Remember It and Will Continue Cheerfully Making Donations to the National Academies

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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ORGAN DONATION

OPPORTUNITIES FOR ACTION

Board on Health Sciences Policy

James F. Childress and Catharyn T. Liverman, Editors

THE NATIONAL ACADEMIES PRESS

Washington, D.C.
www.nap.edu

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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THE NATIONAL ACADEMIES PRESS

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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 study was supported by Award No. HHSH23457010 between the National Academy of Sciences and the U.S. Department of Health and Human Services and by a grant from The Greenwall Foundation. Any opinions, findings, or conclusions expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project.

Library of Congress Cataloging-in-Publication Data

Institute of Medicine (U.S.). Committee on Increasing Rates of Organ Donation.

Organ donation : opportunities for action / Committee on Increasing Rates of Organ Donation, Board on Health Sciences Policy ; James F. Childress and Catharyn T. Liverman, editors.

p. ; cm.

Includes bibliographical references.

This study was supported by Award no. HHSH23457010 between the National Academy of Sciences and the U.S. Department of Health and Human Services

ISBN 0-309-10114-X (pbk.)

1. Donation of organs, tissues, etc. 2. Transplantation of organs, tissues, etc. I. Childress, James F. II. Liverman, Catharyn T. III. Title.

[DNLM: 1. Tissue and Organ Procurement—organization & administration—United States. 2. Health Policy—United States. 3. Tissue Donors—supply & distribution—United States. 4. Transplants—supply & distribution—United States. WO 660 I568o 2006]

RD129.5.O74 2006

362.19'795—dc22

2006017677

Additional copies of this report are available from the

National Academies Press,

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Copyright 2006 by the National Academy of Sciences. All rights reserved.

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Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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—Goethe

INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES

Advising the Nation. Improving Health.

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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THE NATIONAL ACADEMIES

Advisers to the Nation on Science, Engineering, and 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. Ralph J. Cicerone is president of the National Academy of Sciences.

The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Wm. A. Wulf is president of the National Academy of Engineering.

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. Harvey V. Fineberg is president of the Institute of Medicine.

The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy's purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council.

www.national-academies.org

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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COMMITTEE ON INCREASING RATES OF ORGAN DONATION

JAMES F. CHILDRESS (Chair),

University of Virginia, Charlottesville

MARY ANN BAILY,

The Hastings Center, Garrison, New York

RICHARD J. BONNIE,

University of Virginia, Charlottesville

CLIVE O. CALLENDER,

Howard University, Washington, D.C.

RAUL DE VELASCO,

University of Miami, Florida

JAMES M. DUBOIS,

St. Louis University, Missouri

LEWIS R. GOLDFRANK,

New York University, New York

SANDRA D. HICKEY,

Georgetown Community Hospital, Georgetown, Kentucky

DAVID H. HOWARD,

Emory University, Atlanta, Georgia

DANNY O. JACOBS,

Duke University Medical Center, Durham, North Carolina

CYNDA HYLTON RUSHTON,

Johns Hopkins University and Children's Center, Baltimore, Maryland

DAVID SCHKADE,

University of California, San Diego

DEBRA A. SCHWINN,

Duke University Medical Center, Durham, North Carolina

KEITH WAILOO,

Rutgers University, New Brunswick, New Jersey

Liaison, Board on Health Sciences Policy

NANCY N. DUBLER,

The Albert Einstein College of Medicine, Bronx, New York

IOM Staff

CATHARYN T. LIVERMAN, Project Director

EMILY ANN MEYER, Project Officer

NORA HENNESSY, Research Associate (from September 2005)

JUDY ESTEP, Senior Project Assistant

KAREN BOYD, Research Associate (May–August 2005)

ANDREA SCHULTZ, Senior Project Assistant (April–July 2005)

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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BOARD ON HEALTH SCIENCES POLICY *

FRED H. GAGE (Chair),

The Salk Institute for Biological Studies, La Jolla, California

GAIL H. CASSELL,

Eli Lilly and Company, Indianapolis, Indiana

JAMES F. CHILDRESS,

University of Virginia, Charlottesville

ELLEN WRIGHT CLAYTON,

Vanderbilt University Medical School, Nashville, Tennessee

DAVID R. COX,

Perlegen Sciences, Mountain View, California

LYNN R. GOLDMAN,

Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland

BERNARD D. GOLDSTEIN,

University of Pittsburgh, Pittsburgh, Pennsylvania

MARTHA N. HILL,

Johns Hopkins University School of Nursing, Baltimore, Maryland

ALAN LESHNER,

American Association for the Advancement of Science, Washington, D.C.

