June 2005. ‘The science of human genetics, deeply mired in the evolutionary paradigm, has always been poised to raise questions that address the explanation (and often) justification for human social stratification. The relative prominence of certain knowledge structures is related to the ability of specific groups, located variously in the social structure, to get their questions asked’ (Duster, 2003: 140). Clayton (1995) suggested, for example, that native Americans may be quite concerned about efforts to find an alcoholism gene common to their population.

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57 A similar argument has been raised by Wenz (2005) against the idea defended in Buchanan et al (2001): whilst their book’s explicit aim was to define ‘what are the most basic moral principles that would guide public policy and individual choice concerning the use of genetic interventions in a just and humane society in which the powers of genetic intervention are much more developed than they are today’, their conclusion that genetic engineering should be used relatively intensively is flawed if it is to be implemented in actual, real American society, which is far from being just and humane given the ongoing inequalities of opportunities. 58 For a critique of the Platonician dichotomy between ‘science’ (as the domain of apolitical, objective and ahistorical truths), and ‘society’ (the tyranny of the social, of public life, politics, partial subjectivity, and crude agitation), see Latour (1997 and 1999).

Part 2

The socio-economic life of genes: genetic risks and insurance

Introduction: Putting regulation of genetic information flows in context: introduction to some differences between the United States and Europe

The surfacing of predictive and probabilistic genetic information, potentially treated as a new kind of social and economic commodity on markets for social goods such as insurance and employment, raises a variety of superimposed and crossed ethical, legal and social dilemmas (Callahan, 1996). Should employers and insurers be allowed to mandate genetic testing as a precondition to employment or insurance, and to screen out from the workforce or insurance pools those at higher than average risk of future disease and disability or premature death? Will genetic information impact on the range of job opportunities available to those diagnosed with a sub-optimal genetic make-up? Could genetic information condition access and pricing in healthcare, in life and disability insurance? If they cannot enforce genetic testing, should employers and insurers nevertheless be allowed to require individuals to disclose results of previous genetic tests results? May current and potential employees and policy-holders voluntarily disclose genetic information to employers and insurers when disclosure would allow them to be hired preferentially or to demonstrate to the insurer that they should not be placed in a substandard class of risks? Whereas the general public fears that genetic information will be misused by private and public institutions as a basis for withholding certain rights, privileges or benefits or granting such benefits only on less favourable conditions than would otherwise be imposed, private and public institutions are particularly concerned about the allocative inefficiencies and potential business disruptions they would endure being denied access to genetic insights about the individuals they are dealing with in contractual contexts. Individuals’ rights to privacy and interests in employment and insurance must be weighed against the interests of insurers and employers in using genetic information to better estimate future costs. The critical policy issue is thus to choose among the wide range of alternatives situated between two following extremes: at one end of the continuum, a prohibitionist attitude maintaining the strict genetic opacity of persons and the non-marketability of biological and digital genetic information, even against the wishes of the individuals concerned; at the other end, a libertarian or, alternatively, utilitarian attitude granting individuals unrestricted alienable

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property rights over their genetic information and genetic material. The prohibitionist approach is grounded on fairness (employing the principle that natural talents and weaknesses, which do not constitute a proper basis for individual responsibility, should not be considered as valid criteria for allocating differential social and economical rewards or opportunities) or in a perspective that considers genetic information as inalienable owing to its close relationship with identity, personhood or dignity. On the contrary, the libertarian attitude, denying or restricting metaphysical arguments of identity, personhood or dignity, questions the economic efficiency of applying inalienability rules to economically valuable genetic information and their compatibility with the doctrine of individual autonomy and governmental neutrality. The existence of social protection institutions, particularly universal healthcare systems in most European countries, minimises the potential impact of genetic diagnosis and prognosis on access to health services in those countries. In universal social security schemes, access to health insurance does not involve underwriting, that is, discrimination and sorting of applicants according to individual risk assessments. In European countries where universal allocation of healthcare is organised, debates about the use of genetic information in insurance have been mostly restricted to the question of genetic discrimination in life insurance. In its 1999 report prepared for the Council of Europe, the Expert Committee on the use of medical examination for employment and insurance purposes (European Council Health Committee, 1999: 10) explicitly restricted its field of investigation – as far as insurance is concerned – to the private insurance market. It declared that, for the purpose of the report, insurance, concerns all situations in which insurance cover is provided on a voluntary basis under a contract governed by common or civil law; it does not include social insurance arrangements, which come under public law and include obligatory participation by the individuals covered. In such a case, there is no contractual freedom and no risk of the use of medical examinations for the purposes of selection. Obviously, the problems arising from the emergence of new human genetic technologies in the context of universal healthcare coverage are different from those arising when commercial insurers contemplate the possibility of using genetic tests and genetic information in risk evaluation procedures. It is widely accepted that rules governing commercial insurance and rules governing universal insurance are different and should remain so. Private insurance is a business that legitimately pursues financial profit. As long as it respects rules of minimum solvency and good practice, it cannot be reproached. Universal social insurance, on the other hand, fulfils the state’s role in providing citizens with the basic good of healthcare. Healthcare covered by universal

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health insurance is provided according to need, unlike healthcare paid for through private insurance, which is provided according to one’s willingness or ability to pay. As far as health insurance is concerned, America’s private, voluntary purchase approach differs fundamentally from the public, compulsory, universal approach in Europe.1 These institutional differences render the legal challenges posed by the use of genetic information for health insurance purposes slightly different on both sides of the Atlantic. The fact that health insurance benefits in the United States are, for the majority of people, conditioned by employment, has attracted dramatic attention to the threats of genetic discrimination in health and disability insurance and in employment. One of the main reasons for employers to claim access to genetic information about employees is indeed related to their need to take out insurance policies with private companies, which calculate the cost based on previous experiences with the same company.2 American federal workers are protected to some degree against genetic discrimination: on 8 February 2000, President Bill Clinton signed an executive order3 forbidding the use of genetic testing in the hiring of federal employees. This guarantee does not extend to the private sector, however. Indeed, leading libertarians persist in their focus on the government alone as the greatest enemy to individual privacy. The opposite attitude seems to have recently prevailed in Germany where the National Ethics Council recommended to the German government that there should be a new law to protect employees against genetic discrimination but it also suggested that genetic tests should be considered, in addition to existing obligatory prognostic tests, for employees in permanent employment as civil servants, when the genetic test results would be relevant in assessing an employee’s risk of becoming ill or unsuitable for the job in the next five years. For employees without lifelong job security, the Council recommends that a positive test should count against the employee only if it might have a serious impact on their job suitability within the first six months (Tuffs, 2005). In the United States, faced with rising health costs and increasing threats of lawsuits related to worker illness, many private employers have adopted health-screening policies focusing on individuals who may pose a special risk in the workplace (Draper, 1999). Although the American situation of health insurance and employment seems nearly incommensurable with the European one, I would argue that some elements indicate that Europe’s direction may well take an American turn. Despite a long and distinguished tradition, social health insurance arrangements in western Europe have come under increased pressure during the past ten years.4 Yet, until recently, discussions in European countries about the use of genetic information outside the clinical and research context have been more targeted on questions of genetic discrimination in the market for private life insurance, rather than in health insurance. An additional explanation for the

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European focus on the former issue may also be found in the special social value vested in life insurance in European countries. As life insurance is often required as a precondition to getting a loan, for example, and is also conceived as a necessary matter of responsibility towards one’s family, it should arguably be considered as a basic good rather than as a pure commodity. Fears of genetic discriminations have generated intensive legislative and regulatory activity worldwide. The first instinctive reaction to public fears of threats to fundamental human rights resulting from misuse of genetic information outside the healthcare context has been the enactment of specific international, regional and national regulations protecting the genetic privacy of individuals and prohibiting genetic discrimination, mostly in employment and insurance.5 These regulations have been enacted with the aim of restricting the possibility of genotypic differences being used by health, disability and life insurance providers and employers. Allowing insurers to oblige their customers to undergo genetic tests as a precondition to insurance is not a legal option in countries that have ratified the Council of Europe’s Convention on Human Rights and Biomedicine.6 Article 12 of this Convention specifically provides that ‘[t]ests which are predictive of genetic diseases or which serve either to identify the subject as a carrier of a gene responsible for a disease or to detect a genetic predisposition or susceptibility to a disease may be performed only for health purposes or for scientific research linked to health purposes, and subject to appropriate genetic counseling’. The aim of providing an insurer with predictive genetic information does not constitute an acceptable basis for performing a genetic test according to the Convention.7 In most countries that have not ratified the Council of Europe’s Convention on Human Rights and Biomedicine, the favoured solution seems to be to prevent insurers from requesting genetic testing as a condition for insurance on the basis that such a request would run counter to the privacy rights of prospective policy-holders, and against their ‘right not to know’ about their genetic status,8 which has been acknowledged in several international instruments. The UNESCO’s Universal Declaration on the Human Genome and Human Rights, for example, comprises an Article 5(c) that reads as follows: ‘The right of each individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected.’ The Council of Europe’s Convention on Human Rights and Biomedicine also explicitly provides in its Article 10 that ‘Everyone has the right to respect for private life in relation to information about his or her health. Everyone is entitled to know any information collected about his or her health. However, the wishes of individuals not to be so informed shall be observed . . .’ The principle is in line with the actuarial logic: the principles of good faith and mutual exchange of known relevant information between the prospective policy-holder and the insurer require the former to disclose any

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information known to him that he knows to be relevant to evaluating his risk, but does not oblige him specifically to enquire into potential risks. More controversial issues concern whether insurers should be allowed to request disclosure of genetic test results known by insurance applicants when genetic tests have been taken beforehand and/or whether they should be allowed/requested to take into account genetic information spontaneously disclosed by prospective policy-holders. International and regional regulations restricting the possibility of genotypic differences being used in a discriminatory manner by health, disability and life insurers have been enacted. For example:

•

•

•

Article 11 of the Council of Europe’s Convention on Human Rights and Bio-Medicine (Council of Europe, 1997b), stipulates that ‘any form of discrimination against a person on grounds of his or her genetic heritage is prohibited’; Article 21 of the Charter of Fundamental Rights of the European Union (European Union, 2000) provides that ‘any discrimination based on any ground such as sex, race, colour, ethnic or social origin, genetic features, language, religion or belief, political or any other opinion, membership of a national minority, property, birth, disability, age or sexual orientation shall be prohibited’; Article 6 of the UNESCO’s Universal Declaration on the Human Genome and Human Rights (UNESCO, 1997) reads as follows: ‘No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity’;

The UNESCO’s International Declaration on Human Genetic Data (UNESCO, 2003) comprises the following:

•

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Article 7: ‘Non-discrimination and non-stigmatization (a) Every effort should be made to ensure that human genetic data and human proteomic data are not used for purposes that discriminate in a way that is intended to infringe, or has the effect of infringing human rights, fundamental freedom or human dignity of an individual or for purposes that lead to the stigmatisation of an individual, a family, a group or communities. (b) In this regard, appropriate attention should be paid to the findings of population-based genetic studies and behavioural genetic studies and their interpretation.’; Article 14: privacy and confidentiality: ‘(a) States should endeavour to protect the privacy of individuals and the confidentiality of human genetic data linked to an identifiable person, a family or, where appropriate, a group, in accordance with domestic law consistent with the international law of human rights. (b) Human genetic data, human proteomic data and biological samples linked to an identifiable person should not

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be disclosed or made accessible to third parties, in particular, employers, insurance companies, educational institutions and the family, except for an important public interest reason in cases restrictively provided for by domestic law consistent with the international law of human rights or where the prior, free, informed and express consent of the person concerned has been obtained, provided that such consent is in accordance with domestic law and the international law of human rights. The privacy of an individual participating in a study using human genetic data, human proteomic data or biological samples should be protected and the data should be treated as confidential.’ In its Resolution 2004/9 on Genetic Privacy and Non-Discrimination of 21 July 2004,9 the United Nations Economic and Social Council (ECOSOC) urges States to ensure that no one shall be subjected to discrimination based on genetic information; to protect the privacy of those subject to genetic testing; to ensure that genetic testing and the subsequent processing, use and storage of human genetic data is done with the prior, free, informed and express consent of the individual or authorisation obtained in the manner prescribed by law consistent with international law, including international human rights law; to ensure that limitations on the principle of consent are prescribed only for compelling reasons, such as forensic medicine and related legal proceedings, by domestic law consistent with international law, including international human rights law, and calls upon States to take appropriate specific measures, including through legislation, to prevent the misuse of genetic information leading to discrimination against, or stigmatisation of, individuals, members of their families or groups in all areas, particularly in insurance, employment, education and other areas of social life, whether in the public or the private sector, and in this respect calls upon States to take all appropriate measures to ensure that the results and interpretations of population-based genetic studies are not used for purposes that discriminate against the individual or group concerned. The Resolution also calls upon States to promote, as appropriate, the development and implementation of standards providing appropriate protection with regard to the collection, storage, disclosure and use of genetic information taken from genetic tests that might lead to discrimination, stigmatisation or invasion of privacy. Whereas those international policy instruments seem to attest to a kind of consensus against the use of genetic information in the socio-economic field, national legislative and regulatory approaches exhibit a considerable degree of heterogeneity, due to the varyingly persuasive force of insurance lobbies, diverse cultural sensibilities and divergent organisational structures of healthcare provision (Chadwick, 1997). As a matter of fact though, the few instances of genetic discrimination that have yet arisen are too occasional and isolated to support fears of systematic

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genetic discrimination or concerns about the creation of a genetic underclass of unemployable, uninsurable people. However, studies about discrimination found that a number of institutions, including health and life insurance companies, healthcare providers, blood banks, adoption agencies, the military and schools, were reported to have engaged in genetic discrimination against asymptomatic individuals.10 Those studies has been criticised by the insurance industry as relying on anecdotal information.11

Notes 1 According to the United States Census Bureau’s 2003 and 2004 Population Survey, in 2003, 15.6 per cent (45 million) of Americans were without health insurance coverage. Among the 84.4 per cent (243.3 million) of Americans with health insurance coverage, 60.4 per cent (174 million) were covered by employment-based health insurance (under individual health insurance, the insured is personally purchasing the insurance, while in group health insurance, that person’s employer owns the policy and he, as well as the other employees, are covered as a group under the policy); 26.6 per cent (76.8 million) were on government health insurance programmes; 12.4 per cent (35.6 million) relied on Medicaid, 13.7 per cent (39.5 million) on Medicare, and 3.5 per cent on military healthcare. 9.2 per cent obtained insurance through direct purchase. 2 See Lujan and Moreno (1996). See also Draper (1999), Glazier (1997), Alper and Beckwith (1998) and Colby (1998). 3 Executive Order 13145. See also the Equal Employment Opportunity Commission (EEOC) enforcement guidance: Policy guidance on executive order 13145, 26 July 2000, 2000 WL 33407180. 4 See Saltman et al (2004). See also Rich (2001: 422): ‘The managed care experience of the United States and the employment crisis in Europe may be leading to a convergence in the organization and financing of our respective healthcare systems.’ 5 Among the most recent examples of such legislative actions is the Genetic Information Non-discrimination Act of 2005 passed by the United States Senate on 17 February 2005, prohibiting health insurers from requiring or using information from genetic tests when issuing health insurance or setting premiums. For a comparative international overview of those legislations and policies (taking the form of legislation, guidelines, moratoria or ratification and implementation of international and/or regional binding instruments), see Knoppers et al (2004). 6 Council of Europe, 1997b: As of 29 August 2006, the following countries have ratified the Convention: Bulgaria, Croatia, Cyprius, Czech Republic, Denmark, Estonia, Georgia, Greece, Hungary, Iceland, Lithuania, Moldova, Portugal, Romania, San Marino, Slovakia, Slovenia, Spain and Turkey. Countries that have not ratified the Convention may nonetheless have to take it into consideration, especially as the European Court of Human Rights may refer to it as a standard, as it did in cases involving France (in Vo v France, 8 July 2004, Application no 53924/00, §84) and the United Kingdom (in Glass v United Kingdom, 9 March 2004, Application no 61827/00, §75). See Nys (2005). 7 See also the Council of Europe’s Recommendation R(92)3 of 1992 on genetic testing and screening for healthcare purposes and, in particular, Principles 6 and 8, allowing genetic testing and screening only exceptionally and the collection and processing of personal data thereof only for the purposes of healthcare, diagnosis

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and disease prevention, and the Recommendation (97)5 of 1997 on the protection of medical data and, in particular, Principle 4.9 providing that the collection and processing of genetic data should in principle only be permitted for health reasons. See Sandberg (1995: 1549). See also Keays (1999: 361): ‘Genetic information is also by its very nature extremely private. Many individuals prefer to let their future unravel as time passes rather than be burdened with the knowledge that they are going to suffer, or are predisposed to, a disease. To require testing as a prerequisite to insurance conflicts with an individual’s right not to know.’ 46th plenary meeting 21 July 2004. See Geller et al (1996). See also Billings (2005). See the American Council of Life Insurance’s Statement Regarding the Council for Responsible Genetics’ ‘Study’ on Genetic Discrimination (11 April 1996), cited by Jones, (2003). See also Treloar et al (2004) and Greely (2005).

Chapter 6

Previews of the future as background

‘Le présent serait plein de tous les avenirs, si le passé n’y projetait déjà une histoire.’ (André Gide (1897), Les nourritures terrestres, Mercure de France)

Although the ethical, legal and economic issues raised by the encounter of private insurance and pre-symptomatic genetic information are still marginal,1 forward-looking scholarship predicts that the combination of the ongoing dismantling of collective social insurance systems2 and the future generalisation of genetic testing in the general population will soon render these issues vital for society (Radetzki et al, 2003; Billings, 2005, Geller et al, 1996, Billings et al, 1992). Debates about the proper use of genetic information in insurance and employment are typically framed in an anticipatory perspective, and in view of a projected context that is often represented as the inevitable future state of affairs. Legal scholars, prompted to provide legal responses to what is presented to them as the most pressing issues of the post-genomic era – the imminent threats of genetic discrimination and the forecasted violations of genetic privacy – are often reluctant to question the preconceptions and representations of the future on which their policy recommendations are grounded. Assessing preconceptions, however, is probably what is most urgently needed in the present situation.

A. The dismantling of collective social insurance systems The general crisis of the welfare state: a predisposed belief of neoliberalism In the last part of the twentieth century most Western countries have experienced public-sector reforms involving phenomenons of privatisation, decentralisation, devolution of national government functions to lower regional levels, transfer of attributions to supranational institutions and a decrease in

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public involvement and public participation. The healthcare systems have been especially targeted by the reforms, with noticeable shifts of responsibility from state healthcare systems towards private service providers, and gradual replacement of the principles of universality and solidarity by principles of selectivity and individual responsibility. Those reforms responded to the globally dominant message of neoliberalism described by Joel Handler as composed of three parts: The first is the theory of political economy – the efficient market that is cast in neutral, value-free laws, not laws in the sense of legislation enacted by democratic governments, but laws that are neutral, scientific, that govern national and international economies . . . The second part of the theory is anti-statism. The collapse of the Soviet Union not only eliminated communism as an ideology, not only socialism, but also government. Government – in the United States – is now considered part of the problem. The ideological thrust is not only decentralization and deregulation, but also privatization, a movement that is very extensive and growing. The third part of the theory is to blame the victim. It is the age-old practice of demonizing the poor as a way of diverting attention from structural economic conditions. (Handler, 2000: 796–7) Whether social insurance as a basic pillar of the welfare state still has a chance of survival is a question not usually even raised by scholars involved in research about the impacts of the ‘new’ human genetics on privacy and non-discrimination laws and practices: Commercialization of the social insurance systems and adjustment to individual needs will no doubt continue, despite the opposition from those who dislike the reforms. Private alternatives are likely to gain expanding roles, primarily in consequence of the practical problems and fundamental dilemmas arising from social insurance. (Radetzki et al, 2003: 63) Indeed, although the idea of more privatisation necessarily bringing more efficiency has been proven incorrect in several instances,3 the judgment that public and compulsory social insurance are inefficient seems irreversible in the writings of some authors. Marcus Radetzki and colleagues, for example, confidently assert that: The creation and maintenance of an unrestrained competitive market is a necessary precondition for cost reduction and efficiency. The operation of such a market makes it possible for the individual to equalise the marginal cost and marginal utility of insurance, and so to avoid inadequate or

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excessive insurance protection. A freely operating competitive market is therefore a prerequisite for success in maximising the utility derived by society from the resources expended on insurance to protect against illness and premature death, and to provide pensions during old age. (Radetzki et al, 2003: 146) The equation suggested between commercialisation of the social insurance systems and adjustment to individual needs may only be superficial however, as commercialisation of social insurance will shift the criteria for access to insurance from need to ability to pay. Among the typical presumptions of neoliberalism is the perception of redistribution (organised, for example, through compulsory social insurance) as inimical to efficiency.4 This assumption may be viewed as a central strategy to justify public subsidies supporting capital and corporate needs, and to entrench specific prejudice-based value hierarchies of socially useful human activities. Caring activities, for example, are obviously socially useful: no successful businessman/woman could easily reverse the presumption that he/she owes part of his/her fortune and success to his/her caring parent(s). Yet, quite systematically, people performing those caring activities depend on relief schemes, and are as such subjected to the associated moral judgments,5 rather than on gratifying paid labour schemes. The underlying prejudice is that although the successful executive produces resources, a carer merely consumes those resources without contributing to the production of anything. The same bias inspired Richard Epstein’s contention (a contention that will be further assessed later in this volume) that pregnancy is not the kind of ‘risk’ that a person should be able to shift onto others, according to the principle that only the risks that people cannot possibly avoid should be transferable to insurers (Epstein, 1992: 329–49).6 Redistributive schemes are accordingly considered on the side of costs, whilst reciprocity schemes are considered as productive. The arbitrariness of this distinction has been widely criticised in feminist scholarship.7 The correction of arbitrariness is something that commonly held views about justice probably require (Derrida, 1992). As Martha McCluskey explained: . . . attempts to revive social citizenship as a complement or balance to the neoliberal market are caught within a double bind. In the mainstream view, the welfare state is both the only cure for the neoliberal market’s devastating casualties and the critical disease the neoliberal market must constantly fight off. Protection against market losses always threatens to disrupt that market. As a result, either the protection, or the market losers (or both) must be sharply restrained. . . . Helping market losers will always seem to threaten the public good if that good is identified with market winners’ gains. (McCluskey, 2003: 875–6)

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The fundamental issue is one of framing: if one accepts as a natural and inevitable fact that we live in a market-oriented economic system and if one does not intend to think about those issues ‘with an archaeological mind’, in order to see how hierarchical value judgments have become ‘epidermalised’ in neoliberal ideology, then no significant change to current distributions of power and wealth may be envisioned, despite the arbitrariness of the algorithms currently used to distinguish activities for which people deserve rewards from those that qualify them as dependent and reliant on redistributive schemes. Rather, the aim of realising more equality of opportunity will be discarded as incompatible with the current dominant system: An extensive conception of equality of opportunity, requiring people not to have their opportunities restricted for reasons on which they have no control (brute bad luck) instructing public authorities to eliminate all existing inequalities that are due to handicaps caused by circumstances beyond the concerned individuals control is incompatible with the market-oriented economic system. (Radetzki et al, 2003: 145) By presenting the further privatisation of social insurances as a fact justified by the unquestioned and somewhat superficial doctrine of economic efficiency, one restricts the scope of permissible inquiry, or rather constrains it inside the limits of the present fabric of our political economy, placing the current dominant framework of cooperation outside the reach of democratic contestation. On the contrary, acknowledging the perceptual bias and prejudices sustaining current assessments of (in)efficiencies of universal social insurance and efficacy of privatised social insurance, allows the question of how the future should look to become open to political debate. New representational technologies are required to see through current ‘political anatomy’, behind perceptions and visibilities of the superficial layer of dominant ‘truth discourses’, and through the preconceptions about the future on which those discourses of truth are grounded. Hostility towards public social insurance rests essentially on an enumeration of practical problems experienced in the past and on what is presented as the fundamental dilemma caused by social insurance. Low economic growth since the mid-1970s; rising average life expectancy; an explosive development in the costs of public healthcare owing to generous rules; weak control of benefit payments; benefits being increasingly conceived as inalienable rights; important technological progress in the medical field; the development of new and expensive treatment methods; low birth rates and extended longevity, are listed as the practical problems associated with public social insurance. The ‘fundamental dilemma’ rests on the fact that the poorest groups are not as poor as in earlier periods, making the need for a social safety net far

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less critical; offers of expanded social insurance are now used by politicians attempting to win elections; the bodies that supplied social insurance have all had monopolistic features, and many have been outright monopolies with bad economic management; a failure to take into account the disparate levels of risk imposed by diverse economic activities has resulted in the public subsidisation of strenuous and risky endeavours. But, contrary to common belief, nothing in the enumerated practical problems and ‘fundamental dilemmas’ of public social insurance excludes the revival of a welfare state designed according to terms on which people would agree today. Although the frustrations generated by the ‘crisis’ of welfare states have to be addressed, they are not necessarily irremediable. Moreover, the prediction by some that ‘commercialization of the social insurance systems and adjustment to individual needs will no doubt continue, despite the opposition from those who dislike the reforms’, (Radetzki et al, 2003) seems oblivious to the strong public support remaining for universal social insurance. Although studies have shown the need to modernise social protection systems in Europe, they have also emphasised that social protection should not be viewed as a financial burden. Rather, it should be seen as a productive factor contributing to economic and political stability, which renders European economies more efficient without substantially impairing flexibility and, finally, is good for productivity (Handler, 2000, Barr, 2001, Blank, 1994). Both in Europe and the United States, health insurance tends to be perceived as a social good to which people should have a ‘right’. Differences remain, however, between the United States and Europe. The right to healthcare receives consistent and broad support in Europe, as attested to by its explicit inclusion in the EU Charter of Fundamental Rights,8 whereas in the United States, despite the New Deal and the Great Society Programs9 and notwithstanding the incorporation of a right to health and medical care in international legal instruments such as the Universal Declaration of Human Rights,10 the International Covenant on Economic, Social, and Cultural Rights,11 the WHO Charter and Conventions Nos 102 and 103 of the International Labor Organization, the role of the State in guaranteeing the social welfare of citizens remained tenuous and problematic. Yet, according to Simon and Baker, the American middle classes ‘have shown considerable resistance when faced with immediate reductions in their own safety nets, despite their enthusiasm for programs aimed at saving the poor from dependence on others’ (Baker and Simon, 2002: 6). The difference between the United States and Europe depends on the nature of the social contract between the state and its citizens.12 Yet, as suggested by Lemmens (1999) although the United States have clearly not chosen the same road as European countries to guarantee access to medical care and social welfare, their choice is subjected to adjustments and, as in any democracy, subject to debate.

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A silent question: the impact of genetic information policies on political support for universal health insurance Among the presuppositions often relied upon to shape the investigative field of genetics and insurance scholarship, there is the idea that the surfacing of genetic information raises ethical, legal and economic issues only in the context of a partially dismantled welfare system, or in other words, only in the context of a commodified or private insurance business. ‘Genetic discrimination in healthcare insurance is almost exclusively an American problem,’ wrote Henry T Greely (Greely, 2001). The allegation is that the surfacing of predictive genetic information as accurate health and mortality predictors does not raise questions in a compulsory collective social insurance system, based on a principle of solidarity, where premiums are not set as a function of the specific risks incurred by each policy-holder, but rather as a proportion of the policy-holder’s revenues. Arguably, the opposite idea could be defended: if the availability of predictive genetic information has the potential to redefine the terms on which private contracts such as insurance and employment are established, there is no reason why it might not also redefine the terms on which social contracts such as the national system of universal healthcare are established (Lujan and Moreno, 1996). In this regard, one may regret that most authors fail to assess the impact that genetics may have on compulsory social insurance schemes. Because the anticipatory approach presupposes the death of social health insurance, they probably have not considered it necessary to discuss the impacts that genetics might have on political support for social health insurance. Yet, if genetic information does not impact on the operation of compulsory social insurance, the surfacing of individual predictive genetic information may nevertheless contribute to intensify questioning of the political foundations of such a universal insurance system. Two scenarios may be envisaged in this regard: either genetic information further reduces political support for the welfare state, or, on the contrary, it revives demand for universal social insurance. First scenario: genetic information and the decrease of political support for social insurance DO GENETIC TESTS LIFT THE VEIL OF GENETIC IGNORANCE THAT GUARANTEED POLITICAL SUPPORT FOR THE WELFARE STATE?

