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National Institutes of Health

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

Eleventh Meeting
November 13 & 14, 2006
Adelphi, MD


Tuesday, November, 14, 2006

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 - After Lunch  (Real Video)


8:30 a.m. – 8:40 a.m.                 Opening Remarks  (Real Video)

Dr. Tuckson


Session on Large Population Studies  (Real Video)


8:40 a.m. – 9:10 a.m.                  Presentation of Public Comments and Proposed Modifications to Draft Report on the Policy Issues Associated with Undertaking a Large U.S. Population Cohort Project on Genes, Environment and Disease

Huntington F. Willard, Ph.D.

Chair, SACGHS Task Force on Large Population Studies                                


9:10 a.m. – 11:00 a.m.                Committee Discussion of Public Comments and Revised Report


11:00 a.m. – 11:15 a.m.              BREAK


11:15 a.m. – 12:30 p.m.              Committee DiscussionofPublic Comments and Revised Report (cont.)


12:30 p.m. – 1:15 p.m.               LUNCH


1:15 p.m. – 2:25 p.m.                 Committee Discussion of Public Comments and Revised Report (cont.)


Public Comments  (Real Video)


2:25 p.m. – 2:55 p.m.                 Public Comments


2:55 p.m. – 3:10 p.m.                 BREAK


Federal Developments and Updates  (Real Video)


3:10 p.m. – 4:15 p.m.                 NIH Proposed Policy on Genome Wide Association Studies (GWAS) (Real Video)

Susan Shurin, M.D.

Deputy Director, National Heart, Lung and Blood Institute

National Institutes of Health


Update on Evaluation of Genomic Applications in Practice and Prevention (EGAPP) Activities (Real Video)

Linda Bradley, Ph.D.

Geneticist, National Office of Public Health Genomics

Centers for Disease Control and Prevention


Update on Collaboration, Education and Test Translation (CETT) Program (Real Video)

Steven C. Groft, Pharm. D.

Director, Office of Rare Diseases

National Institutes of Health

Session on Genetic Discrimination  (Real Video)


4:15 p.m. – 4:35 p.m.                 Update on Genetic Discrimination 

Sharon F. Terry

President and CEO, Genetic Alliance

Chair, Coalition for Genetic Fairness 


4:35 p.m. – 5:00 p.m.                 Next Steps and Concluding Remarks  (Real Video)

                                                Dr. Tuckson