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



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OCR for page 33
--> 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

OCR for page 33
--> 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