Implications of Genomics for Public Health

Workshop Summary

Committee on Genomics and the Public’s Health in the 21st Century

Board on Health Promotion and Disease Prevention

Lyla M. Hernandez, Editor

INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS
Washington, D.C.
www.nap.edu



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Implications of Genomics for Public Health: Workshop Summary Implications of Genomics for Public Health Workshop Summary Committee on Genomics and the Public’s Health in the 21st Century Board on Health Promotion and Disease Prevention Lyla M. Hernandez, Editor INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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Implications of Genomics for Public Health: Workshop Summary THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW 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. 200N01-OD-4-2139 between the National Academy of Sciences and the Agency for Health Care Research and Quality, National Institutes of Health. 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 0-309-09607-3 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, NW, Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at www.iom.edu. Copyright 2005 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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Implications of Genomics for Public Health: Workshop Summary “Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES Adviser to the Nation to Improve Health

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Implications of Genomics for Public Health: Workshop Summary 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. Bruce M. Alberts 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. Bruce M. Alberts and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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Implications of Genomics for Public Health: Workshop Summary COMMITTEE ON GENOMICS AND THE PUBLIC’S HEALTH IN THE 21ST CENTURY LAWRENCE O. GOSTIN, J.D., L.L.D. (HON.) (Chair), Professor of Law, Director, Center on Law and the Public’s Health, Georgetown University, Professor of Public Health, Johns Hopkins University MELISSA AUSTIN, M.S., PH.D., Professor of Epidemiology, Director, Institute for Public Health Genetics, University of Washington DEBORAH BOWEN, PH.D., Associate Affiliate Professor, Fred Hutchinson Cancer Research Center, University of Washington ELLEN WRIGHT CLAYTON, M.D., J.D., Rosalind E. Franklin Professor of Genetics and Health Policy, Director of Genetics and Health Policy Center, Senior Fellow, Institute for Public Policy Studies, Professor of Law and Pediatrics, Vanderbilt University IRVING GOTTESMAN, PH.D., Professor in Adult Psychiatry, Senior Fellow, Department of Psychology, University of Minnesota, Twin Cities KAREN GREENDALE, M.A., C.G.C., Director, Genetics Education and Information Program, Bureau of Chronic Disease Services, New York State Department of Health SHARON L.R. KARDIA, PH.D., Associate Professor, Department of Epidemiology, Director, Public Health Genetics Program, University of Michigan School of Public Health DAVID NERENZ, PH.D., Senior Staff Investigator, Center for Health Services Research, Henry Ford Health System KENNETH OFFIT, M.D., Chief, Clinical Genetics Service, Department of Human Genetics, Memorial Sloan-Kettering Cancer Center DAVID L. RIMOIN, M.D., PH.D., Steven Spielberg Chairman of Pediatrics, Director, Medical Genetics–Birth Defects Center, Cedars-Sinai Medical Center, Professor of Pediatrics, Medicine & Human Genetics, David Geffen School of Medicine at University of California, Los Angeles DAVID L. VEENSTRA, PHARM.D., PH.D., Assistant Professor, Department of Clinical Pharmacy, University of California at San Francisco DEBORAH KLEIN WALKER, ED.D., Principal Associate, Abt Associates, Inc. Liaison to the Board on Health Promotion and Disease Prevention GEORGE J. ISHAM, M.D., HealthPartners, Inc. Staff LYLA M. HERNANDEZ, Study Director MAKISHA WILEY, Senior Program Assistant ROSE MARIE MARTINEZ, SC.D., Director, Board on Health Promotion and Disease Prevention

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Implications of Genomics for Public Health: Workshop Summary Reviewers This report has been reviewed in draft form by persons chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council 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 for their review of this report: MICHAEL ERIKSEN, Georgia State University ROXANNE PARROTT, PH.D., Pennsylvania State University BERNIE ROSOF, M.D. F.A.C.P., North Shore Long Island Jewish Health System DONNA SPOON, Health Director’s Office Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the final draft of the report before its release. The review of this report was overseen by ROBERT B. WALLACE, M.D., College of Public Health, University of Iowa. He was 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 author committee and the institution.

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Implications of Genomics for Public Health: Workshop Summary Contents 1   INTRODUCTION   1 2   WORKSHOP PRESENTATIONS   3      Opening Remarks, Lawrence O. Gostin, J.D., L.L.D.   3      Keynote: Genomics and Public Health: A Vision for the Future, Gilbert S. Omenn, M.D., Ph.D.   5      The Science of Genomics          The Science of Genomics and Its Application to Common Diseases, Aravinda Chakravarti, Ph.D.   9      Bridging Genomics and Population Health, Sharon Kardia, Ph.D.   10      Gene–Environment Interactions, David L. Eaton, Ph.D.   14      Commentary          Melissa A. Austin, M.S., Ph.D.,   15      David L. Rimoin, M.D., Ph.D.,   17      Genomics in Practice          Clinical Use of Genomic Information, Alfred O. Berg, M.D., M.P.H.   22

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Implications of Genomics for Public Health: Workshop Summary      Cost-Effectiveness Analysis in Decision Making, Scott Ramsey, M.D., Ph.D.   22      Intersection of Genomic Information and Behavioral Sciences, Ellen R. Gritz, Ph.D., and Susan Peterson, M.P.H., Ph.D.   24      How to Effect Change in the Population, William Foege, M.D., M.P.H.   25      Commentary          Deborah Bowen, Ph.D.,   27      Kenneth Offit, M.D.,   28      Nelson Freimer, M.D.,   29      Keynote: Stratification, Justice, and Opportunity, Alexandra Shields, Ph.D.   30      Genomics and Public Health          The Public Health System, J. Michael McGinnis, M.D., M.P.P.   32      International Lessons: Biobanks, Bartha Maria Knoppers, Ph.D., with Clementine Sallée   34      Educating the Public, Vicki Freimuth, Ph.D.   37      Capacity, Kristine Gebbie, R.N., Dr.P.H.   40      Commentary          Jean Chabut, M.P.H.,   42      Sue Friedman, D.V.M.,   43      Judith L. Benkendorf, M.S., C.G.C.,   44      Genomic Information and Its Application to Population Health, Michael Liebman, Ph.D.   46      Financing and Access, Marc Williams, M.D.   49      Legal and Regulatory, Ellen Wright Clayton, M.D., J.D., with the assistance of Julie Schreiner-Oldham   51      Commentary          Ruth Katz, J.D., M.P.H.,   53      Judith Feder, Ph.D.,   54      Workshop Overview: Lessons Learned, Places to Go, James G. Hodge, Jr., J.D., L.L.M.   55 3   PRIORITIES   61

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Implications of Genomics for Public Health: Workshop Summary     APPENDIXES     A   Glossary   69 B   Biosketches   78 C   Workshop Agenda   84

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