Biosocialities, Genetics and the Social Sciences: Making Biologies and Identities

209 Pages·2007·1.08 MB·English

by  Sahra Gibbon

Biosocialities, Genetics and the
Social Sciences
Investigations into the genetic make-up of humans have transformed the way we
think about ourselves and the world around us. This not only affects the way we
think about health and disease, but it also impacts on our ideas about what it is to
be human. Biosocialities, Genetics and the Social Sciences explores the social,
cultural and economic transformations that result from innovations in genomic
knowledge and technology.
This pioneering collection uses Paul Rabinow’s concept of biosociality to
chart the shifts in social relations and in ideas about nature, biology and identity
brought about by developments in biomedicine. Based on new empirical research,
it contains chapters on genomic research into embryonic stem cell therapy, breast
cancer, autism, Parkinson’s and IVF treatment, as well as on the expectations and
education surrounding genomic research.
Biosocialities, Genetics and the Social Sciences covers four main themes:
• Novel modes of identity and identifi cation, such as genetic citizenship.
• The role of institutions, ranging from disease advocacy organisations and
voluntary organisations to the state.
• The production of biological knowledge, novel life-forms, and technologies.
• The generation of wealth and commercial interests in biology.
Including an afterword by Paul Rabinow and case studies focusing on the
UK, the US, Canada, Germany, India and Israel, this book will be of interest to
students and researchers of the new genetics and the social sciences – particularly
medical sociologists, medical anthropologists and those involved with science
and technology studies.
Sahra Gibbon is currently undertaking a Wellcome Trust fellowship at University
College London, UK.
Carlos Novas is a Wellcome Trust funded Postdoctoral Fellow at the BIOS Centre,
London School of Economics, UK.

