When Science Offers Salvation: Patient Advocacy and Research Ethics

228 Pages·2001·12.449 MB·English

by  Rebecca Dresser

WHEN SCIENCE
OFFERS SALVATION
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WHEN SCIENCE
OFFERS SALVATION
Patient Advocacy ana Research Ethics
Rebecca Dresser
OXPORD
UNIVERSITY PRESS
2001
OXPORD
UNIVERSITY PRESS
Oxford New York
Athens Auckland Bangkok Bogota Buenos Aires Calcutta
Cape Town Chennai Dar es Salaam Delhi Florence Hong Kong Istanbul
Karachi Kuala Lumpur Madrid Melbourne Mexico City Mumbai
Nairobi Paris Sao Paulo Shanghai Singapore Taipei Tokyo Toronto Warsaw
and associated companies in
Berlin Ibadan
Copyright © 2001 by Oxford University Press.
Published by Oxford University Press, Inc.
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http://www.oup-usa.org
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
Dresser, Rebecca.
When science offers salvation : patient advocacy and research ethics /
by Rebecca Dresser,
p. cm. Includes bibliographical references and index.
ISBN 0-19-514313-2
1. Patient advocacy. 2. Medical ethics. I. Title.
R727.45.D74 2001 174'.2—dc21 00-062388
2 4 6 8 7 5 31
Printed in the United States of America
on acid-free paper
To my family
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CONTENTS
Preface, ix
1. Patient Advocacy and me Changing Research Environment, 3
Recurring Themes, 8
Advocacy in Context, 15
Language and Point of View, 18
2. Advocates on the Research Team—Shaping and Assessing Science, 21
Origins, 23
Advocacy's Potential Contributions, 28
Doubts and Questions, 33
Effective and Ethical Community Participation, 39
3. Hope Versus Hypothesis Testing: Expanded Access to Experimental
Interventions, 45
The Path to Expanded Access, 48
Access Policies: The Underlying Trade-Offs, 52
Toward Ethically Defensible Access Programs, 66
4. Fairness in Allocating (Government Research Funds, 71
Criteria for Research Priority Setting, 75
The Priority-Setting Process, 77
Problems with Priority Setting, 79
Distributive Justice Considerations, 80
Difficulties in Evaluating the Fairness of NIH Allocation: An
Illustration, 83
Procedural Justice Considerations, 85
Devising a Fairer Priority-Setting System, 87
vii
viii Contents
5. Public Participation in Allocating (Government Research Funds, 91
The Emergence of Research Funding Advocacy, 93
Ethical and Policy Implications of Funding Advocacy, 96
A Deliberative Democratic Approach to Funding Allocation, 99
6. Advocates in Research Ethics Oversight: A Voice for the Public?, 109
Policies on Public Ethics Oversight, 112
Public Participation Aims, 116
The Gap Between Aspiration and Reality, 121
Advocates in Research Ethics Deliberations, 123
7. Advocacy for Accuracy in Research Reporting, 129
Reporters and Scientists in the Spotlight: Two Illustrations, 132
Pressures to Exaggerate Research Implications, 134
The Primacy of Truth telling, 139
Advocates As Reform Catalysts, 141
8. Research Advocacy Today and Tomorrow, 151
Old Themes Revisited, 153
Advocacy and Ethics: The Case for Collaboration, 157
Ethical Principles for Research Advocacy, 159
Preparing for Advocacy's Next Phase, 165
Notes, 173
Index, 207
PREFACE
In 1992, I was invited to participate in a project at the Hastings Center, an
institute devoted to the study of bioethics. The project would explore ethical
and policy issues raised by the use of long-acting contraceptives. The plan was
to follow the standard Hastings Center project model, which included group
discussions, individual presentations and papers, and general recommenda-
tions for clinical and policy decision making. The model was familiar, for I
had been part of several Hastings Center projects investigating other bioethics
topics.
The project on long-acting contraceptives had one distinct feature, however.
Although the study group would be composed largely of the usual suspects—
philosophers, clinicians, public health experts, law professors, social scien-
tists—a few of its members would be community health advocates. Once the
meetings started, it became obvious that the group's altered composition
would alter the deliberations, as well.
The community health advocates disrupted the ordinary course of business
for the project participants. They strayed from the abstract, academic dis-
course characteristic of the typical Hastings Center inquiry. They disputed
scholarly and professional claims by citing real-life situations that exposed gaps
in and difficulties with various medical, ethical, and legal approaches. In due
course, the other project participants either embraced or discounted the ad-
vocacy points of view.
At times, tensions between certain Hastings Center veterans and the new-
comers were palpable. Matters came to a head when an elder statesman pro-
nounced the advocates and their supporters confused about their concerns
and proceeded to explain what was really bothering them! Afterwards, talk
arose of dissenting statements and minority reports, topics rarely aired in Has-
tings Center halls.
Negotiations were painful, and not all were happy with the final product.1
Yet the process opened my eyes to the advantages of advocacy participation.
I found the project meetings more stimulating, wide-ranging, and instructive
ix