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Direct-to-Consumer Genetic Testing: Summary of a Workshop (2011)

Chapter: Appendix H: Membership of Oversight Boards and Committees

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Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×

Appendix H
Membership of Oversight Boards and Committees

COMMITTEE ON SCIENCE, TECHNOLOGY, AND LAW

DONALD KENNEDY (NAS/IOM), (Co-Chair), President Emeritus and Bing Professor of Environmental Science Emeritus, Stanford University; Emeritus Editor-in-Chief, Science

RICHARD A. MERRILL (IOM), (Co-Chair), Daniel Caplin Professor of Law Emeritus, University of Virginia Law School

FREDERICK R. ANDERSON, JR., Partner, McKenna, Long & Aldridge LLP

ARTHUR I. BIENENSTOCK, Special Assistant to the President for SLAC and Federal Research Policy, Stanford University

BARBARA E. BIERER, Senior Vice President for Research, Brigham and Women’s Hospital

ELIZABETH H. BLACKBURN (NAS/IOM), Morris Herzstein Professor of Biology and Physiology, Department of Biochemistry and Biophysics, University of California, San Francisco

JOE S. CECIL, Project Director, Program on Scientific and Technical Evidence, Federal Judicial Center

RICHARD F. CELESTE, President, Colorado College

JOEL E. COHEN (NAS), Abby Rockefeller Mauzé Professor and Head, Laboratory of Populations, The Rockefeller University and Columbia University

ROCHELLE COOPER DREYFUSS, Pauline Newman Professor of Law and Director, Engelberg Center on Innovation Law and Policy, New York University School of Law

ALICE P. GAST (NAE), President, Lehigh University

LAWRENCE O. GOSTIN (IOM), Associate Dean for Research and Academic Programs, Linda D. and Timothy J. O’Neill Professor

Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×

of Global Health Law, and Faculty Director, O’Neill Institute for National and Global Health Law, Georgetown University; Professor of Public Health, The Johns Hopkins University; Director of the Center for Law & the Public’s Health, The Johns Hopkins and Georgetown Universities

GARY W. HART, Wirth Chair Professor, School of Public Affairs, University of Colorado, Denver

BENJAMIN W. HEINEMAN, JR., Senior Fellow, Harvard Law School and Harvard Kennedy School of Government

DAVID BROCK HORNBY, Judge, U.S. District Court, District of Maine

DAVID KORN (IOM), Chief Scientific Officer, Association of American Medical Colleges

RICHARD A. MESERVE (NAE), President, Carnegie Institution for Science and Senior Of Counsel, Covington & Burling, LLP

DUNCAN T. MOORE (NAE), Professor, The Institute of Optics, University of Rochester

ALAN B. MORRISON, Attorney, Fail Elections Legal Network

HARRIET RABB, Vice President and General Counsel, Rockefeller University

PAUL D. RHEINGOLD, Senior Partner, Rheingold, Valet, Rheingold, Shkolnik & McCartney LLP

BARBARA ROTHSTEIN, Director, Federal Judicial Center

JONATHAN M. SAMET (IOM), Professor and Chairman, Department of Epidemiology, The Johns Hopkins Bloomberg School of Public Health

DAVID S. TATEL, Judge, U.S. Court of Appeals for the District of Columbia

Staff

ANNE-MARIE MAZZA, Director

GURUPRASAD MADHAVAN, Program Officer (until November 2010)

STEVEN KENDALL, Senior Program Associate

Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×

BOARD ON LIFE SCIENCES

KEITH R. YAMAMOTO (NAS/IOM), (Chair), Professor of Cellular and Molecular Pharmacology and Executive Vice Dean, School of Medicine, University of California, San Francisco

ANN M. ARVIN (IOM), Lucile Packard Professor in Pediatrics and Microbiology & Immunology and Vice Provost and Dean of Research, Stanford University School of Medicine

BONNIE L. BASSLER (NAS), Howard Hughes Medical Institute Investigator and Squibb Professor of Molecular Biology, Princeton University

