SACGHS March 12, 2009 - Presentation Materials
Eighteenth Meeting - Day One
Washington, DC

  Opening Remarks  
  Steven Teutsch, M.D., M.P.H.
SACGHS Chair
 
  Webcast   
 
  Update from Centers for Medicare and Medicaid Services (CMS)  
  Barry Straube
Chief Medical Officer for CMS and Director of CMS' Office of Clinical Standards & Quality
 
  Slides  Webcast   
 
  Updates from SACGHS Ex Officios  
  Webcast   
 
  Public Comments  
  Webcast   
 

Session on Consumer-Initiated Use of Genomic Services  
  Session Overview and Purpose  
  Sylvia Au, M.S., CGC
SACGHS Member
 
  Slides  Webcast   
 
  Outcomes of an NIH-CDC Workshop on Personal Genomics (Dec. 2008)  
  William (Greg) Feero, M.D., Ph.D.
Senior Advisor to the Director for Genomic Medicine
National Human Genome Research Institute
National Institutes of Health
 
  Slides  Webcast   
 
  Genomic Attitudes and Trends  
  Christy White
Cogent Research, LLC
 
  Slides  Webcast   
 
  NIH Website for Consumer-Level Information about DTC Genomic Services  
  Larry Thompson
Chief, Communications Branch
National Human Genome Research Institute
 
  Webcast   
 
  Plans for the National Academies DTC Workshop  
  Lyla Hernandez, M.P.H.
Senior Program Officer
Institute of Medicine, National Academies
 
  Slides  Webcast   
 
  Standards for Analytical Validity and Clinical Validity of Genomic Scans  
  Amy Miller, Ph.D.
Public Policy Director
Personalized Medicine Coalition
 
  Slides  Webcast   
 
  New York State Laboratory Requirements Relevant to Genomic Services Companies  
  Anne Willey, Ph.D., J.D.
Director, Office of Laboratory Policy and Planning
Wadsworth Center
New York State Department of Health
 
  Slides  Webcast   
 
  Committee Discussion of Issues and Next Steps  
  Webcast   
 
  Proposal for Short-Term Action  
  Sylvia Au, M.S., CGC  
  Slides  Webcast   
 
  Committee Discussion  
  Webcast   
 

Session on Informed Consent, Privacy, and Discrimination Issues Related to Genomic Data Sharing  
  Session Purpose and Overview  
  Kevin FitzGerald, S.J., Ph.D., Ph.D.
SACGHS Member
 
  Webcast   
 
  Institute of Medicine Report: Beyond the HIPAA Privacy Rule  
  Larry Gostin, J.D.
Chair, IOM Committee on Health Research and the Privacy of Health Information
 
  Slides  Webcast   
 
  Informed Consent Issues of Concern to the Advisory Committee for Heritable Disorders in Newborns and Children (ACHDNC)  
  R. Rodney Howell, M.D.
Chair, ACHDNC
 
  Slides  Webcast   
 
  Q&A  
  Webcast   
 
  Committee Discussion of Issues and Next Steps for Issues Related to Informed Consent on Genomic Data Sharing  
  Webcast   
 

Session on the Genetics Education and Training Task Force  
  Update on Education and Training Task Force Data Gathering  
  Barbara Burns McGrath, R.N., Ph.D.
SACGHS Member
 
  Slides  Webcast   
 
  Closing Remarks - Dr. Teutsch  
  Webcast   
 


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