In a first scenario, the availability of predictive genetic information reduces political support for universal health insurance. In the same manner as some authors proclaimed that the surfacing of predictive genetic information would mean the end of private insurance, it is also declared that our entry

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into the genetic information age signals the end of welfare states as we know them. In an era of welfare pessimism (Rhodes and Meny, 1998), the increased visibility, thanks to genetic tests, of individual risks of ill health, disability or early death is often assumed to challenge further the already weakened foundations of welfare states. The ‘genetic transparency’ of individuals’ future health diaries (though frequently overestimated) raises fundamental questions. Would genetic tests that provide statistical information on individual risks challenge the common or collective character of our sense of vulnerability and our correlative willingness to pay for social insurance? As willingness to pay seems to become one of the most fashionable legitimating arguments for public policies,13 our social contract would be at serious risk of collapsing if those with ‘good genes’ became reluctant to pay for those with ‘bad genes’. The probability of such a crisis is contingent, among other factors, upon the perceived shift from chance to choice as a determinant of one’s genetic condition or the condition of one’s children. As long as people believe that their lives are driven by fate, they are logically more ready to accept and pay for a national social security system. When they realise they can understand the differences within a set of choices (to be tested or not, to undertake preventive measures when available or not), and are capable of choosing what best suits their goals, and when, due to accessible genetic information about themselves and – in a hypothesis of generalised genetic transparency – about others, they begin to weigh their own personal genetic risks against their opportunity of tax savings if they exit from the social contract, one has to reconsider fundamentally the basis of the social contract, including potential exit options (Fried, 2003). If people naturally consent to be bound by collective arrangements regarding a destiny they remain ignorant of, will those individuals who know they will be spared from particular costly diseases agree to continue paying the same amount of tax to fund compulsory and universal health insurance for others who are genetically at risk of developing those costly diseases? In this first scenario, the lifting of the veil of molecular ignorance, the new visibility of genetic inequalities, and the increasing heterogeneity of the self-perception of risk in the population, challenges the philosophical basis of the welfare state.14 According to Pierre Rosanvallon, as mentioned earlier, the welfare state operated behind a Rawlsian veil of ignorance: its basic principle assumed that individuals were equal with regard to the social risks that could potentially impact upon their existence. The opacity of the social was an implicit condition to the feeling of fairness. All members of society could consider themselves in solidarity to the extent that they perceived the nation as a relatively homogeneous class of risks. This is decreasingly the case.15 Rosanvallon therefore grounds his call for a new social contract on his perception that the increased visibility and knowledge of inter-individual differences in

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risks – the ‘lifting of the veil of ignorance’ under which Rosanvallon asserts our universal social insurance previously functioned – has caused the crisis of the ‘insurantial welfare state’.16 An obvious objection to Rosanvallon’s analysis is that it transforms the metaphor of the ‘veil of ignorance’, devised by Rawls as a pure heuristic fiction allowing the counterfactual assessment of justice – Rawls never pretended that the original position nor the veil of ignorance have ever really existed – by taking the image of the veil of ignorance to describe what he asserts to be the real situation that motivated citizens to support a universal social security scheme. A second objection is that whereas the relative opacity of individual destinies certainly played an important role in inciting people to enter into a social contract ensuring basic security for all, other important elements contributed to the emergence of welfare states. In Europe, it is true that William Beveridge’s 1942 report on Social Insurance and Allied Services, founded the British welfare state on the assumption that uncertainty was a common feature of the human condition, and that belief in our common vulnerability to bad luck and unpredictable diseases was probably one of the elements at the source of our sense of solidarity, and of the institutionalisation of solidarity in social insurance. Indeed, insurance constitutes a kind of association allowing those who are party to it to agree among themselves upon the rule of justice which will be theirs. Insurance allows the development of an ideal of contractual justice where the conventional order would be substituted to the natural order: the ideal of a society where the share of each member in the burdens and benefits would be fixed according to the logic of a social contract that would not be merely virtual, but real. Thus, insurance promises a solution to bad luck, misery and insecurity (Ewald, 1996). This contrasts with the important moral and redemptive content that predated, from the beginning, the welfare state’s institutions in the United States, addressing the needs of those deserving mothers who have given men or children to the nation, or because it intended, through the compensation of past wrongs, to redeem the nation for injustices systematically inflicted upon members of historically oppressed minorities.17 Whether prior knowledge of individual genetic vulnerabilities would challenge the social contract establishing the welfare state is contingent on the assumptions one has regarding the motives and circumstances of the social agreement constitutive of the social contract. The Lockean social contract is clearly grounded on the self-interest of preservation against unidentified dangers: This [the insecurity of a state of nature] which, however free, is full of fears and continual dangers; and it is not without reason that he seeks out and is willing to join in society with others, who are already united,

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or have a mind to unite, for the mutual preservation of their lives, liberties and estates, which I call by the general name, property. (Locke, 1689) A consumerist model of the social contract assumes that the rules of justice established by the contract are always advantageous to the parties involved. In that model of justice as ‘mutual advantage’, the initial distribution of individual advantageous or disadvantageous ‘pre-existing conditions’ (in terms of wealth, health, etc.), when known, directly impacts on the agreements of justice, with the result that initial inequalities are preserved or even accentuated by the contract. The rules of justice established by such a contract consist in gratifying initial endowments, and the condition under which individuals and other agents have the full opportunity to exploit their potential, subject to constraints necessary to prevent damage to others, is conceived as just. Whether such a social contract based on self-interest and mutual advantage may result in valid rules of justice is as doubtful as the validity of any contract that would result from a bargaining process between unequals (Beckman, 2004). Moreover, even if one accepts the theory of legitimate initial acquisition and the Lockean conception that people have property rights in their own person, it would not mean that people are entitled to whatever they can achieve by exploiting those natural or innate endowments. Indeed, they own what those endowments provide them in terms of merit, advantages, benefits, etc. only as a consequence of the way in which those endowments are valued by society. Such a valuation is not immanent to the innate or original assets, it is contingent on others not having such desirable assets. One needs to acknowledge that talents are, as much as disabilities, socially constructed. When, rather than remaining in a consumerist vision of democracy, one considers the social contract and the rules of justice contained therein as resulting from ‘agent neutral’ deliberations about fairness, prior knowledge of interpersonal differences in genetic vulnerabilities does not result in those with ‘good genes’ opting out but in the surfacing of further justifications for compensating those who are unlucky enough to have been born with specific vulnerabilities. Is it not because the deliberative model of democracy grounded on citizenship and the agent-neutral value of the common good are both challenged today as a rational basis for any social contract, and because the only ground that one imagines as sufficiently strong to support the institution of a social contract is a consumerist model of democracy as an aggregation of individual self-interest that, on the one hand, the continued dismantlement of the welfare state is considered as almost inevitable and that, on the other hand, interpersonal differences in statistical health risks are so passionately investigated? The availability of predictive genetic information is not an independent

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cause of the ‘welfare state crisis’. Rather, ‘welfare pessimism’ may well be the reason that human genetics is so enthusiastically endorsed in contemporary society. The emergence of sophisticated genetic tests, perceived as providing definitive indications about individual future health on the one hand and the current attacks on welfare states on the other, are mutually productive of each other. If we have, as Rosanvallon suggested, left the ‘insurance society’, it is only to enter more surely into the ‘actuarial society’. According to Julie Cohen (Cohen, 2001), The use of personal information to sort and classify individuals is inextricably bound up with the fabric of our political economy . . . The conflation of information with certainty and projections with predictions is not confined to markets. The destruction of privacy is the necessary by-product of a particular set of beliefs about the predictive power of information that operates in both market and government spheres. Within this belief structure, nothing is random. Success in markets, politics, and policy-making can be predicted, and failure avoided, using the proper algorithms and the right inputs. In her view, the use of even partial or incomplete personal information or isolated facts about individuals to predict risks and minimise uncertainties is described as ‘the hallmark of the liberal state and its constituent economic and political markets’. Similarly, Perri6 (Perri6, 1998: 14–5) argued that: . . . what is distinctive about informational capitalism is that personal information has become the basic fuel on which modern business and government run and . . . the systematic accumulation, warehousing, processing, analysis, targeting, matching, manipulation and use of personal information is producing new forms of government and business. . . . More precisely, the current uncritical focus on individual and personal information for the prediction of risks and behaviours and the overstatement, for that purpose, of the predictive value of genetic information, impacts on judgments of inefficiency pronounced against the basic pillars of the welfare state. I believe the most urgent discussion to be precisely the following: upon what philosophical basis do we wish our social contract to be grounded? Do we want to live in a system based on citizenship and solidarity and on a conception of justice as being distributive of the surplus resulting from social cooperation? Or do we want to live in a system based on self-interest and mutuality where each individual would be allowed to benefit alone from the totality of the advantages resulting from his innate and acquired assets? A reciprocity approach is in line with neoliberal doctrine, reviving Hayek’s

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ideas according to which liberty is best conceived as ‘the condition of men in which coercion of some by others is reduced as much as possible in society’ (Hayek, 1960: 11). What liberty and justice require in such a conception is merely the restriction of State coercion to a minimum. Liberty is essentially conceived as economic liberty in a free enterprise system regulated by the market. The role of the State is marginal and limited to correcting market failures; state intervention is reduced to what the market cannot regulate at a reasonable cost. A reciprocity approach would consider that individuals should be entitled to benefit economically on the insurance market from their genetic assets, and to opt out of the social security pool for that reason. This position presumes a natural law conception of property that those with ‘good genes’ are legitimate owners of their natural advantages and have property rights over whatever beneficial outcomes may derive from their natural endowments. I would instead argue, in the line suggested by Skouteris (2004), that the substance of that which makes their good genes valuable is a certain configuration of the whole of society, in which others remain unlucky enough by comparison with those with ‘good genes’ to make their genetic advantage significant. The conception of individual liberty and justice as ‘reciprocity’ is at odds with other ideas of liberty and justice that are often referred to today, such as the capability approach (individual liberty should be measured as the real capacity to exercise liberty, without having one’s choices dictated by hardship, lack of education, bad health, etc.), or the deliberative democratic approach (in this approach, liberty culminates in participation in the choice of a mode of government, in the legislative process and in control of the administration). Whether society opts for one model or the other will impact on the algorithms used in society to classify individuals in categories of desert, merit, ability, and need. Those classifications in turn condition people’s access to benefits, rewards and opportunities. It will also determine the value of personal genetic information and the value of specific genetic assets in markets for social goods such as insurance and employment. This social and economic valorisation of genetic assets will in turn impact on the construction of people’s basic wishes in the domains of health, procreation, etc. Beyond the question of whether personal (genetic) information should really be treated as a commodity lies the more fundamental issue of whether commodification drives people to conceive themselves primarily as rational managers of their own human capital, to use the Foucauldian concept, with powerful hints to conform, and produce children who conform genetically to the economically most desirable traits of the time. The probability of independently contesting an all-encompassing market-oriented economic system extended to include personal genetic information, and potentially also personal genomes, would most likely decrease, as prevention, adaptation and resilience become the leading individual and collective values.18

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If commodifying genetic and other types of private information should be resisted, and if a certain amount of genetic opacity should be preferred to the market-efficient biological transparency of individual destinies, it is not because the market would degrade the incommensurable value of that information, nor because market mechanisms would necessarily decrease the level of individual autonomy by imposing compulsion or coercion. Rather it is because it would affect the typically human capacity to decide collectively about the type of social organisation in which one would like to live in the future, and the kind of governance according to which we wish to organise our social and economic relationships. GENETIC RESPONSIBILITY AND THE MORAL CHALLENGE TO THE WELFARE STATE

If, as is sometimes asserted, the costs of public health policies should be assumed by those who most endanger the aggregate public health, why restrict this reasoning to smoking, drinking, and other risky behaviours? Should it not be extended to those genetically predisposed to certain illnesses who do not adapt their lifestyles in order to minimise the risk of becoming ill, or to future parents who, despite knowing their risk of transmitting certain genetic illnesses to their prospective children, do not undertake pre-conception, preimplantation or pre-natal genetic testing and give birth to an ill child? Some would argue that smoking or drinking are purely voluntary behaviours, for which people are totally responsible, whilst being genetically susceptible to certain illnesses or being the carrier of a hereditary disease as the result of the genetic lottery is something the individuals concerned are not responsible for. The argument is not totally convincing however. Addictions to smoking (around 35 per cent of people are said to have a genetic variation that increases their chances of becoming addicted to nicotine) and drinking, for example, may be interrelated with one’s hereditary composition which renders an individual more or less vulnerable than others to addictive behaviours. Recent advances in genetics have also identified genetic roots for the efficiency or inefficiency of nicotine patches used by people willing to quit smoking.19 An additional paradox of the ‘genetic era’ is that governance increasingly relies on individual self-reliance, responsibility, and free and informed choice whilst the distinction between determinism and free will becomes increasingly unclear. Second scenario: genetic information and the increase of political support for social health insurance In a second scenario, fears of genetic discrimination would support, rather than undermine, the organisation of universal health insurance coverage in countries where no such system currently exists.

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Rothstein (1996: 224) noted that ‘[w]hen the focus [of policy discussions related to the Human Genome Project] is on the public and private framework for allocating access to healthcare, the effect of the Human Genome Project may be to intensify the scrutiny of an already precarious system and to increase the pressure to establish or reconfigure broad public policies’. Alper and Beckwith (1998: 205) also wrote that ‘the optimal solution to this dilemma is a single-payer universal healthcare system. In such a system, distinctions between genetic and non-genetic diseases and tests become totally unnecessary. Because everyone would already be insured, problems such as adverse selection in health insurance would not exist. Unfortunately in the present political climate the prospect of a universal healthcare system is unlikely’. Novas and Rose (2000: 510) reported that far from leading to systematic discrimination, genetics: . . . will reveal the superiority of a national, compulsory scheme of healthcare funded through taxation over all individual and group-based schemes: as it becomes possible to predict those who may have an increased likelihood to develop Alzheimer’s or Parkinson’s disease, as there are increased pressures to exclude those at high risk from cover by fiat or by the cost of purchase, as individuals at no or low risk begin to exit the private insurance system rather than subsidise those at high risk, the strategy of pooling the risk across a national population will begin to seem attractive to those who wish to be insured without a knowledge of what the future might hold for them, to governments seeking to maximise cover because of fears about the implications of any public safety-net system being overwhelmed by demands from those deemed uninsurable in the private sector, and to the insurers themselves, on the basis that there can be no individual risk classification without access to full predictive information. In their famous book on genetics and justice, Buchanan, Brock, Daniels and Wickler acknowledged that: [I]n the end, a comprehensive approach to prevent the relegation of segments of the population into a genetic ghetto may require universal health insurance, with vigorous enforcement (if coverage remains in the private insurance market) of regulations that punish covert underwriting. We favor these measures on their own merits. Those who oppose them bear a special responsibility to consider carefully whether alternatives exist that would successfully block the formation of the genetic ghetto, and, if not, whether they agree with our contention that the avoidance of exclusionary tendencies is of overriding concern in the wake of the genetic revolution. (Buchanan et al, 2001: 327)

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Considering the rationale of universal health insurance to consist less in income redistribution than in investment rationally accepted to confront the uncertainties inherent in contemporary society (Lujan and Moreno, 1996: 499), and, among these uncertainties, the potential that genetic testing abilities would further develop and allow accurate (or represented as accurate) identification of individual health, disability and early death risks, identifies us all as potentially vulnerable to being designated at risk by future genetic tests and therefore excluded from private insurance. As suggested previously, it may be in the common interest of all citizens, in such a perspective, to live in a system that allows universal access to basic health services. In countries currently without universal healthcare insurance coverage, however, a kind of competition exists between the organisation of a nationwide social security system and specific genetic privacy and non-discrimination legislation.

B. The heuristic bias towards prophylactic policy The first general assumption about the future I have tried to deconstruct in previous pages concerned the seemingly unavoidable dismantling of the welfare states. The second presupposition I now wish to address is the common representation of the future as an era of full genetic transparency, that is, an era where people, because of generalised genetic testing in the population, will have full knowledge of the details of their own genetic risks. Genetic non-discrimination and genetic privacy laws are called ‘prophylactic’ in comparison with the usually more ‘evolutionist’ development of privacy and non-discrimination policies which usually takes place following documented systematic invasions of privacy and a sufficient accumulation of discrimination cases, rather than in anticipation of such invasions. Civil law has a more naturally prophylactic attitude, whilst the development of common law usually involves a certain number of court decisions before legislation is enacted. Changes in the legal metabolism in this regard are more noticeable in common law than in civil law. Regarding genetic discrimination in insurance and employment, the common law’s traditional ‘evolutionary framework’20 in fact tends to be replaced by civil law-like prophylactic legislation21 and regulation. The prophylactic legal attitude corresponds to a general feeling that one is today on the actual point of gaining comprehensive and objective knowledge of individual genetic destinies through advanced genetic testing and genetic screening techniques. That impression suggests several things. It suggests a form of genetic determinism, or a return to preformationist conceptions, and confidence in the fact that, provided genetic science progresses sufficiently, it will supply genetic information that will indeed be an accurate and reliable predictor of individual risks and individual behaviours. This kind of genetic deterministic thought fits perfectly with a more general

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commonly held set of beliefs, powerfully described by legal scholars such as Julie Cohen (Cohen, 2001: 2028), about the privileged predictive power assigned to personal information that operates in both market and government spheres. Those discourses of genetic enlightenment, as already pointed out in the first part of this essay, illustrate what Foucault named the new spaces of ‘visibility’ and ‘utterability’. They operate as a new intellectual discipline that commands us to take at face value anything that emanates from genetic research, and to ignore epigenetic determinants of risks, the operation of which is either poorly understood or ignored because they are not easily quantifiable.22 Moreover, as already mentioned, it has inspired an increasingly common use of the Rawlsian veil of ignorance metaphor among scholars in the field.23 The widespread use of the veil of ignorance metaphor in discussions of genetic privacy and genetic discrimination on the markets for social goods such as insurance and employment seemingly implies that we are presently in a sort of original position,24 characterised by the opacity of individual destinies. It also suggests that we are on the threshold of a ‘genetic information era’ where individuals armed with information about their own risks will accordingly revise their preferences for both basic rules of justice and their private purchase of insurance. The general forecast is that accurate genetic tests will be developed for a growing range of common conditions, and will be used by an increasingly wide proportion of the population. Prima facie, it seems unavoidable that the future will bring us a society within which all potentially useful genetic information is freely available and actually applied. In principle, every member of this society will be able to foretell his individual fate from reading his genes, and to adapt his personal life-plan in accordance with such predictive knowledge. (Ten Have, 2001) Suggesting that one is today on the cusp of piercing the veil of genetic ignorance also implies that it is high time to renegotiate our social contract for a post-genomic era when genetic causes of inequalities in health and capabilities will become visible. The announced biological transparency of genetic destinies presumes that most, if not all, people would wish to be tested and learn about the risks encoded in their individual genomes. This assumes either (1) that the overwhelming majority of individuals would value genetic knowledge more than genetic ignorance even when no preventative or therapeutic strategy exists to prevent or cure the genetically predictable disease, or (2) that preventative and curative strategies will soon be developed that will render genetic information highly valuable for this purpose. This last option is not the most plausible: despite the current hype over biotechnology, and the high expectations created

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by biotech innovators and their sponsors that investments in genetic research have the potential to yield significant returns in a defined time-scale, . . . it is becoming increasingly clear that, because of the complexity of the human body, understanding medical science does not necessarily lead to new medicines. The biotech revolution is based on a reductionist, genetic model of disease which is looking more and more out of date as scientists understand the environmental, lifestyle and social origins of disease. Unrealistic expectations are dangerous. (Martin and Nightingale, 2004)25 Whether individuals will gain sophisticated knowledge of their own health risks remains uncertain. Whether the future will indeed look like the genetic information society that genetic mythology and ideologies of neoliberalism promise is not as obvious as is often presumed. We have seen that, notwithstanding the high expectations raised by genetic research, promises that genetic testing will soon allow accurate detection of individual risks for most diseases should not be taken at face value. However, even if this were the case, genetic testing has not yet become current practice today. This is probably not exclusively due to its lack of accuracy or predictive value nor its expense. The more likely reason is that people have more urgent preoccupations in life than acquiring knowledge of their risk to develop a particular disease in an uncertain future, and have more subjectively valued goods to dedicate their resources to. Absent direct medical benefits, it is not clear whether or why people would or should undergo large-scale genetic testing, despite sustained marketing efforts of interested private businesses and despite the idea that information always enhances liberty and autonomy. Moreover, whether access to genetic testing will indeed be widespread in the population will arguably depend upon the inclusion of genetic services in the benefit package of health insurance schemes. The presupposition of generalised genetic testing and the corresponding idea that people will be increasingly aware of their own genetic risks is thus contingent upon a wider range of conditions than a simple increase in the number of genetic tests, their improved accuracy and decreased costs. In any case, predictions about the ongoing privatisation of social insurance and the generalisation of genetic testing do not provide a sufficiently reliable background for the drafting of specific regulatory measures now in view of a predicted future. A major problem with the prophylactic attitude is that it does not take into account the feedback or performative effect that both technology and regulation (or deregulation) have on representations of the future. Legislating as if public social insurance had already been totally privatised, and as if people had already gained complete information about their own genetic risks, may result in a democratically contestable impact on the shape of the future. Both regulation and deregulation, if based on specific projections

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about the future, are productive of that future. Grounding (de)regulation on anticipated but uncertain facts is equivalent to giving the status of real facts to mere suppositions. Regulating (or deregulating) under present conditions on the basis of uncertain projections about the future may be an acceptable prophylactic strategy only in circumstances where the adverse consequences of not doing so are clearly and unambiguously characterised as socially, culturally or otherwise unbearable, and when no other possibility exists of preventing those outcomes. Considering another picture of the future and – rather than prophesying the advent of a genetic information era where individuals would be able to see their own risks in their genes – acknowledging the undeterminability of the future outcomes of genetic research, one may be inclined to consider compulsory social security schemes as better equipped to deal with biotechnological uncertainty than private insurance schemes. Indeed, underwriting, that is, the precise discrimination of risks in private insurance, requires that the information used by insurers to assess risks be actuarially relevant. Yet, with the exception of some very rare diseases with special patterns of inheritance, the actuarial relevance of genetic information is today far from established. Private insurers are not equipped to deal with the type of ‘double’ uncertainty that characterises the potentiality of genetic information’s future actuarial relevance. Considering private insurance companies as able to deal with genetic information would only be possible on the condition of minimising the complexity of the interpretative work needed in order to infer accurate risk information from genetic test results. On the contrary, universal compulsory public health insurance schemes, because they do not rely on individual underwriting, are arguably better equipped than private insurance companies to deal with the kind of uncertainty involved in the ‘post-genomic era’.

Notes 1 See Rothstein (2004b: 236): ‘The small amount of empirical evidence available suggests that genetic testing is currently available to only a small segment of the population . . ., and that there is little genetic discrimination in health insurance . . . It obviously cannot be determined whether discrimination would exist at some time if these laws had not been enacted. Despite lack of a substantial number of documented cases of genetic discrimination in health insurance, it has been relatively easy to forge a political consensus on state legislatures to enact laws offering modest protections to a limited group of individuals without confronting the more contentious, but inextricable, issue of access to health care. As narrowly defined, genetic discrimination in health insurance was an easy target.’ 2 For an argument that the welfare state is here to stay, because it is more efficient than privatised systems, see Barr (2001). See also Abraham (1996) and McCluskey (2003: 875–6). For a nuanced and rather optimistic account of the future of European Welfare States, see also Ferrera et al (2006). For an argument that privatisation is not necessarily inimical to participatory citizenship, see Lobel (2005).

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3 See for example (Kaplan, 2004: 53) about the failure of pension policy in the Enron case, explaining that although the essential premise of social security privatisation was that individuals should control their own retirement assets, given the concentration of the 401(k) plans in the employer’s stock, employers were in fact deprived from their assets, which disappeared with the firm. See also Jurik (2004) and Monahan (2005): ‘. . . the current ownership society reform effort, embodied by the blessing of consumer-driven health plans, has both too quickly accepted that personal responsibility and market principles can fix healthcare ills and failed to allow the market it tries to create the freedom it needs to innovate. We are left with a compromise that will leave few happy. It is an attempt at healthcare reform that benefits those already benefiting under the current system, while placing the less fortunate members of our society at increased risk’. More generally, see McCluskey (2003). For a sceptical view about economic studies of the impact of welfare state on growth, see Atkinson (1995: 198): a ‘study of the aggregate relationship between economic performance and the size of the Welfare State is unlikely to yield conclusive evidence’. 4 See McCluskey (2003): ‘Neoliberalism’ may refer to a theory that advocates the primacy of the ‘market’ over government regulation and/or as an ideology applied to international development policy such as the International Monetary Fund imposing ‘structural adjustment’ programmes. A common feature of neoliberal policies implemented at domestic or international levels is that they indeed tend to perceive redistribution and social policies as inimical to efficiency. 5 Current discourses on the ‘activation’ of welfare recipients, representing employment as essential for the person’s dignity (although there are obviously not enough jobs for all) recall Tocqueville’s comments on the English New Poor Law of 1834, in his ‘Memoir on Pauperism’ (De Tocqueville, 2006 [1835]), where he wrote that whereas most rights testify to the individual’s superiority, the right to relief is a legal, public testimony to his inferiority. Relief, according to Tocqueville, was ‘a notarized manifestation of misery, of weakness, of misconduct’. 6 For a critique of the conservative premises grounding the welfare reform consensus in the United States, see Roberts (1995): ‘What would an agenda that refused to compromise with conservatives look like? It would abolish the stratification based on notions of “earned” entitlements and “undeserved” handouts. It would place individual welfare programs in the larger context of the entire welfare state and its role in fostering citizenship.’ 7 See Nussbaum (2002: 44): ‘the most ubiquitous and long-lasting conception of the woman, in virtually all countries and traditions of the world, is as giver of care: home-maker, mother, wife, tenderer of the needs of the elderly – in general a supporter of the needs and ends of others. Often this conception of the woman sees her as mere means to the ends of others, rather than as a source of entitlements in her own right, a being who ought to be treated as an end in herself. Thus women’s caregiving function has often been understood to remove them from candidacy for full citizenship and form many aspects of employment, especially wage-earning work outside the home. Even when women are legally entitled to work and participate in citizenship, their heavy responsibilities in the home often make it difficult for them to do so. . . . it is as if society, in trying to get ahead, allows some people to run in the race without any handicap. Others have to run carrying other people (children, the sick, the elderly). Obviously enough, those in the second group will lag behind from the point of view of their personal goals and their contribution to society outside the home, even though the work they are doing is obviously essential to the survival and well-being of society’. See also McCluskey (2000), Fineman (2000, 2005) and Eichner (2005).

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8 Charter of Fundamental Rights of the European Union (2000/C 364/01): Article 34 (Social security and social assistance) (1) The Union recognises and respects the entitlement to social security benefits and social services providing protection in cases such as maternity, illness, industrial accidents, dependency or old age, and in the case of loss of employment, in accordance with the rules laid down by Community law and national laws and practices. (2) Everyone residing and moving legally within the European Union is entitled to social security benefits and social advantages in accordance with Community law and national laws and practices. (3) In order to combat social exclusion and poverty, the Union recognises and respects the right to social and housing assistance so as to ensure a decent existence for all those who lack sufficient resources, in accordance with the rules laid down by Community law and national laws and practices. Under Article 35 (‘Health care’) everyone has the right of access to preventive health care and the right to benefit from medical treatment under the conditions established by national laws and practices. A high level of human health protection shall be ensured in the definition and implementation of all Union policies and activities. Olivier De Schutter and Simon Deakin recently summarised the tension between the increasing tendency, within the European Union, to implement the European social model, by including fundamental social rights in the Charter of Fundamental Rights that are identified as shared values on the one hand, and open methods of coordination presented as value-free and purely procedural on the other hand (De Schutter and Deakin, 2005): ‘[W]e have, on the one hand, shared values, which define the specificity of the European social model and which the Charter of Fundamental Rights in part sought to encapsulate by identifying a list of fundamental social rights. The European Social Agenda, approved by the Nice European Council meeting of December 2000 which also proclaimed the Charter of Fundamental Rights, exemplifies the current tendency to ground social policies in particular on a rights-based discourse, whereby a dual objective is assigned to social policy: not only is it seen as a productive factor; it also must be “more effective in the pursuit of its specific aims concerning the protection of individuals”. On the other hand, we have a set of processes (the OMC and related forms) which are presented as open and deliberative, and as encouraging a search for the best practices within Europe, rather than as simply implementing a set of common values whose meaning and content are regarded as fixed in advance.’ 9 The Second Bill of Rights proposed in 1943 by Franklin D Roosevelt declared freedom from want to be one of four essential liberties necessary for human security. Freedom from want included ‘the right to adequate medical care and the opportunity to achieve and enjoy good health’. See Rich (2001) and Carmalt and Zaidi (2004). 10 UDHR, UNGA res. 217A (III), UN Doc A/810 at 71 (1948): ‘Article 25: (1) Everyone has the right to a standard of living adequate for the health and wellbeing of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control. (2) Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection.’ 11 The International Covenant on Economic, Social, and Cultural Rights (ICESCR UNGA res. 2200A (XXI) of 16 December 1966) has been signed but not ratified by the United States. Its Article 12 stipulates that: ‘(1) The States Parties to the present Covenant recognise the right of everyone to the enjoyment of the highest attainable standard of physical and mental health. (2) The steps to be taken by the

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States Parties to the present Covenant to achieve the full realisation of this right shall include those necessary for: (a) Provision for the reduction of the stillbirthrate and of infant mortality and for the healthy development of the child; (b) The improvement of all aspects of environmental and industrial hygiene; (c) The prevention, treatment and control of epidemic, endemic, occupational and other diseases; (d) The creation of conditions that would assure medical services and medical attention to all in the event of sickness.’ Rich (2001): ‘Despite the New Deal and Great Society Programs, this contract has remained tenuous and problematic in the United States. In contrast, for much of the post-war period in Europe, the role of the State in guaranteeing the social welfare of citizens, from housing to jobs to health care, has received much more consistent and broad support.’ See for example the principle developed by Ronald Dworkin of the virtual insurance people would have signed for, designating the principles of justice according to people’s willingness to pay, behind a veil of ignorance to ensure themselves against the negative consequences for them of being in certain situations (Dworkin, 2002). See Rosanvallon (1996): ‘S’il est facile et de bon ton, alors que cela reste actuellement purement théorique, de s’inquiéter des conséquences éthiques des progrès de la génétique quant à l’assurance privée, on peut redouter qu’ils ne restent pas sans effet sur l’assurance sociale et l’architecture philosophique de nos systèmes de sécurité sociale. On peut même penser que les conséquences à attendre de la médecine prédictive seront beaucoup plus graves en ces domaines publics que pour l’assurance privée dans la mesure où on lui permet de fonctionner selon ses règles. John Rawls, auteur d’une célèbre Théorie de la justice et reconnu comme le philosophe de nos démocraties sociales, explique que notre notion de la justice, fondée sur l’égalité, ne se comprend qu’à partir d’un principe d’ignorance radicale quant à nos destins individuels. C’est ce que la médecine prédictive vient bouleverser. . . elle va nous obliger à repenser la solidarité et le contrat social en fonction d’un savoir des inégalités’. See Rosanvallon (1995: 54). See also Handler (2001). ‘L’État-providence, on l’a déjà souligné, fonctionnait sous voile d’ignorance. Le principe assuranciel sur lequel il s’appuyait présupposait que les individus étaient égaux devant les différents risques sociaux susceptibles d’affecter l’existence. L’opacité du social était ainsi une condition implicite du sentiment d’équité. Tous les membres de la société pouvaient se considérer comme solidaires dans la mesure où ils percevaient la nation comme une classe de risques relativement homogène. C’est de moins en moins le cas. On a déjà insisté à ce propos sur les conséquences des progrès de la médecine génétique. Mais le phénomène est général: la meilleure connaissance que la société a de ses différences tend à modifier très sensiblement la perception du juste et de l’injuste’ (Rosanvallon, 1995: 54). ‘La connaissance accrue des différences entre individus et entre groupes met à l’épreuve les fondements du contrat social. Si les hommes sont naturellement solidaires face à un destin qu’ils ignorent, ceux qui savent qu’ils seront épargnés par telle ou telle grave maladie très coûteuse accepteront-ils de continuer à payer les mêmes cotisations d’assurance-maladie que ceux qui sont génétiquement condamnés à développer cette affection? Dans un univers opaque, la justie a essentiellement une dimension procédurale: elle se confond avec la recherche d’une règle universelle. Notre connaissance accrue des inégalités et des différences fait que cette défiition de la justice devient problématique’ (Rosanvallon, 1996). See Logue (2004). Those values also define ‘normopathology’, as has been argued earlier.

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19 BioNews No 287, 6 December 2004, ‘A UK company has launched a new DNA test that it claims can help smokers kick the habit, by tailoring treatment to their genetic make-up. The “NicoTest”, developed by Oxford University-based firm G-Nostics, identifies people who are most likely to benefit from nicotine replacement therapies (NRTs). The test is currently only available via the company’s website, which also offers advice on giving up smoking.’ See http://news.bbc.co.uk/ 1/hi/health/4061137. 20 The comparison of American and European constitutional adjudication processes further explains why American legislation is more evolutionist than the preventive European legislation (Rosenfeld, 2004). See also Epstein (2002c: 21–2): ‘The general presumption against state action means that the legal system should rely generally on ex post sanctions, unless and until it can be clearly established that there is some imminent peril that calls for an anticipatory response.’ 21 See Parlett (2003). The terms prophylactic legislation are usually used to describe legislation by the Congress to prohibit facially constitutional conduct in order to prevent and deter unconstitutional conduct. It is not used in this sense here. 22 ‘Will the light refracted through the prism of genomic knowledge illuminate straightforward explanations of disease etiology, offering simple solutions to health inequalities? Or are there consequences, currently hidden in the shadows, that require our attention?’ (Lee et al, 2001). 23 Buchanan et al (2001: 326): ‘The burgeoning tide of knowledge about a person’s genes and the bearing of these genes on health and other states is a case in point. The genetic veil of ignorance is about to be lifted.’ 24 ‘. . . the original position is, one might say, the appropriate initial status quo, and thus the fundamental agreements reached in it are fair. This explains the propriety of the name justice as fairness: it conveys the idea that the principles of justice are agreed to in an initial situation that is fair’ (Rawls, 1971: 12). 25 The mutual reinforcement of expectations and investments is particularly clear in the field of stem cell research: ‘Hopes and expectations are designed to attract political and financial support for the biotech industry and the research labs involved in it. The recent creation of California’s new US$3 billion stem cell institute is emblematic in this regard: California taxpayers have been asked to vote in favor of publicly funding embryonic stem cell research on the idea that cures would quickly be developed, a prospect overly optimistic as most scientists say it will take years, and possibly decades, before embryonic stem cell treatments are proven and made widely available. Arthur Caplan, the most widely-quoted bioethicist in the US media, and a supporter of embryo research, acknowledges that nothing will happen quickly. No one knows if you can control embryonic stem cells. It is like trying to argue right after the Orville and Wilbur Wright flight whether we could have a Mars mission’ (BioEdge, 3 May 2005, Issue 157).