VICKI L. CHANDLER (NAS), Chief Program Officer for Science, Gordon and Betty Moore Foundation and Regents’ Professor, Departments of Plant Sciences and Molecular & Cellular Biology, University of Arizona

SEAN EDDY, Group Leader, Janelia Farm Research Campus, Howard Hughes Medical Institute

MARK D. FITZSIMMONS, Associate Director, MacArthur Fellows Program, John D. and Catherine T. MacArthur Foundation

DAVID R. FRANZ, Vice President and Chief Biological Scientist, Midwest Research Institute and Senior Advisor, Office of the Assistant to the Secretary of Defense for Nuclear, Chemical and Biological Defense Programs

LOUIS J. GROSS, James R. Cox Professor in Ecology and Evolutionary Biology and Mathematics and Director, The Institute for Environmental Modeling, University of Tennessee; and Director, National Institute for Mathematical and Biological Synthesis

JO HANDELSMAN, Howard Hughes Medical Institute Professor and Chair, Department of Bacteriology, University of Wisconsin–Madison

CATO T. LAURENCIN (IOM), Van Dusen Endowed Chair in Academic Medicine, Distinguished Professor of Orthopaedic Surgery, and Vice President for Health Affairs, University of Connecticut Health Center; and Dean, University of Connecticut School of Medicine, University of Connecticut Health Center

JONATHAN D. MORENO (IOM), David and Lyn Silfen University Professor of Ethics and Professor of Medical Ethics and of History and Sociology of Science, University of Pennsylvania; and Senior Fellow, Center for American Progress

Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×

ROBERT M. NEREM (NAE/IOM), Robert H. Petit Distinguished Chair for Engineering in Medicine and Institute Professor and Director, Parker H. Petit Institute for Bioengineering and Bioscience; and Director, Georgia Tech/Emory Center for the Engineering of Living Tissue, Georgia Institute of Technology

CAMILLE PARMESAN, Associate Professor of Integrative Biology, University of Texas at Austin

MURIEL E. POSTON, Dean of the Faculty and Professor of Biology, Skidmore College

ALISON G. POWER, Dean of the Graduate School and Professor of Ecology and Evolutionary Biology and of Science & Technology Studies, Cornell University

BRUCE W. STILLMAN (NAS), President and Chief Executive Officer, Cold Spring Harbor Laboratory

CYNTHIA WOLBERGER, Howard Hughes Medical Institute Investigator and Professor of Biophysics and Biophysical Chemistry, Johns Hopkins University School of Medicine

MARY WOOLLEY (IOM), President and Chief Executive Officer, Research!America

Staff

FRANCES E. SHARPLES, Director

JO L. HUSBANDS, Scholar/Senior Project Director

ADAM P. FAGEN, Senior Program Officer

ANN H. REID, Senior Program Officer

MARILEE K. SHELTON-DAVENPORT, Senior Program Officer

INDIA HOOK-BARNARD, Program Officer

ANNA FARRAR, Financial Associate

AMANDA P. CLINE, Senior Program Assistant (until May 2010)

REBECCA L. WALTER, Senior Program Assistant

CARL-GUSTAV ANDERSON, Program Assistant

Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×

FORUM ON DRUG DISCOVERY, DEVELOPMENT, AND TRANSLATION

GAIL CASSELL (IOM), (Co-Chair), Vice President, Scientific Affairs and Distinguished Lilly Research Scholar for Infectious Diseases, Eli Lilly and Company

JEFFREY DRAZEN (IOM), (Co-Chair), Editor-in-Chief, New England Journal of Medicine

BARBARA ALVING, Director, National Center for Research Resources, National Institutes of Health

LESLIE BENET (IOM), Professor, Department of Biopharmaceutical Sciences, School of Pharmacy, University of California, San Francisco

ANN BONHAM, Chief Scientific Officer, Association of American Medical Colleges

CATHERINE BONUCCELLI, Vice President, Development Projects, Symbicort, AstraZeneca Pharmaceuticals

LINDA BRADY, Director, Division of Neuroscience and Basic Behavioral Science, National Institute of Mental Health

ROBERT CALIFF, Director, Duke Translational Medicine Institute, Professor of Medicine and Vice Chancellor for Clinical and Translational Research, Duke University Medical Center

SCOTT CAMPBELL, National Vice President, American Diabetes Association

C. THOMAS CASKEY (NAS/IOM), Chief Operating Officer and Director/CEO, University of Texas HSC at Houston

PETER CORR, Co-Founder and General Partner, Celtic Therapeutics LLLP

JAMES DOROSHOW, Director, Division of Cancer Treatment and Diagnosis, National Cancer Institute

PAUL EISENBERG, Senior Vice President, Global Regulatory Affairs and Safety, Amgen Inc.

