National Academies Press: OpenBook

Privacy Issues in Biomedical and Clinical Research (1998)

Chapter: Appendix B: Agenda

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Suggested Citation:"Appendix B: Agenda." National Research Council. 1998. Privacy Issues in Biomedical and Clinical Research. Washington, DC: The National Academies Press. doi: 10.17226/6326.
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Appendix B Agenda

7:30 am

Light Breakfast

8:00

Welcome

Ray White, Ph.D. University of Utah, Salt Lake City

8:15

Panel One: Public Concerns About the Use of Genetic Information

Vicky Whittemore, Ph.D. National Tuberous Sclerosis Association & Alliance Genetic Support Group

Paul Billings, M.D. Veterans Administration Hospital, Grand Prairie, Texas

8:45

Discussion

9:15

Coffee Break

9:30

Panel Two: Current Safeguards Used to Maintain Privacy in Genetic Research

Leo Whelan, JD Mayo Clinic - IRB Member

Sherri Bale, Ph.D. NIAMS, NIH - IRB Member for CDC

Pieter de Jong, Ph.D. Roswell Park Cancer Institute, Buffalo, NY

Suggested Citation:"Appendix B: Agenda." National Research Council. 1998. Privacy Issues in Biomedical and Clinical Research. Washington, DC: The National Academies Press. doi: 10.17226/6326.
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10:00

Discussion

10:30

Panel Three: Informed Consent and Research

Sue Rose, Ph.D. Department of Energy

Gene Carstea, Ph.D. Saint Mary's Medical Center, Grand Junction, CO

Barbara Handelin, Ph.D. Handelin Associates

11:00

Discussion

11:30

Working Lunch

12:15

Current Legislation Related to Genetic Research

Irene Stith-Coleman Congressional Research Service, Washington, D.C.

12:30

Discussion

12:45

Panel Four: Researcher Concerns About Restrictions on Genetic Research

Ray White, Ph.D. University of Utah, Salt Lake City

David Korn, M.D. Stanford University and Senior Vice President, AAMC

Eleanor Kerr SmithKline Beecham

1:15

Discussion

1:45

Wrap up

2:00

Adjourn

Suggested Citation:"Appendix B: Agenda." National Research Council. 1998. Privacy Issues in Biomedical and Clinical Research. Washington, DC: The National Academies Press. doi: 10.17226/6326.
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Page 33
Suggested Citation:"Appendix B: Agenda." National Research Council. 1998. Privacy Issues in Biomedical and Clinical Research. Washington, DC: The National Academies Press. doi: 10.17226/6326.
×
Page 34
Next: Appendix C: A Comment by Frederick R. Anderson »
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After discussions with the National Cancer Institute and the Department of Energy the Board on Biology of the National Research Council agreed to run a workshop under the auspices of its Forum on Biotechnology entitled "Privacy Issues in Biomedical and Clinical Research" on November 1, 1997. The organizers want to stress the forum was not intended to cover the full gauntlet of issues concerning Genomics and the Privacy of Medical Records. The emphasis of this forum was to look at pending legislation in Congress (Fall, 1997) and consider, if enacted as written, how this would affect genetic research. The broad language of this legislation written to protect the individual could inadvertently restrict research intended to help these same individuals. Scientific progress requires the sharing of information for the validation of results and the dissemination of gained knowledge to be effective. Other issues which were touched upon in this forum but not fully explored include; the trust of individuals involved in genetic studies in the manner their genetic information could be used, the practice of the generalized "linking" of particular ethnic groups with specific genetic traits, and the potential for positive and negative impact on the quality of life by having knowledge of one's genetic potential. These and other issues which have come upon us in the age of genomics require separate, focused efforts to explore their potential effect on society.

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