DANIEL MASYS,

Vanderbilt University Medical Center, Nashville, Tennessee

JONATHAN D. MORENO,

University of Virginia, Charlottesville

E. ALBERT REECE,

University of Arkansas, Little Rock

MYRL WEINBERG,

National Health Council, Washington, D.C.

MICHAEL J. WELCH,

Washington University School of Medicine, St. Louis, Missouri

OWEN N. WITTE,

University of California, Los Angeles

MARY WOOLLEY,

Research!America, Alexandria, Virginia

IOM Staff

ANDREW M. POPE, Director

AMY HAAS, Board Assistant

DAVID CODREA, Financial Associate

*	IOM Boards do not review or approve individual reports and are not asked to endorse conclusions and recommendations. The responsibility for the content of the report rests with the authoring committee and the institution.

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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Independent Report Reviewers

This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council's (NRC's) Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report:

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Bernard Lo, University of California, San Francisco, and Judith R. Lave, University of Pittsburgh. Appointed by the NRC and the Institute of Medicine, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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Preface

Organ transplantation offers immense benefits. It extends the lives and improves the quality of life of thousands of individuals each year. However, the field faces the challenge of reducing the ever widening gap between the demand for and the supply of transplantable organs.

In looking back over the slightly more than two decades since enactment of the National Organ Transplant Act, we can see progress in the wide range of ongoing efforts to improve organ donation rates in the United States. Furthermore, this report comes at a time of focused efforts to improve the quality, coordination, and reliability of the multiple organizations and systems involved in organ donation.

In seeking to reduce the gap between supply and demand for transplantable organs, the committee notes that several policies and practices beyond its purview offer considerable potential. These include strengthening preventive efforts to improve health and reduce the need for transplantation, ensuring equitable access to transplantation by negating current financial and insurance constraints, and providing ongoing access to immunosuppressive medications to ensure that each donated organ is fully used.

Many people have thought long and hard about possible solutions to the shortage of transplantable organs; and the committee greatly benefited from the depth and breadth of the scientific, ethical, and policy literature and from the insights provided by individuals who met with the committee in workshops, open sessions, and discussions.

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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It was a privilege and a pleasure to chair this Institute of Medicine committee, whose diverse and remarkable members brought their own rich personal, disciplinary, and professional perspectives and insights to bear on this important topic. Committee discussions and deliberations were always illuminating, because members were devoted to carefully and thoughtfully examining the complex issues in light of the best available evidence and arguments. It is probably safe to say that by the end no single individual held all of the same positions that he or she had held at the outset.

The committee could not have accomplished its goals without the unstinting support, valuable advice, and constant good cheer provided by Cathy Liverman and her staff. We are grateful to them.

The committee hopes that this report will open up discussions, stimulate actions at many levels, and contribute to efforts that can increase the supply of transplantable organs.

James F. Childress, Chair

Committee on Increasing Rates of Organ Donation

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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Acknowledgments

The committee wishes to acknowledge the valuable contributions that were made to this study by many individuals who shared their expertise with the committee. The committee is very appreciative of the presentations by Gail Agrawal and Jeffrey Prottas at the committee's first meeting in March 2005. The committee greatly benefited from the opportunity for discussion with the researchers and healthcare professionals who presented informative talks at the committee's scientific workshop in June 2005 and at the committee's October 2005 meeting (Appendix B). We also thank those individuals who provided testimony during the public comment sessions (Appendix B). The Division of Transplantation of the Health Resources and Services Administration cosponsored this study; and the committee greatly appreciates the assistance and the support that it received from Jim Burdick, Hui-Hsing Wong, Sherry Whipple, Mary Ganikos, Virginia McBride, Jade Perdue, Michael Dreis, and others. The committee also thanks The Greenwall Foundation for cosponsoring this study and especially thanks William Stubing for his support of this project.

