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

Chapter: Appendix G: Workshop Participants

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Suggested Citation:"Appendix G: Workshop Participants." 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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Appendix G
Workshop Participants

Direct-to-Consumer Genetic Testing: A Cross-Academies Workshop

The National Academies

Washington, DC

August 31-September 1, 2009


Tanya Agurs-Collins, National Institutes of Health National Cancer Institute

Vincent Allen, Jr., National Institutes of Health National Human Genome Research Institute

Richard Apostol

Neeraj Arora, National Institutes of Health National Cancer Institute

Suresh Arya, National Institutes of Health

Ronald Bailey, Reason Magazine

Judith Benkendorf, American College of Medical Genetics

Barbara Bernhardt, Penn Center for the Integration of Genetic Health Care Technologies

Barbara Biesecker, National Institutes of Health

Laura Bishop, Kennedy Institute of Ethics, Georgetown University

Juli Bollinger, Genetics and Public Policy Center

Vence Bonham, National Institutes of Health National Human Genome Research Institute

Malorye Branca, Nature Biotechnology

Stan Brull, Center for Bioethics, University of Pennsylvania

Kee Chan, Boston University

Ashadeep Chandrareddy, Tufts Medical Center

Ralph Coates, Centers for Disease Control

Jennifer Costello, U.S. Government Accountability Office

Arkendra De, U.S. Food and Drug Administration

Maria Della Rocca, Genetic and Rare Diseases Information Center

Tania Diaz

Suggested Citation:"Appendix G: Workshop Participants." 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.
×

Jennifer Dolan, University of Pennsylvania Health System

Britt Erickson, Chemical & Engineering News

Cathy Fomous, National Institutes of Health Office of Biotechnology Activities

Keolu Fox, National Institutes of Health

Santhi Ganesh, National Institutes of Health

Susan Hahn, University of Miami

Patrick Hanaway, Genova Diagnostics

Karen Hanson, U.S. Food and Drug Administration

Sarah Harding, National Institutes of Health National Human Genome Research Institute

Emily Harris, National Institutes of Health National Institute of Dental and Craniofacial Research

Erin Heath, American Association for the Advancement of Science

Laura Hercher, Sarah Lawrence College Joan H. Marks Human Genetics Program

Christine Hodakievic, U.S. Government Accountability Office

Gillian Hooker, Georgetown University / Lombardi Comprehensive Cancer Center

Sandra Howard, U.S. Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation

Jordanna Joaquina, AccessDNA

Sarah Kalia, National Institutes of Health Graduate Partnership Program

Pei Koay, Center for Contemporary History and Policy, Chemical Heritage Foundation

Kenneth Kornman, Interleukin Genetics

Vinayak Kottoor, Johns Hopkins University

Alanna Kulchak, Rahm Kaiser Permanente

Marcie Lambrix, Case Western Reserve University

Jane Lee, National Institutes of Health / Johns Hopkins University

Jennifer Leib, HealthFutures, LLC

Marcella McSorley, Global Clinical Solutions, Inc.

Radha Menon, U.S. Food and Drug Administration

Richard Merrill, University of Virginia

Isis Mikhail, National Institutes of Health National Cancer Institute

Francisco Murillo, U.S. Food and Drug Administration

Melanie Myers, University of Cincinnati and Cincinnati Children’s Hospital Medical Center

Suggested Citation:"Appendix G: Workshop Participants." 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.
×

Vivian Ota Wang, National Institutes of Health National Nanotechnology Coordination Office

Belen Pappa

Paul Partha, Interleukin Genetics

Andre Pilon, National Institutes of Health National Human Genome Research Institute

Susan Poland, Kennedy Institute of Ethics, Georgetown University

Tabitha Powledge, National Association of Science Writers

Andrew Pratt, Center for American Progress

Edward Ramos, National Institutes of Health

Erin Ramos, National Institutes of Health National Human Genome Research Institute

John Richardson, National Society of Genetic Counselors

Roslyn Rodriguez, University of the Philippines, Philippine General Hospital

Michael Rugnetta, Center for American Progress

Leah Sansbury, National Institutes of Health National Cancer Institute

Amanda Sarata, Congressional Research Service

Sheri Schully, National Institutes of Health National Cancer Institute

Joan Scott, Genetics and Public Policy Center

Mona Shah, American Cancer Society Cancer Action Network

Fay Shamanski, College of American Pathologists

Celia Sharp

Artemis Simopoulos, The Center for Genetics Nutrition and Health

Amanda Singleton, National Institutes of Health

Jennifer Smith, FDA Week

Pothur Srinivas, National Institutes of Health

Rebecca Sutphen, Moffitt Cancer Center at the University of South Florida

Melanie Swan, MS Futures Group

Zivana Tezak, Office of In Vitro Diagnostic Device Evaluation and Safety, Center for Devices and Radiological Health, U.S. Food and Drug Administration

Christopher Wade, National Institutes of Health National Human Genome Research Institute

Lan-Hsiang Wang, National Institutes of Health National Heart, Lung and Blood Institute

Kay Wanke, National Institutes of Health

Edward Winstead, National Institutes of Health National Cancer Institute

Emily Wold, U.S. Government Accountability Office

Kristi Zonno, Genetic Alliance

Suggested Citation:"Appendix G: Workshop Participants." 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 G: Workshop Participants." 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.
×
Page 79
Suggested Citation:"Appendix G: Workshop Participants." 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.
×
Page 80
Suggested Citation:"Appendix G: Workshop Participants." 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.
×
Page 81
Suggested Citation:"Appendix G: Workshop Participants." 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.
×
Page 82
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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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