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

Eighteenth Meeting
March 12-13, 2009
Washington, D.C.

Morning Session  (Real Video)

Afternoon Session Before Break  (Real Video)

Afternoon Session After Break  (Real Video)

Caption Text (HTML)
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.


Thursday, March 12, 2009


10:00 a.m. – 10:15 a.m.              Opening Remarks (Real Video)

                                                Steven Teutsch, M.D., M.P.H.



10:15 a.m. – 11:00 a.m.              Update from Centers for Medicare and Medicaid Services (CMS)  (Real Video)

Barry Straube, Chief Medical Officer for CMS and Director of CMS’ Office of Clinical Standards & Quality


11:00 a.m. – 12:00 p.m.              Updates from SACGHS Ex Officios (Real Video)


12:00 p.m. – 12:45 p.m.               LUNCH


12:45 p.m. – 1:00 p.m.                 Public Comments (Real Video)


Session on Consumer-Initiated Use of Genomic Services


1:00 p.m. – 1:05 p.m.              Session Overview and Purpose (Real Video)

                                    Sylvia Au, M.S., CGC



1:05 p.m. – 1:15 p.m.             Outcomes of an NIH-CDC Workshop on Personal Genomics (Dec. 2008) (Real Video)

                                    William (Greg) Feero, M.D., Ph.D.

Senior Advisor to the Director for Genomic Medicine

National Human Genome Research Institute

National Institutes of Health


1:15 p.m. – 1:25 p.m.              Genomic Attitudes and Trends (Real Video)

                                    Christy White

Cogent Research, LLC


1:25 p.m. – 1:35 p.m.             NIH Website for Consumer-Level Information about DTC Genomic Services (Real Video)

                                    Larry Thompson

Chief, Communications Branch

National Human Genome Research Institute


1:35 p.m. – 1:45 p.m.             Plans for the National Academies DTC Workshop (Real Video)

Lyla Hernandez, M.P.H.

Senior Program Officer

Institute of Medicine, National Academies


1:45 p.m. – 1:55 p.m.             Standards for Analytical Validity and Clinical Validity of Genomic Scans (Real Video)

                                    Amy Miller, Ph.D.

Public Policy Director

Personalized Medicine Coalition


1:55 p.m. – 2:05 p.m.              New York State Laboratory Requirements Relevant to Genomic Services Companies
(Real Video)

                                    Anne Willey, Ph.D., J.D.

Director, Office of Laboratory Policy and Planning

Wadsworth Center

New York State Department of Health




2:20 p.m. – 3:00 p.m.              Committee Discussion of Issues and Next Steps  (Real Video)


2:20 p.m. – 2:35 p.m.              Proposal for Short-Term Action (Real Video)

                                    Sylvia Au, M.S., CGC


2:35 p.m. – 3:00 p.m.              Committee Discussion (Real Video)



3:00 p.m. – 3:15 p.m.              BREAK


Session on Informed Consent, Privacy, and Discrimination Issues Related to Genomic Data Sharing


3:15 p.m. – 3:20 p.m.              Session Purpose and Overview (Real Video)

                                                Kevin FitzGerald, S.J., Ph.D., Ph.D.



3:20 p.m. – 3:50 p.m.              Institute of Medicine Report: Beyond the HIPAA Privacy Rule (Real Video)

                                    Larry Gostin, J.D.

Chair, IOM Committee on Health Research and the Privacy of Health Information


3:50 – 3:55                  Q&A


3:55 p.m. – 4:15 p.m.              Informed Consent Issues of Concern to the Advisory Committee for Heritable Disorders in Newborns and Children (ACHDNC) (Real Video)

R. Rodney Howell, M.D.



4:15 – 4:20                  Q&A (Real Video)


4:20 p.m. – 4:45 p.m.              Committee Discussion of Issues and Next Steps for Issues Related to Informed Consent on Genomic Data Sharing  (Real Video)


Session on the Genetics Education and Training Task Force


4:45 p.m. – 5:00 p.m.              Update on Education and Training Task Force Data Gathering (Real Video)

                                                Barbara Burns McGrath, R.N., Ph.D.



5:00 p.m. – 5:30 p.m.              Committee Discussion


5:30 p.m. – 5:35 p.m.              Closing Remarks – Dr. Teutsch (Real Video)