A special thanks goes to John Gallagher, who served as a consultant to the committee. His insights and analysis greatly assisted the committee in addressing issues regarding donation after circulatory determination of death. The committee also appreciates the input by Laura Siminoff on the determinants of organ donation. We also want to thank Jimmy Light for his technical review and his insights on the issues of donation after circulatory determination of death. Mark Schnitzler and Julia Mahoney served as

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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technical reviewers, and we greatly appreciate their time and insightful comments.

The committee wishes to thank the many individuals who talked with committee members regarding specific issues. The committee particularly wants to thank Paul Schwab and members of the Association of Organ Procurement Organizations and Chuck Mowll of the Joint Commission on Accreditation of Healthcare Organizations.

The contributions of Kathi Hanna and Kathryn Brown, consultants to the committee, were valuable to the committee's work. The committee also greatly appreciates the assistance provided by the interns who worked on this study: Greg Strait, Victoria Ingenito, and Ana Banerji Mukherjee.

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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Contents

		SUMMARY		1
1		INTRODUCTION		15
		Scope of This Report,		17
		Overview and History of the Current U.S. System,		18
		International Perspective,		26
		Terminology,		30
		U.S. Efforts to Increase Organ Donation,		31
		The Economic Value of Increasing the Organ Supply,		33
		Emphasis on Prevention,		36
		On the Horizon,		37
		Overview of This Report,		38
		References,		40
2		TRENDS AND PATTERNS		45
		Organ Donation Statistics and Trends,		45
		Who Donates? Individual and Family Decisions,		62
		References,		71
3		PERSPECTIVES AND PRINCIPLES		77
		The Committee's Charge,		77
		Perspectives and Principles,		78
		Criteria for Evaluating Proposed Changes,		90
		References,		91

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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4		SYSTEMS TO SUPPORT ORGAN DONATION		93
		Context of the Current U.S. Organ Donation System,		95
		Organ Donation and Transplantation Breakthrough Collaboratives,		101
		Ongoing Evolution of the Request Process,		106
		A Framework of Trust,		110
		Next Steps,		113
		Summary and Recommendations,		119
		References,		120
5		EXPANDING THE POPULATION OF POTENTIAL DONORS		127
		Background and Issues,		128
		Assessment of DCDD Strategies in the United States,		141
		General Ethical Considerations,		143
		Reexamination of Uncontrolled DCDD,		154
		Next Steps for DCDD,		156
		Expanded Criteria for Organ Donation,		160
		Summary and Recommendations,		167
		References,		169
6		PROMOTING AND FACILITATING INDIVIDUAL AND FAMILY DECISIONS TO DONATE		175
		A Framework for Informed Choice,		176
		Mandated Choice,		177
		Voluntary Choice: Expanding Opportunities to Document Donation Decisions,		181
		Public Education,		187
		Summary and Recommendations,		199
		References,		200
7		PRESUMED CONSENT		205
		Routine Removal,		206
		Presumed Consent,		208
		Conclusions,		225
		Summary and Recommendation,		226
		References,		227
8		INCENTIVES FOR DECEASED DONATION		229
		History and Context,		230
		Why a Free Market in Organs Is Problematic,		231
		Regulated Commerce in Organs,		239
		Financial Incentives Within a Donation Framework,		247

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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		Payments as a Token of Gratitude,		252
		Nonfinancial Incentives: Preferential Access to Donated Organs,		253
		Conclusions and Recommendations,		258
		References,		259
9		ETHICAL CONSIDERATIONS IN LIVING DONATION		263
		Background,		264
		Risk-Benefit Ratios,		268
		Other Ethical Considerations,		270
		Next Steps,		274
		Summary and Recommendations,		276
		References,		277
10		OPPORTUNITIES FOR ACTION		281
		APPENDIXES
A		Acronyms		283
B		Workshop Meetings		285
C		First-Person Consent Status and Organ Donor Registry Participation		289
D		Quantifying Self-Interest in Organ Donation		293
E		HRSA's Extramural Research Program		299
F		Washington Hospital Center: Protocol for the Rapid Organ Recovery Program, Transplantation Services		305
G		Committee and Staff Biographies		317
		INDEX		325

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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Suggested Citation:"Front Matter." Institute of Medicine. 2006. Organ Donation: Opportunities for Action. Washington, DC: The National Academies Press. doi: 10.17226/11643.

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