Chapter 7

A critical assessment of economic and actuarial perspectives on genetics and insurance

A. Assessing the claims of contractual freedom against legal prohibitions of genetic differentiation in insurance Privacy versus property in genetic information The question whether technological progress restricts the scope of legitimate governmental intervention is not really novel, nor is the impact of technology on the scope of legal intervention an issue specific to human genetics. The claim has been made, especially by scholars presuming that the unique goal of legislation is to facilitate welfare-enhancing transactions, that technological advances, as they have the potential to prevent market failures, also decrease transaction costs, increase the safety and efficiency of free exchanges, enhance protection of consumer interests and decrease the need for state policy in their operative domains. In that view, the appropriateness of state policy is inversely proportional to the state of technology, as advances in technology provide good arguments in favour of a laissez-faire market policy (Foldvary and Klein, 2002). Moreover, when technology prevents market failures, it is argued, property rights are much more efficient than previous natural state monopolies. A further argument sustaining that technology reduces the scope of legitimate governmental intervention states that technology, complicating the economic system by accelerating changes and multiplying connections between activities, makes the notion that regulators could know and manipulate the system less credible. The same thesis is often defended in the information society context where a property rights approach to information, along with technical protections (cryptography, etc.) against intrusion, is presented as the only effective way to protect consumer interests in an increasingly complex information society, characterised by a multiplicity of inter-related networks. It is for example sometimes argued that consumer protection laws are becoming obsolete as we enter the ‘age of information’ economy.1 Consumers are now able to acquire for themselves information about risks, and may accordingly adapt their consumption decisions.

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A common trait of current laissez-faire advocacy is the quasi-religious power it attributes to ‘information’ in our ‘knowledge society’ and our ‘information economy’ (information is believed to make people autonomous – a belief that has been challenged earlier in this volume), and its strategic ignorance of the cultural, social and material ‘bases’ of truly autonomous choices.2 As far as human genetics is concerned, Parlett (2003), for example, argued that: The method of obtaining genetic information is rooted in the present day and near future. In a rapidly expanding scientific universe, it is possible to envisage that individuals in advanced western nations will have access to multiplex genetic tests that will provide reliable information and that will give individuals information about genetic susceptibilities. This brave new world diminishes the regulatory ability of the laws as individuals become profligate with the information. As has been observed earlier with regard to the protection of donors’ interests in the context of genetic research, it is increasingly argued that protection of citizens’ interests in the privacy of their personal information is best provided by granting them genuine property rights over their information and data, rather than by enforcing privacy rules. The creation of a ‘market for private information’ and the endowment of individuals with negotiable and alienable property rights over their information are sometimes presented as the only ways to preserve individual interests efficiently. The idea, applied to our context of genetic information flows in socioeconomic life, is that if a prospective or actual policy-holder or employee consents to disclosing genetic information to an insurer or employer, the law should not prohibit such agreed disclosure. The aim of the right to privacy, in such a view, is not to maintain the ‘opacity’ of the private sphere of individuals, to keep personal or intimate information outside the marketplace, but to empower individuals with the choice to disclose or not to disclose personal information in the socio-economic context, and to retrieve specific advantages would that they chose disclosure over privacy. Is there still something specific about the right to privacy that distinguishes it from property rights, or has privacy become a commodity, an ‘object’ of transferable property? As for the decrease in the privacy of policy-holders that would ensue from deregulated use of genetic information by insurers, one must acknowledge that privacy is not universally considered as a final value trumping competing principles. The autonomy of the concept of privacy, its distinctiveness from other values which privacy may help to achieve (in particular concepts like equality, dignity or honour) . . . and, consequently, its utility, have been and are increasingly challenged, especially in the United States. Some radical commentators even defend the idea that the rhetoric of privacy should be

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abandoned altogether.3 The argument is that in cases where the law (for example) suggests that a right to privacy has been violated, one may always find some other interest or value involved in the case. The real interests protected through privacy are said to have nothing to do with privacy. Therefore, rather than using the privacy rhetoric, one should look for the real interests protected. In doing so, they argue, one will see that privacy as such is never protected. To the extent that there is something distinct about claims for privacy, one should note that they are either indications of hypersensitivity or an unjustified wish to manipulate others and act as a handmaiden to fraud (Epstein, 2002a, Gavison, 1984). Privacy is indeed conceived – mostly by its adversaries – as having merely strategic value in the satisfaction of individual interests. Utilitarianism, in rejecting individual autonomy as an appropriate focus for moral concern, radically undermines any autonomy-based vindication of privacy rights (Roberts, 2001: 58). The most radical law and economics theories, prolonging utilitarian theories, accordingly argue against any form of regulation that restricts access to personal information by market agents. ‘People should not – on economic grounds, in any event – have a right to conceal material facts about themselves’, Posner (1978: 399) argues. Allowing people to conceal personal information relating to things such as ‘arrest records, health, credit-worthiness, marital status, sexual proclivities’ would likely result in people concealing discreditable facts about themselves with the aim of selling their services or involvement at an improperly high price.4 Privacy allows individuals to manipulate access to personal information and therefore the world around them, thereby increasing transaction costs between bargaining parties and creating harmful information asymmetries. Individuals, in that view, are essentially bad persons who ‘profess high standards of behaviour in order to induce others to engage in social or business dealings with them from which they derive an advantage but at the same time they conceal some of the facts that these acquaintances would find useful in forming an accurate picture of their character’.5 In its ‘law and economics’ version, the value of privacy is essentially instrumental and functions as a form of ‘input into the production of income or some other broad measure of utility or welfare’. Accordingly, privacy should be protected only when it increases wealth and social utility but should be assigned away from individuals when it does not. The method developed by Richard Posner for deciding about this assignment of informational privacy consists of a twofold test. The first test consists of an inquiry into whether (1) the personal information is ‘a by-product of socially productive activity’, and (2) ‘its compelled disclosure would impair the incentives to engage in that activity’. Posner’s conclusion is that while corporate data and other trade secrets should generally be protected (does that mean that the employee loses control over intellectual property they create at work?6), most facts about people should not. Indeed, he writes: ‘Secrecy is an important method of appropriating social benefits to the entrepreneur who creates them while in private life it is more likely to conceal

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discreditable facts’ (Posner, 1978). The theory may undoubtedly well increase the power asymmetry between, for example, workers and employers, but it is a common criticism addressed against utilitarianism that it disregards the widely shared taste for fairness.7 Richard Epstein, defining his own view in these cases as remaining that of an unrepentant libertarian, viewing employees as having no legitimate interest in the protection of their genetic information against the employer, argues that: The employer can ask any question of the prospective employee that she wants. The applicant may refuse to answer. In the end, the two can decide whether the information is more valuable when kept private or when shared. In many cases, the personal life of an employee will be regarded as information to which the employer has no right. If so, it will not be because of some high principle, but because of the joint recognition that the information is worth less to the employer than its concealment is worth for the employee. Let the employee receive comprehensive benefits from the employer, such as health care, and the calculus may well shift radically: now it does matter whether the employee drinks, smokes, or exercises on a regular basis. If that information is relevant to an insurer in setting risk, then it is relevant to the employer who has to foot the bill for the long-term health plan. (Epstein, 2000: 22) For Richard Epstein (Epstein, 1994a), and those who take their inspiration from him,8 privacy of genetic information in the workplace should no longer be granted any protection. The presupposition made is that the employer is entitled to know anything about the employee in which it has an interest. Yet such a presupposition, granting employers prima facie entitlements to any private genetic information about their employees, is contradicted by social conventions and certain normative values placing much of the personal life of employees, including facts that may impact on job performance, such as the kind of lifestyle employees have after work hours and during the weekends, beyond the legitimate concern of employers (Kim, 2002). Those debates attest to a fundamental ambiguity inherent in human rights discourses, an ambivalence between two conceptions of individual liberty, the roots of which have been located in the Anglo-American and the European traditions respectively. The ‘right to free contract’ and the ‘right to privacy’ in the American constitutional tradition In the United States, the ‘right to free contract’, from 1905 until 1937, prevented federal and state laws from regulating economic relationships so as to

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improve working conditions or protect consumers. The constitutional status of the ‘right to free contract’ was first ‘discovered’ by the Supreme Court in its infamous decision in Lochner v New York,9 holding that this right was implicit in the due process clause of the Fourteenth Amendment (‘no person shall . . . be deprived of life, liberty, or property, without due process of law’). Following its appraisal that ‘[W]here the protection of the Federal Constitution is sought, the question necessarily arises: Is this a fair, reasonable, and appropriate exercise of the police power of the state, or is it an unreasonable, unnecessary, and arbitrary interference with the right of the individual to his personal liberty, or to enter into those contracts in relation to labor which may seem to him appropriate or necessary for the support of himself and his family?’, the court struck down a New York law that limited the number of hours a baker could work each week. By a five-to-four margin, the Supreme Court rejected the argument that the law was necessary to protect the health of bakers, calling it an ‘unreasonable, unnecessary and arbitrary interference with the right and liberty of the individual to contract’. West Coast Hotel Co v Parrish (1937)10 marked the end of the Lochner era with the Supreme Court exhibiting increasing deference towards state regulation of economic matters. The case involved a Washington State statute that established a minimum wage for women. The constitutionality of the statute was challenged by a hotel owner, relying on Lochner v New York and a series of subsequent cases such as Adkins v Children’s Hospital,11 which had invalidated a similar minimum wage law in the District of Columbia. But the Supreme Court was no longer persuaded by the rationale underlying Lochner, and ruled that the Washington statute was a reasonable exercise of the state’s police powers. Highlighting the unequal bargaining power of employers and employees, as well as the oppression and exploitation of female workers rather than the free-market principle of laissez-faire, the Supreme Court said, in West Coast Hotel Co v Parrish, that freedom of contract is not an absolute and uncontrollable liberty. In United States v Carolene Products Co,12 the Supreme Court even held that courts must sustain state and federal laws that regulate economic interests, unless there is no rational basis to support them. By contrast the Court announced that legislation that ‘appears on its face to be within a specific prohibition of the Constitution, . . . restricts . . . political processes . . . [or is] prejudic[ial] against discrete and insular minorities’ would be subject to stricter scrutiny. The later constitutional history of the American right of privacy attests to the growth of the principle that individuals are entitled, as a matter of fundamental right, to a ‘private sphere’ of life in which governments cannot interfere with their choices. Yet, the scope of this right to privacy, its content, has been and continues to be uncertain. A first branch of the right to privacy is understood as a right to make autonomous choices in existential domains of life. This first branch, however, has remained mostly limited to the domain of sexual life and reproduction.

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In Griswold v Connecticut,13 a case usually taken to be the starting point of the trajectory of the American constitutional right to privacy, the Supreme Court voided a state criminal law prohibiting the use or distribution of any contraceptive drug or instrument to married persons on the ground that a protection from state intrusion into marital privacy was a constitutional right, one that was a ‘penumbra’ emanating from the specific guarantees of the constitution. The nature and scope of this ‘penumbral’ right to privacy remained uncertain though. Judge Douglas, who spoke for the Court, appeared concerned not only by the intrusion by the police into the private marital bedroom necessary to investigate breaches of the prohibition, but also by the special relationship that constitutes marriage, which should not be intruded into or controlled by the state. As a result of this dual justification, conservative interpreters of Griswold perceive the decision as protecting the institution of marriage, while other commentators consider that concerns with policy access to the marital bedroom are peripheral to the Court’s central concern: guaranteeing autonomy with respect to intimate decisions. (See Inness, 1992: 24, note 3). These alternative rationales make it unclear whether the Court’s intention was to protect the institution of marriage per se or whether it intended to protect marriage, not for its own sake, but because this special relationship provides individuals with a context that fosters autonomous choices on fundamental and existential issues of life such as the choice about whether to conceive a child or not (Fagelson, 2002). Despite the uncertainties of interpretations, this ‘penumbral’ right of privacy has been one of the main foundations of the later Supreme Court decision in Roe v Wade (1973)14 to overturn state abortion statutes. Yet, the scope and constitutional status of the right to privacy is still very controversial. In order to define the scope of the fundamental right of privacy, the Supreme Court purported to abide by principles reflecting the ‘traditions and (collective) conscience of our people’,15 ‘deeply rooted in [the] Nation’s history and tradition’,16 ‘so rooted [there] as to be ranked as fundamental’.17 The gradual extension of the right to sexual privacy was put to an end in 1986 with Bowers v Hardwick,18 where, going even further, the Supreme Court implemented the majoritarian prejudices of the day against homosexuality and upheld a criminal law against consensual homosexual acts. The Court’s infamous decision in Bowers v Hardwick has been widely criticised as homophobic and regressive. The Report of the British Departmental Committee on Homosexual Offences and Prostitution (better known as the Wolfenden report) (Wolfenden, 1957), had in 1957 already recommended that ‘homosexual behavior between consenting adults in private should no longer be a criminal offence’, that ‘homosexuality cannot legitimately be regarded as a disease, because in many cases it is the only symptom and is compatible with full mental health in other respects’, and that: [T]he law’s function is to preserve public order and decency, to protect

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the citizen from what is offensive or injurious, and to provide sufficient safeguards against exploitation and corruption of others . . . It is not . . . the function of the law to intervene in the private life of citizens, or to seek to enforce any particular pattern of behaviour. But the United States Supreme Court seemed more influenced by Lord Devlin’s response to the Wolfenden report in his book on The Enforcement of Morals (Devlin, 1996 [1965]), in which he argued that a society is a ‘community of ideas’ including ideas about morality, and that ‘without shared ideas on politics, morals, and ethics no society can exist’. Because ‘recognised morality’ is necessary to society, Devlin further argued, ‘then society may use the law to preserve morality in the same way as it uses it to safeguard anything else that is essential to its existence’. Legislation against immorality, in Devlin’s view, is not only permissible but necessary to prevent the disintegration of society. Lord Devlin’s writings have been influential in the United States. Beyond the classical liberal limitation to legal intervention provided by the ‘harm principle’ popularised by John Stuart Mill,19 the Supreme Court, in order to uphold laws forbidding certain private acts that harm nobody, rather than referring to an essentialist concept of human dignity as European human rights law is predisposed to, prefers to refer itself to consequentialist views in terms of social cohesion or in terms of aggregate utility (utilitarianism). All this is an echo of Lord Patrick Devlin’s writings according to which the constitutive morality is considered as a cultural artefact that the law may legitimately protect, not because of the contents or the ‘objective truth’ of those moral beliefs, but because it is strongly believed by the constitutive morality of a society. Devlin’s account of the legitimacy of legislation is strongly conventionalist, and opposite to the universalist conception of human rights based on notions of human dignity perfectly accepted in Europe, but which would appear suspect in the United States where essentialist concepts are easily perceived as a conservative weapon aimed at moralising and controlling lots of human activities. Fortunately, in Lawrence v Texas20 in 2003, the Supreme Court, acknowledging a shift in public opinion about same-sex relationships, reversed Bowers v Hardwick. Notwithstanding the relative arbitrariness of its scope, what is certain about the right to a sphere of decisional autonomy called the private life (or privacy) is its ‘negative’ character. The constitutional liberty to make certain existential choices, such as the right for a couple to avoid pregnancy, for a woman to have an abortion, etc. does not encompass the right to obtain any kind of assistance from the state in order to implement one’s choices if one is, for financial or other reasons, lacking the means to afford one’s choices. This has been discussed earlier in relation to abortion funding issues in Mahler v Roe,22 Beal v Doe,23 Poelker v Doe,24 and Harris v McRae25. This is not really surprising: ‘negativity’ of fundamental rights echoes the typical American understanding of those rights as protecting individuals in their independence from government.

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The same is true with regard to data privacy, the constitutional character of which is even more uncertain. The few federal laws about data privacy are always conceived as protections of individuals against Government. The Privacy Act of 1974 provides for disclosure of, and personal access to, all federal records containing personal information, regulates their transfer to others, and allows for legal remedies in cases of their misuse under the law. The Financial Privacy Act (1978) limits federal access to financial records but places few restrictions on access by states, businesses and others. Limits exist on the federal government’s ability to intercept voice and data communications; these are established by law and related to the Constitution’s protection against unreasonable searches. No guarantee exists for most other information, despite the fact that computer and telecommunications advances have made credit, medical and other data a readily available, highly marketable commodity. Although the European Union severely limited the buying and selling of personal data,26 these practices have been generally allowed under United States law. Absent specific statutes, American constitutional rights provide no protection against violations that may arise between private parties. American constitutional rights do not have horizontal effect.27 These characters of alienability and negativity of American fundamental rights set them apart from the conception of fundamental rights in the European tradition. Liberties are conceived, in the American context, as a continual and radical challenge to, and questioning of, government in terms of its utility and its necessity or as privileges that prevent the government from interfering in relationships between private parties. The American conception is that liberty is best conceived as the (negotiated) independence of the governed vis-à-vis the governors, and culminates in the exercise of contractual power.28 Conflicts of interests between individuals are settled by contract or by the judiciary, not by legislation. Unlike the rights granted by the European Convention on Human Rights, American constitutional rights are traditionally negative and susceptible to waiver by the beneficiaries.29 This original difference of meaning may conceivably explain why the idea of a ‘market for personal information’ has originated in the United States. The European human rights approach A very enlightening explanation of the differences existing between the two conflicting and interacting conceptions of liberty has been provided by Michel Foucault’s lectures at the Collège de France in the years 1978–9 (Foucault, 2004: 41–2). According to Foucault, the ‘revolutionary way’ of conceiving liberties – typical of the continental European tradition – anchors those liberties in law, itself conceived as the common will of the citizens, defining the part of their fundamental, innate rights they are willing to transfer to public government and the part of those liberties that remains independent from public government. In the European human rights framework, rights

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and freedoms of the first generation are civil and political rights. The conjunction between these two terms civil and political is important as it attests to the fact that individual liberty is at first conceived as liberty to participate in the legislative process, rather than as freedom from legal interferences with one’s contractual freedom and private life. The European conception of liberty is a legal ( juridique) one. In the United States, regulation never refers to a common international framework. Instead, individual states adopt specific and often contrasting legislation, which is then developed into specific case law by the respective state courts. Regulation of new genetic technologies is developing in Europe from a common international and regional human rights framework. This explicit genealogy is to be noted in the very title of regional instruments such as the Council of Europe’s Convention on Human Rights and Biomedicine (Council of Europe, 1997b). The Convention aims ‘to protect dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine’. Besides, the European Community’s competence to pass legislation on genetic and biotechnology issues derives from treaty provisions covering the health and safety of workers, the safety of the environment, and with the requirement to gradually remove barriers to trade. The EU has also sought to influence the policy context in other ways. Directive 95/46/EC of October 1995, for example, concerned ‘the protection of individuals with regard to the processing of personal data and on the free movement of such data and seeks to regulate the circumstances and conditions under which information obtained from samples can be used for purposes other than those originally intended’. The emerging regulations of the applications of biomedical technologies in Europe reveal some changing paradigms, though: the traditional principle of indisposibility of the human body and the absolute character of medical secrecy (not to be breached even with the patient’s consent) has been gradually replaced by the principles of individual autonomy and self-determination, grounded on the right to privacy. The process is one of gradual ‘individualisation’ of regulatory rationales. The first origin of the duty of confidentiality is to be found in the medical deontology. The duty to confidentiality of medical information was grounded as much on concerns for public health, on corporatist concerns for the medical profession’s dignity and reputation, as on a concern for the individual’s privacy. Secrecy was not only justified by the interests of the concerned patient but also by the interests of the general public and of the collectivity of practitioners. It was thus not in the power of the individual patient to decide to disclose medical information and discharge the medical doctor from his duty of confidentiality. The later criminalisation of breaches of professional secrecy was not grounded on concern for the medical profession’s interests any more. The concern was this time focused on the general common good (confidence in the medical profession is considered

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as a good thing for public health). The next stage in development consisted in the enactment of Article 8 of the European Convention on Human Rights protecting the right of privacy of individuals. That last step made privacy a purely individual right, grounded only on the basis of individual interests. The formal disappearance of the common goods ground for the protection of medical secrecy, coupled with the fact that claims for violation of medical confidentiality are increasingly argued on the ground of Article 8 of the ECHR, might well provide an explanation for the growing difficulties experienced by law in coping with the different competing interests regarding medical – and genetic – information. In the European Convention on Human Rights, the person is at the centre and forms the only subject of the Convention. With the growing importance of the human rights instruments in the European legal order, subjective rights become the privileged regulatory instruments. Explicit acknowledgements of the right to privacy are numerous in the European human rights framework. The right to privacy is explicitly mentioned in the European Convention on Human Rights (Article 8) and protects individuals against invasions of privacy by public authorities or, through the Convention’s horizontal effect, by other individuals.30 The right to private life has been interpreted by the European Court of Human Rights as including the individual right to control personal information, including in the workplace,31 the person’s right to physical and moral integrity, including his or her sexual life,32 the right to access one’s personal records,33 and the right to establish and maintain personal and social life.34 General argument supporting legal interference with the ‘contractual rationality’ of insurance underwriting: the argument from coercion Foucault identifies the ambiguity of European liberalism since the fourteenth century precisely at the articulation of those two traditions, where you see human rights alternatively being used to protect a fundamental right or to protect independence from government. Debates about the commodification of genetic (and non-genetic) privacy and the alienability or inalienability of private information on the ‘markets’ for insurance and employment illustrate the tension existing between these two visions. The principle of freedom of contract, libertarians argue, should allow insurers and employers to condition insurance or employment upon disclosure by applicants of relevant genetic information. Because all this occurs in the private contractual sphere, it is assumed that the law should not interfere. It will, however, be argued that – at least as far as basic insurances are concerned – the imbalance between the bargaining powers of prospective policyholders and insurance companies justify legal interference in contractual relationships. Indeed, an argument traditionally raised in support of legal interference

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with the ‘market rationality’ of insurance underwriting is the argument from coercion. The argument requires the law to curb the rule of contractual freedom to protect consumers of insurance from ‘hard choices’. This is especially important regarding insurances on which people rely for the provision of what society considers as basic goods. Stemming from notions of autonomy, consent, and equality, the argument from coercion suggests the need for the law to interfere in private insurance contracts where basic insurances are provided through market mechanisms. State regulation would be justified given the inequality of bargaining power between insurers and their clients in desperate need of insurance in order to secure the future of family members, to pay for a decent funeral service or to obtain some form of financial security, basic health care and prescription drugs.35 Beveridge’s view was that: Life insurance is not like other commodities because those who insure make their choice once and for all when they take out a policy. They cannot buy less insurance or another form of insurance the next day or change their assurance company without loss, as next day they can substitute bacon for beef or change their grocer without loss. Industrial assurance, that is to say life insurance among people of limited means, is so different from most other commodities that it cannot be safely treated as an article of commerce. (Beveridge, 1942: 275) The argument from coercion overturns insurers’ claims that provided their customers consent to disclose private information, including genetic information, there is no justification for prohibiting genetic information flows in insurance, and that informed consent policies and data protection regulations are sufficient to protect the autonomy and privacy of policy-holders. The argument from coercion is a classic justification for legal interference in employment contracts. The European Group on Ethics in Science and New Technologies, for example, in its opinion on the ethical aspects of genetic testing in the workplace, insisted that: . . . consent, which is admitted by the Data Protection Directive as a means for legitimising data collection and processing, may not really be free in the employment context, in which employees and prospective employees are either subordinate or dependent. In other words, employees often find themselves in a position where it is virtually impossible for them to refuse, withdraw or modify consent, due to the employer’s position and power, and to their own fear of loss of job offer, promotion and so on.36 There are two fundamentally different schools in the tradition of liberalism. The ‘inalienist tradition’ views fundamental rights as rights of personhood,37

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inalienable even with the person’s full informed consent.38 According to the alienist faction, basic rights are on the contrary seen as property rights, alienable and transferable with full, informed consent.39 I have argued elsewhere against an alienist interpretation of the right of privacy (Rouvroy, 2000). Conceiving the individual right to privacy as encompassing both a right to individually control and decide whether, under what conditions, and to whom to disclose one’s genetic information and a right to waive one’s right of confidentiality over genetic or other medical information is inconsistent with the shared nature of genetic information, which – as we have seen earlier – concerns more than just the individual legal subject, and is socially meaningful. Moreover, as suggested by Radin (1989: 168), the waiver of rights consented to by some (whether under hard choice circumstances or because they realise that disclosure of private information will give them a comparative advantage over other individuals competing in the same insurance or employment market) defeats the freedom of choice of others, as it creates a general sense of compulsion and a general commodification of private information, forcing everyone to enter into that market.40 The case of genetic information disclosure in insurance or employment contexts epitomises the problems that would arise should one adopt an alienist conception of genetic privacy. The decision made by someone who, for example, tested negative for a series of genetic susceptibilities, predispositions or late-onset diseases, to disclose that information to insurers and/or employers will unavoidably compel others to disclose similar test results in order not to suffer a comparative disadvantage. Those who would opt to keep their privacy in such circumstances would probably be suspected by insurers or employers of ‘having something to hide’.41 If individuals with ‘good genes certificates’, or, more modestly, those who can prove they have been tested negative for a genetic predisposition, susceptibility or pre-symptomatic status, are allowed to disclose those ‘good’ genetic risks to insurers or employers in order to be charged lower insurance premiums or to be hired preferentially, all those who choose not to disclose their genetic test results will be suspected of being at higher than average genetic risk and will be sanctioned accordingly. In contexts like health and life insurance and employment, I have argued, privacy should be considered as an unwaivable right pertaining to the category of systemic norms rather than to the category of private individual negative rights. Examples exist of such systemic norms even in the United States Constitution42: for example, the right to vote43 may not be sold on the market.44 Why, if it is at least perfectly legitimate and arguably the whole idea that people should vote out of self-interest, is it wrong to sell a vote in an election? (Alldridge, 2001: 86) John Dewey argued that rights need not be justified as the immutable possession of the individual, but as instrumental in light of ‘the contribution they make to the welfare of the community’ (Dewey, 1991: 374). Rather than being instrumental to the realisation of individual negative liberties (agent-relative values), genetic privacy (thoroughly conceived to take into

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account the complex and heterogeneous meanings of genetic information) may be an essential structural tool, for the preservation of autobiographical individuals empowered with the contestation (and reconstitution) abilities (typically agent-neutral values) needed in order to negotiate a new social contract on the threshold of a post-genomic era characterised by the possibility of gaining increasingly sophisticated knowledge of individual risks (Rouvroy, 2000). In any case, if one attaches some final or merely contingent value to the prevention of genetic discrimination outside the healthcare context, genetic privacy seems indeed to have not only an intrinsic worth (it is not even clear if such an intrinsic worth of genetic privacy exists, especially in the United States, where the constitutional basis for informational privacy is so controversial) but also an instrumental value, conceived as a means of preventing genetic discrimination in access to certain specified social goods,45 such as health and life insurance and employment. Yet, the rationale grounded on prevention of genetic discrimination for constraints imposed on the free trade of genetic information between concerned persons and their employers, insurers and other interested third parties is much challenged, especially in the United States. In neo-rule-utilitarian reasoning,46 economic efficiency may be considered as the final value, preventing discrimination then being instrumental and contingent to realising efficiency (Wright, 2000). According to ‘hard law and economics’ supporters, for example, the transaction costs arising from uncertainties about the genetic status of persons, and information asymmetries existing between the contracting parties, decrease the efficiency of the marketplace, and are thus incompatible with the common good. Some would even suggest that those who create or refuse to abolish a removable uncertainty should be held responsible for the transaction costs associated with the lack of transparency, and should accordingly be charged for those increased costs.47 Those who want privacy for themselves, refusing thereby to be submitted to the transparency imperative of the market, should thus pay the cost of privacy. In order to be competitive, however, any market trader should take privacy seriously. Respect for consumers’ privacy expectations might become a commercial argument: the provision of privacy, in a competitive market, should be beneficial to those agents who provide it when other agents don’t (at least if one considers that consumers would usually prefer to be protected in their privacy and not to be discriminated against). Private insurance as a limited social contract and the paradox of genetic individualisation of risks in insurance In addition to the justification from coercion just mentioned, it may also be argued that pure contractual freedom may not be applicable in insurance because an insurance contract is a particular type of contract: it is a contract

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by which individuals adhere to a community ruled by the principle of actuarial fairness (Stone, 2002). Risks, although technically referring to an individual, are always defined by that individual’s belonging to a group. Insurance risks are therefore collective, only their realisation is individual. It is the task of insurers to constitute the population of policy-holders. It is indeed only at the level of a definite population that risks become quantifiable.48 ‘Good’ as well as ‘bad’ risks exist only by reference to the pool to which they belong. Ewald (1996) noted the paradoxical character of the concept of individual risk. The notion of individual risk, such as genetic risk identified through genetic testing, is at odds with the classical principle that – in insurance at least – a risk is always collective, even if its materialisation is individual: A risk is always collective. If a realised accident, damage, or suffering is always individual; the risk of an accident, damage or suffering, always concerns a given population. There is no true individual risk, lest insurance would transform into bet or wager. A risk, indeed, becomes calculable only in a population. The insurer’s task is precisely to constitute that population by selecting and dividing risks. A risk, to become calculable, needs to be relative to a population. It is precisely the insurer’s task to build that population by selecting and dividing risks. Insurance functions through probability estimates, providing arithmetic fractions which state the chance of a particular event occurring. Statistics express an estimate of the risk that particular events occur but do not designate who they will happen to. Yet, genetic risks may be said to be immanent, inherent to the body of the insurance seeker or policyholder. Genetics also raises the problem that the individualisation of risks through genetic information is made by reference to a normal human genome or an average human genome. The average is not measured by reference to a definite population of individuals – the group of policyholders49 – the average in the expression average human genome, rather suggests a kind of perfection which is essentially virtual, the perfection of the mythical and abstract human genome. The individualisation of risks using genetic information is thus a problem from the point of view of basic insurance rationality as genetic individualisation arises not by reference to a limited group or category of policyholders, but by reference to the postulated humanity – the humanity that the Human Genome Project is alleged to take hold of. Such genetic individualisation is antithetical to the basic function of insurance which is precisely the collectivisation of the burden of individual risks. It is the business of insurance to spread risks among those who decide to become part of the insurance pool, having decided among themselves, through the insurance contract – which is, after all, a kind of limited social contract –

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upon the rules of mutuality that will define the contribution and benefits of each of them. In the case of life insurance, the limited social contract of insurance includes the members of the next generation as pure beneficiaries. In 1865, for instance, life insurance was described by E About in the following words: Life insurance is not merely an imperious duty, it is the expression of a universal law. That law is one of the most salient, one of the most firmly imprinted in the whole nature: it is called the law of species conservation; it requires that the ascendants’ expenses fall not on the descendants, and that the future of each generation be prepared, safeguarded and guaranteed by the previous generation.50 The rule of actuarial fairness would obviously not suffice to guarantee that this sort of imperious duty be fulfilled. Yet, the rules of actuarial fairness, because the community of policy-holders may agree to change them, cannot be considered to have the stability of pre-political rules of nature. Actuarial fairness could well accommodate solidarity mechanisms to fulfil policyholders’ conceptions of fairness or moral duty. Although one classical difference between private or commodified social insurance and compulsory public social insurance is the roles those schemes accomplish (public social insurance systems, more than their private counterparts, redistribute resources through income-related contributions as well as risks), private insurances with elements of solidarity are not rare. Even in private insurance such as life insurance, elements of solidarity do exist between policy-holders: insurers usually pool together in a single standard class of relatively high and relatively low risks, and do not take into account variations of risks that are below a certain rate. This means that most people obtain life insurance at a standard rate despite being at varying risk of early death. Introducing welfare-based elements into private insurance? According to Ewald (2000: 80), [b]anning insurance companies from having access to genetic information (which boils down to giving policyholders the right to lie when it comes to genetics) amounts to subsidising individuals so that they can get the insurance they need. This is effectively a way of introducing a welfare-based element into the private property sphere. If the moral worth attached to compulsory, public solidarity-based insurance is to be transferred to private mutuality-based insurance – as insurers often argue in order to support their claim that public policy should pursue the prevention of adverse selection and protection of the insurance sector’s

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prosperity – the functioning of mutuality-based insurance should be adjusted to prevent persons being excluded from its benefits for reasons unrelated to their own choices and efforts.51 Indeed, as the European Commission’s Committee of Experts on the use of medical examinations for employment and insurance purposes acknowledged: [D]ue to the fact that protection provided by social (mandatory) insurance schemes could decrease (and in some countries is in fact being reduced), there is a growing tension between the complete contractual freedom, which is traditionally claimed by the insurance industry and the social responsibility, which is (increasingly) expected from it.52 Diverse suggestions are advanced in the existing literature to balance the prevention of adverse selection and sufficient access for all to the required amount of insurances. Scholars have made a variety of proposals and comparative law provides useful examples of legal and administrative regimes coping with both the economical and ethical challenges arising from the encounter of predictive genetic information and insurance. Compulsory ‘genetic insurance’ The compulsory genetic insurance system suggested by Alexander Tabarrok is an example of what scholarly imagination may bring about: the law, Tabarrok explains, would forbid genetic testing unless genetic insurance is first purchased. This genetic insurance would guarantee the policy-holder against loss of insurance or increased insurance premiums resulting from the compulsory disclosure of adverse genetic test results to the insurer (Tabarrok, 1994: 90). However, compulsory genetic insurance would unavoidably involve a re-expansion of the welfare state. Considering that issue presupposes the welfare state’s survival as a valid option. Compulsory genetic insurance for those intending to undergo genetic testing, Tabarrok argues, does have Rawlsian undertones: We are all behind the veil of ignorance as far as (some) of our genes are concerned. Buying insurance before a genetic test lifts the veil goes some way to compensating those who, through no fault of their own, were unfortunate to get a bad draw from nature’s lottery.53 Such a system would not hold in the long run, it has been argued, if genetic testing were generalised. For those scholars endorsing the prediction that everyone will have their DNA entirely sequenced either at birth or during embryonic development, there will not be such a period of universal ignorance during which people will buy genetic insurance without yet knowing whether they will be in the position of claiming benefits from that insurance.

