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Audio and Presentations: DIRECT-TO-CONSUMER GENETIC TESTING: A CROSS-ACADEMIES WORKSHOP

This website contains unedited verbatim presentations made by workshop participants and is not an official report of the National Academies.  Opinions and statements included in this material are solely those of the individual authors.  They have not been verified as accurate, nor do they necessarily represent the views of other workshop participants, the planning committee, or the National Academies.

Moderators:

Frederick R. Anderson, Jr., Partner, McKenna, Long, & Aldridge LLP
Barbara E. Bierer, Professor of Medicine, Harvard Medical School and Senior Vice President, Research, Brigham and Women’s 
Hospital

August 31, 2009

Session 1: Overview of Research on DTC Genetic Testing and Its Trajectory

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Introduction to the Scope of the Workshop

David Korn, Vice Provost for Research, Harvard University

Drivers of Innovation: The Human Genome Project, Microarrays, the HapMap and the $1,000 Genome

Alan Guttmacher, Acting Director, National Human Genome Research Institute, National Institutes of Health

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Direct-to-Consumer Genetic Testing: History and Scientific Foundation

Muin Khoury, Director, Office of Public Health Genomics, Centers for Disease Control and Prevention

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Evolution of Direct-to-Consumer Genetic Testing: Present and Future Markets

K. David Becker, Chief Scientific Officer, Pathway Genomics Corporation

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Session 2: The Regulatory Framework

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Existing Oversight of Genetic Testing in the U.S. and U.K.

Andrea Ferreira-Gonzalez, Professor of Pathology, Virginia Commonwealth University and Director, The Molecular Diagnostics Laboratory, Virginia Commonwealth University Health System 

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Timothy Aitman, Professor of Clinical and Molecular Genetics, Division of Clinical Sciences, Imperial College London

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Additional information on the United Kingdom and Direct-to-Consumer Genetic Testing may be found here.

Monitoring Direct-to-Consumer Genetic Testing

Gregory Kutz, Managing Director, Forensic Audits and Special Investigations, Government Accountability Office

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Sandra Soo-Jin Lee, Senior Research Scholar, Stanford Center for Biomedical Ethics

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Session 3: Shared Genes and Emerging Issues in Privacy

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Existing Structures for Privacy and Nondiscrimination Protections: Beyond the Genetic Information Nondiscrimination Act

Susannah Baruch, Policy Director, Generations Ahead

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Genetic Identity and Community

Scott Woodward, Director, Sorenson Molecular Genealogy Foundation

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Session 4: DTC Genetic Testing Companies and Research

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Direct-to-Consumer Genetic Testing Companies as Research Entities: Disclosure, Intellectual Property, and Shared Advances

Elissa Levin, Director, Genetic Counseling Program, Navigenics, Inc.

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September 1, 2009

The FDA and the Regulation of Direct-to-Consumer Genetic Testing

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Courtney Harper, Acting Director of the Division of Chemistry and Toxicology Devices, Office of In Vitro Diagnostic Device Evaluation and Safety, Center for Devices and Radiological Health, U.S. Food and Drug Administration

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Session 5: The Impact of DTC Genetic Tests on the Medical System

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What Are the Costs and Benefits to the Health Care System?

Kathryn Phillips, Professor of Health Economics and Health Services Research, University of California, San Francisco

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Knowledge of DTC Genetic Testing Among the Public and Health Professionals

Public Understanding

Katrina Goddard, Senior Investigator, Kaiser Permanente Center for Health Research

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Understanding Among Health Professionals

Joseph McInerney, Executive Director, National Coalition for Health Professions Education in Genetics

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Cooperation or Competition – How Do Health Care and DTC Genetic Testing Coexist?

Patricia Ganz, Professor of Health Services, School of Public Health and Professor of Medicine, David Geffen School of Medicine, University of California, Los Angeles

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The Impact of Direct-to-Consumer Genetic Testing on Public Health

Harvey Fineberg, President, Institute of Medicine