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Disposition of the Air Force Health Study DISPOSITION OF THE AIR FORCE HEALTH STUDY Committee on the Disposition of the Air Force Health Study Board on Population Health and Public Health Practice INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu
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Disposition of the Air Force Health Study THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 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 Contract No. V101(93)P-2154 between the National Academy of Sciences and US Department of Veterans Affairs. Any opinions, findings, conclusions, or recommendations 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. International Standard Book Number 0-309-10099-2 (BOOK) International Standard Book Number 0-309-65685-0 (PDF) Library of Congress Control Number: 2006923463 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Cover image: © Corbis Corporation. Copyright 2006 by the National Academy of Sciences. All rights reserved. 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 serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.
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Disposition of the Air Force Health Study “Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES Advising the Nation. Improving Health.
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Disposition of the Air Force Health Study 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
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Disposition of the Air Force Health Study COMMITTEE ON THE DISPOSITION OF THE AIR FORCE HEALTH STUDY DAVID J. TOLLERUD, M.D., M.P.H., (Chair), Professor and Chair, Department of Environmental & Occupational Health Sciences, University of Louisville, Louisville, Kentucky DAN G. BLAZER, M.D., Ph.D., M.P.H., Professor of Psychiatry, Duke University Medical Center, Duke University, Durham, North Carolina ELLEN WRIGHT CLAYTON, M.D., J.D., Professor, Center for Genetics and Health Policy, Vanderbilt University, Nashville, Tennessee MANNING FEINLEIB, M.D., M.P.H., Dr.P.H., Professor, Bloomberg School of Public Health, The Johns Hopkins University, Baltimore, Maryland MARK S. GOLDBERG, Ph.D., Associate Professor, Department of Medicine, McGill University, Quebec, Canada SUSAN E. HANKINSON, Sc.D., M.P.H., Associate Professor, Department of Epidemiology, Harvard School of Public Health, Boston, Massachusetts DAVID A. KALMAN, Ph.D., Professor and Chair, Department of Environmental and Occupational Health Sciences, University of Washington, Seattle, Washington DEJURAN RICHARDSON, Ph.D., Professor of Mathematics, Lake Forest College, Chicago, Illinois REGINA SANTELLA, Ph.D., Professor, Mailman School of Public Health, Columbia University, New York City, New York CONSULTANTS TO THE COMMITTEE JAMES G. HODGE, JR., J.D., L.L.M., Associate Professor, Bloomberg School of Public Health, The Johns Hopkins University, Baltimore, Maryland VICTOR PONTES, M.S., Senior Data Manager, The Channing Laboratory, Brigham and Women’s Hospital and Harvard Medical School, Boston, Massachusetts STAFF David A. Butler, Ph.D., Study Director Amy O’Connor, M.P.H. candidate, Research Associate Sonia J. Cheruvillil, M.P.H., Senior Program Assistant Michael Saulle, B.S., Staff Intern Rose Marie Martinez, Sc.D., Director, Board on Population Health and Public Health Practices
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Disposition of the Air Force Health Study 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 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: Christine B. Ambrosone, Ph.D., Director, Epidemiology; Department of Cancer Prevention and Population Sciences; Roswell Park Cancer Institute Garnet L. Anderson, Ph.D., Co-Principal Investigator; Fred Hutchinson Cancer Research Center Erik W. Austin, Acting Director, Assistant Director of ICPSR and Director of Collection Development, and Archivist; Inter-university Consortium for Political and Social Research (ICPSR), Institute for Social Research; University of Michigan Tee L. Guidotti, M.D., M.P.H., Professor and Chair, Department of Environmental and Occupational Health; School of Public Health and Health Services; The George Washington University Medical Center
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Disposition of the Air Force Health Study Stephen W. Lagakos, Ph.D., Henry Pickering Walcott Professor of Biostatistics and Chair, Department of Biostatistics; Harvard School of Public Health Mark A. Rothstein, J.D., Herbert F. Boehl Chair of Law and Medicine and Director, Institute for Bioethics, Health Policy and Law; University of Louisville Louise Ryan, Ph.D., Professor of Biostatistics, Department of Biostatistics; Harvard School of Public Health Robert D. Sparks, M.D., Senior Associate; California Medical Association Foundation David S. Strogatz, Ph.D., M.S.P.H., Associate Professor and Chair, Department of Epidemiology and Biostatistics; School of Public Health; University at Albany, State University of New York 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 M. Donald Whorton, M.D., WorkCare, Inc. and Stephen E. Fienberg, Ph.D., Carnegie Mellon University. Appointed by the National Research Council and 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.
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Disposition of the Air Force Health Study Contents EXECUTIVE SUMMARY 1 1 INTRODUCTION 15 Intent and Goals of the Study, 15 Information Gathering by the Committee, 16 The Committee’s Interim Letter Report, 17 Related Institute of Medicine Reports, 17 Organization of the Report, 18 References, 19 2 BACKGROUND 20 Development of a Military Aerial Herbicide Delivery System, 20 Operation Ranch Hand, 23 The Agent Orange Controversy, 28 The Air Force Health Study, 31 Compensation and Benefits for Vietnam Veterans, 57 References, 62 3 THE AIR FORCE HEALTH STUDY DATABASE 68 Data Collection and Database Characteristics, 68 Obstacles and Limitations to Further Use of AFHS Data, 79 Findings, Conclusions, and Recommendations, 84 References, 87
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Disposition of the Air Force Health Study 4 THE AIR FORCE HEALTH STUDY SPECIMENS REPOSITORY 90 Specimen Collection and Shipment, 90 Obstacles and Limitations to Further Use of AFHS Specimens, 93 Findings, Conclusions, and Recommendations, 98 References, 99 5 VALUE OF THE AFHS RESEARCH ASSETS 101 Scientific Merit of the Data Assets, 101 Future Potential of the Data Assets, 107 Privacy and Security Concerns Related to the Retention and Maintenance of the AFHS Data Assets, 115 Conclusions and Observations, 116 References, 117 6 OPTIONS AND RECOMMENDATIONS FOR FURTHER STUDY OF THE AFHS DATA ASSETS 122 Disposition of the AFHS Nonelectronic Data Assets, 123 Alternatives for the Future of the AFHS Data Assets, 128 Characteristics of a Good Custodian of the AFHS Data Assets, 133 Consent Issues Regarding Future Uses of the AFHS Data Assets, 140 Oversight of the Future Uses of the AFHS Data Assets, 144 Options for the Future Management of the AFHS Data Assets, 149 Observations and Recommendations Regarding the Choice of a Future Custodian, 158 Cost Issues in Extending Study of the AFHS Data Assets, 162 References, 170 APPENDIXES A Agendas of Public Meetings Held by the Committee on the Disposition of the Air Force Health Study 177 B Air Force Health Study Data 180 C Epidemiologic Studies of Vietnam Veterans Health 215 D Calculation of Expected Number of Deaths in the U.S. Air Force Ranch Hand Morbidity Study Cohort over the Next 10 Years 239 E Comparison of Data Sharing Programs That Use Data Enclaves 246 F Committee on the Disposition of the Air Force Health Study 259
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Disposition of the Air Force Health Study DISPOSITION OF THE AIR FORCE HEALTH STUDY
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