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It may also be argued against such genetic insurance that, like current general health insurance, it would be vulnerable to secret tests done in advance of official tests. Moreover, the payoff for genetic insurance would be hard to define given the uncertainty of whether present genetic risk factors will remain risk factors in ten or twenty years. Due to the unpredictable pace at which preventive and therapeutic strategies will be developed, payoffs for genetic insurance would be highly contingent, and would depend on the unprincipled optimistic or pessimistic attitudes of actuaries regarding genetic research. Threshold systems Regimes in force in Sweden, the Netherlands, the United Kingdom and Switzerland for example, that mix total regulation as the general principle with partial regulation when it comes to high-value policies, seem promising. In Sweden, the agreement signed between the State and insurers, applying to individual life and health insurance, provides that no-one will be required to undergo a genetic test as a precondition to insurance and that the results of previous genetic tests or details of family history will not be requested nor taken into account when assessing risks for insurance below a certain amount. In the Netherlands, the Medical Examinations Act of 1998 prohibits insurers from requesting previous test results for serious, untreatable diseases when the insured amounts are less than
146,000 approximately for life insurance and
29,000 approximately for health insurance. Such restrictions do not seem to apply to diseases which are not serious, untreatable ones. In the United Kingdom, insurers agreed a moratorium until November 2006 – recently extended until 2011 – stating that applicants will not be requested to undergo genetic tests as a precondition for insurance and that no disclosure of previous test results will be required unless the amount insured exceeds £500,000 (
722,700 approximately) for life insurance and £300,000 (
433,600 approximately) for health insurance. Even for high-value policies, insurers are only allowed to request those test results that have been approved by the government’s Genetics and Insurance Commission (GAIC), a nonstatutory and non-departmental public advisory body. Only the test for Huntington’s disease has so far been approved by the GAIC for the specific purpose of life insurance. Applications under consideration in 2005 related to the use of adverse results from predictive genetic tests of the BRCA1 and BRCA2 genes (breast/ovarian cancer) in helping to determine insurance premiums for life and critical illness insurance. In 2008 the GAIC expects the Association of British Insurers (ABI) to resubmit two applications for the use of BRCA1/2 in life and critical illness insurance, although the GAIC did not approve those tests for insurance use in 2004.54 The English example of an independent advisory body (GAIC), evaluating the technical, clinical and actuarial relevance of predictive genetic test results for each type of insurance, may be inspiring.

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In Switzerland, insurers are allowed to access genetic test results of policyholders planning to buy life insurance policies worth more than SFr 400,000 (
260,000 approximately) or voluntary disability insurances involving annuity amounts above SFr 40,000 (
26,000 approximately)55 (Burgermeister, 2004). Such mixed regimes, in restricting the amount of insurance that can be purchased without having to disclose actuarially relevant genetic information to the insurer, limit the risk of adverse selection whilst avoiding the negative impact that fears of genetic discrimination in insurance would have on the demand for medically useful genetic tests and allowing those with high genetic risk and in need of insurance to purchase the normal amount of insurance. The European Council’s Health Committee already observed in 1999 that ‘in order to take into account the legitimate interest of the insurer, who, in all fairness, wishes to reduce the risk of adverse selection, it would be foreseeable to apply an exception to the rule of non-disclosure of previous genetic test results to the insurers if the coverage desired is much higher than the financial status of the applicant’ (European Council Health Committee, 1999). The European Society of Human Genetics, in its recommendations on genetic information and genetic testing in insurance and the workplace (2000a), acknowledged that: A solidarity component within commercial insurance can be provided through the system of a threshold level of insurance cover, below which genetic information need not be disclosed. In such a system, clients generate an element of solidarity in covering existing or future genetic disadvantage by all paying the same premium. Where such a threshold exists, the reasons for choosing the threshold value should be given. In the United States, these proposals appear to be strongly opposed by the industry as far as life insurance is concerned. Policies based on such proposals, it is argued, ‘would grant a constructive entitlement to a specified amount of life insurance and guarantee coverage for certain individuals, giving them preferred status over people with unprotected medical conditions’ (Meyer, 2004: 33–4). Additionally, insurers argue that risk classification is critically important regardless of the size of the policies. If the threshold amount is inferior to the average face amount in life insurance, such a policy ‘would undermine medical underwriting for much of the existing individual life insurance market’.56 On close examination, anyway, introducing elements of solidarity in mutuality-based insurances appears only possible when the market is not genuinely competitive. In competitive markets, single-payer, universal insurances are more effective. Concerning the fundamental principle of pooling in insurance, Kenneth J Arrow stated that,

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[H]ypothetically, insurance requires, for its full social benefit, a maximum possible discrimination of risks. Those in groups of higher incidences of illness should pay higher premiums. In fact, however, there is a tendency to equalise, rather than to differentiate premiums. . . . This constitutes in effect a redistribution of income from those with a low propensity to illness to those with a high propensity. The equalisation, of course, could not in fact be carried through if the market were genuinely competitive. Under those circumstances, insurance plans could arise which charged lower premiums to preferred risks and draw them off, leaving the plan which does not discriminate among risks with only an adverse selection of them. As we have already seen in the case of income redistribution, some of this may be thought of as insurance with a longer term perspective. If a plan guarantees to everybody a premium that corresponds to total experience but not to experience as it might be segregated by smaller subgroups, everybody is, in effect, insured against a change in his basic state of health which would lead to a reclassification. This corresponds precisely to the use of a level premium in life insurance instead of a premium varying by age, as would be the case for term insurance. (Arrow, 1963) According to Eric Holmes: ‘In a market where subscribers are not forced to purchase coverage and may choose among several competing sources for insurance, the failure to classify risks will be fatal’ (Holmes, 1996). Thus in genuinely competitive insurance markets, where citizens need insurance against future adverse classifications arising either from a change in health status or from the development and availability of new predictive genetic tests for diseases where such tests didn’t previously exist (a situation of uncertainty), universal social insurance schemes would be better equipped than their private counterparts to provide the insurance needed by citizens. Compulsory schemes of social insurance are arguably better equipped than their private counterparts to cope, not only with risk, but also with uncertainty. When the buying of insurance is compulsory, exit by low-risk individuals is prevented. As a consequence, the ‘contract’ in social insurance schemes may be less specific than in private schemes, and protection may be provided against risks that private insurance cannot insure (Barr, 2001: 24). A typical risk that private insurers cannot insure is the risk running in families with a history of autosomal dominant late-onset diseases such as Huntington’s chorea. A case study analysis by Geller et al mentions the case of a 24-yearold woman who was denied life insurance due to her ‘strong family history of Huntington’s chorea’ and the fact that she had never been tested to determine if she is currently a carrier. The rejection letter stated that if she ‘should be tested and if found to be negative’, the company would issue a standard contract (Geller et al, 1996). Carriers of the mutation involved in that disease may show no symptoms in their twenties and yet be destined to die in their

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forties or fifties. People belonging to affected families have a 50 per cent chance of developing the disease. Consequently they are usually unable to get private health and life insurance at affordable prices unless they provide negative genetic test results. Ironically, this fact is used by insurers to sustain their claim against restrictions on the use of voluntarily disclosed genetic information. The prohibition on voluntary disclosure of genetic information by prospective policyholders prevents those excluded from insurance coverage for reasons related to their family history benefiting from negative genetic test results. In the case of Huntington’s pre-symptomatic testing, insurers argue that allowing voluntary disclosure of people’s genetic status would only benefit individuals belonging to families affected by the disease, but who do not themselves carry the mutation. It would not harm those who would have their carrier status confirmed by the test because, as members of an affected family, the latter would be excluded from insurance anyway (Wilkie, 1997). Accordingly, insurance companies argue that a prohibition on the use of genetic test results in underwriting unfairly discriminates against those with specific family histories (Biser and Shorett, 2004). Yet the requirement of providing negative test results in order to be considered for insurance runs counter to the interests of those at risk who do not want to know their status. This category of persons has their risk evaluated by insurers on the basis of their familial history, and are denied affordable policies. Concern for people’s interest in not knowing a fatal prognostic thus constitutes an additional plea in favour of universal insurance schemes. An observation resulting from the above assessment of the ‘contractual freedom’ argument against regulation of genetic information flows in private insurance is that, as far as insurances considered as basically necessary in a given society are concerned, provision by universal, single-payer schemes is probably more efficient than its privatised counterpart.

B. Assessing the fear of adverse selection and the ‘insurance dilemma’ Let us return to the problem of adverse selection that genetic information asymmetries would cause to the insurance industry in competitive markets. Existing prohibitions of insurers’ use of genetic information are intended to implement a certain degree of redistributive solidarity among policy-holders, to protect their privacy and autonomy and to avoid a situation where individuals are dissuaded from taking medically useful genetic tests by fear of results having adverse consequences on their insurability, and to avoid a situation where individuals with high genetic risks experience difficulties or impossibility in getting the insurances they need. Some authors anticipate that such a ban, imposed at national level, would unavoidably result in the collapse of the domestic insurance industry at high private and public cost. This, they argue, would come about as a result of a large-scale adverse selection

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spiral triggered by the genetic information asymmetry caused by legal prohibitions against access and use of genetic information by insurers.57 The mechanism through which the insurance industry would collapse – should the existing bans on access to genetic information by insurers not be repealed – goes as follows. When the amount of genetic risk information held by policyholders or insurance seekers increases, in a situation where insurers are prevented from accessing that genetic information, the resulting information asymmetries distort actuarial fairness by preventing insurers from adapting the level of premiums and compensations to the actual level of risk presented by each policy-holder.58 The practical result is the subsidising of people at above-average genetic risk by people at below-average genetic risk. Those subsidies would influence demand, and generate adverse selection: [I]f those who are aware that they run a higher-than-average risk of being afflicted by the insured event (the high risk) do not need to inform the insurer about it, they will buy insurance on a particularly large scale. In the same way, persons knowing that they represent a smaller than average risk (the low risks) will take out insurance on a particularly limited scale. (Radetzki et al, 2003: 39) In a context of internationalised insurance business and absent harmonised legislation regarding genetic information and insurance, the survival of domestic private insurance companies in countries where radical restrictions exist on the use of genetic information for underwriting purposes would be further jeopardised. Indeed, as already mentioned, to avoid adverse selection, insurers are forced, in a genuinely competitive insurance market, to assess risks as precisely as possible. Failure to underwrite accurately would result in a situation where people with below-average risk, rather than continuing to subsidise people with high genetic risk insured by their domestic insurance company, would rather buy insurance offshore, in countries where restrictions on the use of genetic information for underwriting do not apply. As a result, the domestic industry would attract policy-holders with high genetic risk and expensive claims, and be gradually deserted by policy-holders at low genetic risk, who would shift their insurance contracts abroad. With the bankruptcy of the domestic personal insurance industry, the initial advantage of regulation for those with high-risk genes (guaranteed access to health, disability and life insurance) would be systematically depleted (as premiums rise to compensate for decreased contributions from low-risk individuals) and would ultimately disappear completely (with the bankruptcy of the insurance business). The adverse selection spiral, also described as the ‘death spiral’, and the ensuing collapse of the insurance industry in countries where genetic information flows in insurance are restricted, should be avoided at all costs, part of the literature argues, given that societies increasingly rely on the private

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insurance market for the provision of socially useful or necessary insurance. The profitability of the insurance sector and the public good are increasingly intimately linked, it is argued. As public-sector reform, with agendas of privatisation, decentralisation and shifts in the principles of public involvement and participation progresses (Bunton and Petersen, 2005: 4), the continued existence and prosperity of the private insurance industry becomes vitally important for the provision of the basic good of health care. The greater the dismantling of social insurance schemes, the more people will have to rely on private schemes for their basic health insurance. The less generous public social insurance becomes, the more the prosperity of the private insurance industry becomes crucial for society. Protecting the insurance industry against adverse selection becomes paramount since the noble mission of providing access to the basic good of health care becomes vested into it. In this view, thus, private insurance business must be preserved at all costs for the same reason that universal social insurances are being further privatised. However, the solution is ironic to say the least: it assumes that the creation of a class of uninsurable people should be accepted as the price society must pay for the survival of its privatised social insurance business, a survival that has become of paramount importance due to the evolving role of private insurance which includes the actual provision of basic, needed, insurances. As explained in more detail later, the same paradox defeats both the arguments against and for regulation of genetic insights by insurers: the two factions both rely on the nature of health insurance as a basic good. As noted by Kitcher (1996: 135): [M]edical insurance is best viewed as a scheme in which each of us participates to ensure ourselves a vital resource. Risks are thrust upon us by the genetic lottery, and in a just society those risks would be irrelevant to the costs of coverage. One of the great metaphors for affluent meritocracy is the image of a race for attractive prizes, in which the contestants are to have (approximately) equal opportunities. Societies that tolerate conditions in which some people are declared medically uninsurable effectively insist that those bearing unlucky alleles must run with extra burdens. Some support deregulation of genetic information flows in insurance on the ground that regulation will cause the unavoidable collapse of the insurance industry at high social cost, given the nature of the concerned insurances as basic goods. Others urge legislators to enact specific laws on genetic privacy and non-discrimination, for the identical reason that the insurances concerned are basic goods, and that bad luck in the ‘genetic lottery’ should not negatively impact on one’s access to basic goods. Both policy options, however, fail to guarantee universal access to the postulated primary good of insurance.

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Both deregulation and regulation of genetic insights by insurers exclude – without morally sound justifications – portions of the population from the guaranteed access to insurance they are supposed to provide. Adopting the first option (deregulation) amounts to considering basic insurance as a basic good that should be widely accessible at affordable prices to all but those with adverse genetic status; implementing the second option would result in guaranteeing affordable access to basic insurance to those with adverse genetic status but not to other people at risk for non-genetic reasons. None of the options can be said to be normatively sound. Obviously the political choice must be made as to whether one considers different kinds of insurance as commodities or as basic goods: once decided, the definition must hold for everyone, independent of the sort of risk individuals hold. If some insurance is defined as basic goods, it must be universally available, and guaranteed to all without consideration for the type of causation: be the risks related to specific genetic configurations, to specific lifestyle or job, or to any other cause. If other insurance is defined as commodities, it should be available according to individual risk assessment, and individuals’ willingness/ability to pay for it. Here we are already anticipating our discussion of the arguments raised in support of prohibiting the use of genetic information in insurance underwriting. For now, one will further object to the insurance industry’s arguments on the basis of its confusion of the notions of actuarial and social justice; its exaggeration of the risks of adverse selection on genetic grounds; its disregard of disincentives to take potentially medically useful genetic tests that ‘genetic discrimination’ would cause, and its incompatibility with the nascent principle of proportionality of private information requests in insurance. Disaggregating the concepts of actuarial and social justice One implicit claim of the insurance industry’s position is that actuarial and social justice may be reconciled by privileging the competitiveness and profitability of domestic insurance businesses over universal access to basic insurances. The principle of ‘actuarial justice’, also called actuarial fairness or equity, requires that people who have similar health or similar life expectancies should pay equal premiums and those who have poorer health or lower life expectancies should pay more (Godard et al, 2003). The basic principle of insurance is that ‘hypothetically, insurance requires for its full social benefit a maximum possible discrimination of risks’ (Arrow, 1963). Those in groups with higher incidences of illness should pay higher premiums. Whether genetic differentiation in insurance constitutes discrimination should thus be assessed by reference to the economic consistency of the decision taken by the insurer or employer, and not by reference to the invasion of privacy resented by concerned individuals. In insurance, the

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anti-differentiation, or equal treatment, principle does not allow differential treatment of people who are in the same situation. According to that concept, also known as formal equality, no differentiation is allowed which bears no relation to the real risk that the candidate presents. It is this conception of anti-discrimination that insurers seem to endorse when they develop their knock-down argument that they are morally obliged to use the standard underwriting process – denying coverage or offering more expansive and substandard coverage to those who have a disease or are at higher risk of contracting one in the future, as determined by various medical examinations, tests, records, or other predictors of risk (Daniels, 1994: 112). Actuarial fairness involves the accurate selection and grouping of class risks, to ensure that those clients with low medical risk do not have to pay for those with high risks. In a competitive insurance market, insurers say they have to comply with their clients’ preferences. Accordingly, it would be unfair that the lucky ones should have to pay for the unlucky others. Contrary to a common assumption, the principle is not grounded on the libertarian idea that people have a fundamental natural right to benefit from their natural endowments, and that those with ‘good risks’ deserve paying less than those with ‘bad risks’. The ‘actuarial fairness’ rule is rather a technical ‘amoral’ rule of insurance that is necessary for its operation. Only when insurance underwriting is ‘actuarially fair’, is private insurance sufficiently attractive to people. John Rawls has suggested that natural talents and assets should be considered as belonging to the common pool of society. The traits that make someone a good insurance risk are not usually earned or deserved by those who hold them. This is especially true as far as health and life insurance risks are concerned. Medical antecedents, family history, and genetic predispositions are arbitrary from a moral perspective, thus people without significant medical antecedents, with a family history of good health, and with ‘good genes’ do not ‘deserve’ ‘actuarially fair’ insurance pricing, nor are they morally entitled to opt out of universal insurance schemes. A usual argument of insurers is that the use of predictive genetic information in insurance would enhance equity by allowing a more precise calculation of which individuals are really in the same situation and which are not. This vision identifies the insurers’ interests with the interests of the whole, while individual interests in insurance are perceived rather as a threat to the economic prosperity of insurers and, consequently, of the country. The common belief widely reflected in the literature is that: ‘It is not just insurance companies who stand to lose if a person with a debilitating gene is included in the insurance pool; so, too, do the other insured, unless they can easily transfer their patronage to an insurer more adept at avoiding these bad risks. . . . once it is known who is afflicted and who is not (or who is badly affected and who is merely slightly afflicted),

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each party is able to see clearly who is carrying the burden and who is sharing it.’ (Buchanan et al, 2001: 326) Not only does such a belief confuse actuarial and social justice, it also exhibits a purely economic account of insurance, and ignores alternative definitions of insurance as ‘a social institution that helps define norms and values in political culture, and ultimately shapes how citizens think about issues of membership, community, responsibility, and moral obligation’ (Stone, 2002). There is no reason, however, to consider insurance contracts as necessarily excluding a sense of solidarity amongst policy-holders, beyond their selfinterest in mutual coverage. The maximisation of insurance companies’ profitability, beyond mere solvability, is not a concern which policy-holders and insurers necessarily hold in common, and holding an insurance policy is not equivalent to holding a share in the stock of a company. There is a substantial qualitative difference between insurance and other financial products, notwithstanding assertions to the contrary by some insurance lobbyists. As a consequence of the conceptual blurring of policy-holders’ interests with the insurance industry’s interests, risks of adverse selection are considered as risks the state should protect insurers against, whilst the risk of adverse genetic diagnostic followed by exclusion from the insurance risk pool is something that persons concerned should suffer individually. This process is in line with a broader contemporary tendency to subsume individual rights to security (acknowledged in the European Social Charter, as in the Council of Europe’s Convention on Economic and Social Rights) under the increasingly constitutionalised rights of corporations and capital-holders. McCluskey (2000) rightly emphasised the fact that ‘The problem – for society as a whole and for insurance in particular is not how much risk versus security is good policy, but whose risk and whose security is good policy.’ She usefully explained that ‘[R]ecent neoliberal efforts to replace government security with market risk aim not to reduce social insurance so much as to redistribute it toward employers (and capital owners in general) and away from workers’. The justification for privileging the security of employers and capital owners lies in the illusory theory that those whose interests are most closely connected to society as a whole should be, more than isolated individuals, protected from risk bearing. In the neoliberal ideology, protection for capital owners, not workers, not to mention jobless people, is more important and beneficial in the new conditions of global market interdependence: by reducing security in social insurance programs in favour of policies supporting investors, we can better promote market growth that will bring the most security to workers (jobless people simply disappear here) in the long run.59 Yet, observable tendencies disprove these neoliberal promises. The redistribution of social security from workers to employers has exacerbated insecurity

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for most workers (McCluskey, 2002: 146–7). As Roxanne Mykitiuk rightly argues, the process is not simply one of deregulation in the service of the market, but rather a different kind of regulation and a shift in the legal paradigm of regulation. The process implies a redefinition of the public interest and of the methods adopted by the state to define and promote that public interest. The state no longer sees itself as defending the public interest against private interest of private actors, but sees itself as promoting the interests of private actors as the potential benefactors of the public through the production of health commodities. In doing so, however, the state is also changing the nature of regulation. In moving away from defining and defending the public interest, and towards a model of product liability and intellectual property, the state is shifting the arena of adjudication into the arena of commercial law and away from public and constitutional law. (Mykitiuk, 2000) The paradox is the same in the case of insurance: it seems highly illogical to argue both (1) that in order to comply with the principle of actuarial fairness, private insurers should be able to refuse to pool individuals at high risk with those at standard risk, and (2) that the vital social importance of the business of privatised social insurance derives from the new role it has acquired as basic insurance provider, whereas basic insurance is conceived as something people are entitled to as a matter of social justice. The arguments raised by insurance lobbies are twofold. On the one hand, they argue that insurance is a private contract that allows rational economic agents to manage risks of serious losses under conditions of uncertainty. Insurance is, in that view, a pure risk-management financial product, and a perfect commodity that insurers should be allowed to sell and applicants should be allowed to buy at marketplace prices and under contractual conditions undistorted by state regulation. The basic rules of private insurance include both the principle of full disclosure of any relevant fact known by the applicant which is relevant to assessing the risk the applicant would bring to the insurance pool, and the principle of freedom of contract, implying that the parties may freely decide their mutual rights and obligations. Presenting insurance as a purely financial arrangement sets aside the special social, economical and moral significance of insurance. On the other hand, the opponents of legal regulation of genetic information flows in insurance rely on another type of argument to support their claim against restrictions on the use of genetic information for underwriting purposes: they in fact resort to the social role of insurance to make the ‘dead spiral’ of adverse selection something that insurance companies should be protected against at all costs. In the insurance context, the prioritisation of the insurance industry’s prosperity over the protection of individual access to insurance needed in case of

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adverse genetic test results, confusing actuarial fairness (which allows the seller of insurance to select the customers to whom he will sell, and to set different terms for individual customers in order to increase the insurance business’s prosperity) with social justice (a principle requiring that no-one be deprived of basic social goods), reveals the same implicit neoliberal justifications. The provision of more security for insurance companies necessarily weakens individual social and economic security. Considering the social function of each particular type of insurance is important, however. The more the social function of a special type of insurance – such as health insurance – is critical to guaranteeing equality of opportunity, the less the undiluted implementation of actuarial fairness will be compatible with providing the full social benefits of insurance: ‘To the extent that our society decides that insurance companies should have a public redistributive role, the nature of insurance as good changes and the rules of equity of the marketplace may no longer apply’ (Lemmens, 1999: 34).60 Health and life insurance differ, for example, from motor insurance if only because ‘provision for illness and dependants, access to accommodation and the possibility of earning one’s living are not optional activities like driving. The availability of health, life and unemployment insurance is basic to people’s ability to lead their lives’ (O’Neil, 1997). They also differ in the fact that although risk-based motor insurance may be socially beneficial, because risk classification sends a useful signal that the insured can act upon to prevent loss, health and life riskbased insurance classifications are potentially destructive to the safety net (Baker, 2002a). Deregulation of insurers’ access to genetic information: a free insurance for insurers? Anti-selection, or adverse selection, has been classically defined as ‘the tendency of persons with private and accurate beliefs about their high risk to transfer risk more extensively than persons with low risk or without private and accurate beliefs’ (Akerlof, 1970). Adverse selection arises in situations of asymmetric information, when insurance seekers are allowed not to disclose certain high risks to insurers. To use a typical example, when insurance seekers are legally permitted not to disclose genetic test results showing that they are at special and above average risk of developing a serious disease or dying prematurely, they may be tempted to subscribe to significant amounts of private health and life insurance, the insurer being prevented, by a forced genetic ignorance, from charging them higher premiums that would reflect their increased risk. Arguments against restricting access to, and use of, genetic information by insurers over-emphasises the risk of adverse selection that would arise from genetic information asymmetry. Empirical studies of the potential for adverse selection based on genetic information on the life insurance market has shown,

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for example, that women who have tested positive for the BRCA1 gene mutation do not capitalise on their informational advantage by purchasing more life insurance than those women who have not undergone genetic testing (Zick et al, 2000). As pointed out by Béatrice Godard and colleagues, ‘There is an element of speculation involved in the possibility of adverse selection due to the information provided by genetic tests. Only about 5 per cent of diseases are caused by a single gene. Most are caused by interactions between many genes that are subtle and difficult to determine. Consequently, only individuals with mutations for late-onset untreatable diseases will be able to deceive the industry. The number of such diseases will probably also be reduced as treatments will be available for these diseases’ (Godard et al, 2003: 130). Moreover, Seth Chandler has convincingly demonstrated that the extent to which asymmetric information results in the feared adverse selection behaviours is not a purely mechanical consequence of the subsidisation of high-risk individuals by those at low risk (Chandler, 2001–2).61 Assessing expectations of accurate genetic tests for the most widespread diseases and the relevance of those tests to insurance underwriting Whether the encounter of genetics and insurance poses a risk of adverse selection to insurers, and one of genetic discrimination to prospective policyholders, is also contingent upon the actuarial relevance of genetic information. Even when a genetic test has a high level of accuracy and the test is of significant medical relevance, a genetic test does not always provide actuarially useful information for all types of insurance. Mark Rothstein recently summarised this point with regard to life insurance: To be valuable for medical underwriting in life insurance, a test result must be linked with a statistically significant increased risk of developing a potentially lethal, adult-onset disorder, and clinical or actuarial data of the effect of the mutation on mortality risk must exist. As most genetic tests were developed in the last decade, little mortality data are available except for those derived by extrapolation. With the shift in research focus from monogenic to complex disorders, environmental influences will become increasingly important but difficult to factor into mortality calculations. Furthermore, the longer the latency period before onset of symptoms, the more speculative the estimate of mortality risk becomes, because of inability to predict intervening medical discoveries that could ameliorate the condition and thereby change mortality calculations. (Rothstein, 2004b: 233) In any case, a genetic test result indicating increased risk of premature death

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with a certain degree of precision may have opposite meanings for life insurance and for old age/pension insurance. A test result indicating a higher risk of developing a late-onset disease and dying around the age of 80 is obviously not a relevant factor in assessing a 20-year-old policy-holder’s risk of dying in the next five years.62 The European Society of Human Genetics states that ‘[I]t is difficult to predict the extent to which genetic tests become relevant for health prediction in complex diseases, and even more difficult to predict the extent of the influence and timing of such advances in knowledge. Sound knowledge of the real predictive value of the information must be validated before such tests are put into both clinical and insurance practice’ (European Society of Human Genetics, 2000b: 2). Notwithstanding this evaluation, confidence in the power of new genetics makes most institutions and scholars alike assume, not only that rarer single gene disorders will soon be detectable at presymptomatic stage, but also that reliable predictive genetic testing will be developed for multifactorial diseases. From that scenario, and from a presumption of the decreased costs of genetic testing, they conclude that larger groups of the population will undergo genetic testing and screening and acquire knowledge of their genetic risks. A typical statement is that emerging chip technology will enable tests to be done for many hundreds of sequences at a time, thus allowing information relating to many conditions to be elicited. Indeed, more genetic information will probably become available in the near future, but the quantity of genetic information available will not necessarily result in its increased predictive power. No highly penetrant alleles have been found for common diseases such as diabetes, hypertension, asthma or arthritis. The translation of genetic data into reliable and actuarially relevant health risk information will require more than a greater amount of available genetic data.63 The assumption that genetic tests will exist for an increasing number of conditions, and that their cost will decrease, may be well-founded and is often made in the literature.64 But tests that will develop to identify a variety of genetic variations among individuals will not decrease the complexity of interpreting those variations in terms of actuarially pertinent quantifiable probabilities. Genetic information cannot be directly translated into truth about what specific conditions will be experienced by individuals. The more research advances, the more complex the relationships between genotype and phenotype appear. ‘Lumping people together, without regard for environmental differences that are known to be relevant, may generate misleading statistics that portray the risks for some individuals as being much higher than they actually are’ (Kitcher, 1996: 131). Whereas genetic information may be clinically relevant, allowing, in specific cases, some forms of preventive or mitigating strategies to be put in place, it is not automatically actuarially relevant. A further difficulty is that genetic risks may have radically different meanings from other health risks, precisely

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because of the responsible attitude that genetic risk information is expected to inspire in those found to be at risk. Newly available genetic tests (sometimes offered directly on the market),65 enabling asymptomatic individuals to gain increasingly sophisticated knowledge of their disease, disability and premature death risks, are marketed and advertised as empowering individuals by providing them with the information needed to lead a more autonomous life by making rational, genetically informed choices. Genetic information generates, for the individual, a duty (which is moral rather than legal) to comply, at an individual level, with the principle of precaution. And precaution, as François Ewald suggests, ‘to a certain extent, brings us out of the age of insurance companies. It creates a world in which, in principle, compensation no longer has meaning, because the only rational attitude is to avoid the occurrence of a threat with irreversible consequences. Precaution is an attitude of protection rather than compensation’ (Ewald, 2002: 298). As a matter of fact, genetic risks, unlike other insurance risks, comply less with the insurance logic of compensation and capitalisation than with a logic of prevention (Lemke, 2004: 552). The ensuing paradox, which further increases the complexity of using genetic test results in insurance underwriting, is that a person who tested positive for a genetic susceptibility to specific polygenic, multifactorial disease may, in fact, be at lower risk of developing the disease than a person who has not taken a genetic test. The ‘positive’ person may, with a view to preventing the onset of the disease, undergo frequent testing and benefit from early medical intervention, thus increasing her survival chances and minimising the probability of expensive treatments for advanced-stage diseases. Acknowledging that inciting policy-holders to undertake genetic testing makes good financial sense, a German health insurance company (The Kaufmannische Krankenkasse (KKH)) even decided in 2004 to offer free genetic testing for haematochromatosis to its customers. This condition, causing the body to absorb too much iron from the diet, may cause symptoms that include chronic fatigue, liver damage, diabetes, abdominal pain, heart problems, joint pain and bronzing of the skin. It can be treated by regular removal of blood and a reduced-iron diet. Identifying patients with the two copies of the gene involved in the production of the disease may prevent the need for later dialysis or liver or kidney transplant. The company calculated that the average cost of treating someone with advanced haematochromatosis is
100,000, while the cost of a genetic test for the condition is
14,000. In order not to discourage its customers from taking the test, the company decided not to be informed of the test results, which were thus disclosed exclusively to the policy-holders who opted for the test.66 Predictive genetic information, except when it relates to rare monogenic diseases such as Huntington’s disease, differs from HIV status information, which is predictive of future AIDS-related diseases. In the case of a positive genetic test indicating a specific susceptibility or predisposition, much can

