Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing

376 Pages·2012·2.3 MB·English

by  Robert Klitzman

Am I My Genes?
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Also by Robert Klitzman:
A Year-long Night: Tales of a Medical Internship
In a House of Dreams and Glass: Becoming a Psychiatrist
Being Positive: Th e Lives of Men and Women With HIV
Th e Trembling Mountain: A Personal Account of Kuru, Cannibals, and
Mad Cow Disease
Mortal Secrets: Truth and Lies in the Age of AIDS (with Ronald Bayer)
When Doctors Become Patients
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Am I My Genes?
Confronting Fate and Family Secrets
in the Age of Genetic Testing
ROBERT L. KLITZMAN, M.D.
1
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1
Oxford University Press, Inc., publishes works that further
Oxford University’s objective of excellence
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Copyright © 2012 by Oxford University Press, Inc.
Published by Oxford University Press, Inc.
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Oxford is a registered trademark of Oxford University Press
All rights reserved. No part of this publication may be reproduced,
stored in a retrieval system, or transmitted, in any form or by any means,
electronic, mechanical, photocopying, recording, or otherwise,
without the prior permission of Oxford University Press.
__________________________________________________________
Library of Congress Cataloging-in-Publication Data
Klitzman, Robert.
Am I my genes? : confronting fate and family secrets in the age of genetic testing /
Robert L. Klitzman.
p. ; cm.
ISBN 978-0-19-983716-8
1. Genetic screening—Moral and ethical aspects. 2. Privacy, Right of.
3. Medical records—Access control. I. Title.
[DNLM: 1. Genetic Privacy—ethics. 2. Genetic Testing—ethics. 3. Disclosure—ethics.
4. Family Relations. 5. Genetic Diseases, Inborn. 6. Self Disclosure. QZ 21]
RB155.65.K55 2012
362.196’04207—dc23
__________________________________________________________

9 8 7 6 5 4 3 2 1
Printed in the United States of America on acid-free paper
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ACKNOWLEDGMENTS
I am deeply indebted to the men and women I interviewed for this book — for
their generosity and candor. I am very grateful, too, to the Ethical, Legal and
Social Implications Program of the National Human Genome Research Institute
for supporting this project (ROI-HG002431-01), and also to the Greenwall
Foundation. I would like to thank Jean McEwen, Elizabeth Th omson, Joy Boyer,
Francis Collins, William Stubing, and David Tanner; colleagues at Columbia
University and elsewhere including Wendy Chung, Karen Marder, Deborah
Th orne, Carol Moskowitz, Jennifer Williamson, Edward Eden, Lori Tartell,
Rubie Senie, Victor Grann, and Carolyn Kumah for valuable assistance with
recruiting participants; Anke Ehrhardt and Paul Appelbaum for their support;
Lisa Chin, Melissa Conley, and Meghan Sweeney for their assistance with the
manuscript; Joan Klitzman, Rick Hamlin, Melanie Th ernstrom, and Patricia
Volk for reading draft s of this manuscript; Peter Ohlin for his unfailing and
much appreciated faith in this project; Christian Purdy, Lucy Randall, Lindsay
Mellor, Susan Lee, and Smitha Raj at Oxford University Press; and Charles
Bieber for his help in countless other ways.
Several sections of this material have appeared in diff erent form in the Journal
of the American Medical Association, American Journal of Medical Genetics,
Genetics in Medicine, Genetic Testing, Journal of Genetic Counseling, and the
New York Times .
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Is the whole of life visible to us, or do we in fact know only the one
hemisphere before we die?
Vincent Van Gogh
We tell ourselves stories in order to live.
Joan Didion
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CONTENTS
PART I: Introduction
1 Embarking on Genetic Journeys: Introduction 3
PART II: Genes in the Family
2 “Do I Want to Know?”: Testing Decisions 23
3 “Whom Should I Tell?”: Disclosures and Testing in Families 75
PART III: Genes in the Mind: Understanding Genetics
4 Genetic Tests as Rorschachs: Questions of “Why Me?” 119
5 “Am I My Genes?”: Genetic Identities 169
6 “Lightening Doesn’t Strike Twice”: Myths and Misunderstandings
about Genetics 183
PART IV: Genes in the Clinic
7 “What Should I Do About My Genes?”: Deciding on Treatment 203
8 “Passing it On?”: Reproductive Choices 227
9 “Th ere’s Only Privacy If You Make It”: Problems with Privacy
and Insurance 249
PART V: Genes in the Wider World
10 “Keep it in the Family?”: Other Disclosures Beyond Kin 273
1 1 “Crossing Over”: Entering Genetic Communities 289
12 “Testing Everyone?”: Gene Politics 311
PART VI: Conclusions
13 Genes in Everyday Life 321
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