Breast Cancer Genes and the Gendering of Knowledge: Science and Citizenship in the Cultural Context of the ‘New’ Genetics PDF
Preview Breast Cancer Genes and the Gendering of Knowledge: Science and Citizenship in the Cultural Context of the ‘New’ Genetics
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 ©SahraGibbon2007 Softcover reprint of the hardcover 1st edition 2007 978-1-4039-9901-6 Allrightsreserved.Noreproduction,copyortransmissionofthis publicationmaybemadewithoutwrittenpermission. Noparagraphofthispublicationmaybereproduced,copiedortransmitted savewithwrittenpermissionorinaccordancewiththeprovisionsofthe Copyright,DesignsandPatentsAct1988,orunderthetermsofanylicence permittinglimitedcopyingissuedbytheCopyrightLicensingAgency, 90TottenhamCourtRoad,LondonW1T4LP. Anypersonwhodoesanyunauthorisedactinrelationtothispublication maybeliabletocriminalprosecutionandcivilclaimsfordamages. Theauthorhasassertedherrighttobeidentified astheauthorofthisworkinaccordancewiththeCopyright, DesignsandPatentsAct1988. Firstpublished2007by PALGRAVEMACMILLAN Houndmills,Basingstoke,HampshireRG216XSand 175FifthAvenue,NewYork,N.Y.10010 Companiesandrepresentativesthroughouttheworld PALGRAVEMACMILLANistheglobalacademicimprintofthePalgrave MacmillandivisionofSt.Martin’sPress,LLCandofPalgraveMacmillanLtd. Macmillan(cid:2)isaregisteredtrademarkintheUnitedStates,UnitedKingdom andothercountries.PalgraveisaregisteredtrademarkintheEuropean Unionandothercountries. ISBN 978-1-349-54754-8 ISBN 978-0-230-62655-3 (eBook) DOI 10.1057/9780230626553 Thisbookisprintedonpapersuitableforrecyclingandmadefromfully managedandsustainedforestsources. AcataloguerecordforthisbookisavailablefromtheBritishLibrary. LibraryofCongressCataloging-in-PublicationData Gibbon,Sahra. Breastcancergenesandthegenderingofknowledge:scienceand citizenshipintheculturalcontextofthe"new"genetics/SahraGibbon. p. cm. Includesbibliographicalreferencesandindex. 1. Breast“Cancer“Geneticaspects. 2. Breast“Cancer“Social aspects. I. Title. RC280.B8G4782007 616.99(cid:2)449042“dc22 2006050342 10 9 8 7 6 5 4 3 2 1 16 15 14 13 12 11 10 09 08 07 Contents ListofFigures vi Acknowledgements vii Preface ix Introduction 1 Part I Clinical Breast Cancer Genetics: Patients, Practitioners and Predictive Medicine 1 TheEnrolmentof‘Patients’:Visibility,VoiceandBreast CancerActivism 25 2 TechnologiesoftheClinic:Tools,TestsandExplanatory Strategies 48 3 ConstructingPatienthood:The‘Care’ofPredictiveMedicine andFemaleNurturance 70 4 DivinersandPastoralKeepers:WorkinginClinicalBreast CancerGenetics 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 ManagementofScienceandEthics 145 7 ScientistsandtheMakingofGenomicsasMonumentsfor theLiving 168 Conclusion 189 Notes 198 Bibliography 203 Index 215 v List of Figures 1.1 Adepictionoffamilyhistory 32 1.2 Other‘patients’familytrees 32 2.1 ClinicalFamilyTrees 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 skilfulabilitytocriticallyengagewiththeideasinthisbookhavehelped providethemotivationandfocusnecessarytohelpbringittofruition. IamalsogratefultoMurrayLastwhosechallengingyetalwaysrelevant commentarycreatedfreshavenuesforthinkingandanalysis.Atdifferent pointsincarryingouttheresearchandcompletingthisbook,Ihavealso benefitedfromtheincisivecritique,commentsandfeedbackofNaomi Pfeffer,SophieDay,SarahFranklin,MaureenMcNeil,ClaireMoynihan andMargaretLock. AparticularcohortofdoctoralstudentsintheAnthropologyDepart- mentatUCL,aswellasmembersoftheLondon-based‘GAT’readinggroup, notonlyprovidedthenecessarysupportandfriendshipbutindividually andcollectivelyhelpedtocreateacontextforthetestingoffledglingideas andanevolvinganalysis.ForthismythanksgotoSarahSkodbo,Kathryn Tomlinson,PaulBasu,SandraSquires,LucyNorris,AudreyProst,Patrick Laviolette, Sadie King, Susie Kilshaw, Carlos Novas, Adam Hedgecoe, OonaghCorrigan,FilippaCorneliussenandRichardTutton. The UCL anthropology department have been steadfast in their supportofmyresearchhelpingtoprovidethenecessaryworkingenvir- onment to complete this project. I have also been fortunate to have received financial support from the Economic and Social Research Council(ESRC),whosetwoawards(athreeyeargraduateresearchaward andoneyearpost-doctoralresearchfellowship)havebeenvitaltounder- takingtheresearchandthefinalpublicationofthiswork. Draftsofthechaptersinthisbookhavebeenpresentedatnumerous conferencesandseminarpresentationsintheUKandelsewhere.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 ASADecennialConferenceonAnthropologyandScienceinManchester 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.Thankstoallthosewhoofferedcomments,critiqueandposed therightquestionsattheseandotherconferencesIattended. 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)‘FamilyTreesinClinicalCancerGenetics:Reexamining Geneticisation’,ScienceasCulture,11(4),429–457. Gibbon, S. (2006) ‘Nurturing Women and the BRCA Genes; Gender, ActivismandtheParadoxofHealthAwareness’,AnthropologyandMedi- 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 thatunderpinsthediscussionandanalysisinthisbook.Disclosingthe 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 accurateaccountofthetimeIspentwiththem. My thanks to numerous friends, especially Susannah, Kim, Emily, Emma,Lucy,KathrynandalsoJackieandHilary,whosecontactduring unsociably long periods of writing have not only provided me with welcomesolace,butalsorenewedenthusiasmforfinishingthisproject. 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 timeithastakentocompletethisbook.Thefinalmentiongoestomy lategrandmother,Gus,whoseenthusiasmfordiscussionandideasisan educationIamgladnothavemissed.Thisbookisdedicatedtoherand therestofmyfamilywithlove. 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.Theseseeminglyparalleldevelopmentswarrantcloserexamina- tion.Usinganethnographicapproach,thisbookexaminesthewaythat the knowledges and technologies associated with the so called ‘breast cancer genes’, BRCA1 and 2, are used, received or acted upon in two contrastingsocialarenas(a)cancergeneticclinicsand(b)abreastcancer researchcharity,andhowagrowinganddiversecultureofbreastcancer 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 thelabandthewiderworld.Itpointstoapowerfulsocialformwithin thenewgeneticsthatpowerfullyalignsgenderwiththeknowledgeand 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 oftenuncomfortabletensionsandgapsinthemobileandshiftingland- scapewherenewgeneticknowledgeisbeingusedandtranslated. SahraGibbon UniversityCollegeLondon,UK ix
The list of books you might like