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sometimes be done to avoid becoming ill or disabled. In most cases, genetic information merely provides indications of predispositions or susceptibilities to relatively widespread polygenic and multifactorial diseases such as breast, ovarian or colon cancer, some types of depression, familial hypercholesterolemia. . . . The importance of genetic information for the insurance industry, and the benefits that would accrue to the industry as a result of deregulating access to genetic information are, in my view, over-emphasised by supporters of deregulated genetic information flows in insurance. Insurance companies already ask family history and lifestyle questions anyway to discriminate high- and low-risk individuals, and to exclude some persons from insurance. Access to genetic information would not drastically change the situation of insurers in this regard. The transposition of genetic information into actuarially relevant risk information is thus more complex than it seems at first sight, and this complexity is unlikely to decrease in the near future. A further reason to avoid taking the notion of genetic risk for granted results from the unavoidably incremental process of scientific and technological advances.67 When relative risks are identified by reference to genetic test results, the risks taken into account are only those for which genetic tests have been successfully developed. Using genetic risk information in insurance or employment would thus irrationally discriminate between people having contracted insurance or having been hired by an employer before the emergence of new genetic testing possibilities on the one hand, and, on the other hand, newcomers, people applying for employment or insurance after these new possibilities have been made available. The criteria for genetic selection of employees or policy-holders are based on a certain state of genetic knowledge. The mere fact that genetic tests exist for some ailments and not for others (which may be as invalidating as the detectable ones), may render unfair a selection based on available predictive genetic tests.68 The state of science – resulting partly from research agenda reflecting present social and economic power relations and structures, and prejudices about racialised groups69 – is not a fair, rational, decisive factor to establish risk classifications and to justify disparate access to social goods such as insurance. To conceive it as a decisive factor would result in confusion between descriptive and normative levels. The question involves the issue of mistake, as described by Jacques Lacan: It is well clear that mistake is only ascertainable in terms of truth. I mean not the white-black opposition, there would be no white if there was no black; it is not about that. No! In the same way as the lie imposes, literally, in order to be sustained and followed, the constitution of truth, that lie presupposes the truth to be known in a certain way in its full rigor, and well installed, and even that one construct it (truth) increasingly for sustaining the lie, the problem is of a lesser degree as far as

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mistake is concerned. But the relationship is no less intimate in this sense that there is, by essence, no mistake that is not posited and taught as truth. Without that, it would not be a mistake! To say it all, mistake is (if one can say so) the common and usual incarnation of truth. And if we want to be completely rigorous, we will say that as long as the truth is not entirely revealed – that is, most probably, forever – it is its nature to be propagated in the form of mistake. And things should not be pushed much further for us to see, even there, a constitutive structure of the revelation of being as such.70 The impact of subjective factors on adverse selection Adverse selection mechanisms also depend upon subjective factors that determine the demand for insurance by people at risk. Those factors include the gap between actual risk incurred by the individual and his/her perception of that risk on the one hand, and his level of risk aversion on the other. Risk aversion levels seem generally higher when health insurance is considered than with regard to life insurance, for example. A factor of equal significance is that the demand for a disproportionate amount of insurance by bad genetic risks would also depend on how each specific insurance is perceived in society: when insurance is conceived as a private financial arrangement, an investment from which policy-holders expect profit, the risk of adverse selection is higher than if insurance is primarily conceived as a means of guaranteeing access to health care or a survival grant for the policyholder’s next of kin. The representation of individual motivations, provided by law and economics scholars such as Posner and Epstein,71 is not necessarily the most realistic, particularly in the context of the partial dismantling of compulsory social insurance schemes where private health insurance becomes increasingly perceived as a necessary means of accessing health care. The case may be that the social and political perception of private health insurance as a good that guarantees access to the basic good of health, rather than as a financial product, may reduce the risk of adverse selection. Due to their variations in those factors, all kinds of insurance markets are not equally vulnerable to adverse selection.72 Regulatory factors impact on adverse selection: contrasting insurers’ and public policy rationales behind the doctrine of ‘moral hazards’ The degree to which adverse selection arises also depends on regulatory factors, and especially those regulatory factors designed to minimise the risk of moral hazards in insurance. Moral hazards have been defined by Arrow as ‘the effect of insurance on incentives’ (Arrow, 1963). Prevention of moral hazards in insurance responds to the moral and public policy concern that insurance should not impact negatively on incentives for policy-holders to behave carefully and to avoid, as much as possible, the losses against which

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they are insured (Baker, 1996). The principle of symmetrical information grounding the obligation of full disclosure has been designed as one of the tools to prevent moral hazards. The birth of actuarial techniques in the nineteenth century shifted the status of insurance from interference with divine destiny, to the status of instrument of protection and moralisation through exhortation to prudence. Especially in the presence of insurance, this bad thing – risk – was attributable, not only to the interaction between fate and the material world, but also to the moral weakness of individuals. This understanding of the insurance risk may explain how it was that insurance institutions came to engage in disciplinary practices. If risk was in part a product of moral weakness, one way to reduce it was to attack that moral weakness. The tools were classification and exclusion (of immoral insureds and of especially tempting kinds of insurance coverage), inspection (of prospective insureds and insurance claims . . .), and exhortation (to agents, adjusters and insureds) – all with the aim of shaping individuals into normal, predictable bundles, so that the rates charged today would be sufficient to cover the claims of tomorrow. (Baker, 2000: 11) One may suspect that, with the passing of time, a substantial discrepancy has come to exist between the conceptualisation of moral hazards by insurers and the public policy rationale behind the doctrine. From what one reads of insurers’ arguments in support of their claim that they need genetic insights, one understands that, for insurers, ‘moral hazard’ arises each time the subjective valuation of risk by a policy-holder is inferior to the benefits to be paid by the insurer where the insured damage occurs. Moral hazard, in that view, is what causes adverse selection and the ensuing loss for insurers. Thus from the insurers’ point of view, ‘one of the most important purposes of the risk classification process is to protect insurers against adverse selection’ (Meyer, 1993: 1,289). From the standpoint of public policy, ‘moral hazard’ refers to a situation where the subjective value of risk is inferior, not to the insurer’s cost of paying contractually agreed benefits when the loss occurs, but to the objective or social value of that risk. The fundamental goal of the theory of moral hazard, from a public policy perspective, is not the profitability of insurance companies, but the minimisation of the net amount of aggregated losses in society. As a consequence, insurance is only beneficial to society as a whole whenever insurance mechanisms (particularly risk classification) do not result in an increase in the net incidence of losses by reducing policy-holders’ incentives and capabilities to prevent such losses (Arrow, 1963; Baker, 1996, 2000). Preventing adverse selection is thus not necessarily a goal that public policy should prioritise over alternative policy options: it is a priority for public

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policy only to the extent that it plays an instrumental role in minimising social harm. The idea I wish to defend against the ‘actuarial orthodoxy,’ and the rigid application of the principles of ‘actuarial fairness,’ is that whenever risk classification results in increased net social losses, the role of public policy is not to sustain that risk classification. One other way (besides informational symmetry) of preventing the negligence of socially harmful policy-holders is to provide that benefits that would accrue to the policy-holder in case the covered adverse event – that is, the payments made by the insurance company whenever a claim is being made – will never exceed the value of the loss to the policy-holder. The maximum amount of insurance that can be lawfully obtained is thus regulated: the amount of life insurance that can be purchased, for instance, is generally much higher than the amount of health insurance that can be purchased. Indeed, that policy-holders would take the risk of dying prematurely because they hold life insurance is obviously less likely than the propensity of people with health insurance to increase their consumption of healthcare by going more often to the medical doctor, and buying more and more expensive medication. Regulations defining the maximum amount of insurance that can be purchased thus also impact on the probability of adverse selection. Yet those who are against regulation of genetic information flows in insurance, seeing insurance essentially as a financial commodity, sometimes also argue that strict regulation of the maximum amount of insurance that can be legally purchased unfairly and inefficiently restricts the purchase opportunities of the ‘good risks’. A third way to help avoiding the disincentive impact of insurance on prevention is a requirement that ‘the event against which insurance is taken be out of the control of the individual’ (Arrow, 1963). Using the moral hazard theory, Epstein argued that pregnancy, for example, is a poor candidate for insurance because it is largely controlled by the insured person: insuring its costs would thus make women more likely to become pregnant.73 Yet, as has just been argued, from the viewpoint of public policy, justification of the moral hazard theory does not only rest upon the financial interests of insurers (or employers, in the case of group insurances provided by employers). In this regard, perceptions of insurers contrast with economists’ insights: whereas insurers tend to conceive the theory of moral hazard as exclusively concerned with adverse selection and the ensuing loss of profitability of insurance business, economists describe the theory as wealth maximisation for the society as a whole. The concern of public policy is that insurance provision should not, by reducing policy-holders’ incentives to minimise their losses, result in a net increase of losses in society in a manner that would be detrimental to the general social welfare. The question remains what, among the costs over which an individual has control and those that he could to a certain extent, have avoided, should be understood as a loss detrimental to society as a whole.

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Considering any cost born by individuals and shifted to insurance as a social loss may be misleading. The costs of pregnancy, for example, may hardly be conceived as a loss, from a societal perspective, especially in countries with low birth rates, yet the costs involved in pregnancy do, from an insurer’s point of view, constitute a loss. One may usefully remember here that natality, in Hannah Arendt’s terms, is the source par excellence of revolution, disalienation, liberty, risk and alteration. Birth prevents political institutions and social structures from becoming petrified: The miracle that saves the world, the domain of human affairs, from the normal, natural ruin, is finally the fact of natality, in which, ontologically, the capacity to act is rooted. In other words: it is the birth of new men, the fact that they begin anew, the action they are capable of rightfully by reason of their birth.74 Notwithstanding its apparent value neutrality, the implementation of the moral hazard theory by insurers involves implicit cultural and political value assessments. The same individual choice may be characterised, depending on the cultural, social and economic context where it is made, as either a moral hazard or a moral opportunity. The reconceptualisation of pregnancy as a moral hazard attests to the deep impacts that the institutions of language, communication and interpretation have, not only on wealth creation and wealth redistribution,75 but also on the orientation of lifestyles in general. Non-discriminatory policies are primarily aimed at protecting individuals from being discriminated against for reasons outside their control, but nondiscrimination protection may also be intended to protect certain choices, including the reproductive choices of individuals, and to ensure that individuals will not be sanctioned for having made those choices. As Olivier De Schutter rightfully observes, insofar as those choices constitute the legitimate exercise of fundamental rights or freedoms, they should be free from any kind of pressure or compulsion (De Schutter, 2001: 42), including the fear of losing access to insurance. This argument counters the strict application by insurers of the requirement that covered events are necessarily outside the control of individuals. The fact that insurance allows individuals to ‘take risks’ contributes to the social utility of insurance. The requirement that the event covered by insurance be out of the control of the individual is also particularly problematic in the genetic context. Following a genetic test, individuals are expected to take the ‘rational’ decision to control, as much as possible, the adverse outcomes that are partially foreseen by genetic test results. In that case, far from being a risk in the sense of an insurance risk outside the control of the policy-holder, genetic disease or disability is something the individual and the collectivity might be considered responsible for. As a consequence of the continuing genocentric conception of so-called

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genetic diseases – the onset of a multifactorial disease will unfortunately be more often interpreted as a consequence of the victim not having complied with her duty to behave responsibly in taking the recommended preventive procedures,76 than as society’s failure to provide an environment that is safe for everybody, given human genotypic variety. As Imaculada de Melo-Martín argued, ‘[S]ocial transformation can go a long way toward curtailing the possible limitations that biology might impose on human beings’ (de MeloMartin, 2003). As already emphasised, because the shift away from the central genocentric dogma in biology has rarely been acknowledged outside laboratories, the genetic elements of the complex dynamic molecular networks involving relations among genes, enzymes, non-cellular structures and the environment remains quite arbitrarily conceived as the main, if not the exclusive, cause of disease or disability. Insuring insurers against any potential adverse incidences of advances in genetic technology? Both the interest of insurers in genetic information and the risk of adverse selection based on asymmetrical genetic information are uncertain. The underestimation of incalculable uncertainty and its disguise as calculable risk seem inspired by the willingness to guarantee, against any eventuality, the prosperity of the private insurance industry. Despite Richard Posner’s somewhat counter-intuitive complaint that ‘in the perspective offered by economics and by the common law, the recent legislative emphasis on favouring individual and denigrating corporate and organisational privacy stands revealed as still another example of perverse government regulation of social and economical life’ (Posner, 1984: 345), deregulating genetic information in insurance – in anticipation of a genetic information era – would in fact amount to providing free insurance, of the kind Martha McCluskey has called a new social insurance, to wealthy capital interests.77 Insurers would be protected against any potential adverse effects that the development of genetic science might have on their financial wealth. Such free insurance of insurers constitutes a net subsidy in favour of the industry, the costs of which are to be borne by those who will be excluded from insurance. All this confirm Johnson’s colourful description of the situation: Current thinking in the libertarian mould tends to incorporate a kind of social Darwinism into economic theory, whereby only the strong survive. Improved efficiency is a must for any company if it is to prosper and this is simply hard economic fact which must be faced devoid of sentiment . . . there is something of the selfish gene in all of this where the continued survival of the company comes to be seen as an end in itself, any further consequences become secondary to this rime directive of survival. (Johnston, 1999: 81)

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Yet, once again, where the interest of citizens rather than of industry is concerned, compulsory, universal health insurance schemes are arguably better able to deal with the uncertainty inherent in contemporary and future biotechnological developments than private schemes. Insurance schemes involving some income redistribution – of which universal social insurance schemes are the only viable archetype in genuinely competitive insurance markets – provide everyone with insurance against the risks of future adverse classification. The shift of security from individuals to enterprises and companies blurs the opposition between deontological and consequentialist arguments. Whereas deontological conceptions of rights have traditionally imposed a limit on utilitarian calculation, the current argument that the maximisation of enterprises’ profit is instrumental to fulfilling citizens’ basic needs silences rights discourses.

C. Assessing the potential impact of genetic differentiation in insurance on moral hazards There is a substantial logical contradiction between the use of genetic information in private insurance and the desire to promote people’s genetic literacy and genetic responsibility. Notwithstanding the enduring disparities between the possibilities of prediction offered by genetic screening and testing, and the unfulfilled promises of prevention and cure for genetic conditions, the notion of genetic risks follows not so much a logic of compensation and capitalisation as a logic of avoidance, prevention and reduction (Lemke, 2003, 2004, 2005; Weir, 1996). The classical economic principle described by Stiglitz (1983: 6) grounding the pure theory of moral hazards in insurance is that ‘[t]he more and better insurance is provided against some contingency, the less incentive individuals have to avoid the insured event, because the less they bear the full consequences of their actions’. It also means that ‘the more completely people are protected from loss, the more social resources are consumed by loss’ (Baker, 2002a). The ‘moral’ imperative justifying insurers’ struggle against moral hazards – ‘[I]n order not to produce more social bad than good, and thus, in order to produce social benefits rather than social damages, insurance should avoid creating moral hazards’ (Baker, 1996: 239) – conditions in part public support to the industry. In the case of genetics, however, the contrary seems to be true, as it is not the provision of insurance and the spreading of loss arising from genetic causes that would decrease incentives for individuals to avoid adverse insured events (illness, disability . . .). Instead, the threat of being deprived of insurance at affordable prices will make them avoid taking genetic tests that could have been useful in preventing or mitigating the adverse outcomes of genetic susceptibility or predisposition or in avoiding a future loss. This is the information dilemma Arrow (1994) referred to: ‘Improved prognosis is frequently

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beneficial to the patient or potential patient . . . But in the . . . system of medical insurance, prognosis may be costly to the patients in terms of medical insurance premiums, denial of coverage, and inability to get new jobs.’ Partial regulation, allowing genetic risk-based classifications in insurance, risks creating a disincentive impact on people’s willingness to take genetic tests, as some would probably refrain from taking genetic tests that would have been beneficial to their health, fearing the adverse impact that their duty to disclose such test results would have for them in terms of insurance.78 There also seems to be a contradiction here between the fundamental assumption that genetic tests will be widespread among the general population (a presumption that is fundamental to the claim by insurers that they will suffer severe adverse selection if they remain deprived of genetic insights) and the prospect that genetic discrimination in insurance will probably discourage people from taking such tests. Avoiding discouraging individuals from undergoing medically useful genetic tests is arguably a more important goal for public policy than protecting the insurance industry against risks of genetic adverse selection.79

D. Assessing the proportionality of genetic inquiry in underwriting The belief that genetic information is necessary for the operation of insurance prompts some authors to present access to genetic information about insurance subscribers and policy-holders as a prima facie right of insurers.80 Laws and regulations of genetic information in insurance are, in this view, an intrusion by governments in the normal state of affairs in which insurers may access any personal information that is actuarially relevant. The right or, more precisely, the legitimate interest of insurers in accessing genetic information should be nuanced, however. As the European Commission’s Committee of Experts on Medical Examinations Preceding Employment and/or Private Insurance observed: [I]t is generally acknowledged that the insurance industry does have a legitimate interest in making an assessment of the magnitude of the risk for which insurance cover is sought . . . Nevertheless, the insurance company’s right to collect information on the person applying for insurance no longer goes undebated. The key issue would seem to lie not so much in the relevance, necessity, and validity of these examinations (although of course they should meet these standards), but rather in their proportionality. When does the right to enquiry of an insurance company encroach disproportionately on the rights of the applicant? (European Council Health Committee, 1999: 21) Given what has been said in the previous pages, the use of genetic information

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for underwriting purposes might not pass the proportionality test as the obvious social costs ensuing from a rule that would oblige prospective and current policy-holders to disclose genetic information to insurers (including the disincentive impact of such a policy on people’s willingness to take medically useful genetic tests) outweigh the probably limited financial benefits that would accrue to insurers should they be allowed to gain genetic insights. INTERMEDIATE SUMMING UP

The arguments typically raised against international, regional and national policies restricting the use of genetic information by private insurers display several shortcomings. Regarding the arguments derived from ‘contractual freedom’, evidence has been provided to support the case that commodification of personal information in general, and of genetic information in particular, which ensues from a situation where consumers are encouraged to barter personal and private information for advantages in a market relationship with providers, amounts to a strategy intended to decrease individual privacy while increasing governmental and organisational opacity, under the pretext of improving efficiency. As a matter of fact, in the insurance context, the principle of ‘symmetry of information’, fundamental to the doctrine of contractual freedom, usually entails the full disclosure of relevant facts about individual policy-holders to insurers, and an obvious lack of transparency by the insurer. Moreover, the assumptions that private insurances are commodities or financial arrangements between an insurer and the policy-holders, ruled by the principle of contractual freedom, and that private insurance is in this regard similar to any commercial contract between a willing seller and a willing buyer, in which the state should abstain from interfering without compelling reasons, have been dispelled. Contrary to these assumptions, an insurance contract is in fact different from other kinds of commercial contracts: it is a contract by which individuals adhere to a community ruled by the principle of ‘actuarial fairness’. In such a perspective, the genetic individualisation of risks for insurance purposes raises a series of problems. It has also been argued that, because insurance contracts are limited social contracts, the principle of ‘actuarial fairness’ can and should be adapted to the common views of justice shared by the community of policy-holders. Besides, reviewing the issues raised by the encounter of genetics and private insurance demands that a distinction be made between the different types of insurance (health insurances, insurances subscribed in provision for old age, life insurance, . . .).81 No type of insurance, even provided privately, is always easily conceptualised as pure consumption goods. The benefits insurance provides are sometimes needed by individuals to fulfil their basic needs in life and to achieve equality of opportunity. Thus states are justified in regulating and limiting the conditions upon which insurance is provided, if only because pure contractual

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freedom in the field of basic insurance would leave policy-holders in an unavoidably disadvantageous bargaining position vis-à-vis insurance companies. Regarding basic insurance, systems have been implemented in several countries, either by law or by the voluntary commitment of the insurance sector, that mitigate both the risks of adverse selection and of the exclusion of ‘high risk’ individuals from necessary basic insurance. These systems usually provide that, for policies up to a certain amount, genetic information should not be disclosed to insurers. Those systems establish a form of solidarity in mutuality-based insurances. They are unsatisfactory, however, when they focus exclusively on genetic information. If basic insurance is considered, in any given society, as a basic good, it should be universally available. Given what has been said earlier about the misleading trope of the ‘genetic underclass’, one cannot imagine a rational justification for restricting the prohibition of risk differentiation to genetic risks. Having discussed insurers’ fear of ‘adverse selection’, I have shown that a public policy that would prioritise the prosperity of the private insurance sector over the guarantee that all people receive the basic insurance they need, on the ground that the private insurance sector has now partially replaced the public sector in its role of supplying basic insurance, tends to confuse the notions of actuarial and social justice. Alternatively, such an approach reduces social justice to the mere gratification of natural assets, thereby perpetuating hierarchies and social stratifications and excluding concern for equality of opportunity from the notion of social justice. Moreover, claims that the insurance industry would collapse absent a deregulation of genetic information flows are, I have also argued, much exaggerated. Whether in fact the insurance industry would suffer from adverse selection if bans on genetic underwriting were not repealed is uncertain, given the multiple and complex factors that may impact on adverse selection. Allowing insurers to gain genetic insights, however, would provide a kind of free insurance to insurers against any potential adverse outcome resulting from biotechnological developments and consumer behaviours. The cost of such free insurance would be undergone by those deprived of insurance in such a system, and would ultimately drain state resources, as people with costly genetic diseases will have exhausted their private financial resources upon medical care.82 Deregulation of genetic information flows would also negatively impact on incentives for members of the general population to take potentially useful genetic tests. This would run counter to one of the basic assumptions that frame the whole discussion of genetics in insurance: that genetic testing will become routine and generalised in the population. Finally, genetic information requests by insurers would probably be incompatible with the emerging rule of proportionality in pre-insurance examinations. Suggestions for deregulation of genetic information flows in the socio-

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economic contexts of insurance and employment are thus only valid, it seems to me, within a society – or a system – whose members would have democratically chosen to live under neoliberal rules only marginally (if at all) mitigated by concerns for values alien to their efficiency maximisation. In such a society or system, the genetic transparency of people is believed to increase the efficiency of resource allocation, while genetic opacity (that is, a rule of non-disclosure of genetic information outside the healthcare context) will lead to sub-obtimal allocations. Neoliberal doctrine indeed claims that wealth maximisation requires that most resources be allocated to those who will make the most of them. Accordingly, Diver and Cohen (2000–2001) write that ‘the effort to ban genetic discrimination within insurance and employment markets would, if successful, cause significant welfare losses due to the distortion of allocative efficiency’.83 More precisely, the Kaldor–Hicks efficiency principle requires that resources be allocated so as to produce aggregate gains outweighing aggregate costs. A distribution is efficient, according to that principle, even though some individuals may be worse off, the pattern of wealth distribution being analytically irrelevant under this scheme.84 The principle of equality of opportunity, on the contrary, requires that no-one should have his opportunity reduced for reasons independent from his choices and efforts. The question remains whether one may consider that we live in a society whose members have democratically chosen to live under neoliberal rules. The use of genetic information outside the strict clinical or scientific research context thus raises issues at different levels. It not only presents concerns of equality of opportunity, it also impacts, and potentially crushes, collective political decision-making about the basic structure of society. The question thus immediately arises whether specific genetic privacy and genetic non-discrimination legislation – genetic exceptionalist legislation – provides valid solutions.

Notes 1 The Shidler Center for Law, Commerce and Technology recently organised a conference on exactly that theme: ‘Is consumer protection an anachronism in the information economy?’, Friday 4 March 2005, William H Gates Hall, University of Washington School of Law. 2 Yet, the non-psychic conditions of individual autonomy are often recalled by modern liberal theorists. See Roberts (2001: 60). 3 See for example Wacks, (1980: 73–5). 4 See Posner (1978; 1984), and Bennett (1995). For a critique of Posner’s views on privacy see Baker (1978). 5 As stated by Ferdinand Schoeman, there are numerous grounds for puzzling over the significance and value of privacy. ‘The right to privacy is seen as creating the context in which both deceit and hypocrisy may flourish: It provides the cover under which most human wrongdoing takes place, and then it protects the guilty from taking responsibility for their transgressions once committed’ (Schoeman, 1984).

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6 On that question, see Fisk (2002). 7 See Farnsworth (2002). 8 See for example Tom Miller, Director of Health Policy Studies, Cato Institute, Testimony on Genetic Privacy, before the House Judiciary Subcommittee on the Constitution on Genetic Privacy, 12 September 2002: ‘Rather than rely on greater regulation of information flows simply because they are labeled genetic, we should restore and renew our commitment to competitive markets, private property rights, and private contracts’ (http://www.house.gov/judiciary/ miller091202.htm#_edn11>). 9 Lochner v New York, 198 US 45 (1905). 10 West Coast Hotel Co. v Parrish, 300 US 378, 57 S. Ct. 578, 81 L. Ed. 703 (1937). 11 Adkins v Children’s Hospital, 261 US 525, 43 S. Ct. 394, 67 L. Ed. 785 (1923). 12 United States v Carolene Products Co, 304 US 144, 58 S. Ct. 778, 82 L. Ed. 1234 (1938). 13 Griswold v Connecticut, 381 US (1965). 14 Roe v Wade, 410 US 113 (1973). 15 Griswold v Connecticut, 381 US 479, 493 (1965). 16 Moore v City of East Cleveland, 431 US 494, 503 (1997). 17 Snyder v Com. of Massachusetts, 291 US 97, 105, 54 S.Ct. 330, 332 (1934). 18 Bowers v Hardwick, 478 US 186, 194 (1986). 19 ‘. . . the sole end for which mankind are warranted, individually or collectively, in interfering with the liberty of action of any of their number, is self-protection. That the only purpose for which power can be rightfully exercised over any member of a civilised community, against his will, is to prevent harm to others. His own good, either physical or moral, is not sufficient warrant. He cannot rightfully be compelled to do or forbear because it will be better for him to do so, because it will make him happier, because, in the opinion of others, to do so would be wise, or even right . . . The only part of the conduct of anyone, for which he is amenable to society, is that which concerns others. In the part which merely concerns himself, his independence is, of right, absolute. Over himself, over his own body and mind, the individual is sovereign’ (Mill, 1859). 20 Lawrence v Texas, 539 US 558 (2003). 21 Lawrence v Texas, 539 US 558 (2003). 22 Mahler v Roe, 432 US 464 (1977). 23 Beal v Doe, 432 US 438 (1977). 24 Poelker v Doe, 432 US 519 (1977). 25 Harris v McRae, 448 US 297 (1980). 26 In particular, European Union (1995, 2002, 1997). 27 Even in the New-Deal era, after Lochner v New York, 198 US 45 (1905) had been overruled by the Supreme Court, the presumption of constitutionality that had been attached to economic regulation under the state’s power never did create any individual right or entitlement against a state who failed to act to prevent or punish a violation of fundamental rights occurring between private parties. 28 In 1861 Henry Sumner Maine famously wrote that ‘the movement of the progressive societies has hitherto been a movement from Status to Contract’ (Maine, 1861). 29 See Tribe (1985). For a discussion on the issue of alienability of rights under the European Convention of Human Rights, see De Schutter (2000). 30 Since the 1981 judgment in Young, James and Webster v United Kingdom (ECHR, 13 August 1981, Series A, No 44) the European Court on Human Rights acknowledges a horizontal effect to the Convention, extending the scope of protections to relations between private parties: §49: ‘Although the proximate cause of the events

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giving rise to this case was [an agreement between an employer and trade unions], it was the domestic law in force at the relevant time that made lawful the treatment of which the applicants complained. The responsibility of the respondent State for any resultant breach of the Convention is thus engaged on this basis’, cited by De Schutter, 2000: (481–508). Through this horizontal effect of the Convention, fundamental rights seem to gain positive effectiveness. The matter is highly controversial, however, just as controversial as the question of the conception of privacy either as a mere privilege or as a (subjective) right. See also X and Y v Netherlands, 8978/80 (1985) ECHR 4 (26 March 1985), Series A, vol 91: ‘although the object of Article 8 (art 8) is essentially that of protecting the individual against arbitrary interference by the public authorities, it does not merely compel the State to abstain from such interference: in addition to this primarily negative undertaking, there may be positive obligations inherent in an effective respect for private or family life (see the Airey judgment of 9 October 1979, Series A no 32, p 17, para 32). These obligations may involve the adoption of measures designed to secure respect for private life even in the sphere of the relations of individuals between themselves.’ Niemietz v Germany, 13710/88 ECHR 80 (18 December 1992) Series 1, vol 251B: ‘The Court does not consider it possible or necessary to attempt an exhaustive definition of the notion of “private life”. However, it would be too restrictive to limit the notion to an “inner circle” in which the individual may live his own personal life as he chooses and to exclude therefrom entirely the outside world not encompassed within that circle. Respect for private life must also comprise to a certain degree the right to establish and develop relationships with other human beings.’ X and Y v Netherlands, 8978/80 (1985) ECHR 4 (26 March 1985), Series A, vol. 91. Gaskin v United Kingdom, 10454/83 (1989 ECHR 13 (7 July 1989) Series A no. 160. Beldjoudi v France, 12084/86 (1992) ECHR 42 (29 March 1992). Lemmens (1999). European Group on Ethics in Science and Technology (2003). According to Ernst Cassier’s summary of the heritage of the seventeenth-century British thought, ‘there is, at least, one right that cannot be ceded or abandoned: the right to personality. Arguing upon this principle the most influential writers on politics in the seventeenth century rejected the conclusions drawn by Hobbes. They charged the great logician with a contradiction in terms. If a man could give up his personality he would cease being a moral being. He would become a lifeless thing – and how could such thing obligate itself – how could it make a promise or enter into a social contract? This fundamental right, the right to personality, includes in a sense all the others . . . There is no pactum subjectionis, no act of submission by which man can give up the state of free agent and enslave himself. For by such an act of renunciation he would give up that very character that constitutes his nature and essence: he would lose his humanity’ Cassier (1963), 175, cited in Ellerman (1993). The expression inalienable right is somewhat polysemic. In common language, it designates a right that may never be taken away from the person. In more technical terms, and as I will use the expression, inalienable rights are rights that cannot be waived or transferred by their possessors (McConnell, 2000). Singleton (1998) noted that ‘[S]cholars in the area of medical ethics have long explored the idea of privacy as one’s right to give consent before information about oneself is relayed to third parties, a context where the idea clearly makes