GARY FILERMAN, Senior Vice President and Chairman, Health Management and Policy Group, ATLAS Research

GARRET FITZGERALD (IOM), Professor of Medicine, Professor and Chair of Pharmacology, Department of Pharmacology, University of Pennsylvania School of Medicine

ELAINE GALLIN, Director, Medical Research Programs, Doris Duke Charitable Foundation

Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×

STEVEN GALSON, Senior Vice President, Science Operations International Corporation

MIKHAIL GISHIZKY, Chief Scientific Officer, Entelos, Inc.

HARRY GREENBERG, Senior Associate Dean for Research, Joseph D. Grant Professor of Medicine and Microbiology & Immunology, Stanford University School of Medicine

STEPHEN GROFT, Director, Office of Rare Disease Research, National Institutes of Health

PETER HONIG, Former Executive Vice President for Worldwide Regulatory Affairs and Product Safety within Development, Merck Research Laboratories

ANNALISA JENKINS, Senior Vice President Global Medical, Bristol Myers Squibb

MICHAEL KATZ (IOM), Senior Vice President for Research and Global Programs, March of Dimes Foundation

JACK KEENE, James B. Duke Professor, Molecular Genetics & Microbiology, Duke University Medical Center

RONALD KRALL, Senior Vice President and Chief Medical Officer, GlaxoSmithKline

FREDA LEWIS-HALL, Chief Medical Officer, SVP, Pfizer

WILLIAM MATTHEW, Director of Translational Research, NINDS National Institutes of Health

MARK MCCLELLAN (IOM), Director, Engelberg Center for Health Care Reform, The Brookings Institution

CAROL MIMURA, Assistant Vice Chancellor for Intellectual Property & Industry Research Alliances (IPIRA), University of California, Berkeley

JOHN ORLOFF, Senior Vice President, US Medical & Drug Regulatory Affairs, Novartis Pharmaceuticals Corporation

AMY PATTERSON, Acting Director, Office of Science Policy, National Institutes of Health

JANET SHOEMAKER, Director, Office of Public Affairs, American Society for Microbiology

LANA SKIRBOLL, Acting Director, Division of Program Coordination, Planning, and Strategic Initiatives, National Institutes of Health

NANCY SUNG, Senior Program Officer, Burroughs-Wellcome Fund

JORGE TAVEL, Deputy Director, Division of Clinical Research, National Institute of Allergy and Infectious Diseases

JANET TOBIAS, President Sierra/Tango Productions, Ikana Media

Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×

JOANNE WALDSTREICHER, Head of Global Development, CNS/IM Franchise

JANET WOODCOCK, Deputy Commissioner and Chief Medical Officer, U.S. Food and Drug Administration

RAYMOND WOOSLEY, President and CEO, The Critical Path Institute

Staff

ROBERT GIFFIN, Forum Director (until February 2010)

SALLY CLUCHEY, Program Officer (until October 2009)

Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×

ROUNDTABLE ON TRANSLATING GENOMIC-BASED RESEARCH FOR HEALTH

WYLIE BURKE, (IOM), (Chair), Professor and Chair, Department of Bioethics and Humanities, University of Washington

BRUCE BLUMBERG, Co-Chief of Medical Genetics, Kaiser-Permanente, Oakland, and Institutional Director of Graduate Medical Education, Northern California Kaiser Permanente

DENISE E. BONDS, Medicial Director, Division of Prevention & Population Sciences, National Heart, Lung, and Blood Institute

