Table Of Content01 Risky Relations 3/10/05 12:22 pm Page i
Risky Relations
01 Risky Relations 3/10/05 12:22 pm Page ii
This page intentionally left blank
01 Risky Relations 3/10/05 12:22 pm Page iii
Risky Relations
Family, Kinship and the New Genetics
Katie Featherstone, Paul Atkinson,
Aditya Bharadwaj and Angus Clarke
Oxford • New York
01 Risky Relations 3/10/05 12:22 pm Page iv
English edition
First published in 2006 by
Berg
Editorial offices:
First Floor, Angel Court, 81 St Clements Street, Oxford OX4 1AW, UK
175 Fifth Avenue, New York, NY 10010, USA
© Katie Featherstone, Paul Atkinson, Aditya Bharadwaj and Angus Clarke 2006
All rights reserved.
No part of this publication may be reproduced in any form
or by any means without the written permission of Berg.
Berg is the imprint of Oxford International Publishers Ltd.
Library of Congress Cataloging-in-Publication Data
Risky relations : family, kinship and the new genetics / Katie
Featherstone ... [et al.].— English ed.
p. cm.
Includes bibliographical references and index.
ISBN-13: 978-1-84520-178-4 (cloth)
ISBN-10: 1-84520-178-7 (cloth)
ISBN-13: 978-1-84520-179-1 (pbk.)
ISBN-10: 1-84520-179-5 (pbk.)
1. Communication in the family. 2. Family—Health and hygiene. 3.
Genetic disorders—Psychological aspects. I. Featherstone, Katie.
HQ519.R57 2006
306.8709′0511—dc22 2005026979
British Library Cataloguing-in-Publication Data
A catalogue record for this book is available from the British Library.
ISBN-13 978 1 84520 178 4 (Cloth)
978 1 84520 179 1 (Paper)
ISBN-10 1 84520 178 7 (Cloth)
1 84520 179 5 (Paper)
Typeset by Avocet Typeset, Chilton, Aylesbury, Bucks
Printed in the United Kingdom by Biddles Ltd, King’s Lynn.
www.bergpublishers.com
01 Risky Relations 3/10/05 12:22 pm Page v
Contents
Preface vii
Acknowledgements xiii
1 Risky Relations and Other Complexities 1
2 Accomplishing Kinship 25
3 Routes and Journeys: Beliefs about Inheritance and Routes
of Transmission 57
4 Mutual Surveillance 73
5 Practical Ethics and Disclosure 91
6 Family Narratives 117
7 Risky Relations 139
Appendix:Summary of Conditions 151
References 159
Index 169
01 Risky Relations 3/10/05 12:22 pm Page vi
This page intentionally left blank
01 Risky Relations 3/10/05 12:22 pm Page vii
Preface
Genetics play an increasingly important part in contemporary medicine. The
genetic basis of some medical conditions is now firmly established, and specialist
services provide advice to individuals whose genetic make-up means that they or
their relatives have a likelihood of developing a disease and can help people make
decisions about their reproductive behaviour. Genetic tests can be used to diagnose
a wide range of conditions, or to predict the genetically based risks that people
face. Familial cancers (such as breast and ovarian cancer or colorectal cancer),
Huntington’s disease, cystic fibrosis, myotonic and Duchenne muscular dystrophy
are among the conditions that have been thoroughly documented from both a
medical and a sociological perspective. New research is constantly introducing
new medical conditions into the ambit of genetic science and medicine. There is
now a huge range of diseases and syndromes that have been identified as having a
genetic basis. Common conditions such as diabetes and heart problems have an
inherited component. Thalassaemia and sickle-cell disease are related to the
genetics of particular ethnic groups. The genetic basis of psychological illness is
being increasingly identified, with suggested genetic bases for schizophrenia,
Alzheimer’s, and severe depression. Large-scale programmes of biomedical and
social research, on a global scale, contribute to and reflect medical and societal
interests in new genetic technologies.
New genetic technologies mean that the biological basis of family and kinship
is – potentially – of increasing significance. The identification of a genetic muta-
tion or deletion within a kindred can have far-reaching implications for its
members. If my own genes suggest that I have a genetic condition, am a ‘carrier’
for one, or have a heightened risk of developing one, then that has potential con-
sequences for other members of my family. Precisely which members of my family
are or might be affected by the genetic disease varies, depending on the biology of
the condition itself and its mode of inheritance, and we discuss these issues
throughout the book. For now, we need to note that the increasing identification of
genetic disease and genetic risk implies a heightened salience of biological re-
latedness among family members. Kinship could become increasingly identified
with common ancestry, shared genetic material, and shared risks.
This is not, of course, entirely novel. We have not had to wait for modern genetic
science, still less the results of the Human Genome Project, to recognize that
01 Risky Relations 3/10/05 12:22 pm Page viii
viii • Preface
family members can share common characteristics, and that they are inherited.