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sense’, and cited Beauchamp (1994:410): ‘[R]ights to privacy are valid claims against unauthorised access that have their basis in the right to authorise or decline access. These rights are justified by rights of autonomous choice . . . expressed in the principle of respect for autonomy. In this respect, the justification of the right to privacy is parallel to the justification of the right to give an informed consent.’ ‘The domino theory asserts that market evaluations of objects and activities are imperialistic, driving out other and better ways of perceiving and evaluating objects and activities. Once some individuals attach a price to a given object, relation or activity, they and others tend to lose their capacity to perceive or evaluate that object, relation or activity as anything but a commodity with a specific market price. Moreover, the theory asserts, once certain objects or activities are commodified, there is a tendency for other objects or activities of the same sort or even of other sorts also to be seen and evaluated merely in terms of their actual or potential market value.’ In the same perspective, it has been noted that ‘. . . in some circumstances a prohibition . . . may be an essential part of a program of distributive justice . . . private law norms may legitimately be used to redistribute wealth when alternative methods of doing so are likely to be more costly or intrusive. The distributive justification for making certain contractual entitlements inalienable by prohibiting their waiver is simply an extension of this idea and is implicit in the familiar and widely accepted notion of an adhesive contract’ (Kronman, 1983). ‘. . . Even within our largely individualistic and negative constitutional scheme, however, there are exceptional rights that the constitutional text itself expresses in affirmative form. . . . These commands obviously entail recognition of positive and not merely negative rights . . . all of them confer rights that no individual may permanently waive and that government can faithfully satisfy only by affirmative exertion. The non-waivable nature of these rights, and the existence of affirmative duties with respect to at least some of them, can be seen as structurally linked. It cannot escape notice, in particular, that all of these rights that seem not to fit the classical “individual-alienable-negative” mould appear to correspond to systemic norms – norms concerned with structuring power relationships to avoid the creation or perpetuation of hierarchy in which some perennially dominate others. Individual rights, which operate as individually held vetoes over government action, are inadequate to vindicate such relation-focused norms. These norms serve not only to recognise spheres of personal autonomy, but also to replace vertically stratified patterns of power with more horizontal or egalitarian arrangements – between accuser and accused, between governors and governed, between the Union and the States, between those who hold power and those who aspire to it. Indeed the very process of translating ideas about relationships into purely individualistic values may be destructive of what those ideas seek to capture. Neither equality nor community is reducible to individual autonomy or liberty. And, in any event, it may be too easy to induce those who hold mere vetoes to “trade in” rights of this form in return for immediately needed or desired benefits’ (Tribe, 1985: 331). See Raz (1994): ‘We can take as our example democratic rights – rights like the right to vote, to stand for election, and to participate in political activities; the freedom of political association, demonstration, and assemblies; and those aspects of freedom of expression which are based on the fact that there is no democracy without free expression. I call these and their like democratic rights because of their justification. It is clear that they are not always identified as such in standard bills of rights. Rather, what I called democratic rights are often aspects of or parts of other constitutional rights. I have a right to vote. I have an interest in

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being able to vote and the right is there to enable me to do so. But clearly its rationale is based not only on my interest. It is based on the common good of living under a democratic government. This is an interest shared by all, including those who – like young children – do not have a right to vote. It is the protection of that common good which gives special stringency to my right, a stringency it might not have enjoyed had my interest in it been the sole reason for it. Clearly the fact that the right is non-convertible, that I cannot divest myself of it, nor commit myself for financial gain to exercise it one way or another, is based not on the fact that nothing can compensate me for the loss of the right to vote. Such paternalism is only rarely justified, and would be very dubious in this case. Rather, the non-convertibility of the right reflects the fact that it is grounded in a common good of a distinctive kind which would be undermined were the right convertible. Hence, the interests which justify the right and which give it its shape and content are the interests of the public at large alongside the interests of the right-holder.’ The right to vote freely has not always and everywhere been considered as an inalienable personal right. Just to cite one example, the term pocket borough was a term used by the nineteenth-century English parliamentary reformers to describe the many boroughs in which a relatively small population was either bribed or coerced by the leading family or landowners to elect their representatives according to their guidelines. As a result, the Parliament was controlled by the landed gentry and seats were filled by representatives who wanted to please their patrons rather than their constituents. Reforms passed in 1832 and 1867 ended this practice by widening the franchise and redistributing parliamentary seats to reflect the population shift from rural areas to the industrial towns. (I am grateful to Jane Stapleton for providing this example.) The idea is that, owing to the unregulated development and use of information technologies, the mere disclosure of genetic information outside the confidential doctor–patient relationship will unavoidably raise problems of the misuse of that genetic information by third parties. Rule utilitarianism requires not that individuals maximise welfare as they act, but rather that they conform their acts to rules that maximise welfare. What the law and economics movement teach us, at least, is that protecting privacy in the marketplace raises a cost that someone has to pay. See Ewald (1996: 138): ‘Il n’y a pas à proprement parler de risque individuel, sans quoi l’assurance se transformerait en gageure ou en pari. Ce n’est en effet que sur l’étendue d’une population que le risque devient calculable. Le travail de l’assureur est précisément de constituer cette population par sélection et division des risques.’ See also Ewald (1991). ‘L’assurance individualise, elle définit chacun comme risque, mais d’une individualité qui ne se réfère plus à une norme abstraite, d’une individualité relative aux autres membres de la population assurée, d’une individualité moyenne ou sociologique’ (Ewald, 1996, p 139). ‘L’assurance vie n’est pas seulement un devoir impérieux, c’est l’expression d’une loi universelle. Cette loi est une des plus saillantes, une des plus fortement empreintes dans toute la nature: on l’appelle la loi de conservation des espèces; elle veut que les charges des ascendants ne retombent pas sur les descendants, et que l’avenir d’une génération soit préparé, sauvegardé, assuré par la génération qui précède’ (E About, L’Assurance, Paris, 1865, cited in Ewald, 1998: 415). On the distinction and explicitation of the differences between solidarity-based and mutuality-based insurance systems, see Wilkie (1997). Committee of experts on the use of medical examinations for employment and

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insurance, Medical examinations preceding employment and/or insurance: a proposal for European guidelines, Council of Europe, April 2000, p 21. Tabarrok (2003). UK Department of Health Genetics and Insurance Committee (2004) and Cookson (2005). Swiss Federal Law on Genetic Testing on Humans, 8 October 2004. Ibid. See also Meyer (1993). See Radetzki et al (2003: 79): ‘We argue that the regulation of genetic insights for the purpose of insurance is not sustainable. It will be brought to an end once it is realised that it does not serve its ethical goals. The problems of equity that are bound to arise in consequence will have to be handled by the authorities . . . But it is essential . . . to point to a set of important side benefits that will arise as the regulation is repealed. Only then will it be possible fully to combine the potential offered by genetics with the insurers’ interests, to improve the life of the insured with higher genetic risk through the development of preventive measures and prophylactic treatment, and at the same time to reduce the cost to the insurers of carrying that risk.’ Yet, one may object, not everyone will be better off when restrictions on the use of genetic information by insurers will be repealed. See also Christianson (1996), Diver and Cohen (2000–2001), Meyer (1993, 2004), Mittra (2004) and Pokorski (1992, 1995 and 1997). Mutuality ‘is the normal form of commercial insurance, whether or not it is run by a mutual insurance company or owned by shareholders. Applicants contribute to the pool through a premium that relates to their particular risk at the time of the application, perceived as well as it can be at that time on the basis of all the facts that are available and relevant . . . the pooled funds then pay those insured who suffer losses in accordance with the scale of their losses or things like fire, household and marine insurance, or in accordance with the agreed sum assured for life insurance. Solidarity is a concept that has some similarity to mutuality, but also profound differences. The similarity is that losses are paid according to need, and the difference is that contributions are made not in accordance with the risks that each applicant brings with him, but perhaps according to the ability to pay, or just equally’ (Wilkie, 1997). The justification evokes Claude Lefort’s comments on totalitarianism: ‘Tout se passe comme si le pouvoir avait la capacité d’exhiber l’ouvrage social commun, ou comme si, par son truchement, la société s’exhibait devant elle-même’ (Lefort (1994) cited in Le Goff, 2003: 25). See also Daniels (2004: 34). ‘While adverse selection in insurance markets is clearly a possibility, it is often not the serious problem that it is taken to be. Courts, policy-makers and legal academics need to do much more than trumpet a concern for adverse selection as a justification for their preferred course of action. And economists need to develop less obscure and more realistic models, and pay more attention to the empirical issues (as indeed they are beginning to do)’ (Siegelman, 2004). ‘[C]onsideration must be given to whether the information provided by a given test showing a twenty-year-old to be at higher risk of developing a certain condition and dying when they reach the age of 80 is hardly relevant to assessing the risk of their dying in five years’ time. The relevance criterion rules out blanket generalisations. Certain tests may well be relevant for one type of insurance, but not for another. Reasons, therefore, must be given on a case-by-case basis, depending on the type of test, to determine whether or not the insurance company should be entitled to be told the result of a test already taken, although it cannot require a test to be taken in the first place. It is obvious that this delicate case-by-case

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approach is difficult to legislate for, since the law operates in terms of generalisations and fixed values. This is why the authorities in England set up an independent committee whose job is to assess both the reliability of tests and their relevance to given types of insurance. This idea of relevance doubtless helps reconcile the ethical requirements (non-discrimination and access to insurance) with the requirements of the insurance market in areas such as life insurance’ (Ewald, 2000: 80). International Bioethics Committee (IBC), Working Group on Genetic Data, Draft Report on Collection, Treatment, Storage and Use of Genetic Data, SHS-503/01/ CIB-8/3 Paris, 3 September 2001: ‘Emerging chip technology will enable tests to be done for many hundreds of sequences at a time, thus enabling information to be elicited relating to many conditions. DNA sequencing is therefore much more powerful and potentially informative than phenotypical observation or family history-taking. The public perception also is that the results of DNA tests are matters of greater sensitivity than the selective, focused information obtained from, say, family history-taking. A person’s genotype is seen as revealing something about his or her essence. It therefore falls into a category of particularly intimate information, needing special protection.’ See Parlett (2003: 489–90) and Lemmens (1999: 31): ‘The development of a genetic biochip that would allow one-time testing for a multitude of factors, brings genetic testing closer to all of us. It is becoming a standard diagnostic tool. Few of us will remain untouched by it.’ See, for the UK, Advisory Committee on Genetic Testing (1997) and Human Genetics Commission (UK) (2003). In June 2003, Roche, which is developing genetic tests as a result of its links with the Icelandic Genetic research database, has sent draft guidelines to the United States Food and Drug Administration, lobbying to weaken the regulation on the marketing of genetic tests. The guidelines would allow companies to get marketing licenses for gene tests without submitting medical evidence of the role of the genes tested in the production of the disease. See Boseley (2004). See Tuffs (2004). See Capron (1990): ‘. . . discoveries and developments do not occur evenly across the whole of genetics nor do they necessarily touch first on those genetic conditions that are most common in the population. Instead, both the potential benefits and possible risks of genetic screening and diagnosis will attach very unevenly across the population. Although all of us carry five to seven lethal recessive genes as well as a still undetermined number of genes that make us susceptible to developing diseases based on the interactions with the environment (e.g. through work, diet, etc.), those persons who carry those particular genes for which screening becomes available are in greater danger of suffering discrimination because of their apparent singularity.’ ‘The use of genetic information in actuarial decision-making is not an entirely objective practice. Only some predispositions or illnesses can be diagnosed. Thus, the tests available, the individuals subjected to them, and, ultimately, the information available to insurers is only an arbitrary product of the current state of research into genetic illnesses’ (McGleenan, 2000: 198). ‘A critical review of the use of race is necessary in light of its profound effect on the production of medical knowledge. Statistics describing health differences between whites and racialised populations . . . are the result of epidemiological research that focuses on race as a category of inherent distinction. This research, in turn, establishes the agenda for progress in improving health status and determines the measures of success in achieving the NIH goals. The racial taxonomy used by epidemiologists impacts directly on the research design of studies examining the

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biological basis of difference among groups, initiating a trajectory of inquiry that is uncritical of the relationships among racialised groups, genetic characteristics, and environment’ (Lee et al, 2001). (Lacan, 1954):’Il est bien clair que l’erreur n’est absolument définissable qu’en termes de vérité. Je veux dire non pas que l’opposition, en quelque sorte blancnoir, il n’y aurait pas de blanc s’il n’y avait pas de noir; ce n’est pas de cela qu’il s’agit. Non! De même que le mensonge pour être soutenu et poursuivi impose littéralement la constitution de la vérité, que le mensonge, lui, la suppose connue d’une certaine façon dans toute sa rigueur, et même bien assise, et même qu’on la construise de plus en plus pour soutenir le mensonge, le problème est d’un degré au-dessous, pour l’erreur. Mais la liaison n’est pas moins intime en ce sens qu’il n’y a pas par essence d’erreur qui, elle, pour le coup, ne se pose et ne s’enseigne comme vérité. Sans cela, cela ne serait pas une erreur! Pour tout dire, l’erreur, c’est (si l’on peut dire), l’incarnation commune et habituelle de la vérité. Et si nous voulons être tout à fait rigoureux, nous dirons que tant que la vérité n’est pas entièrement révélée – c’est-à-dire selon toute probabilité jusqu’à la fin des siècles – il est de sa nature de se propager sous forme d’erreur. Et il ne faudrait pas pousser les choses beaucoup plus loin pour que nous voyions même là une structure constituante de la révélation de l’être en tant que tel.’ In this regard, Richard Posner and Richard Epstein share a conception of the individual as rational and egoist agent essentially dedicated to provide deceptive accounts of what he is in order to incite his fellow citizens to engage with him in contractual terms that would have been less beneficial for him would the other parties have known his true nature. See Posner (1978, 1984) and Epstein (2000). Radetzki et al (2003: 25) acknowledge that ‘The seriousness of the problem of adverse selection will (. . .) vary to some extent with the form of insurance, since high-risk individuals will lower their pension premiums (they are less likely to reach pension age). The problem is perhaps more evident in the case of premature death insurance, . . . Adverse selection is probably somewhat less a problem in the case of health insurance, since compensation for treatment is partly determined by its costs. However, when it comes to compensation for income, benefits and thus also premiums can vary to a larger degree.’ See Epstein (1992): ‘Normally pregnancy is regarded as a voluntary and welcome event, easily distinguished from any disability for which insurance is usually thought and extended. Because pregnancy is desired, and because women largely control whether and when to become pregnant, the evident moral hazard makes pregnancy a poor candidate for any form of insurance . . . women are more likely to choose to become pregnant if they can receive disability payments for an outcome they regard as beneficial.’ ‘Le miracle qui sauve le monde, le domaine des affaires humaines, de la ruine normale, naturelle, c’est finalement le fait de la natalité, dans lequel s’enracine ontologiquement la faculté d’agir. En d’autres termes: c’est la naissance d’hommes nouveaux, le fait qu’ils commencent à nouveau, l’action dont ils sont capables par droit de naissance’ (Arendt, 1994[1961]: 314). See Malloy (2003: 20). ‘Dans ce cas donc, loin d’être une fatalité, la maladie va relever d’une responsabilité individuelle et collective. On pourra constater, dans le fait même du déclanchement d’une maladie polygénique, que la personne concernée n’aura pas observé la conduite de prévention qu’elle aurait dû s’imposer’ (Ewald and Moreau, 1994: 116). See McCluskey (2002: 146–7). The increasing constitutionalisation of neoliberal structures of society may also be analysed in the same frame: the constitutionalised

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rights of enterprises and capital-holders are antinomic to previously constitutionalised individual social and economic human rights. See Hall et al (2005): the authors show that overall 40 per cent of participants to a study aimed at measuring concern about insurance problems relating to genetic testing agreed that ‘[G]enetic testing is not a good idea because you might have trouble getting or keeping your insurance’. The study also showed that concern about genetic discrimination varies substantially by race (sic) and other demographic factors, and by nationality. See for instance McGoodwin, (1996). In a similar way, Graeme Laurie also argued that avoiding a situation where individuals are deterred from seeking genetic testing would be in the common interest of all concerned parties: deterrence from taking genetic tests would have adverse individual, familial and social consequences and deprive the industry of the perceived benefit of additional information (Laurie, 2002: 143). Indeed, most proposed policy instruments about genetic privacy and non-discrimination contain the argument that not providing protections against genetic discrimination would deter people from taking part in genetic testing. The positive impact of genetic testing as such is not really discussed. The undiscussed assumption is made that providing people with the new genetic opportunities does enlarge the scope of their choices (this might however be challenged), and that this enlargement is by itself something positive. See for example Holtzman and Watson (1997), Center for Disease Control and Prevention, (1997). See for example Radetzki et al (2003). See Daniels (2004). The same argument has been raised against allowing private health insurance companies to impose damage caps on HIV-related diseases: ‘On a financial level, the legitimisation of insurance caps on AIDS and AIDS-related conditions will place a greater burden on state resources. Since there will be limited financial resources within the insurance context for people infected with HIV to rely upon, they will have to default to their own funds. These funds will likely be liquidated quickly due to the costs of treatment. Therefore, most people with HIV will eventually be dependent on state Medicaid resources for what limited treatment it will cover. This phenomenon will have a negative effect on the economy in general, since there will be a drain on state resources where it would be more fiscally healthy for the loss to be handled by insurance companies’ (Joly, 2001: 221). See also Kaplow and Shavel (1996). The principle of Pareto optimality, by contrast, requires that aggregate gains be maximised without making anyone subjectively worst. The concept of Pareto optimality has been criticised as being of little use in policy debates, as ‘any society is always or will immediately arrive at Pareto optimal point’ (Callabresi, 1991).

Chapter 8

Practical and normative arguments against ‘genetic exceptionalist’ legislation

The term exceptionalism was first used in 1991 to describe the policy of treating HIV differently to other communicable diseases, particularly other sexually transmitted infectious diseases. HIV exceptionalism inspired, for example, the implementation of specific pre- and post-HIV test counselling, the development of specific separate consent forms for HIV testing, the provision of stringent confidentiality requirements for HIV test results, and the stipulation of HIV status as exempt from compulsory notification of communicable diseases regulations.1 Despite criticisms that genetic exceptionalist policies were disproportionately valuing the individual freedom of HIV-positive persons over public health and welfare, the arguments in favour of HIV exceptionalism still seem to prevail over the anti-exceptionalist approach. HIV exceptionalism, particularly its stringent HIV confidentiality and privacy regulations, seems necessary to protect public welfare and health. Prevention would otherwise be severely jeopardised as people would be deterred from seeking HIV testing without these strict confidentiality and privacy guarantees. Similarly, there is nowadays a clear tendency of western legislators towards genetic exceptionalism, a propensity to designate a specific legal status for genetic information, specific policies of reinforced confidentiality and privacy rules to prevent genetic discrimination.

A. The impracticability of genetic non-discrimination legislation Definitional issues One of the most important practical challenges that genetic privacy and genetic non-discrimination rules are confronted by is definitional: the terms genetic information and genetic data are particularly ambiguous. The difficulty of precisely defining the content of the notions of genetic information is at the source of some of the most difficult challenges for legislators attempting to regulate the disclosure and use of genetic information, particularly in

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insurance and employment contexts. Should the notion be restricted to information obtained as a ‘result of genetic screening or testing’? Should the notion encompass ‘any information about the operation of heredity’ derived from family history, direct observation of the person’s phenotype and from analysis of proteins expressed in the person?2 Information about the genetic constitution of an individual may indeed be derived from a variety of sources:

•

•

•

Observation of the family history enables conclusions to be reached about that person’s genotype. The conclusions obviously depend on our knowledge of patterns of inheritance and may be confined to expressions of possibility. Nonetheless, the statement that a person has a certain percentage chance of having a particular genetic condition because one of his parents had that condition is genetic information. Direct observation of a person’s phenotype may sometimes lead to specific conclusions regarding the presence in that person’s genetic make-up of one or more particular genes. An example of this process would be the diagnosis, on the basis of observation of phenotypical features, of Down’s syndrome, a condition known to be based on a genetic factor. The fact that a person has Down’s syndrome means that very specific conclusions (the existence of trisomy 21) can be reached about his or her genotype. Analysing proteins expressed in an individual indicates the presence or absence of the genes that have coded for the identified proteins.

A decision is therefore required as to whether principles pertaining to genetic data should include all of the above forms of genetic information, or whether they should be restricted to information about the genetic DNA, RNA and protein sequences. The British Human Genetic Commission, for example, has decided to ‘consider personal genetic information to be information about the genetic make-up of an identifiable person, whether derived directly from DNA (or other biochemical) testing methods or indirectly from any other source’. The decision to retain a broad definition of genetic information has been adopted after the Commission received, among the responses to their consultation paper (Human Genetics Commission (UK), 2000), a large range of opinions favouring the broad definition. Indeed, medicine has not awaited genetic tests to deduce, principally from familial history, the increased susceptibility of certain individuals to certain illnesses, although the individualisation of those increased risks into one member of the brotherhood, i.e. the possible confirmation or indication, or, at least, the more accurate quantification of individual risks, are due to new developments in genetics.3 Yet, applied in the context of genetic non-discrimination legislation in insurance, such a wide definition would challenge the traditional practice of insurance that routinely relies on familial history.

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Another definitional difficulty results from the difficulty of separating genetic information clearly from other medical records, a difficulty that will probably increase when scientists explain the involvement of genetic components in a growing number of illnesses. For some scholars, the difference between DNA tests and classical medical information is merely one of degree. Because a genetic test provides a more definitive answer to the question whether a person has or not a particular gene (that the notion of ‘gene’ is a linguistic fiction has not been acknowledged outside the research laboratories in genetics, which have now turned their concerns away from the notion to focus on the complexity of living systems), the indications it provides regarding the probability that the tested person will develop a particular disease seem also clearer than the indications provided by the person’s familial and medical history. However, both genetic tests and traditional medical examination are informative about the individual’s higher-than-average probability of developing the disease at stake. HIV testing provides a recent example of non-genetic medical information that poses the same kinds of problems as some types of genetic information given its predictive value (Ginsburg, 1999). According to Onora O’Neil, the assimilation of genetic information to classic personal medical information has become less and less plausible. The reasons she raises are the following. Firstly, some genetic technologies are now being put to wholly non-clinical uses, such as allocating responsibility for child support payments or determining immigration status, but that doesn’t seem a really decisive argument, since, in child custody litigation, for example, the non-genetic medical status of the claimants – and particularly their mental health status – has already been used in several instances. Secondly, she argues, those who buy genetic tests (often through the Internet) can evade all medical supervision, clinical advice and genetic counselling. That of course is a more convincing reason, but one that seems particularly contingent upon the interests of marketers for genetic tests as commodities. If, for example, non-genetic mood-enhancement products were sold on the Internet, people would undoubtedly buy them, with or without medical advice. Thirdly, genetic data about individuals can be held electronically, and genetic databases can be linked, manipulated and integrated with databases containing other kinds of personal information, including non-medical information (O’Neill, 2002). That last argument doesn’t seem really relevant since most of our medical data are held in electronic databases and potentially linked to other non-medical databases. The idea that genetic information is qualitatively different from classical medical information or health-related information has emerged from the consideration of the paradigm shifts that human genetics have brought to medico-legal practice. However, the hasty reaction of enacting specific legislation dealing with genetic privacy and genetic discrimination may rightly be criticised as an expression of geneticism, leaving unresolved, or even

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worsening, other important, more general issues of privacy and discrimination (Sutter, 2001). Is ‘genetic status’ a pre-existing condition for the purpose of insurance? Moreover, the effectiveness of legal prohibitions of genetic differentiation in insurance is contingent on whether ‘genetic risks’ are constitutive of preexisting conditions. The notions of genotype and phenotype are interesting to scrutinise in the insurance context, especially in relation to the notion of preexisting conditions, which the applicant is obliged to disclose to the insurer and which are generally excluded from insurance coverage. Nothing seems more pre-existing than the genotype that a person has been carrying since she has been conceived. At the same time, nothing seems less pre-existing than genetic ‘disease’ – the phenotypic realisation of a genetic risk – when, at the time of insurance underwriting, the person is perfectly healthy and may never become diseased. May a mere genetic risk or an increased predisposition be considered as a pre-existing condition for the purposes of insurance?4 Other questions unavoidably arise, such as whether genetic testing, including testing for diseases for which no preventive or curative strategies currently exist, should be included in the benefit package offered by public or private health insurance or whether predictive genetic tests undergone for preventive or therapeutic purposes, or for family and lifestyle planning, should be considered as medically necessary procedures and as such paid for by insurance.5 Private health insurances often refuse to cover costs associated with genetic counselling and testing for predisposition tests, arguing that they only cover medically necessary procedures, and that predisposition tests do not qualify as such. The latter, performed on currently healthy people, do not provide any certainty as to the occurrence of the condition, and cannot be assimilated to procedures directly aimed at preventing or curing the condition. This may attest to the fact that a genetic risk should not be considered a pre-existing condition. The related question of whether health insurance should pay for prophylactic surgery undergone by a healthy woman who tested positive for a genetic mutation associated with a higher probability of developing cancer arose in Katskee v Blue Cross/Blue Shield (1994), decided by the Supreme Court of Nebraska.6 The case involved a woman with breast–ovarian carcinoma syndrome – a 50 per cent genetic predisposition to breast and ovarian cancer – who had her uterus, ovaries, and fallopian tubes removed preventively. The insurance company, Blue Cross, refused to pay for the surgery because they did not consider an increased likelihood of getting cancer to be a disease. The Court, however, held that Blue Cross must pay for the surgery, because they had termed the plaintiff’s condition as an ‘illness’ under her insurance contract, and therefore had considered it covered by her plan. In this case, the

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assimilation of ‘genetic risk’ to ‘illness’ was beneficial to the patient as it allowed her to have her prophylactic surgery paid for by insurance. On the contrary, in the context of life insurance, a decision that would assimilate an increased risk to a pre-existing condition, providing legal existence to the potential disease at the time of insurance underwriting, would certainly not be in the best interest of the insured, as pre-existing conditions are, in principle, excluded from insurance coverage (Glazier, 1997: 45). Are asymptomatic individuals at genetic risk ‘disabled’ for the purpose of disability non-discrimination legislation? The interpretation of genetic risk as a pre-existing condition for the purpose of insurance might arguably be influenced by the interpretation of whether the same genetic risk places the individual in the category of persons with a disability for the purpose of disability non-discrimination regulations. That discourses of ‘genetic literacy’ and ‘genetic responsibility’ tend to transform healthy people into ‘asymptomatic ills’ encourages them to proactively take charge of their ‘risk’ by becoming genetically aware, changing their lifestyle and diet according to their personal genomic predispositions and susceptibilities, and constantly monitoring their bodies in order to detect the first symptoms that might indicate that their bad genes have been triggered, does not mean, however, that asymptomatic persons at genetic risk automatically qualify as ‘individuals with disabilities’ for the purposes of disability nondiscrimination policies. Council Directive 2000/78/EC of 27 November 2000, establishing a general framework for equal treatment in employment and occupation (Council of Europe, 2000), is aimed at ‘. . . combating discrimination on the grounds of religion or belief, disability, age or sexual orientation as regards employment and occupation . . .’ (Article 1).7 It remains uncertain whether, under the forbidden ground of disability, genetic discrimination or discrimination against asymptomatic or pre-symptomatic persons is also prohibited. One may usefully observe how the Americans with Disabilities Act of 1990 (ADA) functions in this regard. The ADA protects qualified individuals ‘with a disability, who, with or without reasonable accommodation, can perform the essential functions of the employment position that the individual holds or desires’. The term disability as defined by the ADA means: ‘(1) A physical or mental impairment that substantially limits one or more of the major life activities of such individual; (2) a record of such an impairment; or (3) being regarded as having such an impairment.’ The ADA does not define what constitutes a ‘major life activity’, but has incorporated, by reference, regulations issued under the Rehabilitation Act of 1973 that specifically define major life activities and contain a non-exclusive list of tasks ‘repetitively performed and essential in the day-to-day existence’. This list includes activities of daily

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living such as caring for oneself, walking, seeing and speaking. The concept of physical impairment has been defined by the Department of Health, Education and Welfare (HEW)’s 1977 regulation interpreting the Rehabilitation Act as ‘any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive, digestive, genito-urinary; hemic and lymphatic; skin; and endocrine . . .’. Regarding the question whether asymptomatic or pre-symptomatic individuals qualify as disabled persons for the purpose of the Act, the United States Equal Employment Opportunity Commission (EEOC) issued an interpretation in 1995 that when an employer discriminates against (presymptomatic or predisposed) individuals because of an increased risk of a genetic disorder, the individual is regarded as having a disability and is therefore protected under the ADA. According to the EEOC, . . . the definition of disability applies to individuals who are subjected to discrimination on the basis of genetic information relating to illness, disease or other disorders. Covered entities that discriminate against individuals on the basis of such genetic information are regarding the individuals as having impairments that substantially limit a major life activity.8 It should be noted however that the interpretations given by the EEOC do not carry the force of law. The possibility of asymptomatic individuals raising claims under the ADA has been questioned in the landmark 1998 case of Bragdon v Abbott.9 In that case, the Supreme Court recognised that the plaintiff, Sidney Abbott, a woman infected with HIV, was disabled within the meaning of the Americans with Disabilities Act. According to the Court, she was disabled because ‘her HIV infection substantially limited her ability to engage in the major life activity of reproduction’.10 Although the case was not about genetics, the court could arguably have reached similar conclusions in a scenario involving an asymptomatic person who tested positive for the genetic mutation causing Huntington’s disease (HD), for example, as those HD-positive persons have a 50 per cent probability of passing the devastating and incurable condition to their offspring (Saunders, 1995). The reasoning of the Supreme Court, having felt obliged to declare Abbott limited in her reproductive activities in order to grant her the status entitling her to the protection of the ADA (where it could simply have relied on the fact that persons with HIV are often ‘regarded as having a disability’), could have disastrous implications, in genetic as in HIV cases. Identification of limitations on procreation as a disability may have negative consequences on several fronts. Promoting reproduction as being such an integral part of ‘normal’ living perpetuates the

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idea that to be whole, women must desire to reproduce and succeed in reproducing. But just as importantly, understanding disability and reproduction as two aspects of life that are not compatible reinforces the idea that reproduction is something women with disabilities (or, in our case, with transmissible adverse genetic traits) cannot or should not do, and that women who are disabled in ways different from Abbott, in ways that do not directly impinge on their sexuality and reproduction, should nevertheless not bear and rear children.11 The related question whether disability discrimination should be allowed in the context of assisted reproductive technologies has not yet been widely discussed in the literature. What kind of disabilities, and to what degree of severity, would justify refusing a candidate for assisted reproduction? Until February 2002, the American Society for Reproductive Medicine explicitly supported the exclusion of HIV-positive patients from assisted reproductive technologies programmes (Ethics Committee of the American Society for Reproductive Medicine, 2002). But since one now knows that the risk of transmitting the virus during pregnancy or childbirth can be reduced to extremely low levels, is such a position still justified? Should the indirect risks resulting for the child from the higher morbidity of the parent concerned (the risk of losing one parent at a relatively early stage) be taken into consideration in refusing the required fertility treatment? If one follows the logic of the substantial limitation criterion used by the Court, one must also conclude that any person with a fertility problem is legally disabled. If the fact of being limited in reproductive activities (not by any organic or functional impairment but by the social stigma that would be suffered by the HIV-positive person should she decide to reproduce without medical assistance especially designed to prevent the transmission of HIV to her sexual partner and the future child) is to be considered as a disability, any infertile person would thus a fortiori qualify as a person with a disability under the ADA. Why has the Court not opted for the more straightforward argument that people with HIV are often regarded as disabled and, as such, particularly vulnerable to social stigma? What then if an asymptomatic person with HIV, or at substantial risk of transmitting a severe genetic disease through reproduction, who has been discriminated against, decides to take his/her chance and to bear and rear children? Will that person then have to give up any protection against discrimination in employment, healthcare, etc? Will courts interpret that person’s ‘negligent’ behaviour or decision as a waiver of her right to equal opportunity? This raises some fundamental questions: when genetic risks are detectable, foreseeable or even, in some rare cases, avoidable, who will have to take responsibility? Whereas the ‘insurance society’ has changed the focus from the subjective notion of fault and individual responsibility to the objective notion of risk and solidarity, these questions illustrate the shift we are experiencing from

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that ‘insurance society’ to the ‘actuarial, post-Keynesian’ society where ‘. . . acceptance of solidarity is . . . accompanied by a demand for control over personal behaviour’ (Rosanvallon, 1995). It is, for example, unclear in this regard whether the ADA will cover unaffected carriers of recessive and X-linked disorders who may be subject to discrimination by employers concerned about the possible impact on future healthcare costs of dependants. Another important question is whether the implementation of mitigating measures excludes protection against disability discrimination: that someone is affected with a genetic condition doesn’t necessarily mean that s/he is disabled owing to that condition. For example, one may be affected by a genetic trait as phenylketonuria (PKU) and have to follow a severely restricted diet in order to avoid the symptoms. In that case PKU doesn’t disable the patient though it affects him heavily in his daily life. The impact of mitigating measures on definitions of disability, and on the legal status of the person living with the trait at stake, is unclear. One may wonder what the impact of mitigating measures is on the qualification of the individual as ‘currently unaffected’. In Sutton v United Airlines,12 the plaintiffs, twin sisters suffering from severe myopia but wearing glasses that fully corrected their vision, alleged that the airline engaged in disability discrimination when it refused to hire them as airline pilots. They argued that, given their disability, the ADA prohibited the employer to discriminate against them. The court rejected their argument that the disability determination should be based on their visual impairment in its uncorrected state, ruling instead that mitigating measures must be taken into account (and not bleached out). Because the plaintiffs’ vision was essentially normal when corrected by lenses, the Court concluded that the plaintiffs were not disabled and hence, were not protected under the ADA. The decision is not really surprising considering that more than 90 per cent of cases resolved under the ADA have ended with defence judgments.13 One may already identify a gap between the relatively narrow conceptualisation of disabilities made in the context of protection against discrimination, where the status of disabled person would benefit the concerned individual, and the context of care, where the broader the concept is, the wider the responsibility of the individual to prevent, mitigate and manage his ‘problem’.