C. THOMAS CASKEY (NAS/IOM), Director and Chief Executive Officer, The George & Cynthia Mitchell Distinguished Chair in Neurosciences and Executive Vice President of Molecular Medicine and Genetics, Brown Foundation Institute of Molecular Medicine, University of Texas Health Science Center at Houston

STEPHEN ECK, Vice President, Translational Medicine & Pharmacogenomics, Eli Lilly and Company

ANDREW N. FREEDMAN, Genetic Epidemiologist, Risk Factor Monitoring and Methods Branch, Division of Cancer Control and Population Sciences, National Cancer Institute

GEOFFREY GINSBURG, Director, Center for Genomic Medicine, Institute for Genomic Sciences & Policy, Duke University

R. RODNEY HOWELL, Special Assistant to the Director, National Institute of Child Health and Human Development

KATHY HUDSON, Director, Genetics and Public Policy Center, Johns Hopkins Berman Institute of Bioethics (until July 2009)

SHARON KARDIA, Director, Public Health Genetic Programs Associate Professor, Department of Epidemiology, University of Michigan, School of Public Health

MOHAMED KHAN, Associate Director of Translational Research Department of Radiation Medicine, Roswell Park Cancer Institute

MUIN KHOURY, Director, National Office of Public Health Genomics, Centers for Disease Control and Prevention

ALLAN KORN, Chief Medical Officer, Senior Vice President Clinical Affairs, BlueCross/BlueShield Association

DEBRA LEONARD, Professor and Vice Chair of Laboratory Medicine Director of the Clinical Laboratories, Weill Cornell Medical Center

MICHELE LLOYD-PURYEAR, Chief, Genetic Services Branch, Health Resources and Services Administration

Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×

ELIZABETH MANSFIELD, Director of Personalized Medicine, Office of In Vitro Diagnostic Device Evaluation and Safety, Center for Devices and Radiological Health, U.S. Food and Drug Administration

GARRY NEIL, Corporate Vice President, Corporate Office of Science and Technology (COSAT), Johnson & Johnson

ROBERT L. NUSSBAUM (IOM), Chief, Division of Medical Genetics, Department of Medicine & Institute of Human Genetics, University of California, San Francisco, School of Medicine

KIMBERLY J. POPOVITS, President and CEO, Genomic Health, Inc.

AIDAN POWER, Vice President and Global Head of Molecular Medicine, Pfizer, Inc.

RONALD PRZYGODZKI, Associate Director for Genomic Medicine Biomedical Laboratory Research and Development, Department of Veterans Affairs

AMELIE G. RAMIREZ (IOM), Dielmann Chair, Health Disparities and Community Outreach Research and Director, Institute for Health Promotion Research, University of Texas Health Science Center at San Antonio

LAURA LYMAN RODRIGUEZ, Senior Advisor to the Director for Research Policy, National Human Genome Research Institute

ALLEN D. ROSES (IOM), Jefferson-Pilot Professor of Neurobiology and Genetics, Professor of Medicine, Director, Deane Drug Discovery Institute, and Senior Scholar, Fuqua School of Business R. David Thomas Executive Training Center, Duke University

KEVIN A. SCHULMAN, Professor of Medicine & Business Administration; Director, Center for Clinical and Genetic Economics; and Associate Director, Duke Clinical Research Institute, Duke University Medical Center

SHARON TERRY, President and CEO, Genetic Alliance

STEVEN TEUTSCH, Representative, Secretary’s Advisory Committee on Genetics, Health and Society

MARTHA TURNER, Assistant Director, Center for Ethics and Human Rights, American Nurses Association

MICHAEL S. WATSON, Executive Director, American College of Medical Genetics

CATHERINE A. WICKLUND, Director, Graduate Program in Genetic Counseling; Immediate Past President, National Society of Genetic Counselors; and Assistant Professor, Department of Obstetrics and Gynecology, Northwestern University

Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×
Staff

LYLA HERNANDEZ, Staff Director (until March 2010)

ADAM BERGER, Project Director (from March 2010)

