Perspectives on Genetic Discrimination

172 Pages·2013·4.98 MB·English

by  Thomas Lemke

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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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
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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