Biosocialities, Genetics
and the Social Sciences
Making biologies and identities
Edited by
Sahra Gibbon and Carlos Novas
First published 2008
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
Simultaneously published in the USA and Canada
by Routledge
270 Madison Ave, New York, NY 10016
Routledge is an imprint of the Taylor & Francis Group, an informa business
This edition published in the Taylor & Francis e-Library,2 007.
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© 2008 Selection and editorial matter, Sahra Gibbon and Carlos Novas;
individual chapters, the contributors
All rights reserved. No part of this book may be reprinted or reproduced or
utilised in any form or by any electronic, mechanical, or other means, now
known or hereafter invented, including photocopying and recording, or in
any information storage or retrieval system, without permission in writing
from the publishers.
British Library Cataloguing in Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging-in-Publication Data
A catalog record for this book has been requested
ISBN 0-203-94594-8 Master e-book ISBN
ISBN10: 0–415–40137–2 (hbk)
ISBN10: 0–415–40138–0 (pbk)
ISBN10: 0–203–94594–8 (ebk)
ISBN13: 978–0–415–40137–1 (hbk)
ISBN13: 978–0–415–40138–8 (pbk)
ISBN13: 978–0–203–94594–0 (ebk)
Contents
List of contributors vii
Acknowledgements x
Introduction: biosocialities, genetics and the social sciences 1
SAHRA GIBBON AND CARLOS NOVAS
1 Charity, breast cancer activism and the iconic fi gure of the
BRCA carrier 19
SAHRA GIBBON
2 Brains, pedigrees, and promises: lessons from the politics
of autism genetics 38
CHLOE SILVERMAN
3 Biosociality and susceptibility genes: a cautionary tale 56
MARGARET LOCK
4 Biology, sociality and reproductive modernityin Ecuadorian
in-vitro fertilization: the particulars of place 79
ELIZABETH F.S. ROBERTS
5 Biosociality and biocrossings: encounters with assisted
conception and embryonic stem cells in India 98
ADITYA BHARADWAJ
6 Synecdochic ricochets: biosocialities in a Jerusalem IVF clinic 117
MICHAL NAHMAN
7 Patients, profi ts and values: Myozyme as an exemplar of
biosociality 136
CARLOS NOVAS
vi Contents
8 Biocapital as an emergent form of life: speculations on the
fi gure of the experimental subject 157
KAUSHIK SUNDER RAJAN
Afterword: concept work 188
PAUL RABINOW
Index 193
Contributors
Aditya Bharadwaj is a lecturer at the School of Social and Political Studies,
University of Edinburgh.His principal research interest is in the area of new
reproductive, genetic and stem cell biotechnologies and their rapid spread
in diverse global locales ranging from South Asia to the United Kingdom.
His research interests lie at an interface between cultural and biomedical
dimensions of assisted reproduction in India.His past research has examined
issues surrounding gender and reproductive health care with special reference
to medically mediated childbirth, food and nutrition and immunisation.
His recently concluded research, funded by ESRC’s Innovative Health
Technologies Programme, was located in South Wales. The research explains
the consequences of population screening for genetic disorders based on the
case of haemochromatosis.
Sahra Gibbon is a Post-Doctoral Research Fellow in the Department of Anthro-
pology at University College London. She has a longstanding interest in the
social and cultural dimenions of developments in genomics and the dynamic
interface between differently constituted sciences and publics. She teaches
on a range of courses focusing on the anthropology of medicine, science and
technology.
Margaret Lock is Marjorie Bronfman Professor in Social Studies in Medicine,
and is affi liated with the Department of Social Studies of Medicine and the
Department of Anthropology at McGill University. She is a Fellow of the Royal
Society of Canada and an Offi cier de l’Ordre National du Québec. Lock was
awarded the Prix Du Québec, domaine Sciences Humaines in 1997 and in the
same year the Wellcome Medal of the Royal Anthropological Society of Great
Britain. In 2002 she received the Canada Council for the Arts Molson Prize, in
2005 the Canada Council for the Arts Killam Prize, and in the same year she
was awarded a Trudeau Fellowship. Among her prize-winning monographs
isTwice Dead: Organ Transplants and the Reinvention of Death.Her current
research deals with the circulation of post-genomic knowledge among basic
scientists, clinics, families, and society at large, with particular emphasis on a
re-conceptualization of Alzheimer’s disease.
viii List of contributors
Michal Nahman is a lecturer in the Sociology Department at Lancaster University.
Her research focuses on the study of biomedicine and science as they relate to
gender, nationalism, race and sexuality. She is currently working on a book
titledIsraeli Extractions: An Ethnographic Study of Ova Donation and National
Imaginaries. This monograph deals with the politics of borders and bodies
as they emerge through technoscientifi c discursive practices of extraction,
exchange and implantation of human ova between differently situated women.
As the research for this project was conducted during the second Intifada,and
amid a rising fear of the ‘demographic threat’ of Palestinians to the Israeli
state’s existence, the book’s theorizing of nationalism and identity is inevitably
shaped by this context.
Carlos Novas is a Wellcome Trust Postdoctoral Fellow at the BIOS Centre for
the Study of Bioscience, Biomedicine, Biotechnology and Society, London
School of Economics. He is currently working on a project titled: ‘The political
economy of hope: private enterprise, patients’ groups and the production of
values in the contemporary life sciences’. This project aims to explore the
values and ethical principles that underpin and are promoted by biotechnology
fi rms and patients’ organizations as they invest in and conduct genetic research.
He has recently been appointed as an Assistant Professor at Carleton University,
where he will begin teaching in September 2007.
Paul Rabinow is Professor of Anthropology at the University of California
at Berkeley. A recent book is Marking Time: On the Anthropology of the
Contemporary (2007).He is director of the Collaboratory for the Anthropology
of the Contemporary (www.anthropos-lab.net). His current research concerns
synthetic biology.
Elizabeth F.S. Roberts is a medical anthropologist and assistant research
scientist at the Institute for Research on Women and Gender at the University
of Michigan. Her work concerns the comparative investigation of race, sex,
religion, and ‘life’, as these social categories manifest through the globalization
of biomedical technologies. She has published on the social world of Ecuadorian
in-vitro fertilization in Culture Medicine and Psychiatry (2006) and American
Ethnologist (2007). Currently, she is revising this research for a monograph
entitledEquatorial In-Vitro, Reproductive Medicine and Modernity in Ecuador.
She is at the beginning of a new investigation on the transnational movements
of intersex medicine.
Chloe Silverman is an Assistant Professor in the Science, Technology and Society
Program at Penn State University, where she also teaches courses in Disability
Studies. She is currently fi nishing a manuscript, Autism, Love and Labor, on
the role of parent advocacy groups, and parental knowledge more generally, in
research on autism spectrum disorders. The book examines the local, affect-
laden practices that have worked to constitute autism as a diagnostic and
clinical entity in a range of locations. Her cases include the Sonia Shankman
Orthogenic School at the University of Chicago, the early years of the National
List of contributors ix
Society for Autistic Children, and contemporary groups such as the Autism
Research Institute devoted to promoting biomedical interventions for autism.
Kaushik Sunder Rajan is Assistant Professor of Anthropology at the University
of California, Irvine. His book, Biocapital: The Constitution of Post-Genomic
Life (2006) is an ethnographic account of emergent drug development
marketplaces in the United States and India in the context of new developments
in genomics. He is currently researching the globalization of clinical trials,
with a specifi c focus on the efforts to build clinical research infrastructure in
India in anticipation of getting trials from Western biotech and pharmaceutical
companies.