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NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance.
This report has been reviewed by a group other than the authors according to procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine.
The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Frank Press is president of the National Academy of Sciences.
The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Samuel O. Thier is president of the Institute of Medicine.
Support for this activity was provided by the Howard Hughes Medical Institute. The opinions and conclusions expressed here are those of the authors and do not necessarily represent the views of the Howard Hughes Medical Institute, the National Academy of Sciences, or any of their constituent parts.
Library of Congress Cataloging-in-Publication Data
Biomedical politics / Kathi E. Hanna, editor ; Division of Health Sciences Policy, Committee to Study Biomedical Decision Making, Institute of Medicine.
Includes bibliographical references and index.
1. Medical policy—Case studies. 2. Health planning—Case studies. I. Hanna, Kathi E. II. Institute of Medicine (U.S.).
Committee to Study Biomedical Decision Making.
[DNLM: 1. Decision Making. 2. Health Policy—United States.
3. Politics—United States. WA 540 AA1 B52]
for Library of Congress
Copyright © 1991 by the National Academy of Sciences
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Printed in the United States of America
The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The image adopted as a logotype by the Institute of Medicine is based on a relief carving from ancient Greece, now held by the Staatlichemuseen in Berlin.
COMMITTEE TO STUDY BIOMEDICAL DECISION MAKING
CARL W. GOTTSCHALK (Chair), Kenan Professor of Medicine and Physiology,
Department of Medicine, University of North Carolina, Chapel Hill, North Carolina
PAUL BERG, Director,
Beckman Center for Molecular and Genetic Medicine and Willson
Professor of Biochemistry,
Stanford University, Stanford, California
PETER F. CARPENTER, Visiting Scholar,
Center for Biomedical Ethics, Stanford University, Stanford, California
LEON EISENBERG, Presley Professor and Chairman,
Department of Social Medicine, Harvard Medical School, Boston, Massachusetts
WALTER HARRELSON, Distinguished Professor of Hebrew Bible, emeritus,
The Divinity School, Vanderbilt University, Nashville, Tennessee
WILLIAM HUBBARD, Jr., Retired President,
The Upjohn Company
WILLIAM R. KENNEDY, Professor of Neurology,
University of Minnesota Health Center, Minneapolis, Minnesota
PATRICIA A. KING, Professor of Law,
Georgetown University Law Center, Washington, D.C.
ERNEST R. MAY, Charles Warren Professor of History,
Kennedy School of Government, Harvard University, Cambridge, Massachusetts
DOROTHY NELKIN, Professor,
Department of Sociology and
School of Law, New York University, New York, New York
STANLEY JOEL REISER, Griff T. Ross Professor of Humanities and Technology in Health Care,
University of Texas Health Science Center, Houston, Texas
PAUL SLOVIC, President,
Decision Research and
Professor of Psychology,
University of Oregon, Eugene, Oregon
RUTH ELLEN BULGER, Division Director,
Division of Health Sciences Policy
KATHI E. HANNA, Study Director
CATHARINE CHETNEY, Senior Secretary
LOUISE GILLIS, Senior Secretary
LEAH MAZADE, Staff Editor
SHELLEY MEYERS, Senior Secretary
APRIL POWERS, Senior Secretary
Scientists like to believe that they operate in a rational world, one in which interpretations and predictions are based on objective data and evaluated through a systematic process. While some question whether these suppositions hold true for science, they certainly fall apart when science becomes a public issue, as it so often does in biomedicine. Decisions about how to proceed with the funding, ordering, and use of biomedical research are made in the public arena. The interests of scientists, regulators, politicians, patients, practitioners, and interest groups converge and often clash. These clashes may slow the progression of science and medicine while simultaneously advancing moral, ethical, or democratic causes. Sometimes, the interests of all groups can be advanced. In other cases, rigid deadlock occurs with little movement in any direction. Is there a better way by which to deal with controversial biomedical issues confronting us today? Can we better anticipate the forces that will emerge on the various sides of an issue, or are we destined to muddle through and make policy incrementally and contentiously?
These were some of the questions posed in the summer of 1989 to our committee, a group of individuals with diverse backgrounds and experiences. We were given the task of using case studies as a first step toward answering some of these questions. This document is the result of our efforts. As we chose the topics for case study we were mindful of the fact that we were exploring possibilities, not necessarily testing hypotheses. We knew we needed to understand in great
detail how several decisions were made before we could attempt to postulate guidelines or prescriptions for better decision making. What we found was both illuminating and complex. The politics of decision making are easily described but difficult to predict. Each decision or set of decisions faces different paths, publics, and constraints, as the cases in this book so beautifully demonstrate.
In our deliberations, we stopped short of recommending a normative approach to decision making. Case study methodology militates against such an approach. What we chose to do was define areas of research to be examined that would move the study of decision making to a more analytical level. Our greatest contribution may well be providing six individuals the opportunity to tell compelling stories about how we arrive at public biomedical decisions.
The committee thanks all who contributed to its work. We greatly appreciate the opportunity provided by the Howard Hughes Medical Institute to investigate the process of biomedical decision making. The committee is grateful to the six individuals who prepared and presented the case studies. These studies were the information base for the committee's deliberations.
We wish especially to thank and to acknowledge the contributions of Kathi E. Hanna, the study director and editor. With the able assistance and advice of Ruth E. Bulger, division director, she planned and organized the meetings, analyzed the data, edited drafts, and prepared the Introduction and Conclusions sections. The project was also assisted by the excellent support work of Catharine Chetney, Shelley Meyers, Louise Gillis, and April Powers, and the thorough copyediting of Leah Mazade.
Carl W. Gottschalk, Chair
Committee to Study Biomedical Decision Making