Genetics and Society: A Sociology of Disease

208 Pages·2004·0.77 MB·English

by  Anne Kerr

Genetics and Society
There was an unprecedented growth in knowledge about the genetic basis of
disease in the last decades of the twentieth century. Genetics and Societylooks at
the social circumstances of these developments and their implications for the
future. Using fascinating and cutting edge examples throughout, Anne Kerr
casts a critical eye over topics as diverse as:
the past, present and future of genetic knowledge and technologies;
(cid:1)
the place of professionals, patients, families and publics in genetic
(cid:1)
research and service provision;
the social and cultural construction of genes and disease.
(cid:1)
Each chapter begins with a summary and ends with suggestions for further
reading, making the book accessible to a wide readership. Genetics and Society
will be essential reading for anybody with an interest in the social aspects of
genetics.
Anne Kerr is lecturer in the Sociology department at the University of
York, UK.

Genetics and Society
A sociology of disease
Anne Kerr
First published 2004
by Routledge
11 New Fetter Lane, London EC4P 4EE
Simultaneously published in the USA and Canada
by Routledge
29 West 35th Street, New York, NY 10001
Routledge is an imprint of the Taylor & Francis Group
This edition published in the Taylor & Francis e-Library, 2004.
© 2004 Anne Kerr
All rights reserved. No part of this book may be reprinted or
reproduced or utilized 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
Genetics and society: a sociology of disease / Anne Kerr. – 1st ed.
p. cm.
Includes bibliographical references and index.
1. Medical genetics – Social aspects. 2. Genetics – Social
aspects. I. Title.
RB155.K477 2004
362.196(cid:1)042–dc22 2004001266
ISBN 0-203-48951-9 Master e-book ISBN
ISBN 0-203-57268-8 (Adobe eReader Format)
ISBN 0–415–30081–9 (hbk)
ISBN 0–415–30082–7 (pbk)
Contents
List of boxes viii
Acknowledgements ix
1 Introduction 1
Summary 1
Introduction 1
Why this book now? 3
Themes and chapters 9
Past, present and future 10
Patients, professionals and publics 11
Knowledge, practice and things 12
2 Past 15
Summary 15
Introduction 16
Surveillance, coercion and voluntarism 18
Prevention 22
Reductionism 24
Commerce, governance and expertise 28
Contemporary debates about eugenics 30
Conclusion 36
Further reading 37
3 Discovery 38
Summary 38
Introduction 38
The discovery discourse 43
Knowledge, practice and things 45
Commercialization 46
vi Contents
Governance 50
Expert relations 53
Defining disease 56
Conclusion 62
Further reading 62
4 Reproduction 64
Summary 64
Introduction 64
Reproductive choices 66
Down’s syndrome screening in the United Kingdom 74
Conclusion 82
Further reading 83
5 Patients 84
Summary 84
Introduction 84
The psychosocial approach 86
Biography narratives 89
Risk and responsibility 94
Conclusion 101
Further reading 102
6 Biobanks 103
Summary 103
Introduction 103
Informed consent 106
Privacy and confidentiality 111
Commercialization and governance 116
Conclusion 121
Further reading 122
7 Publics 123
Summary 123
Introduction 123
Public opinion 125
Lay knowledge 132
Active citizenship 134
Constructing citizens and publics 138
Conclusion 142
Further reading 142
Contents vii
8 Futures 143
Summary 143
Introduction 143
Policy-speak 145
Public bioethics 148
Biomedicine 154
Mass media 156
Conclusion 160
Further reading 160
9 Conclusion 161
Introduction 161
Past, present and future 162
Patients, professionals and publics 163
Knowledge, practice and things 165
Researching genetics and society 167
Glossary 170
Notes 174
Bibliography 175
Index 189
Boxes
2.1 Eugenics and genetics 16
3.1 Discovering the Charcot-Marie-Tooth and distal spinal
muscular atrophy gene – the National Human Genome
Research Institute’s version 40
3.2 CF History Project – discovering CF 58
4.1 CF History Project – interview with two CF specialists:
clinician working with adults with CF and molecular geneticist 67
4.2 ‘Transformations in Genetic Subjecthood’ ESRC Project
– Interview, 2002 69
4.3 OSCAR 76
4.4 The Integrated Test 77
4.5 The Antenatal Screening subgroup of the UK National
Screening Committee 78
6.1 Insurance and employment 110
6.2 Nationhood 117
7.1 Attitudinal groups from the Office of Science and
Technology and The Wellcome Trust (2000) 126
7.2 MORI genetics poll shows public’s confusion,
12 March 2000 129
7.3 Increasing public support for controversial technologies 130
Acknowledgements
I would like to thank The Wellcome Trust History of Medicine Programme
and the Economic and Social Research Council for financial support during
the period of writing. I would also like to thank the National Institute of
Health, USA, the Office of Science and Technology and The Wellcome Trust
for permission to reproduce material herein. Thanks also to Mari Shullaw
for commissioning this book when she was at Routledge and to Gerhard
Boomgaarden for seeing the project through to completion. Sarah
Cunningham-Burley, Klaus Hoeyer, Richard Tutton, Mandy Rees, Steve
Yearley and Clare Williams have given valuable feedback on various draft
chapters, for which I am very grateful. Special thanks are due to Gillian
Robinson for compiling the bibliography and copyediting the manuscript.
Finally, thanks to my family, especially Brian Woods, for their encourage-
ment and support throughout the period of writing.