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Breast Cancer - Genes and the Gendering of Knowledge - S. Gibbon (Palgrave MacMillan, 2007) WW PDF

232 Pages·2007·1.81 MB·English
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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 Breast Cancer Genes and the Gendering of Knowledge This page intentionally left blank Breast Cancer Genes and the Gendering of Knowledge Science and Citizenship in the Cultural Context of the ‘New’ Genetics Sahra Gibbon © Sahra Gibbon 2007 All rights reserved. No reproduction, copy or transmission of this publication may be made without written permission. No paragraph of this publication may be reproduced, copied or transmitted save with written permission or in accordance with the provisions of the Copyright, Designs and Patents Act 1988, or under the terms of any licence permitting limited copying issued by the Copyright Licensing Agency, 90 Tottenham Court Road, London W1T 4LP. Any person who does any unauthorised act in relation to this publication may be liable to criminal prosecution and civil claims for damages. The author has asserted her right to be identified as the author of this work in accordance with the Copyright, Designs and Patents Act 1988. First published 2007 by PALGRAVE MACMILLAN Houndmills, Basingstoke, Hampshire RG21 6XS and 175 Fifth Avenue, New York, N.Y. 10010 Companies and representatives throughout the world PALGRAVE MACMILLAN is the global academic imprint of the Palgrave Macmillan division of St. Martin’s Press, LLC and of Palgrave Macmillan Ltd. Macmillan� is a registered trademark in the United States, United Kingdom and other countries. Palgrave is a registered trademark in the European Union and other countries. ISBN-13: 978�1�4039�9901�6 hardback ISBN-10: 1�4039�9901�5 hardback This book is printed on paper suitable for recycling and made from fully managed and sustained forest sources. A catalogue record for this book is available from the British Library. 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. RC280.B8G478 2007 616.99′449042“dc22 2006050342 10 9 8 7 6 5 4 3 2 1 16 15 14 13 12 11 10 09 08 07 Printed and bound in Great Britain by Antony Rowe Ltd, Chippenham and Eastbourne 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

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