Perspectives on Genetic Discrimination Over the past 15 years, a series of empirical studies in different countries have shown that our increasing genetic knowledge leads to new forms of exclusion, disadvantaging and stigmatization. The spectrum of this “genetic discrimina- tion” ranges from disadvantages at work, via problems with insurance policies, to diffi culties with adoption agencies. These empirical studies on the problem of genetic discrimination have not gone unnoticed. Since the beginning of the 1990s, a series of legislative initia- tives and statements, both on the national level and on the part of international and supranational organizations and commissions, have been put forward as ways of protecting people from genetic discrimination. This is the fi rst book to critically evaluate the empirical evidence and the theoretical usefulness of the concept of “genetic discrimination.” It discusses the advantages and limitations of adopting the concept, and offers a more complex account distinguishing between several dimensions and forms of genetic discrimination. Thomas Lemke is Heisenberg Professor of Sociology with focus on Biotech- nologies, Nature and Society at the Faculty of Social Sciences of the Goethe- University Frankfurt/Main in Germany. His research interests include social and political theory, biopolitics, and social studies of genetic and reproduc- tive technologies. 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D’Augelli 99 Changing Gay Male Identities Andrew Cooper 90 Global Justice Activism and Policy Reform in Europe 100 Perspectives on Understanding When Genetic Discrimination Change Happens Thomas Lemke Edited by Peter Utting, Mario Pianta and Anne Ellersiek 91 Sociology of the Visual Sphere Edited by Regev Nathansohn and Dennis Zuev 92 Solidarity in Individualized Societies Recognition, Justice and Good Judgement Søren Juul This page intentionally left blank Perspectives on Genetic Discrimination Thomas Lemke NEW YORK LONDON First published 2013 by Routledge 711 Third Avenue, New York, NY 10017 Simultaneously published in the UK by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN Routledge is an imprint of the Taylor & Francis Group, an informa business © 2013 Taylor & Francis The right of Thomas Lemke to be identified as author of this work has been asserted in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. 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. Trademark Notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. Library of Congress Cataloging-in-Publication Data Lemke, Thomas. [Polizei der gene. English] Perspectives on genetic discrimination / by Thomas Lemke. pages cm — (Routledge advances in sociology ; 100) Includes bibliographical references and index. 1. Genetic screening—Social aspects. 2. Discrimination. 3. Genetic screening—Moral and ethical aspects. 4. Human genetics. I. Title. RB155.65.L4613 2013 616'.042—dc23 2012042912 ISBN13: 978-0-415-87858-6 (hbk) ISBN13: 978-0-203-52611-8 (ebk) Typeset in Sabon by IBT Global. Originally published as Die Polizei der Gene. Formen und Felder genetischer Diskriminierung, by Campus Verlag (2006). Contents Introduction 1 1 Disease as Error? Foundations and Limits of Molecular Medicine 9 2 Genetic Discrimination: Empirical Evidence and Regulatory Responses 23 3 Empirical Defi cits and Normative Contradictions: Problems in the Analysis of Genetic Discrimination 42 4 “A Slap in the Face”: An Exploratory Study of Genetic Discrimination in Germany 60 5 The Regime of Truth and Dimensions of Genetic Responsibility 79 6 Conclusion: Pitfalls of Criticism 107 Notes 115 Bibliography 135 Index 161 This page intentionally left blank Introduction In his book The Normal and the Pathological, Georges Canguilhem, the French historian of science, describes the emergence of a new concept in pathology in the early 20th century: the concept of error. This concept signifi ed a disorder which was not caused by an external pathogen, but by the body’s genetic constitution. When, in 1909, Sir Archibald Garrod coined the term “inborn errors of metabolism” for inherited metabolic dis- orders, this proposed defi nition was still based on the expressiveness of a metaphor. However, in the course of the reformulation of fundamental biochemical and genetic problems in cybernetics, information, and com- munication theory terms during the second half of the 20th century, the idea of hereditable errors was generalized and expanded. The concept of disease has changed in the wake of the new conception of living matter as “code” or “information”: [T]he negative of order is inversion, the negative of sequence is con- fusion, and the substitution of one arrangement for another is error. Health is genetic and enzymatic correction. To be sick is to have been made false, to be false, not in the sense of a false bank note or a false friend, but in the sense of a “false fold” [i.e., wrinkle: faux pli] or a false rhyme. (Canguilhem 1978: 172) The introduction of error into pathology resulted both in the radicaliza- tion and the trivialization of disease. The former is due to the fact that genetic diseases aff ect the “organization” or “building plan” of life itself. It is not an error caused by a temporary condition, but is inherent in the subject’s bodily substance. Disease, as it were, is intrinsically “inscribed” in the body and cannot be separated from it. This radicalization goes hand in hand with a de-mystifi cation of disease, because it is conceived neither as an evil nor as an excess, but as an “original fl aw in macromolecular form” (ibid.: 173). This fl aw, rather than pointing to a fault or negligence on the part of the person suff ering from the disease, is related to the caprices of evolution, the destiny of heredity, and the accidents of genetic read and copy errors. Canguilhem explains that, for the diseased subject, the idea of