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National Institutes of Health


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


Twelfth Meeting

March 26 - 27, 2007

Adelphi, 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.

F I N A L    A G E N D A

(Click here to view or download Agenda in Adobe PDF format)

Monday, March 26, 2007


8:00 a.m. – 8:30 a.m.                 Opening Remarks (Real Video)

Reed V. Tuckson, M.D.

                                                SACGHS Chair


Update from the Office of the Secretary


8:30 a.m. – 9:00 a.m.                 Update on the Secretary’s Personalized Health Care Initiative (Real Video)

                                                Sheila Walcoff, J.D.

                                                Counselor for Science and Public Health

                                                Office of the Secretary


8:50 – 9:00                    Q & A


9:00 a.m. – 10:00 a.m.               Briefing on the Activities of the Office of the National Coordinator for Health Information Technology and the American Health Information Community (Real Video)


9:00 – 9:20                    Robert M. Kolodner, M.D.

Interim National Coordinator

Office of the National Coordinator for Health Information Technology


9:20 – 9:40                    Jodi G. Daniel, J.D., M.P.H.


Office of Policy and Research

Office of the National Coordinator for Health Information Technology


9:40 – 10:00                  Q & A


10:00 a.m. – 10:15 a.m.              BREAK


Session on Genetic Discrimination


10:15 a.m. – 11:45 a.m.              Briefing on the Status of Genetic Information Nondiscrimination Act (Real Video)


                                                Craig Burton (by phone)

                                                Deputy Assistant Secretary for Legislation

Office of the Assistant Secretary for Legislation


                                    Keith Flanagan (by phone)

Minority Health Counsel

Senate Committee on Health, Education, Labor and Pensions


Brian Petersen (by phone)

Deputy Legislative Director

Office of Representative Judy Biggert


                                                Committee Discussion


Oversight Discussion                Oversight Discussion (not on Agenda)  (Real Video)



Public Comments


11:45 a.m. – 12:15 p.m.              Public Comments  (Real Video)



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


Session on Oversight of Genetic Testing


1:15 p.m. – 1:30 p.m.                 Framing the Session  (Real Video)

                  Dr. Tuckson and Andrea Ferreira-Gonzalez, Ph.D. Task Force Chair
The Oversight System  

1:30 p.m. - 2:25 p.m.                  Primer on the Oversight of Genetic Testing (by video conference)  (Real Video)

Wylie Burke, M.D., Ph.D.
Department of Medical History and Ethics
University of Washington School of Medicine

2:15 – 2:25                    Q & A


The Role of the States   

2:25 p.m. – 2:55 p.m.                 New York State’s Clinical Laboratory Evaluation Program   (Real Video)

                                                Ann M. Willey, Ph.D., J.D.
                                                Director of Laboratory Policy and Planning
                                               Wadsworth Center New York State Department of Health


2:45 – 2:55                    Q & A


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


Session on Oversight of Genetic Testing (continued)


The Role of the Private Sector


3:10 p.m. – 3:40 p.m.         Accreditation of Genetic Testing Laboratories  (Real Video)

                                                Gail Habegger Vance, M.D., FCAP
College of American Pathologists


            3:30 – 3:40                    Q & A


3:40 p.m. – 4:10 p.m.                 Clinical Laboratory Standard Setting   (Real Video)

Carolyn Sue Richards, Ph.D.

Professor of Molecular & Medical Genetics
Director of the DNA Diagnostic Laboratory
Oregon Health and Science University


            4:00 – 4:10                    Q & A


4:10 p.m. – 4:40 p.m.         Development of Clinical Practice Guidelines (by video conference) (Real Video)

                                                Alfred Berg, M.D., M.P.H.

Professor and Chair

Department of Family Medicine

University of Washington


            4:30 – 4:40                    Q & A


4:40 p.m. – 5:30 p.m.                 Committee Discussion  (Real Video)