Table Of ContentBreast Cancer Genes and
the Gendering of
Knowledge
Science and Citizenship in the Cultural
Context of the ‘New’ Genetics
Sahra Gibbon
Breast Cancer Genes and the Gendering of Knowledge
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Breast Cancer Genes and
the Gendering of
Knowledge
Science and Citizenship in the Cultural
Context of the ‘New’ Genetics
Sahra Gibbon
© Sahra Gibbon 2007
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Designs and Patents Act 1988.
First published 2007 by
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Library of Congress Cataloging-in-Publication Data
Gibbon, Sahra.
Breast cancer genes and the gendering of knowledge:science and
citizenship in the cultural context of the "new" genetics/Sahra Gibbon.
p.
cm.
Includes bibliographical references and index.
ISBN-13: 978�1�4039�9901�6
ISBN-10: 1�4039�9901�5 (cloth)
1. Breast“Cancer“Genetic aspects.
2. Breast“Cancer“Social
aspects.
I. Title.
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Printed and bound in Great Britain by
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Contents
List of Figures
vi
Acknowledgements
vii
Preface
ix
Introduction
1
Part I
Clinical Breast Cancer Genetics: Patients,
Practitioners and Predictive Medicine
1
The Enrolment of ‘Patients’: Visibility, Voice and Breast
Cancer Activism
25
2
Technologies of the Clinic: Tools, Tests and Explanatory
Strategies
48
3
Constructing Patienthood: The ‘Care’ of Predictive Medicine
and Female Nurturance
70
4
Diviners and Pastoral Keepers: Working in Clinical Breast
Cancer Genetics
96
Part II
A Breast Cancer Research Charity: Science,
Activism and the Quest for Knowledge
5
The Alchemy of Loss and Hope: Fundraising as
Memorialisation
125
6
Between Geno-hype and the Post-Genomic: The
Management of Science and Ethics
145
7
Scientists and the Making of Genomics as Monuments for
the Living
168
Conclusion
189
Notes
198
Bibliography
203
Index
215
v
List of Figures
1.1
A depiction of family history
32
1.2
Other ‘patients’ family trees
32
2.1
Clinical Family Trees
51
vi
Acknowledgements
I have been fortunate in the completion of this book to have had the
support and guidance of a number of academic colleagues within the
Department of Anthropology at University College London (UCL) and
elsewhere. First and foremost, my thanks to Nanneke Redclift, whose
skilful ability to critically engage with the ideas in this book have helped
provide the motivation and focus necessary to help bring it to fruition.
I am also grateful to Murray Last whose challenging yet always relevant
commentary created fresh avenues for thinking and analysis. At different
points in carrying out the research and completing this book, I have also
benefited from the incisive critique, comments and feedback of Naomi
Pfeffer, Sophie Day, Sarah Franklin, Maureen McNeil, Claire Moynihan
and Margaret Lock.
A particular cohort of doctoral students in the Anthropology Depart-
mentatUCL,aswellasmembersoftheLondon-based‘GAT’readinggroup,
not only provided the necessary support and friendship but individually
and collectively helped to create a context for the testing of fledgling ideas
and an evolving analysis. For this my thanks go to Sarah Skodbo, Kathryn
Tomlinson, Paul Basu, Sandra Squires, Lucy Norris, Audrey Prost, Patrick
Laviolette, Sadie King, Susie Kilshaw, Carlos Novas, Adam Hedgecoe,
Oonagh Corrigan, Filippa Corneliussen and Richard Tutton.
The UCL anthropology department have been steadfast in their
support of my research helping to provide the necessary working envir-
onment to complete this project. I have also been fortunate to have
received financial support from the Economic and Social Research
Council (ESRC), whose two awards (a three year graduate research award
and one year post-doctoral research fellowship) have been vital to under-
taking the research and the final publication of this work.
