Direct-to-Consumer Genetic Testing Summary of a Workshop (2011) / Chapter Skim
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Appendix F: Workshop Agenda
Appendix F: Workshop Agenda
Pages 71-78
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From page 71... ...
Bierer, Professor of Medicine, Harvard Medical School and Senior Vice President, Research, Brigham and Women's Hospital August 1, 2009 7:30 Breakfast 8:00-10:40 Session 1: Overview of Research on DTC Genetic Testing and Its Trajectory Direct-to-consumer genetic testing represents a $730 million global market, with projected growth of 20 per cent annually. While many direct-to-consumer genetic tests assess risk for illnesses with strong genetic heri tability and raise concerns over adequate counseling and appropriate outlets for such information, still other genetic tests to guide risk management for diseases with much smaller genetic components, or no clear genetic basis at all, have rapidly emerged and present new dilemmas for consumers and health care providers alike.
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From page 72... ...
What will the future market look like? 8:00 Introduction to the Scope of the Workshop David Korn, Vice Provost for Research, Harvard University 8:20 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 8:40 Discussion 9:00 Direct-to-Consumer Genetic Testing: History and Sci entific Foundation Muin Khoury, Director, Office of Public Health Genom ics, Centers for Disease Control and Prevention 9:20 Discussion 9:40 Evolution of Direct-to-Consumer Genetic Testing: Pres ent and Future Markets
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From page 73... ...
predating major advances in genetics and the FDA only able to regulate genetic test kits, the vast majority of lab-derived genetic test ing operates with sparse regulatory oversight relative to other laboratory tests of comparable capacity to explain and predict health and disease. In addition, no claims by direct-to-consumer genetic testing companies have been challenged by the FTC to date.
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and U.K. Andrea Ferreira-Gonzalez, Professor of Pathology, Virginia Commonwealth University and Director, The Molecular Diagnostics Laboratory, Virginia Common wealth University Health System Timothy Aitman, Professor of Clinical and Molecular Genetics, Division of Clinical Sciences, Imperial College London 11:20 Discussion 11:55 Monitoring direct-to-consumer genetic testing Gregory Kutz, Managing Director, Forensic Audits and Special Investigations, Government Accountability Office Sandra Soo-Jin Lee, Senior Research Scholar, Stanford Center for Biomedical Ethics 12:30 Discussion 1:00 Lunch 1:45-3:20 Session 3: Shared Genes and Emerging Issues in Privacy Genetic information has implications for the health and well-being of others beyond the individual whose DNA was sequenced, simultaneously suggesting the need to protect the sequenced individual from unethical treat ment based on undesirable sequence and the potential responsibility to inform those (blood relatives, perhaps others)
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From page 75... ...
Social networks based on direct-to-consumer genetic testing results. 1:40 Existing Structures for Privacy and Nondiscrimination Protections: Beyond the Genetic Information Nondis crimination Act Susannah Baruch, Policy Director, Generations Ahead and Policy Analyst, Genetics and Public Policy Center, Johns Hopkins University 2:00 Discussion 2:20 Genetic Identity and Community Scott Woodward, Director, Sorenson Molecular Geneal ogy Foundation 2:40 Discussion 3:00 Break 3:20-4:30 Session 4: DTC Genetic Testing Companies and Research Direct-to-consumer genetic testing companies have already taken steps to use the rich data their customers provide them in research to improve their products,
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3:20 Direct-to-Consumer Genetic Testing Companies as Research Entities: Disclosure, Intellectual Property, and Shared Advances Elissa Levin, Director, Genetic Counseling Program, Navigenics, Inc. 3:40 Discussion 4:30 Adjourn Dinner September 1, 2009 7:30 Breakfast
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9:00 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 9:20 Discussion
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APPENDIX F 9:40 Knowledge of DTC Genetic Testing Among the Public and Health Professionals Public Understanding Katrina Goddard, Senior Investigator, Kaiser Perman ente Center for Health Research 10:00 Understanding Among Health Professionals Joseph McInerney, Executive Director, National Coali tion for Health Professional Education in Genetics 10:20 Discussion 10:40 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 11:00 Discussion 11:20 The Impact of Direct-to-Consumer Genetic Testing on Public Health Harvey Fineberg, President, Institute of Medicine 11:40 Summary Discussion 12:00 Lunch / Adjourn
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