B. Normative deficiencies of genetic exceptionalism Genetic exceptionalist policies are immediately inspired by faith in the threat of the ‘genetic underclass’ that has already been criticised. Besides the fact that such gene-specific legislation might prove impracticable, lacking clear definitions of genetic information and of genetic discrimination, it may prove counter-productive if its aim is to prevent discrimination in employment

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and insurance, as it provides protection only to persons with identified genetic risks, leaving most people vulnerable to discrimination. We have seen in the first part of this volume that an individual’s genetic status is, in part, constructed: it is contingent on the mechanisms producing genetic knowledge, and particularly on the way that they use pre-existing population classifications as proxies for presumed genetic differences, and on how social and racial prejudices impact on the framing of the research agenda. Moreover, even if the distribution of genes predisposing people to adverse health outcomes such as certain forms of cancer is independent of social and economical stratifications, it is widely known that, because the less frequently studied environmental and lifestyle ‘triggers’ of those genetic predispositions are much more dependent on social and economic classifications, socio-economic conditions do play a major role in the health status and life expectancy of those affected with genetic predispositions (Kelly, 2005). It is well known, for example, that patients with cystic fibrosis and low socioeconomic status have poorer pulmonary functions and are hospitalised more frequently and for longer periods than cystic fibrosis patients with higher socio-economic status (Holtzman, 2001: 458). Symmetrical genetic non-discrimination legislation focusing on genetic status as a distinct forbidden ground would leave unchallenged the inequalities of opportunity that result from accumulated disadvantages. Furthermore, it would also reinforce the ‘geneticisation’ process by cherishing the misleading idea that genes are indeed central to what people really are and should be given privileged explanatory power over environmental, cultural, social, and economic factors. A typical argument raised in support of prohibiting genetic differentiation in health insurance identifies health insurance as a basic good that people should not be deprived of for reasons related to their genetic status, that is, for reasons over which they have no control.14 The accompanying claim is that genetic status is something for which the individual should not be held responsible, and is thus something that should not negatively impact on the individual’s opportunities. Yet differentiation in insurance on grounds beyond the policy-holder’s control is what usually happens in insurance, as a matter of rule rather than as a matter of exception. Gender, familial history and personal medical history, factors routinely used by insurers, are typically outside the scope of individual control. The question is thus not whether risk factors are beyond the control of individuals, but whether insurance necessary for illness, old age and premature death should not be provided universally according to needs, rather than through the market according to the ability and willingness to pay. Whether one type of insurance is needed in a given society to achieve equality of opportunity is highly contextual, and may evolve over time. The fundamental paradox of laws prohibiting genetic discrimination in insurance is that, although they are often justified on the rationale that access

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to healthcare is a basic right that should be guaranteed to all without discrimination, identifying genetics as a specific forbidden ground of differentiation in insurance introduces a morally irrelevant distinction in guaranteeing unconditional access to the basic good of health only to those asymptomatic for a genetic condition, while leaving those with non-genetic conditions without such a guarantee. As a result from their survey conducted in January 2002 by telephone and over the World-Wide Web about people’s willingness to tolerate different kinds of discrimination in the United States, for example, Timur Kuran and Edward J McCaffery found a very high tolerance of discrimination against poorly educated immigrants and a strikingly low tolerance of discrimination against the genetically disadvantaged. The surveys inquired into attitudes about five forms of discrimination: restrictions on Arab-American air passengers, the profiling of African-American motorists, the denial of employment to seriously overweight people, genetic testing in order to screen job applicants who pose medical risks, and the use of education as a factor in admitting immigrants (Kuran and McCaffery, 2005). Specific genetic privacy and genetic non-discrimination laws act as decoys that, in the United States, distract from the need for radical reform of healthcare systems. In Europe, such laws contribute to reassuring the middle class, and rendering more politically acceptable the increasing privatisation of healthcare provision and the gradual dismantling of the universal, single-payer health system. The result, however, on both sides of the Atlantic, is that legal protection against genetic discrimination erodes the support that the middle class – fearing they could lose jobs and insurance if found at risk of an adverse genetic condition – would have expressed, in order to set up universal health insurance and welfare institutions that would have been of greater benefit to the general population. Genetic exceptionalist legislation, which only protects a very tiny minority of the population (persons diagnosed as asymptomatic carriers of a genetic susceptibility or predisposed to certain diseases), may only serve politically strategic goals and does not really guarantee equal access to basic insurance. If healthcare is considered a basic good, universality, rather than the selectivity of the market, should prevail as a rule for healthcare provision. In the same manner, whenever some other kind of insurance is necessary to achieve equality of opportunity, it should be allocated according to the rule of universality rather than market or genetic selectivity.15

Notes 1 ‘In the first decade of the AIDS epidemic, an alliance of gay leaders, civil libertarians, physicians, and public health officials began to shape a policy for dealing with AIDS that reflected the exceptionalist perspective’ (Bayer, 1991). 2 In its Report on Collection, Treatment, Storage and Use of Genetic Data, the Working Group on Genetic Data of the International Bioethics Commission of the UNESCO recommended that the broader rather than the narrower definition

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of genetic data be used. Yet, the purpose of that Report was not to regulate the use of genetic information for employment and insurance purposes (SHS-503/01/ CIB-8/3) (2001). The definition provided in the Recommendation No (97)5 of 13 February 1997 of the Committee of Ministers to Member States of the Council of Europe on the protection of medical data seems extensive at first sight: ‘the expression “genetic data” refers to all data, of whatever type, concerning the hereditary characteristics of an individual or concerning the pattern of inheritance of such characteristics within a related group of individuals. It also refers to all data on the carrying of any genetic information (genes) in an individual or genetic line relating to any aspect of health or disease, whether present as identifiable characteristics or not. . . .’ But the Explanatory Memorandum seriously reduces the scope of the definition, explaining that ‘. . . in the absence at the time of drafting of a generally accepted definition of genetic data . . . [I]t was understood that this definition did not include the results of an analysis carried out by other means than DNA technology on blood, tissue, hair, sperm, and so forth. Such material might, however, produce genetic data when analysed’ (Council of Europe, 1997a). See Weir (1996). Prior to the advent of prenatal testing, women who were known to be at risk of having a baby with congenital disorders were given probability estimates of whether the unborn would be affected. The chief information used for diagnostic was family histories and estimates of exposures to toxins, carcinogens, etc. Lorna Weir argues that the prenatal diagnostic tests of the 1970s and 1980s were distinctively different from prior forms of practice. They were not general statements about the sub-populations to which a given woman was regarded to belong; rather, they were predictive at the individual level. Awareness of genetic predispositions, indeed, may transform a healthy person into an ‘asymptomatic ill’, given the genetic knowledge generates, for the ‘at-risk’ individuals, strong incentives to adopt a long-term preventive and prophylactic attitude, with frequent monitoring. On that question, see Schoonmaker et al (2000) and Williams-Jones and Burgess (2004). Katskee v Blue Cross/Blue Shield, 515 NW 2d., 645, 647, 654 (Neb. 1994). Article 2.2(b) (ii): as regards persons with a particular disability, the employer or any person or organisation to whom this Directive applies, is obliged, under national legislation, to take appropriate measures in line with the principles contained in Article 5 in order to eliminate disadvantages entailed by such provision, criterion or practice. Article 5 (Reasonable accommodation for disabled persons): In order to guarantee compliance with the principle of equal treatment in relation to persons with disabilities, reasonable accommodation shall be provided. This means that employers shall take appropriate measures, where needed in a particular case, to enable a person with a disability to have access to, participate in, or advance in employment, or to undergo training, unless such measures would impose a disproportionate burden on the employer. This burden shall not be disproportionate when it is sufficiently remedied by measures existing within the framework of the disability policy of the Member State concerned. EEOC Compliance Manual, ‘Definition of the Term Disability’, at 902–45, March 1995. Bragdon v Abbott, 524 US 624 (1998). Having met the statutory definition of an individual with a disability, Abbott was able to bring a claim under the ADA when her dentist refused to fill her cavity in his office, insisting instead that she go to the hospital and pay for the additional costs requested by the hospital. See Metnick (2003). Shepherd (2000).

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12 Sutton v United Airlines, 527 US 471, 482, 1999. 13 American Bar Association (1999). 14 Of course, lifestyle and behaviours may play a part in disease causations but, if it is sometimes possible for an individual, knowing that he is at special risk for a certain disease, to take specific preventive measures or to transform his lifestyle so as to minimise the probability or severity of the disease, the fact of that individual having a genetic susceptibility and having to take special precautions has to do with brute bad luck, or constitutive luck, that is, the bad luck of having been born with a specific ‘risky’ genomic configuration. 15 See Gulati (2001: 209): ‘Instead of focusing narrowly on differentiation based on genes, the more fundamental problem of insurance distribution based upon an individual’s ability to pay should be addressed . . . Genetic anti-discrimination laws are appealing to policy-makers, in part, because they seek to protect the middle and upper socio-economic classes who are generally the consumers of commercial health insurance. . . . The only transformative change that is truly capable of dealing with the problems presented by genetic differentiation and other forms of risk rating is a universal single-payer healthcare system.’

Chapter 9

The changing social role of private insurance: ‘risk’ as a new representational regime

In order to assess fully whether insurance constitutes a basic good to which each citizen should be entitled, and to distinguish the types of insurances that should be considered basic goods from those that should be considered financial commodities, one needs to clarify the social role of private insurance: the role of private insurance institutions in our ‘actuarial society’ extends, it will be argued, beyond the sale of individual and familial ‘safety nets’. The ‘production of risks’ by insurers has become a crucial mechanism of the new mode of governance typical of the post-Keynesian era. Given the increasing interdependence of insurance and other socio-economic institutions, risk assessment by insurers directly impacts on a policyholder’s opportunities in his relations with other private and public institutions. Actuarial rationality, just as new genetics, constitutes a specific representational regime equipped with a quasi-organic power over life. Carol Heimer rightfully observed that: [A]lthough compensation of losses may be a core function of insurance, insurers have other functions as well. Insurers are gatekeepers who can provide or withhold the calling card that gives people access to other goods and services. Like certification societies, standard-setting bodies, and credit inspectors, insurers make evaluations of who is worthy and who is not and other bodies rely both on these assessments and on the indemnity offered by insurers. Insurance assessments carry considerable weight because insurers are willing to put their money behind them. (Heimer, 2002) Given this gatekeeping role of insurance, the principle of equality of opportunity requires that differentiations made by insurers be exempt from any trace of prejudice or stigmatisation. Yet no real guarantee exists of the ‘neutrality’ and ‘objectivity’ of insurance underwriting.

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A. The inconstant objectivity of insurers: a further reason to keep public, universal schemes The asserted objectivity of underwriting has not been confirmed throughout the history of private insurance. The objectivity of insurance risk classification has been challenged by studies showing the subtle discriminatory practices by insurers against those who do not fit the underwriter’s vision of the ideal member of society, such as certain racial and ethnic minorities, the poor, gays and lesbians, and people with alternative lifestyles.1 Classification into risk categories implicated in health and life insurance underwriting are shown to be particularly vulnerable to cultural or social prejudices. Some insurance excludes or dramatically limits coverage of specific risks for reasons independent from statistical correlations. Notwithstanding insurers’ claims that underwriting is a value-neutral process, the issue of individual fault or responsibility remains a central issue for insurance, not as much at the level of individual underwriting than at the more general level of designing policy or, in other words, defining what is and what is not covered under specific insurance policies. The moral elements required for a person to be judged personally responsible or faulty for the advent of damages have proven dissimilar depending on the level of stigmatisation associated with the risk insured, but independently of whether the individual can control the occurrence of the loss and the amounts involved as compensation for that damage. The specific protections provided with regards to genetic information reveal the survival of moral presuppositions and value judgments about the ‘deserving’ status of those in need of compensation benefits. Stigmatisation is particularly visible against people with HIV/AIDS2 and against people with mental disabilities. Compared to disabled people with similar risk factors, it is often the case that people with HIV/AIDS or mental illness get less favourable (private) insurance benefits, without that distinction being actuarially justified. When it comes to insuring people with HIV/AIDS or mental illness, insurance companies tend to shift the focus onto the causes of potential hazards rather than onto the probability and severity of their materialisation.3 A decision by the United States Court of Appeals for the Sixth Circuit, Parker v Metropolitan Life Insurance Co, 1997, contained, for example, the assertion that: [the] ADA . . . does not prohibit an insurance company from differentiating between different disabilities. The same policy is provided to all employees who, when they receive it, are not disabled by working. The fact that some may become disabled for different reasons does not amount to discrimination in providing the policy. The ADA simply does not mandate equality between individuals with different disabilities.

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Rather, the ADA, like the Rehabilitation Act, prohibits discrimination between the disabled and the non-disabled. In Doe v Mutual of Omaha Insurance,4 decided on 10 January 2000, the Supreme Court of the United States (in a decision written by Judge Posner) (Soifer, 2003), unanimously refused to grant an appeal to a decision by the 7th Circuit Court that considered legal a provision contained in a group health insurance contract which limited the damages for HIV/AIDS-related claims to less than one-tenth of the sum fixed for other health-related claims. The inferior tribunal had ruled that non-discrimination legislation did not apply to insurance companies. The United States Supreme Court confirmed this decision (Joly, 2001). However, the insurance company voluntarily reversed its challenged AIDS-specific policy later that year. In Chabner v United of Omaha Life Insurance Company,5 the question raised was whether the anti-discrimination protections of the Americans with Disabilities Act extend to the policies and practices of insurance companies. The case involved a person with muscular dystrophy who was charged life insurance premiums twice the amount charged to other men of his age, despite the fact that his condition had only a small impact on his mortality. The district court held that the insurance company had failed to produce evidence that the rate of the premiums required was based on actuarially sound principles, and further held that the ADA covers discrimination in underwriting decisions and in the terms of insurance policies. In Battlefords and District Co-operative Ltd v Gibbs,6 the Canadian Supreme Court had to rule upon an allegedly discriminatory insurance policy that was offered as a benefit of employment to employees of the appellant, Battlefords and District Co-operative Ltd. The insurance policy at stake provided an income replacement scheme, whereby employees who were rendered unable to work were provided with income replacement for as long as they were incapable of returning to their jobs. Where the cause of an employee’s inability to work was a mental illness or mental disability, however, income replacement benefits were terminated after two years unless the employee remained housed within a mental institution. The question the Court had to answer was whether the insurance scheme’s differentiation between mentally disabled employees and physically disabled employees amounted to an impermissible discrimination within the meaning of section 16(1) of the Saskatchewan Human Rights Code.7 The Court decided that such an insurance plan, even if treating all employees equally prior to the materialisation of the risk of disability, is illegal because it explicitly provides for distinctions on prohibited grounds, albeit distinctions that only potentially occur in the future. Thus, according to the Canadian Supreme Court, discrimination against subsets of relevant groups enters into the definition of discrimination. Conversely, insurance companies may well be keen to delay the taking into account of specific behavioural or lifestyle risk factors when the behaviours

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or lifestyles at stake enjoy a high level of social acceptability. Although risks associated with smoking had been reported by epidemiologists as early as 1950 (Doll and Hill, 1950), insurance industries did not request or use information relating to smoking habits in underwriting before the late 1960s (Van Hoyweghen, 2004: 120; Glenn, 2000: 120; 2003: 120). Another example which further illustrates that adverse selection is not such a serious concern for insurers is that automobile insurers often fail to ask applicants how many kilometres they drive per year, a fact most obviously related to the risk of accident (Siegelman, 2004). Notwithstanding our comments about the construction of genetic risks and the uncertain relevance of genetic information for insurance underwriting (except for rare monogenic, monofactorial lateonset diseases), current legislative prohibitions of genetic discrimination in insurance are not exclusively, nor even mainly, grounded on the perception that genetic information is not a sufficiently predictive basis for insurance classification. Rather, it appears to be grounded on the perception that people affected with genetic diseases are the innocent victims of a natural lottery. In this regard, one may be legitimately puzzled about the true rationality behind the disparate treatment of information about HIV and mental health status and genetic information. One cannot fail to consider, in this instance, that, in addition to the costs involved by specific health conditions for the insurance company, insurers are permeable to the common bigotry that consists of believing that, unlike a person with a genetic disease, who is the innocent victim of bad luck in the birth lottery, a person with HIV/AIDS is more responsible for what has happened to her, having voluntarily exposed herself to the risk of being infected by choosing a certain lifestyle. Severe genetic conditions, no less than HIV infection, may commonly involve expensive long-term healthcare. The statement that ‘insurance companies are not interested in causal relations but in statistical correlations’ (Radetzki et al, 2003: 120) or that ‘[t]he function of risk classification is not to make value judgments with respect to certain behaviours but to evaluate levels of risk’ (Meyer, 2004: 40) is too simplistic. ‘The mistake . . . is in accepting that categories such as moral hazard or actuarial fairness could ever exist independently of the identities, norms and affiliations that constitute the lived moralities of the people acting in that social field’ (Baker, 2000: 12). Allowing access to basic insurance to be conditional upon both being within an economically and socially acceptable class of risk and upon ability to pay (an above-standard amount of money for persons found to be in a bad risk class) will not minimise the impact that social prejudices have on the equal access to opportunities of those people with ‘unpopular risks’. Alternatively, this basic insurance is best conceived as benefits provided through a compulsory universal social insurance schemes.8 In societies that consider those types of insurances as providing for basic goods, strong rationales exist for their provision through insurance plans that guarantee to everybody – and not only individuals at genetic risk – a premium that corresponds to total experience

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but not to experience as it might be segregated by smaller subgroups. Such plans, however, if not universally organised, would have difficulty surviving in a genuinely competitive international insurance market. If the policy concern is to guarantee citizens access to minimum coverage and, at the same time, avoid prejudices hindering access to insurance by those with unpopular risk factors, compulsory, universal social insurance may be the only viable arrangement. Legislation making genetic risk a specific forbidden ground of discrimination in insurance perpetuates the bias that has just been described: genetic exceptionalist legislation protecting only asymptomatic individuals with genetic risks and not, for example, HIV asymptomatic persons, seems to follow this common bigotry. Contrary to the common belief that insurance companies, because they work with statistics, reach objective and value-neutral decisions, insurance companies may in fact decide upon the social and economic credibility of individuals as they demarcate acceptable from unacceptable lifestyles.

B. Actuarial judgments usurping the status of facts Actuarial rationality is constructed on the notion of statistical facts about diversity. Yet, speaking of facts, when referring to diversity or differences – genetic or otherwise – assumes a prior evaluative judgment about what constitutes the common, an ordering of normality and a detection of deviations (Deleuze, 1980: 218). The normal, the diverse, the same and the common are not exclusively factual judgments, unless one understands as fact any spontaneous phenomenon, be it the nature of things or the social construction of common sense.9 I speak of evaluative, rather than of quantitative, judgments when diversity is at stake, because the standards by comparison to which differences are identified are not set according to what is the most frequent but according to what is the most desirable or fit. One speaks then of standard states and behaviours: the able and healthy person, the normal human genome, prudent and responsible behaviour. Those standard states and behaviours incorporated into common culture have been described by Deleuze and Guattari (1980), and by Nikolas Rose (Rose, 1999), as the source and privileged tool of domination because those evaluative judgments about standards usurp the status of facts and, as facts speaking for themselves, limit the scope of possibilities, and render alternative conceptions that would contest their objectivity unthinkable and beyond the reach of political debate. As Vassilis Skouteris observed: ‘what is real – if something like that can ever be supposed to exist in itself – does not matter; what matters is what is taken as real and in modernity what is taken as real is statistically recorded’ (Skouteris, 2004). The current challenge is precisely to question the obviousness of the representations of truth and to suggest cathartic alternatives to apparently unavoidable practices (Coors, 2003).

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That I speak of evaluative judgments, and not of descriptive ones, does not mean that there aren’t facts that can be objectively described. Rather, what I suggest is that it is not according to those pre-existing assumedly objective facts that categorisations occur in the insurance society. In the insurance society, categorisations are made according to non-facts, that is, according to risks that correspond with purely virtual facts, intellectual productions or projections10 that are not – or not yet – to reality what a signifiant is to a signifié.

C. Actuarial rationality equipped with a quasi-organic power over life Heidegger’s notion of the ‘picture of the world’ (Heidegger, 1977: 115–54), stressing the modern primacy of the representation of things over things themselves, is particularly relevant to describe the representation emerging from statistical rationality. Like in the virtual insurance system described by Ronald Dworkin (Dworkin, 2002), governing through the abstraction of genetic risk provides the authority of (illusory) transcendence and impartiality or objectivity and, paradoxically, the strength of immanence to the gene-centred identities it creates. As a ‘disciplinary’ technology, risk constructs new identities that are, and simultaneously are not, attached to existing individuals (this is especially true at a time and in places where individuals and their liberties are mostly conceived as lived in the present rather than over time), which are not easily challenged. Because risks do not target existing individuals, abstract classifications into risk categories (or risk status) are not easily contested. One may thus even speak of creative or productive rather than evaluative judgments. That is because the rational imperative of individual risk management transforms behaviours and expectations, including in the sphere of human procreation and human health, in a society that redesigns private and social welfare benefits to encourage individuals to use fewer benefits and transfer fewer risks. Whether this constitutes a progress is highly debatable.

Notes 1 See for example (Glenn, 2000: 779): ‘The process of risk selection has two faces, one that is presented to regulators and applicants, and a second that is used by underwriters . . . the Janus-like aspect of underwriting is what has allowed a great deal of discrimination to continue for as long as it has. The outward face is one of numbers, statistics, and objectivity. The inward face is that of narratives, character, and subjective judgement.’ (Glenn, 2003): ‘Insurance is a thoroughly post-modern industry . . . its foundations are narratives about risk, fate, and responsibility that allow insurers to function as though their practices were predicated on objective, knowable truths. Insurance practices are not based on truths themselves (if there are such things), but rather on interpretations of them.’ See also Van Hoyweghen (2004).

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2 On HIV and disability determinations under the ADA and privacy, see Palmer and Mickelson (2003): ‘although the nature of HIV disease has changed significantly in the United States, stigma persists because of the complicated moral issues engendered by the circumstances, stereotypes, and misinformation surrounding the disease’. 3 See also McGann v H&H Music Company, 946 F.2d 401 (5th Cir. 1991), cert. denied, 113 S. Ct. 483 (1992). 4 Doe v Mutual of Omaha Insurance, 197 F. 3d. 557 (7th Cir. 1999), appeal refused 10 January 2000, United States Supreme Court, 99–772. 5 Chabner v United of Omaha Life Insurance Company, 225 F. 3rd, 1042 (9th cir. 2000), and appeal of the circuit court decision: Chabner v United of Omaha Life Insurance Company 994 F. Supp. 1185 (ND Cal 1998). 6 Battlefords and District Co-operative Ltd v Gibbs, [1996] 3 SCR 556 at http:// www.lexum.umontreal.ca/csc-scc/en/pub/1996/vol3/html/1996scr3_0566.html. 7 The Saskatchewan Human Rights Code, Chapter S-24.1 of the Statutes of Saskatchewan, 1979 (effective 7 August 1979) as amended by the Statutes of Saskatchewan, 1980–81, c.41 and 81; 1989–90, c.23; 1989–90, 1993, c.55 and 61; and 2000, c.26: s.16(1): ‘No employer shall refuse to employ or continue to employ or otherwise discriminate against any person or class of persons with respect to employment, or any term of employment, on the basis of a prohibited ground. s. 2(1)(m.01): prohibited ground means: (i) religion; (ii) creed; (iii) marital status; (iv) family status; (v) sex; (vi) sexual orientation; (vii) disability; (viii) age; (ix) colour; (x) ancestry; (xi) nationality; (xii) place of origin; (xiii) race or perceived race; and (xiv) receipt of public assistance.’ 8 For a useful synthesis of the commodification debate, see Cohen (2003). The reasons for judgments of non-commodifiability of certain goods may be diverse and evolve over time. Life insurance has been deemed immoral in the past, for the reason that it was thought to be implying that a monetary value was put on human life. Yet, today, life insurance is mostly considered as a commodity. 9 I presuppose that there is a qualitative difference between the facts of nature and the collective constructions of meaning, be those spontaneous, because it seems to me that the possibility of human change and free action requires acknowledgement of such a qualitative difference. It is precisely that qualitative difference that determinists refute when they see in all that exists today the proof of the end of history, and the necessary consequence of a predefined human nature. 10 Ewald explained, about probability calculation, so fundamental to insurance, that it functions exactly like a ruse of rationality. It is an investigation tool aimed at superseding the impossibility of physical explanation. It is an instrument of experimentation through pure reason. We don’t merely ignore the laws of phenomena we perceive in the infinite variety of their dispersion, we also ignore their causes. Our ignorance is such that, would we infer some regularities, we would not even know whether those would be constitutive of law. The paradox of probabilities calculation results from the fact that this fundamental ignorance is not to be filled by any knowledge that would arise from discovery, that one would never leave the domain of observation. The whole art of calculation will consist in playing that ignorance against itself, to downplay it, so to say, using it against itself (Ewald, 1996: 114).

Conclusion

One paradox of governance through ‘risk’ in the ‘actuarial society’ is that while it requires individuals to be autonomous, independent and self-reliant, it also jeopardises the fundamental material basis for autonomy, independence and self-reliance or individualism, the economic basis of which was identified by Charles A Reich (Reich, 1964), over four decades ago, at the time of the American Welfare State’s expansion, as the ‘right to benefits’. The right to benefits advocated by Reich implied that benefits should be considered as an unconditional ‘property’ of the beneficiaries rather than as a conditional privilege or largesse. ‘[T]he “privilege” or “gratuity concept”,’ Reich argued, ‘as applied to wealth dispensed by government, is not much different from the absolute right of ownership that private capital once invoked to justify arbitrary power over employees and the public.’1 Recalling that ‘a power over a man’s subsistence amounts to a power over his will’, Reich suggested that: the concept of right is most urgently needed with respect to benefits like unemployment compensation, public assistance, and old age insurance. These benefits are based upon a recognition that misfortune and deprivation are often caused by forces far beyond the control of the individual, such as technological change, variations in demand for goods, depressions, or wars. The aims of these benefits are to preserve self-sufficiency of the individual, to rehabilitate him where necessary, and to allow him to be a valuable member of a family and a community; in theory they represent part of the individual’s rightful share in the commonwealth. Only by making such benefits into rights can the welfare state achieve its goal of providing a secure minimum basis for individual well-being and dignity in a society where each man cannot be wholly the master of his own destiny. History did not conform to Reich’s wishes however, as welfare entitlements have been gradually reduced and have become increasingly conditional, despite a growing awareness that individual autonomy or liberty is not a purely

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psychic capability with no material, socio-economic basis. The curious phenomenon arising today is that, despite an explicit acknowledgement of the necessity of social and economic rights for the effective exercise of civil and political rights, their implementation remains subordinate to the neverattained neoliberal objectives of growth and the ‘uncontrollable constraints’ of globalisation. Michel Foucault’s motive of ‘bio-power’ is particularly relevant again here: First of all one must set aside the widely held thesis that power, in our bourgeois, capitalist societies, has denied the reality of the body in favor of the soul, consciousness, ideality. In fact nothing is more material, physical, corporal than the exercise of power. What mode of investment of the body is necessary and adequate for the functioning of a capitalist society like ours? From the eighteenth to the early twentieth century I think it was believed that the investment of the body by power had to be heavy, ponderous, meticulous and constant. Hence the formidable disciplinary regimes in the schools, hospitals, barracks, factories, cities, lodgings, families. And then, starting in the 1960s, it began to be realised that such a cumbersome form of power was no longer as indispensable as had been thought and that industrial societies could content themselves with a much looser form of power over the body. Then it was discovered that control of sexuality could be attenuated and given new forms. One needs to study what kind of body the current society needs . . . (Foucault, 1980) This selectivity and conditionality of social and economic rights effectuates the specific form of ‘biopower’ that current society, framed in neoliberal terms, ‘needs’, but fails to provide the conditions needed by society to fulfil its task, if ‘. . . the most important task of modern society is not to offer opportunities to avoid genetic abnormalities, but to provide possibilities to live with an abnormal condition and to establish for them an acceptable quality of life’ (Hoedemakers and Ten Have, 1999). This task is critically important to anyone who adheres to the idea of progress, defined by Richard Rorty as ‘an increase in our ability to see more and more differences among people as morally irrelevant’.2 The narratives of genetics and the globally dominant messages of neoliberalism converge to make our post-genomic future visible and legible in advance through tales of a genetic mythology that promises a new transparency and precise calculability of individual health risks, behaviours and identities, and through a rhetorical insistence on the liberating virtues of privatising health insurance and dismantling welfare states. From their deferential posture towards the narratives of economics and the biotech industry, both advocates and opponents of restrictions on genetic information flows in private insurance believe in the same prophecies about the future.

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Confronted with the prophecies of a post-genomic era constructed in the tropes of writing and underwriting, the law’s primary task might not be to respond to that which the mainstream literature presents as its most urgent challenges. The law’s primary task is not necessarily to combine or balance efficiency and equality in the allocation of rights over biological or digital genetic information, conceived essentially as new commodities, but to provide the legal resources necessary to allow contestation of the dominant presentation of efficiency and redistribution as generally competing values.3 What is at stake in the opposition between efficiency and fairness is not an opposition between facts and norms, as efficiency is never an autonomous and selfsufficient fact, but is always contingent upon a proportion or a comparison. Yet, because efficiency creates the norm against which individual behaviours are evaluated, it impairs rather than eases the emergence of alternative views and alternative standards against which an assumed efficient situation could be criticised. The pragmatic research of efficiency thus seems to generate more conservatism than change and evolution.4 There is always an empty space, a ‘no-man’s land’, a discrepancy between the ‘real’ or the essence of things on one hand, and the information and knowledge that are being constructed over, about or around that ‘reality’ on the other hand. This is inevitable, as information and knowledge always rely on language, which is always in part metaphoric. That empty space or discrepancy is the interstice where power slides. The prowess of power resides in its ability to make people forget the metaphorical character of language, up to a point where words and objects are taken for each other and where uncertainty fades in oblivion.5 In the end, the driving force and stake of power consists in gaining the capability of orienting the meaning of things strongly enough to make that meaning evident and uncontested, to make it appear to correspond exactly to the ‘real’ or the essence of things. Power is what makes words adhere to things in an uncontested manner. Power and knowledge are thus not opposed: they are co-produced. We are confronted with a highly performative mechanism where reality eludes information, but where information, processed by public and private institutions (insurers, employers, etc.) according to the socio-economic algorithms in use, shapes identities, behaviours and expectations. The fact is that we have never been so completely embedded in what Baudrillard described as the ‘semiurgic society’, ‘in which signs take on a life of their own and constitute a new social order structured by models, codes and signs’.6 A specificity of biotechnology as a new representational regime and of genetic risks as a new mode of governance is their proximity, the immediacy of their implementation in the body of individuals. Beyond issues of fairness and justice, what is at stake is the definition of a concept of the self either as autobiographical animal,7 natural preserve for individuation, or as rational administrator of a relatively depersonified human capital constituted by genetic talents and acquired skills.

