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National Institutes of Health

Secretary’s Advisory Committee on Genetics, Health, and Society

Seventh Meeting

June 15, 2005

North Bethesda , MD

NOTE: The caption text is a record of the close captioning offered to support the video. It is not a totally accurate, verbatim transcript of the meeting. It is offered here for interest and support of the video. A correct transcript will be available on the NIH web site in due course.

Morning Session before Break   (Real Video)

Morning Session after Break  (Real Video)

Afternoon Session before Break  (Real Video)

Afternoon Session after Break  (Real Video)

Note: Upon request of the committee, the lighting is low in the room, and this affects the quality of the video, we have no control over this.


(To view the Agenda in PDF format, click here.)

Wednesday, June 15, 2005

8:30 a.m. - 8:45 a.m. Opening Remarks (Real Video)

Reed Tuckson, M.D.

8:45 a.m. – 10:15 a.m. Session on Genetic Discrimination

8:45 – 9:00 Update on SACGHS Efforts (Real Video)
Agnes Masny, R.N., M.P.H., M.S.
Chair, SACGHS Genetic Discrimination Task Force

9:00 – 9:30 Overview of Legal Analysis (Real Video)
Peter S. Gray, J.D.
Equal Employment Opportunity Commission

9:30 – 10:00 Congressional Update (Real Video)
Ms. Jaimie Vickery
Legislative Assistant
Office of the Honorable Judy Biggert
U.S. House of Representatives

10:00 – 10:15 Full Committee Discussion (Real Video)
Facilitators: Ms. Masny and Dr. Tuckson

10:15 a.m. – 10:30 a.m. BREAK

10:30 a.m. – 11:30 a.m. Direct-to-Consumer Marketing of Genetic Tests

 10:30 – 10:45 Secretary Leavitt’s Response to SACGHS Letter and Relevant Agency Activities   (Real Video)

Dr. Tuckson and Relevant Ex Officios

10:45 – 11:15 FDA’s Role in the Oversight of Direct-to-Consumer Marketing of Genetics Tests   (Real Video)

Deborah Wolf, J.D.
Office of Compliance
Center for Devices and Radiological Health, FDA

11:15 – 11:30 Full Committee Discussion (Real Video)

11:30 a.m. – 12:00 p.m. Update on SACGHS’ Work on the Large Population Studies Issue (Real Video)

Facilitator: Hunt Willard, Ph.D.
Chair, SACGHS Large Population Studies Task Force

12:00 p.m. – 1:00 p.m. LUNCH

1:00 p.m. – 1:30 p.m. Public Comments (Real Video)

1:30 p.m. – 5:30 p.m. Coverage and Reimbursement of Genetic Tests and Services

1:30 – 2:00 Overview of Public Comments on SACGHS’ Draft Report  (Real Video)
Cynthia Berry, J.D.
Chair, SACGHS Coverage and Reimbursement Task Force

2:00 – 3:45 Full Committee Discussion of Draft Report  (Real Video)
Facilitator: Ms. Berry

3:45 – 4:00 BREAK

4:00 – 5:30 Finalization of Draft Report and Recommendations  (Real Video)
Facilitator: Ms. Berry