Drafts of the chapters in this book have been presented at numerous
conferences and seminar presentations in the UK and elsewhere. These
events provided an important environment for the honing of ideas
and the development of rigorous analysis. The Medical Anthropology
Seminars at UCL, the ‘Genes, Gender and Generation’ workshop in
Lancaster in 2003, the Vital Politics 1 Conference at LSE in 2003, the
ASA Decennial Conference on Anthropology and Science in Manchester
in 2003 and a seminar in the Social Studies of Medicine department
at McGill University in Montreal in 2006 have all been particularly
vii
viii
Acknowledgements
valuable. Thanks to all those who offered comments, critique and posed
the right questions at these and other conferences I attended.
I also gratefully acknowledge the permission of Taylor and Francis
Publications (website www.tandf.co.uk/journals) to reprint parts of
previously published articles in Chapters 1 and 2 of this book. This
includes;
Gibbon, S. (2002) ‘Family Trees in Clinical Cancer Genetics: Reexamining
Geneticisation’, Science as Culture, 11(4), 429–457.
Gibbon, S. (2006) ‘Nurturing Women and the BRCA Genes; Gender,
Activism and the Paradox of Health Awareness’, Anthropology and Medi-
cine, 13(2), 157–171.
There are a number of persons who worked in the cancer genetic
clinics and the breast cancer research charity who helped make this
research possible. I am indebted to them for their initial interest in
the study, their friendship during the time of my research and their
assistance in helping to facilitate this work. My thanks and gratitude
also extend to the numerous persons who took part in the research
that underpins the discussion and analysis in this book. Disclosing the
names of either of these groups of persons would break the agreement
of confidentiality, which I have tried to maintain in this publication.
My hope is that all these persons will feel the book is an honest and
accurate account of the time I spent with them.
My thanks to numerous friends, especially Susannah, Kim, Emily,
Emma, Lucy, Kathryn and also Jackie and Hilary, whose contact during
unsociably long periods of writing have not only provided me with
welcome solace, but also renewed enthusiasm for finishing this project.
Marie, Graham, Roland, Zan, Woodie, Paul, Eva, Claire and Gary,
along with three wonderful nieces, have been the first and last line of
support, encouragement and necessary release throughout the span of
time it has taken to complete this book. The final mention goes to my
late grandmother, Gus, whose enthusiasm for discussion and ideas is an
education I am glad not have missed. This book is dedicated to her and
the rest of my family with love.
Preface
Although the ‘inherited susceptibility’ genes BRCA 1 and 2 are only
thought to be involved in approximately 5–10 per cent of all cases of
breast cancer, risk assessment and genetic testing for breast cancer is
at the vanguard of a rapidly expanding field of medicine, while the
molecular genetics of breast cancer is a focus for a growing field of
basic and applied scientific research. The period since the early 1990’s
has also seen an exponential rise in health ‘activism’ around breast
cancer. These seemingly parallel developments warrant closer examina-
tion. Using an ethnographic approach, this book examines the way that
the knowledges and technologies associated with the so called ‘breast
cancer genes’, BRCA1 and 2, are used, received or acted upon in two
contrasting social arenas (a) cancer genetic clinics and (b) a breast cancer
research charity, and how a growing and diverse culture of breast cancer
activism intersects with these developments. Drawing on a notion of
‘co-production’, the book examines the collective practices, networks
and identities caught up with the knowledge and technologies associ-
ated with breast cancer genes in their passage from, to and between
the lab and the wider world. It points to a powerful social form within
the new genetics that powerfully aligns gender with the knowledge and
technologies associated with breast cancer genes, whilst showing how
the circuits of connection which link people and practices in different
social arenas operate in complex non-linear ways. The entanglements
engendered by the ‘traffic’ around the work of transmission reveal the
often uncomfortable tensions and gaps in the mobile and shifting land-
scape where new genetic knowledge is being used and translated.
Sahra Gibbon
University College London, UK
ix