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Thinking inside the neoliberal framework, one is predisposed to think about those issues not in terms of the alternative conceptions of the self mentioned above but rather in terms of risk-adverse or gambler personalities.8 The intuition I have in this regard is that there is a subtle category in the person which resists her own choices (and that she cannot trade nor waive and that cannot be put at stake in a gamble) and which constitutes the Archimedean point from which to assess and revise first-order preferences according to a reflexive process constitutive of individual autonomy. That category of the person is what allows self-development, self-flourishing, individual freedom, self-determination, and the exercise of political liberties, in the same manner as there is in the human genome, ‘junk DNA’ which does not have any known function (it does not code for any protein), but which plays an important role in our evolution as species. That category of the self, that otherness in oneself, that should remain independent from necessity, utility and the like is particularly endangered by the growing conception of the self as rational administrator of its human capital (and the allocation of individual property rights, or of tradable privacy rights on genetic information, might only increase the phenomenon) rather than as an autobiographical being. The value of that endangered category of the self is not rooted in a specific metaphysical conception of the essence of human life, but rather ensues from the consideration that this is what allows people to realise their capacity for political deliberation and contestation. Contemporary insistence on individual autonomy, restricted to the notion of individual informed consent – be it grounded on Lockean conceptions of self-ownership, or on the political liberal ideal of governmental neutrality (implying that unless harm is caused to others, governments should respect divergent conceptions of the good life,9) – often prevents competing alternative versions of the self from becoming visible and preserves current institutional settings from accommodating the widest variety of autobiographical beings. Indeed, the notion of informed consent unduly exempts us from assessing the legitimacy (not only in terms of consent but also of contestability) of the dominant cooperative framework, the basic structure of society, and the disciplines through which individual preferences are formed. When biotechnology takes the human being as the object of its potentially transformative action, schizophrenic virtues may seem necessary for lawyers in order to face the challenges raised by the ‘genetic revolution’. The autonomy of law and norms as human creations and, more generally, the distinction between normative and descriptive levels, seem to be fundamentally questioned: are law and human rights already always included in the category of objects situated under the imperium of biotechnology? How could the law keep its independence and distance from a genetic revolution said to have the potential to transform what it is to be human? Jürgen Habermas described the increasing perplexity accompanying the approach of current and future issues raised by the ‘genetic revolution’ as ‘the feeling of giddiness which

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seizes us when the ground beneath our feet, which we believed to be solid, begins to slip’10 (Habermas, 2002). Those questions reopen, in the most radical manner, the debate about the law–science relationship. With the aim of deconstructing a set of preconceptions that favour ‘hidden truths’ over ‘surface’ phenomena, this book has explored the complex epigenetic process through which ‘invisible’ truths – produced by genetic technology (the ‘unveiled genetic secrets’), by neoliberal governance schemes (abiding by the principle of the ‘invisible hand’, that is, the faith that institutional arrangements based on profit motives spontaneously attain equilibrium), by social contract theorists (anchoring their thoughts to the mythical ‘original position’ reference point)11 – reinforce each other and are thus granted privileged explanatory and normative meanings over currently obvious and visible disparities in wealth and power. If human genetics raises new ethical, legal and social questions, it allows first and foremost the resurfacing of old questions that had been made silent by our predisposition to see the world in a specific manner, through the prism of conceptual dichotomies – particularly the conceptual oppositions between science and society, facts and values, naturality and artificiality, subjects and objects, liberty and determinism, chance and choice, health and disease, the ‘normal’ and the ‘abnormal’. Acknowledging the blurring of those conceptual oppositions might well provide the more radical opportunity to enter at last into a genuinely reflexive post-modernity. In a post-conventional configuration, one would have to define human beings as necessarily marked by difference, never completely contained in themselves, never complete in the present but always over time. Normative consequences derive from that conception of the self: rights should not merely be allocated with the exclusive aim of maximising agency or welfare in the present, rights should also be conceived as guarantees against the complete condensation or swallowing of the self by ‘presence’ – what is there and what is now. A threshold level of ‘decommodification’ of human body parts,12 human work, human thought, must arguably also be attained in order to allow individuals to realise their self over time. Universal provision of basic insurance has a crucial role to play in this regard. It also has a crucial role to play in enabling genuinely autonomous thinking, which is not a purely psychic individual capability but needs a material and socio-political basis. Here we see that the importance of sustaining the universality of socio-economic rights – rather than the scenarios of privatisation and selectivity presented to us as an ‘unavoidable’ social evolution – not only derives from the liberal imperative of equalising opportunities to participate fully in the presently dominant cooperative framework, but also from the necessity to keep dominant representational regimes open to contestation. I believe that a fundamental role of law consists in guaranteeing the conditions necessary to both individual deliberative autonomy (the individual process of self-governance) and collective deliberative democracy (the group-oriented process for critical discourse) (Schwartz and

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Treanor, 2003: 2,163), and to adapt institutional settings to the widest possible variety of autobiographical beings.

Notes 1 This refers to the infamous Lochner era in which, from 1905 until 1937, the Supreme Court systematically invalidated legislative attempts by the states to regulate socio-economic relations, interpreting the free contract doctrine and the due process clause as constitutional prohibitions of governmental interference in that field. 2 Rorty (1998: 11), cited in Ignatieff (2000). 3 See McCluskey (2003: 805) ‘A new consensus has formed for the view that social welfare programs generally exact a trade-off from overall economic growth – though many still disagree about the degree to which equity should be sacrificed for efficiency. . . . This post-Keynesian economic orthodoxy continues to present a policy choice between the goals of efficiency and redistribution, now simply rearranged as generally competing values.’ 4 The dominant paradigm has been described by Chantal Mouffe as post-political, as emphasising consensus to an extent that makes conflicts disappear. See Mouffe (2005). 5 ‘La souveraineté se présente comme une incorporation de l’état de nature dans la société ou, si l’on préfère comme un seuil d’indifférence entre nature et culture, violence et loi, et c’est justement cette distinction qui constitue la spécificité de la violence souveraine’ (Agamben, 1998: 44). 6 Best and Kellner (1991: 118). See also Baudrillard (1972 and 1981). 7 The expression has been inspired by the collective book (Derrida, 1999). 8 For Richard Rorty, for example, Rawls’s view is a ‘thoroughly historicist and anti-universalist’ view, which ‘no longer seems committed to a philosophical account of the human self, but only to a historico-sociological description of the way we live now’. According to him, Rawls is not ‘supplying philosophical foundations for democratic institutions, but simply trying to systematise the principles and institutions typical to American liberals’. See Rorty (1988) cited in Sandel (1993) and in Sadurski (2001). 9 ‘A belief in individual autonomy often underlies respect for voluntary agreements on the theory that without harm to others, governments ought to respect divergent conceptions of the good life. Respect of this sort is sometimes described as government neutrality, which is seen as an important guarantor of liberty’ (Sunstein, 1989). 10 See also Edelman (1999: 398): ‘Ainsi, devant l’invasion de la science qui bouscule des notions aussi fondamentales que celles de liberté, de personne, de généalogie, d’humanité, nous sommes démunis: car celles que nous croyions si bien connaître au terme d’une longue familiarité, nous les reconnaissons a peine, déguisées et fardées sous les étranges oripeaux de la modernité.’ 11 Foucault (1980) himself said he believed ‘the great fantasy is the idea of a social body constituted by universality of wills. Now the phenomenon of the social body is the effect not of a consensus but of the materiality of power operating on the very bodies of individuals’. 12 Genes, as other parts of the human body, are increasingly perceived as commodities. The reasons for this are complex but some blame biotechnology, especially genetic engineering and the prospects of cloning for encouraging selfobjectification, in which people perceive themselves as both subjects and objects,

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transformable and even manufacturable through biotechnological processes. See Sharp (2000), cited by Everett (2003). ‘When bodies and body parts become seen as objects, mere things, they become treated as exploitable resources, as marketable goods. Body parts are extracted like a mineral, harvested like a crop, or mined like a resource’ (Andrews and Nelkin 2001).

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Index

abnormality: evolution of concept and determinants 48, 100–3, 137, 140 abortion: funding of 110–11, 119, 130–1; and the ‘right to privacy’ 110–11, 114, 188–9; screening and control of within ‘racialised’ communities 130–1 About, E 197, 227 ADA (Americans with Disabilities) Act (1990) 57–8, 62, 134, 237 adaptation: as adaptability over time vs adaptation in the present 107, 118; conformism as product of human 83; as leading value in neoliberal governance 171; to ‘normal species functioning’ 105 adverse selection 5, 173, 197–8, 200–20, 222, 228, 230, 248 Advisory Committee on Genetic Testing (ACGT, UK) 229 Agamben, G 39, 258 Alper, J 173 Americans with Disabilities (ADA) Act (1990) 57–8, 62, 134, 237 ancestry: incidence of on prevalence of specific genetic characteristics in groups 125–9, 146, 149 Andrews, L 19 Annas, G 18 archaeology, archeological: Foucauldian posture 2–3, 8, 143, 168 Arendt, H 39, 217, 230 Aristotle: conception of nature by 104; description of epigenesist by 37, 49 Arrow, K 200–1, 219–20 authenticity: the ‘gene’ as the locus of 68, 108; of genetic ‘truths’ vs falsity of directly observable appearances 123–6; the present as unique figure of 105

‘autobiographical’: narrative 39; beings 195, 255, 256, 258 autonomy, personal 253, 256–258; and the argument from coercion for legal intervention in the insurance market 193; and compulsory genetic screening 130; concept of 92; as fundamental principle of bioethics vs medical paternalism 58, 88, 191; and the imperative of genetic ‘self-knowledge’ 68–71, 79–85, 176; and interconnectedness 90; as negative right 119; and reproductive rights 130–3, 188–9; and self-determination of job applicants or employees in decisions about risks at work 57–63 ‘average man’ (concept) 103–4 Bachelard, G 36, 49, 121 Backus, R 75 Baker, E 83 Baker, T 165, 215 Barry, B 141 Batkin, R 74 Baudrillard, J 255 Beckwith, J 173 behavioural epidemiology 63; and behavioural turn in genetic public health 65–8; contested statistical validity of 7, 65; difference of, with classic epidemiology 65 behavioural genetics: based on limited statistical correlations 105; as ideological weapon against social policy 85–7; initiatives of the National Human Genome Research Institute in the field of 65–7; and racial prejudices 85; refutation of 50

296

Index

Bell Curve, The 86 Berlin, I 68–9, 80–1 Beveridge, W 168, 193 biobank: Icelandic 77–8; implied or explicit consent to inclusion of personal biological sample and information into 78; individual vs familial consent for participation in 2, 78; and the moral principle of ‘genetic solidarity’ 122; pre-existence of universal health care system as practical precondition to pharmacogenomic research on nationwide 77–8 biology: ‘central dogma’ of 14–15, 31, 41; the ‘linguistic turn’ in 37–40 biopower 254 Bostanci, A 27 British Human Genetics Commission 121, 234 Brock, D 173 Buchanan, A 105, 109, 173, 206–7 Buin, Y 107–8 Burke, E 112–13 Burlington Northern Santa Fe Railway 61–2 Burnett, R 77 Busquin, P 17 Canguilhem, G 103, 107 Capron, A 101 Carmona, R 66 category: of genetic diseases 101; inexistence of ‘race’ as a genetic 127–9; invisible membership in a racial 125 causation, genetic: privilege of, over complex environmental contributions 25, 40–1 Celera Corporation 16, 42 Center for Disease Control and Prevention (USA) 20, 66 Chandler, S 210 Charter of Fundamental Rights (EU) 157, 165, 179 Civil Rights Act (USA, 1964) 134 Cohen, J 170, 175 Collins, F 16, 24 Committee on Homosexual Offences and Prostitution Report (Wolfenden) 188 commodification: decommodification vs 257; of personal information and informational capitalism 170–2; of

privacy 192–5; synthesis of debates about 251 communicable disease: and origins of the term ‘exceptionalism’ 233 confidentiality, genetic: vs duty to prevent harm to others 73; individual patient’s right to, vs legitimate interest of family members to know about genetic information relevant to them 71–8; stricter rules for HIV test results 233 consent, individual informed: vs contestability 256; to disclosure of genetic test results to third parties 71, 73–6; vs indisponibility 191; individualist conception of consent requirements 70; job applicant or employee’s consent to risks inherent to taking a particular job 60; lack of, preceding genetic testing 45, 62, 134–5; legal consequences of 193–4, 256; presumed vs explicit, in the constitution of genetic database 78; to provide tissues samples for research purposes 53; requirements set in international legal and regulatory instruments 158; specific forms for HIV testing 233 contractual, freedom 154, 183, 191, 193, 195, 198, 202, 221–2 Convention on Human Rights and Biomedicine (Council of Europe) 98–9, 102, 156 Correns, C 13 Council Directive 95/46/EC on the protection of individuals with regard to the processing of personal data 191, 193 Council Directive 2000/78/EC establishing a general framework for equal treatment and occupation 57, 60–1, 237 Crick, F 13–14 Curry, E 62 Daniels, N 173 Darwin, C: theory of evolution 103, 115, 145 Darwinism: gene- 26; social 218 deconstruction 37, 47, 69, 174 Deleuze, G 3, 9, 47, 249 deliberative democracy 169, 171, 257

Index Department of Health, Education and Welfare (USA) 238 deregulation and regulation, insurance: and access to genetic information 209–19; threshold systems of 199–202 Derrida, J 36–7, 102 De Schutter, O 60, 217 Devlin, P 189 De Vries, H 13 differences and differentiation, genetic: contractual freedom vs legal prohibition in relation to differentiation 183–202; and theory of moral hazards in insurance 219–20 dignity, human: and employment 178; and the human genome 53, 98–9, 157; inalienist arguments based on 154; and inconditionality of welfare entitlements 253; and legitimacy of legislation 189 disability: definition of genetic ‘risk’ as, in the context of disability nondiscrimination legislation 237–40; HIV positive status as 238–9; individual imperative of prevention and avoidance of 212; and reasonable accommodation 248 disadvantage (concept): reluctance to acknowledge need for collective remediation for individually experienced 55–63 disclosure of genetic information: compulsory 198; and individual autonomy 79–85; intra-familial 71–9; regulation in Europe and the United States 153–9; voluntary, in employment and/or insurance contexts 184, 192–4, 202, 208 discrimination: genetic, in access to genetic tests 139; genetic, American and European regulatory attitudes towards 153–159; genetic, in employment 5, 19, 56–63, 237, 240; genetic, in health care insurance 166, 172; genetic, in insurance 67, 123, 154–155; genetic, worsened by pre-existing stigma and prejudices 141; pretended ‘objectivity’ of genetic 124–5 disease and diseases, genetic: comparison with infectious diseases 124; evolution of concept and determinants 100–3

297

extension of the notion of 100–1, 106; predictions for research concerning 23–4; prevalence in specific populations 127–39; reluctance to acknowledge need for collective remediation 55–63; risk and behaviour explanations for 63–85; value judgements about 248; see also disability Dolgin, J 69, 90 domination: disadvantages resulting from social history of oppression and 86, 110; evaluation standards and 249; non-juridical dispositives of 84, 113 Dreyfus, R 99–100 Dulbecco. R 96 Duster, T 54, 128, 129, 136, 144, 149 Dworkin, R 250 Economic and Social Council (ECOSOC) (UN) 158 Educability and Group Differences (Jensen) 86 EEOC (Equal Employment Opportunities Commission) (USA) 58, 62, 87, 159, 238 ELSI (Ethical, Legal and Social Issues) programme 18–20 Enforcement of Morals (Devlin) 189 English, V 69 enhancement, genetic 64–5, 95, 108–14, 119, 140 enlightenment, rhetoric of genetic 67, 142, 175 Entwicklungsgeschichte der Their (Von Baer) 36 epidermalization 126, 164 epigenesis, epigeneticists 37–8, 49, 109, 175 Epstein, R 163, 186, 214 equality: of opportunity 5, 58, 110, 142, 164, 209, 221–3, 241–2, 245 essentialism, genetic: in approach to human genetic variations 97; in debates about genetic engineering of human beings 108; in debates about the right to know and not to know 68–9 Ethical, Legal and Social Issues (ELSI) programme 18–20 ethnic drug: BiDil 136–8 eugenism: liberal 108–14; ‘new’ 64, 93; of the 1930s and 1940s 63, 103, 131–3

298

Index

European Patent Office 138 European Social Charter 207 European Society of Human Genetics 139, 200, 211 evolutionist development of law 174, 181 Ewald, F 65, 103, 196, 197 exceptionalism: definitional issues 232–40; HIV 233; normative deficiencies 240–242 explanations, environmental: vs genetic cause within genetics study 40–1 fairness, actuarial: in relation to adverse genetic selection 205–9 family, familial: disclosure and management of genetic information 71–9; history as indicator of individual genotype 234 Family History Initiative (USA) 65–7 Fanon, F 126 Financial Privacy Act (1978, USA) 190 Flomer, R 75 Foucault, M. 47, 55, 84, 131 190, 254 Franklin, R 13–14 freedom, individual: impact of genetic information upon 79–85; vs prohibition in relation to genetic differentiation 183–202 freedom of contract: right to within socio-economic systems 186–90; see also ‘contract rationality’ Freudian psychoanalysis: comparison with human genetics 68 From Chance to Choice (Buchanan) 109 functioning, ‘normal’: definition of 103–8; see also ‘normality’ Galloux, J-C 124 Galton, F 103 Garante per la protezione dei dati personali 75 genealogy: as disease risk factor 65–7 genes and genetics, human: arguments discouraging adoption of legislative approach to 233–40; changing discourses within genetics research 35–48; history, and research discourses surrounding 13–14, 63–85; human rights approach 190–2; predictions for research concerning 23–5; problems of definition 25–7; see also Human Genome Project; information, genetic;

insurance and insurers; protection, genetic genetic information, genetic data: definitional issues 233–6 genetic non-discrimination legislation: impracticability of 233–40; normative deficiencies of 240–2; prophylactic character of 174–7 ‘geneticisation’ 3, 4, 35, 124, 241, genotype vs phenotype 13, 23–5, 32, 236, 100–1, 124, 211, 236 Gide, A 161 Gilroy, P 8, 125–6 Godard, B 210 Gottweis, H 47 Greely, H 166 Griffiths, G 27 Guattari, F 249 Habermas, J 95, 256–7 Handler, J 162 Harris, J 80 Hayek, F 170–1 Health Sector Database Act (Iceland, 1998) 78 Hedgecoe, A 40 Heidegger 250 Heimer, C 245 Herbert, M 63 Hernstein, R 86 history, family: as disease risk factor 65–7 HIV: and Americans with Disabilities Act 238–9, 251; comparison of actuarial significance of HIV status and of genetic information 212, 235; exceptionalism 233; genomic research and fight against 31, 43; and insurance 231, 246–9 Hoedemaker, R 101 Holmes, E 201 human capital 93, 171, 255–6 Human Fertilisation and Embryology Act (1990) 71–2 Human Genetics Commission (UK) 31, 121, 229, 234 Human Genome Diversity Project (HGDP) 96–7 Human Genome Project (HGP) 15–21, 64, 96–100, 127 Human Genome Project Organization (HUGO) 16

Index Human Genome Research Institute (HGRI) 43, 66 Human Rights 5; American approach 186–90; approach to genetic information 190–2; conventionalist vs universalist conceptions of 189; Council of Europe Convention on Human Rights and Biomedicine 98, 102, 115, 146, 156, 157, 191; European approach 190–2; European Convention on 190, 192; European Court of 71; fundamental ambiguity inherent to 186; horizontal effect of 192, 224–5, 190, 192; Human Rights Act of 1988 72; protection in area of genetics 156–9; reductionist conception of 113; Saskatchewan Human Rights Code 247, 251; Unesco International Declaration on the Human Genome and Human Rights 30, 53, 98, 156; Universal Declaration of 165 Huntington’s chorea 101, 199, 201–2, 212, 238 Hyde amendment (USA) 111 Individualisation of risks 4, 234; paradox of 195–6, 221; by reference to a ‘normal’ human genome 196; of regulatory rationales 191 individuals, disabled and disease asymptomatic: relevance within field of insurance legislation 237–40 industries, insurance see insurance and insurers information, genetic: accessibility and disclosure of 41–7, 71–9, 209–19; arguments discouraging adoption of ‘genetic exceptionalist’ legislation 233–40; human rights approach to 190–92; impact of policies 166–74; influence on individual freedoms and autonomy 79–85; privacy vs property rights within field of 183–92; regulation practice in USA and Europe 153–9; see also knowledge, genetic insurance, health: impact of genetic information policies on 166–74; regulation and protection of genetic information 155–8 insurance, life 193–5, 197, 199, 200–3,

299

209–11, 214, 216, 221, 228–9, 237, 246–7 insurance and insurers: changing social role of 245–50; contractual freedom vs legal prohibition 183–202; future priorities and structures for collective insurance 161–74; impact of genetic differentiation upon 219–20; importance of retaining for its objectivity 246–9; protection against adverse effects of genetic technology 218–19; strengths and weaknesses of genetic insurance 198–9; see also deregulation and regulation, insurance; law and legislation, insurance; selection, adverse genetic; underwriters and underwriting; see also elements of process eg judgements, actuarial International Covenant on Economic, Social and Cultural Rights 165 International Human Genome Sequencing Consortium 17 Inyama Declaration on Human Genome Mapping (1990) 20 IQ: pretended correlation with ‘race’ 85–6, 116 Jacob, J 38–9 Jasanoff, S 142–3 Jensen, A 86–7 Johannson, W 13 Johnston, M 218 judgements, actuarial: role in usurping status of facts 249–50 justice: as reciprocity vs the capability approach and the democratic deliberative conception of justice 171; social vs actuarial justice (fairness or equity) 205–9, 228 Kane, E 44 Karpin, I 69 Kelly, S 140–1 Keywood, K 80 Kidd, K 127–8 Kitcher, P 204 Klick, J 83 knowledge, genetic: challenges and difficulties surrounding question of 68–71; changes in production of 47–8; influence on individual freedoms

300

Index

and autonomy 79–85; vs power nexus in relation to governance 47–8 Korn, D 122 Koshland, D 63 Kulynych, J 122 Kuran, T 242 LabOne Canada 67 Lacan, J 12, 36–7, 49, 108, 118, 213–14 Lappé, M 15, 21 law and economics 82; representations of individual motivations 214, 230; value judgements predating classifications of productive vs non-productive activities 163, 216; views on privacy 185–6, 195, 227 Leblanc, G 108 Lee, S 138 Lemke, T 87, 93, 96–7, 212, 219 Lemmens, T 165 Lessig, L 46–7 Lewins, T 25 Lewontin, R 37–8, 128 liberalism: alienist tradition 194; European 192; inalienist tradition 193–4 liberties, individual: impact of genetic information acquisition upon 79–85 life, living systems: complexity of 22–7, 235; distinction between zoë and bios 39; information as principle of 38–9 ‘linguistic turn’ (concept): within biology 37–40 literacy, genetic 4, 56, 66, 70, 219, 237 Locke, J 168–9 Lowden J 67–8 McCaffery, E 242 McCluskey, M 163, 207–8, 218 Malpigi, M 37 Martin, P 176 Meier, D 75 Melo-Martin, I 218 Mendel, G 13 metaphors,: ‘genes’ as metaphors 27, 63, 97; machinistic, in biology 38–40; theory-consitutive and pedagogicalexegetical 27, 35, 37, 47; the underclass 140; the veil of ignorance 142, 168, 175 metaphorical nature of scientific discourses 27, 36, 48–50

Mill, J.S 104 Monod, J 38 Morin, E 38 Moss, L 26, 41 Murphy, T 15, 21 Murray, C 86 mutuality: and consumerist model of social contract 169, 170; as principle governing private provision of insurance 4, 196–8, 200, 207–8, 222, 227–8; see also reciprocity Mykitiuk, R 208 Myriad Genetics 138–9 National Sickle Cell Anaemia Control Act (USA, 1972) 129–30, 134 ‘naturalness’ and ‘nature’: definition of 104–5; See also Aristotle Nelkin, D 99–100 neoliberal: choice to live under neoliberal rules 223; disciplinary tools in neoliberal society 70; dreams of equality 108–9; ideology and framing 164, 170–1, 176; market rationality 5; normopathy as effect of neoliberal teleology 107; redistribution of social insurance towards employers and capital-owners 207; teleology and the definition of ‘normal species functioning’ 103 neoliberalism: application to future welfare state requirements 161–74; and biopower 254; convergence with narratives of genetics 4, 254–8; dominant message of 162, 178, 254; general crisis of welfare state as predisposed belief of 161–3; institutional shifts accompanying 6; and interest for genetic perspective on inter-individual differences 6 Netherlands: use of threshold systems insurance regulation 199 New, M 73 New Deal (USA) 165, 180, 224 New Scientific Spirit, The (Bachelard) 121 Newson, A 40 Nickens, H 130 Nietzsche, F 36, 53 Nightingale, P 176 non-directiveness 62 normality: evolution of determinants

Index 96–100; Nuffield Council definition 106–7; see also abnormality; disease; functioning, ‘normal’, normopathy normopathy, normopath 108, 118, 180 Novas, C 173 Nuffield Council: definition of ‘normality’ 106–7 objectivity of insurance underwriting: lack of, reason to prefer public insurance schemes 246–9 Occupational Safety and Health Act (USA, 1970) 60, 87 O’Neil, O 92, 209, 235 On Truth and Lies in a Nonmoral Sense (Nietzche) 36 original position 142, 168, 175, 181, 257 Oyama, S 38 Pack, G 74 Parisi, F 83 Parlett, D 184 Patent and Trademark Office (USA) 46 patents: impact on genetic reductionism 41–7; use of ‘race’ as element in development of 138–9 paternalism: of employers 58; see also non-directiveness Perri6 170 pharmacogenomics: use of ‘race’ concept within 136–8 policies, social: impact of genetic research upon 18–21 population thinkers 98, 102 Posner, R 185–6, 214, 218 power: vs knowledge nexus in relation to governance 47–8 preformationism, preformationists 37–8, 49, 89, 174 pregnancy: screening and control of within ‘racialised’ communities 133–5 privacy: arguments discouraging legislative approach 233–40; challenges surrounding question of 68–71; commodification of 192–5; confidentiality and 191–2; and data protection in the United States 190; instrumental value of 195; policies in relation to 174–7; vs property in genetic information 183–6; and the ‘right to free contract’ in American

301

constitutional tradition 186–90; structural, collective value of 194–5 privacy, human rights: protection in area of genetics 156–9 privacy, right to: within socio-economic systems 186–90 Privacy Act (USA, 1974) 190 Privatization: of social insurance provision schemes 162–3, 164, 177, 204 prohibition: vs freedom in relation to genetic differentiation 183–202 property: intellectual, see patents; vs ‘privacy’ within field of genetic information 183–92 prophylactic policy 174–7, 181 proportionality (concept): assessment of genetic discrimination in insurance 220–2 PXE International 45–6 Quetelet, A 103 race (concept): behavioural genetics and resurgence of racial prejudices 85–7; history of past and recent misuses of genetics in ‘racialized’ communities 129–35; and patent specification 138–9; and pharmacogenomics 136–8; refutation of the existence of human ‘races’ as genetic categories 127–9 Radetzki, M 79, 162, 164, 165, 203 Radin, MJ 194 rationality, actuarial: usurping status of facts 249–50 rationality, contractual: arguments supporting legal interference in relation to social insurance 192–5 Rawls, J 142, 168, 206 reciprocity 163, 171; as approach to social insurance 170–1; see also mutuality redistribution: as principle of social insurance systems 163 reductionism: ideological 3, 39; methodological 35, 38, 39 Reflections on the Revolution in France (Burke) 112–13 regulation, genetic: human rights approach to 190–2; impact on adverse selection 214; practice and policies in USA and Europe 153–9 regulation and deregulation, insurance:

302

Index

and access to genetic information 209–19; threshold systems of 199–202 Rehabilitation Act (USA, 1973) 237, 238, 247 Reich, C 253–4 representational regime: genetics as new 3–5, 9, 69, 143; insurance as new 245–50 research, human genetic: governance of 18–21; history of development and discourses 63–85; impact of notion of universal application 121–3; validity and desirability of within behavioural field 106 responsibility (concept): policy approaches to in relation to genetic risk 55–63, 172–4 Rhodes, R 79–80 ‘right to free contract’: approach to within socio-economic systems 186–90 ‘right to privacy’: approach to within socio-economic systems 186–90 rights, human: approach to genetic information 190–2; protection in area of genetics 156–9 risk (concept): as element in private insurance 245–50 risks, genetic and health: causes, policy attitudes and impact 55–85, 172–4; individualisation of within social insurance 195–7; predictions of health for genetic research 23–4; see also effects of eg selection, adverse genetic Rorty, R 254 Rosanvallon, P 142, 167–8 Rose, H 77–8 Rose, N 173, 249 Rothman, K 123 Rothstein, M 173, 210 Royal College of Physicians (UK) 76 Rubenfeld, J 105 Rushton, J 86–7 Sander, R 85–6 Satre, J-P 95 screening and control, genetic: practice within ‘racialised’ communities 129–35 self-interest: as approach to social insurance 168–9 Sen, A 81; capability approach 171 sequences and sequencing: human

genome 22–3; patentability of genetic 41–7 Sherwin, S 55–6 Shildrick, M 102 Shim, J 137 sickle-cell anaemia 23; associated survival advantage with regard to malaria 127; delayed diagnostic in ‘white patients’ 128; new-born screening 129; screening and control of within ‘racialised’ communities 64, 129–30, 133–5 Simpson, C 55–6 Simon, J 165 Skouteris, V 103 social contract 143; consumerist model of 169; deliberative model of 169; nature of, in the United States and Europe 165; new, in view of the ‘genetic information era’ 142; private insurance as limited 195–7, 221 social insurance see insurance and insurers Social Insurance and Allied Services (Beveridge) 168 Sommerville, A 69 specifications, patent: use of ‘race’ as element in 138–9 status, genetic: relevance within field of insurance legislation 236–7 sterilization, mandatory 63, 129, 131–3, 147 Stiglitz, J 219 Stotz, K 25–6 subjectivity: as factor in adverse genetic selection 214 Sweden: use of threshold systems insurance regulation 199 Switzerland: use of threshold systems insurance regulation 199, 200 syphilis: screening and control of within ‘racialised’ communities 133–5 Tabarrok, A 198 Tarasoff, T 73 Task force on Genetic Testing (USA) 20 ten Have, H 101, 175 tests, genetic: expectation of accuracy 210–14; strengths and weaknesses in guaranteeing support for insurance 166–72 Thacker, E 18, 126

Index thalassaemia 128 therapy, gene 18, 29–30, 99, 130 Threlkel, J 73 Tishkoff, S 127–8 Translating Advances in Human Genetics into Public Health Action report 20 Truth and Justification (Habermas) 95 truth discourses 2, 95, 164; associated with actuarial judgements 249; genetic 3, 6, 8, 35, 37, 47–8, 68, 82, 124–6, 140, 142–3; and illusions 36; and mistake 213–4; relation with success 41 typologies: of ‘normality’ 97–9; see also models typologists 97, 102 underclass, genetic: exaggerated fear of the creation of a 140–3; genetic enhancement debate and the fear of creating a 109 underwriters and underwriting: assessing proportionality within 220–1 Unesco International Declaration on Human Genetic Data 157

303

United Kingdom: use of threshold systems insurance regulation 199–202 United States Patent Act 42 universality: narratives of 121–3 utilitarianism: as approach to genetic information regulation 153–4 variation, genetic: relevance within field of genetics 127–9; see also screening and control, genetic veil of ignorance 88, 142, 161–8, 175, 180, 181, 198 Von Baer, K 37 Von Tschermak, E 13 Watson, J 13–15 welfare state: impact of availability of genetic information on 166–74 What is Enlightenment (Foucault) 55 Wickler, D 173 Wolf, S 141 Wolfenden Report (1957) 188 World Health Organization: definition of health 95