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Direct-To-Consumer Marketing of Genetic Technologies
  This page provides information concerning the Direct-To-Consumer Marketing of Genetic Technologies study topic.  
  A list of reports and correspondence related to this topic are provided below. This page also provides a summary of the sessions concerning this topic that have been held at SACGHS meetings so you can review the transcripts, presentation materials, and webcasts for the sessions that dealt with the topic.  
 
Reports and Correspondence  
   Direct to Consumer Marketing Consumer Alert by the Federal Trade Commission  (July, 2006)  
   Secretary Leavitt's Response to SACGHS
(June 16, 2006)
 
   SACGHS Letter to the Secretary of Health and Human Services
(February 8, 2006)
 
   Secretary Leavitt's Response to SACGHS
(March 3, 2005)
 
   SACGHS Letter to the Secretary of Health and Human Services
(December 8, 2004)
 
 
SACGHS Meetings  
 

Friday, October 9, 2009 - Revised Draft Paper on Direct-to-Consumer  
  Presentation of Revised Draft Paper on Direct-to-Consumer Genetic Testing  
  Sylvia Au, M.S., CGC, SACGHS Member  
  Slides   
  Committee Discussion and Decisions Regarding Revised Draft Paper on DTC Genetic Testing  
  Transcript   

Friday, June 12, 2009 - Presentation of Draft Report on Direct-to-Consumer Genetic Testing  
  Presentation of Draft Report on Direct-to-Consumer Genetic Testing  
  Sylvia Au, M.S., CGC, SACGHS Member  
  Slides   
  Committee Discussion and Decisions Regarding Draft Report on DTC Genetic Testing  
  Transcript   

Thursday, March 12, 2009 - Session on Consumer-Initiated Use of Genomic Services  
  Session Overview and Purpose  
  Sylvia Au, M.S., CGC, SACGHS Member  
  Slides   
  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, NHGRI/NIH  
  Slides   
  Genomic Attitudes and Trends  
  Christy White, Cogent Research, LLC  
  Slides   
  NIH Website for Consumer-Level Information about DTC Genomic Services  
  Larry Thompson, Chief, Communications Branch, NHGRI  
  Plans for the National Academies DTC Workshop  
  Lyla Hernandez, M.P.H., Senior Program Officer, Institute of Medicine, National Academies  
  Slides   
  Standards for Analytical Validity and Clinical Validity of Genomic Scans  
  Amy Miller, Ph.D., Public Policy Director, Personalized Medicine Coalition  
  Slides   
  New York State Laboratory Requirements Relevant to Genomic Services Companies  
  Anne Willey, Ph.D., J.D., Director, Office of Laboratory Policy and Planning, New York State Department of Health  
  Slides   
  Committee Discussion of Issues and Next Steps  
  Proposal for Short-Term Action  
  Sylvia Au  
  Committee Discussion  
  Transcript   

July 8 2008 - Session on Personal Genomic Services  
  Overview of Session and Introductions  
  Sylvia Mann Au, M.S., CGC .  
  Webcast  Transcript   
  The Science of Genomic Associations: Current Status and Future Directions  
  Teri Manolio, M.D., Ph.D.
Director, Office of Population Genomics
Senior Advisor to the Director, NHGRI for Population Genomics
 
  Slides  Webcast  Transcript   
  Q & A  
  Webcast   
  Personal Genomic Information: A Consumer's Perspective  
  David Ewing Duncan
Director, Center for Life Science Policy
University of California at Berkeley
 
  Slides  Webcast  Transcript   
  Q & A  
  Webcast  Transcript   
  Personal Genome Service Providers  
  Dietrich Stephan, Ph.D.
Navigenics
 
  Slides  Webcast  Transcript   
  Linda Avey
Co-Founder
23andMe
 
  Slides  Webcast  Transcript   
  Jeffrey Gulcher, Ph.D.
DeCodeMe
 
  Webcast  Transcript   
  George Church, Ph.D.
Personal Genome Project
Knome, Inc.
Director, Center for Computational Genetics
Harvard Medical School
 
  Slides  Webcast  Transcript   
  Discussion with Secretary Leavitt  
  Webcast  Transcript   
  Ryan Phelan
Founder and CEO
DNA Direct
 
  Slides  Webcast  Transcript   
  Public Policy Issues Surrounding Personalized Genome Services  
  Kathy Hudson, Ph.D.
Director
Genetics and Public Policy Center
 
  Slides  Webcast  Transcript   
  Q & A  
  Webcast  Transcript   
  Committee Discussion of Personal Genome Services  
  Webcast  Transcript   
  Continued Discussion of Plan for Next Steps in Priority Setting Process  
  Dr. Wise  
  Webcast  Transcript   

July 10, 2007 - Session on Direct-to-Consumer Marketing of Genetic Tests  
  Public Health Surveillance of Awareness and Use of Direct to Consumer Genetic Testing  
  Katrina A.B. Goddard, Ph.D.
Fellow, National Office of Public Health Genomics, CDC
Associate Professor, Epidemiology & Biostatistics
Case Western Reserve University
 
  Slides  Webcast   

June 27, 2006 - Updates from Working Groups on Direct-to-Consumer Marketing of Genetic Tests and Services  
 
  FDA - FTC Collaboration - Dr. Gutman & Mr. Daynard  
  Webcast  Transcript   
 
  Data Collection on the Public Health Impact - Mr. Bowen  
  Webcast (included above) Transcript   
 

June 15, 2005 - Direct-to-Consumer Marketing of Genetic Tests  
 
  Secretary Leavitt's Response to SACGHS Letter and Relevant Agency Activities  
  Dr. Tuckson and Relevant Ex Officios  
  Webcast  Transcript   
 
  FDA's Role in the Oversight of Direct-to-Consumer Marketing of Genetics Tests  
  Deborah Wolf, J.D.
Office of Compliance
Center for Devices and Radiological Health, FDA
 
  Slides  Webcast  Transcript   
 
  Full Committe Discussion  
  Webcast  Transcript   
 

June 15, 2004 - Discussion of Draft DTC Resolution  
  Facilitator: Christopher Hook, M.D.  
  Webcast  Transcript   
 

 

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