Ordinary Genomes: Science, Citizenship, and Genetic Identities

259 Pages·2009·1.231 MB·English

by  Karen-Sue Taussig

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Technological Lives,
Scientific Arts,
Anthropological Voices
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Science, Citizenship,
and Genetic Identities
Duke University Press
Durham and London 2009
∫ 2009 Duke University Press
All rights reserved.
Printed in the United States of America on
acid-free paper $
Designed by Heather Hensley
Typeset in Warnock Pro by Keystone
Typesetting, Inc.
Library of Congress Cataloging-in-Publication
Data appear on the last printed page of this book.
For
JON AND EMMA

CONTENTS
ix Acknowledgments
1 Introduction
SCIENCE, SUBJECTIVITY, AND CITIZENSHIP
17 Chapter One
‘‘GOD MADE THE WORLD AND THE DUTCH MADE HOLLAND’ ’
57 Chapter Two
GENETICS AND THE ORGANIZA TION OF GENETIC PRACTICE
IN THE NETHERLANDS
85 Chapter Three
THE SOCIAL AND CLINICAL PRODUCTION OF ORDINARINESS
135 Chapter Four
BACKWARD AND BEAUTIFUL: CAL VINISM, CHROMOSOMES,
AND THE PRODUCTION OF GENETIC KNOWLEDGE
159 Chapter Five
BOVINE ABOMINATIONS: CONTESTING GENETIC TECHNOLOGIES
189 Epilogue
ORDINARY GENOMES IN A GLOBALIZING WORLD
201 Notes
217 Bibliography
233 Index

ACKNOWLEDGMENTS
There are many people whose energy and generosity went into making this
book possible. My deepest debt is to the many individuals in the Nether-
lands who opened their workplaces, homes, and personal stories to an
oddly curious American graduate student. Having promised anonymity, I
cannot name these individuals here but hope they know they have my
enduring gratitude for their willingness to share their time and thoughts
with me. In particular I want to thank the clinicians and researchers who
allowed me to observe them in action over many months and who pa-
tiently responded to my numerous questions. I enjoyed their company and
was moved by their commitment to the health and well-being of their
patients. I also appreciate the extraordinary generosity of the individuals
and families who were navigating the daily challenges of managing a ge-
netic condition but who nevertheless made time to help me understand
genetics in the Netherlands. In the Netherlands I also thank Annemarie
Mol, Rosie Braidotti, and Gerard de Vries for providing institutional affilia-
tions, conversation, insight, and food, as well as Jessica Messman, Ruud
Hendricks, Peter Peters, and Marc Berg for intellectual engagement and
encouragement. Diana and Bart Mens offered hospitality that I deeply
appreciated. Paul Dirks was a wonderful friend and guide during my time
in the Netherlands. I continue to feel lucky to have shared so much fun
with such a warm and generous person. I also thank Margreet Zoutewelle
for camaraderie and for guidance regarding language and everyday life.
The faculty in the Department of Anthropology at the Johns Hop-
kins University and, especially, my advisors in and beyond the depart-
ment, Emily Martin, Gillian Feeley-Harnik, and Katherine Verdery, Erica
Schoenberger, Richard Cone, Sharon Kingsland, and David Harvey, were
astonishingly generous with their time and ideas. I am particularly grateful
to Emily Martin for her groundbreaking work and intellectual curiosity
and for offering a model of mentoring and professionalism that will always