ERIN HAMMERS, Research Associate

ALEX REPACE, Senior Project Assistant

Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×

NATIONAL CANCER POLICY FORUM

HAROLD MOSES (IOM), (Chair), Director Emeritus, Vanderbilt-Ingram Cancer Center

FRED APPELBAUM, Director, Clinical Research Division, Fred Hutchinson Cancer Research Center

PETER BACH, Associate Attending Physician, Memorial Sloan-Kettering Cancer Center

EDWARD BENZ, JR., President, Dana Farber Cancer Institute

THOMAS BURISH, Past-Chair, American Cancer Society Board of Directors and Provost, Notre Dame University

MICHAELE CHAMBLEE CHRISTIAN, Former Director, Division of Cancer Treatment and Diagnosis, National Cancer Institute

ROBERT ERWIN, President, Marti Nelson Cancer Foundation

BETTY FERRELL, Research Scientist, City of Hope National Medical Center

JOSEPH FRAUMENI, JR., Director, Division of Cancer Epidemiology and Genetics, National Cancer Institute

PATRICIA GANZ, Professor of Health Services, School of Public Health and Professor of Medicine, David Geffen School of Medicine, University of California, Los Angeles

ROBERT GERMAN, Associate Director for Science, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention

ROY HERBST, Chief, Thoracic/Head & Neck Medical Oncology, M.D. Anderson Cancer Center

THOMAS KEAN, Executive Director, C-Change

JOHN MENDELSOHN, President, M.D. Anderson Cancer Center

JOHN NIEDERHUBER, Director, National Cancer Institute

DAVID PARKINSON, President and CEO, Oncology Research and Development, Nodality Inc.

SCOTT RAMSEY, Member, Cancer Prevention Program, Division of Public Health Science, Fred Hutchinson Cancer Research Center

JOHN WAGNER, Executive Director, Clinical Pharmacology, Merck & Company, Inc.

JANET WOODCOCK, Deputy Commissioner and Chief Medical Officer, U.S. Food and Drug Administration

Staff

ROGER HERDMAN, Director (until September 2009)

ADAM SCHIKEDANZ, Staff (until June 2009)

Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×

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Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×
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Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×
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Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×
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Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×
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Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×
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Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×
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Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×
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Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×
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Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×
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Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×
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Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×
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Suggested Citation:"Appendix H: Membership of Oversight Boards and Committees." Institute of Medicine and National Research Council. 2011. Direct-to-Consumer Genetic Testing: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/13021.
×
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Today, scores of companies, primarily in the United States and Europe, are offering whole genome scanning services directly to the public. The proliferation of these companies and the services they offer demonstrate a public appetite for this information and where the future of genetics may be headed; they also demonstrate the need for serious discussion about the regulatory environment, patient privacy, and other policy implications of direct-to-consumer (DTC) genetic testing.

Rapid advances in genetic research already have begun to transform clinical practice and our understanding of disease progression. Existing research has revealed a genetic basis or component for numerous diseases, including Parkinson's disease, Alzheimer's disease, diabetes, heart disease, and several forms of cancer. The availability of the human genome sequence and the HapMap, plummeting costs of high-throughput screening, and increasingly sophisticated computational analyses have led to an explosion of discoveries of linkages between patterns of genetic variation and disease susceptibility. While this research is by no means a straight path toward better public health, improved knowledge of the genetic linkages has the potential to change fundamentally the way health professionals and public health practitioners approach the prevention and treatment of disease. Realizing this potential will require greater sophistication in the interpretation of genetic tests, new training for physicians and other diagnosticians, and new approaches to communicating findings to the public. As this rapidly growing field matures, all of these questions require attention from a variety of perspectives.

To discuss some of the foregoing issues, several units of the National Academies held a workshop on August 31 and September 1, 2009, to bring together a still-developing community of professionals from a variety of relevant disciplines, to educate the public and policy-makers about this emerging field, and to identify issues for future study. The meeting featured several invited presentations and discussions on the many technical, legal, policy, and ethical questions that such DTC testing raises, including: (1) overview of the current state of knowledge and the future research trajectory; (2) shared genes and emerging issues in privacy; (3) the regulatory framework; and (4) education of the public and the medical community.

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