Family resemblances – physical and moral – have been recognized for centuries:
one need only see how successive portrait painters have captured the family ‘look’
of generations of noble and royal families, for instance. Selective breeding of
domestic animals and foodstuffs has been going on for generations. Pedigree pigs
and thoroughbred horses, noble lineages and royal successions have all depended
on a practical understanding of inheritance, bloodlines and lineages, quite inde-
pendently of contemporary scientific understandings of genetics. The scientific
contributions of Gregor Mendel (and his rediscovery in the early twentieth
century), the discovery of the structure of DNA by Francis Crick, James Watson,
Rosalind Franklin and Maurice Wilkins, in the middle of the twentieth century, and
the various genome projects at the century’s end and the beginning of the twenty-
first century have signalled the rise of genetic science. However, a general sense of
biological relatedness and inheritance has not rested on that science alone. Indeed,
Mendel himself had no biological basis for the patterns of inheritance he identi-
fied, and Darwin’s theory of evolution was developed in the absence of a clear bio-
logical mechanism of inter-generational inheritance and mutation. Likewise, there
is nothing novel about the idea of inherited susceptibility to ill health. Family
resemblances have long included the perception of general physical constitution,
robustness or weakness. The inheritance of specific conditions is not a new idea.
The distribution of haemophilia among the royal families of Europe is a well-
known case in point. While the identification of a genetic basis for psychological
problems may be challenging for contemporary psychiatry, it is by no means alien
to a more general array of beliefs about families and their characteristics that are
independent of genetic science.
While the new genetic science has important implications for medicine, and for
how we think about families, it would be quite wrong to think that everything
about genetic medicine and the biological basis of inheritance is totally new. It
would be equally wrong to think that current beliefs, attitudes and practices about
these things are governed entirely by the tenets of contemporary genetic science
itself. There are complex interplays between scientific research, medical practice,
mass media reportage and everyday understandings. Everyday knowledge is by no
means determined by scientific knowledge. It is not even determined by the style
and content of mass media representations. We have to recognize that scientific
knowledge is always received and interpreted against the backcloth of rich, varied
and adaptable repertoires of everyday culture.
Our book reports research that is part of a long-standing and continuing collab-
oration between social scientists and specialists in genetic medicine. It reflects a
number of strands in sociology, anthropology and cultural studies that in turn have
been affected by rapid changes in biomedical science. Our research maintains a
clear commitment to fundamental social-science concerns. Indeed, it is our shared
01 Risky Relations 3/10/05 12:22 pm Page ix
Preface • ix
contention that the current state of genetic knowledge and practice urgently
demands the insights that can only be provided by a thorough commitment to the
ideas of sociology, anthropology, and cognate disciplines.
Our book derives from intensive work with members of several families who
had been identified as having (or at risk of sharing) a genetic condition. We intro-
duce these medical conditions as we introduce our data, and the families and the
genetic conditions or syndromes involved are described within Chapter 2 and in
more detail in an Appendix. We do not include some of the most common diseases,
which have been extensively documented by other social scientists, as we
acknowledge later in the book. However, the analytic issues thrown up by our
research are generic. They are not confined to the medical circumstances experi-
enced by our research informants alone. Equally, the issues we explore are not
limited geographically. Our fieldwork was conducted primarily in South Wales, but
the issues transcend regional and national boundaries. We do not for one moment
imply that the cultural contexts of professional and lay knowledge are undifferen-
tiated, and we insist that the cultural bases of ideas about inheritance, health and
disease need empirical research across multiple sites and cultural milieux. The
contents of belief systems and practices may vary; the broader analytic themes that
we identify are salient globally. There remains much work to be done to document
the ethno-genetic knowledges of many populations around the world. Our own
research and research like it need to be developed across a broad spectrum of
social groups. Our research has been with white families living in South Wales.
The absence of other ethnic groups does not reflect a deliberate decision to exclude
them from our research in general, but rather the fact that the particular projects
on which this book is based did not specifically include minority communities or
medical conditions specific to them.
The location of our research in South Wales partly reflects the fact that there is
an unparalleled degree of collaboration between social scientists and geneticists
there, and a substantial concentration of research investments at Cardiff
University, where this work was undertaken. Families in Wales are especially
important in the context of sociological and anthropological research more gener-
ally. There is now a long and extensive tradition of work, spanning many decades,
documenting family and community life in Wales. Family research, together with
research on health and illness, has long been a core theme of the social sciences in
Welsh universities. It is, therefore, especially appropriate that newer concerns with
biomedical and social relations should be added to that research heritage.
In Chapter 1, we locate our research within the broader intellectual context. We
elaborate on the renewed interest in ‘kinship’among anthropologists and sociolo-
gists, and how this has been given particular urgency by recent developments in
biomedical science. We suggest that those developments and their social, interper-
sonal consequences have not all had the same implications for family life and
