Breast Cancer Genes and the Gendering of Knowledge: Science and Citizenship in the Cultural Context of the ‘New’ Genetics

230 Pages·2007·0.863 MB·English

by  Sahra Gibbon (auth.)

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
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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