Wednesday, June 16, 2010

Morning Session Before Break  (Real Video)

Morning Session After Break  (Real Video)

Afternoon Session After Lunch  (Real Video)

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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 transcript will be available on the NIH web site in due course.

AGENDA

Wednesday, June 16, 2010

8:00 a.m. – 8:15 a.m. Opening Remarks (Real Video)
Dr. Teutsch
SACGHS Chair

Liz Mansfield- (update from FDA) (Real Video)

Genomic Data Sharing

8:15 a.m. – 10:00 a.m. Deliberating Next Steps Related to Genomic Data Sharing

8:15 a.m. – 8:35 a.m. Findings from the Literature and Selected Stakeholder Interviews (Real Video)
Charmaine Royal, Ph.D.
SACGHS Member

8:35 a.m. – 10:00 a.m. Committee Discussion of Next Steps

10:00 a.m. – 10:15 a.m. BREAK

Discussion (Real Video)

Public Comment Session

10:15 a.m. – 10:45 a.m. Public Comments (none)

Carrier Screening

10:45 a.m. – 11:45 a.m. Issues and Concerns Related to Carrier Screening

10:45 a.m. – 11:05 a.m. An Option for Addressing Issues Related to Carrier Screening (Real Video)
R. Rodney Howell, M.D.
Chair, Secretary’s Advisory Committee on Heritable Diseases in Newborns and Children (ACHDNC)

11:05 a.m. – 11:45 a.m. Committee Discussion (Real Video)

11:45 a.m. – 12:45 p.m. LUNCH

Retention and Use of Residual Dried Blood Spot Specimens after Newborn Screening

12:45 p.m. – 2:30 p.m. ACHDNC Draft Briefing Paper on the Retention and Use of Residual Dried Blood Spot Specimens (Real Video)

12:45 p.m. – 1:05 p.m. Overview of the ACHDNC Draft Briefing Paper (Real Video)
R. Rodney Howell, M.D.
Chair, ACHDNC4

1:05 p.m. – 1:25 p.m. Findings from the Institute of Medicine Workshop on Challenges and Opportunities in Using Newborn Screening Samples for Translational Research (Real Video)
Adam Berger, Ph.D.
Project Director
Board on Health Sciences Policy, Institute of Medicine

1:25 p.m. – 1:45 p.m. SACGHS Comments on ACHDNC Draft Briefing Paper (Real Video)
Janice Bach, M.S.
SACGHS Member

1:45 p.m. – 2:30 p.m. Discussion (Real Video)

2:30 p.m. – 2:45 p.m. Concluding Remarks – Dr. Teutsch (Real Video)

ADJOURN