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This page provides information concerning the Genetic Discrimination study topic.
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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.
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Reports and Correspondence |
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Secretary Leavitt's Response to SACGHS
(November 8, 2005)
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SACGHS Letter to the Secretary of Health and Human Services
(May 3, 2005)
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Compilation of Public Comments (15MB)
(September - November 2004)
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Legal Analysis of the Adequacy of Current Law
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Perspectives on Genetic Discrimination Video DVD
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Secretary Thompson's Response to SACGHS
(August 12, 2004)
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SACGHS Letter to the Secretary of Health and Human Services
(March 29, 2004)
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Secretary Thompson's Response to SACGHS
(October 10, 2003)
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SACGHS Letter to the Secretary of Health and Human Services
(June 27, 2003)
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Other Relevant Documents |
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On April 7, 2009, HHS released OHRP Guidance on GINA: Implications for Investigators and IRBs at Guidance on the Genetic Information Nondiscrimination Act and a fact sheet for researchers and health care professionals at Information for Researchers and Health Care Professionals
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Top of Page |
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SACGHS Meetings |
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Thursday, October 8, 2009 - Genetic Nondiscrimination in Health Insurance |
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Title I-Genetic Nondiscrimination in Health Insurance |
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Facilitator: Amy Turner
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Title II-Prohibiting Employment Discrimination on the Basis of Genetic Information |
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Kerry Leibig, J.D., Senior Attorney Advisor, Office of Legal Counsel, EEOC
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Slides
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Committee Discussion |
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Transcript
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March 26, 2007 - Session on Genetic Discrimination |
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Briefing on the Status of Genetic Information Nondiscrimination Act |
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Kristine Bradsher
Michelle Adams
Brian Petersen
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Webcast - Transcript
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November 14, 2006 - Genetic Discrimination |
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Update on Genetic Discrimination |
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Sharon F. Terry
President and CEO, Genetic Alliance
Chair, Coalition for Genetic Fairness
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Webcast - Transcript
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June 27, 2006 - Update from Key Stakeholders on the Status of the Federal Genetic Information Nondiscrimination Legislation |
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Michael J. Eastman
Director, Labor Law Policy, U.S. Chamber of Commerce
Co-Chair, GINE Coalition
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Sharon F. Terry
President and CEO, Genetic Alliance
Chair, Coalition for Genetic Fairness |
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Webcast
Transcript
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March 28, 2006 - Genetic Discrimination Session |
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Survey on Public Attitudes toward Genetic Technologies and Genetic Discrimination |
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Ms. Christy White
Cogent Research |
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Slides
Webcast
Transcript
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Q&A Session |
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Webcast
Transcript
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Update on the Status of the Genetic Information Nondiscrimination Act of 2005 (S. 306/H.R. 1227) |
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Sharon F. Terry, M.A.
Chair
Coalition for Genetic Fairness |
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Slides
Webcast
Transcript
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Q&A and Committee Discussion |
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Webcast
Transcript
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Public Comments |
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Webcast
Transcript
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October 20, 2005 - Genetic Discrimination Session |
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Intro |
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Webcast
Transcript
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Update on the Status of the Genetic Information Nondiscrimination Act of 2005 (S. 306/H.R. 1227) |
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Frank Swain, J.D.
Coalition for Genetic Fairness |
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Webcast
Transcript
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Public Attitudes toward Advances in Genetics, Genetic Privacy and the Potential Misuse of Genetic Information |
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Ms. Christy White
Cogent Research |
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Slides
Webcast
Transcript
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Q&A and Committee Discussion |
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Webcast
Transcript
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June 15, 2005 - Session on Genetic Discrimination |
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Update on SACGHS Efforts |
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Ms. Masny, R.N. M.P.H., M.S.
Chair, SACGHS Genetic Discrimination Task Force |
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Slides
Webcast
Transcript
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Overview of Legal Analysis |
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Peter S. Gray, J.D.
Equal Employment Opportunity Commission |
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Slides
Webcast
Transcript
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Congressional Update |
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Ms. Jaimie Vickery
Legislative Assistant
Office of the Honorable Judy Biggert
U.S. House of Representatives |
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Webcast
Transcript
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Full Committee Discussion |
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Facilitators: Ms. Masny and Dr. Tuckson |
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Webcast
Transcript
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February 28, 2005 - Update on SACGHS Efforts on Genetic Discrimination |
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Ms. Masny and Ms. Berry |
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Slides
Webcast
Transcript
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October 18, 2004 - Perspectives on Genetic Discrimination |
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Introduction |
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Agnes Masny, R.N., M.P.H., M.S.N.
Chair, SACGHS Task Force on Genetic Discrimination |
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Slides
Webcast
Transcript
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Panel One: Perspectives of Members of the Public |
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Heidi Williams |
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Webcast
Transcript
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Phaedra Malatek |
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Webcast
Transcript
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Rebecca Fisher, M.L.I.S. |
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Webcast
Transcript
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Tonia Phillips |
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Webcast
Transcript
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Paula Funk |
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Webcast
Transcript
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Maria Carolina Hinestrosa |
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Webcast
Transcript
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Phil Hardt |
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Webcast
Transcript
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Follow-up Questions for Panel One |
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Webcast
Transcript
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Panel Two: Health Care Provider Perspectives |
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Webcast
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Jeff Shaw, M.S. - Oncology Genetics Counselor, Penrose Cancer Center |
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Webcast
Transcript
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Donald W. Hadley, M.S.- Associate Investigator, Social and Behavioral Research Branch National Human Genome Research Institute |
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Webcast
Transcript
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Mark Brantly, M.D. - Professor of Medicine, University of Florida Health Sciences Center |
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Webcast
Transcript
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Follow-up Questions for Panel Two |
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Webcast
Transcript
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Panel Three: Additional Stakeholder Perspectives |
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Webcast
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Kathy Hudson, Ph.D.
Director, Genetics and Public Policy Center |
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Slides
Webcast
Transcript
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Jane Massey Licata, J.D., Ph.D.
Partner, Licata & Tyrrell P.C.
Adjunct Professor, Rutgers School of Law-Camden |
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Webcast
Transcript
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Joanne Armstrong, M.D., M.P.H.
Senior Medical Director, Women's Health, Aetna
America's Health Insurance Plans |
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Webcast
Transcript
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Mike Aitken - Society for Human Resources Management |
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Webcast
Transcript
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Follow-up Questions for Panel Three |
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Webcast
Transcript
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Roundtable Discussion with Three Panels |
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Facilitators: Ms. Masny and Dr. Tuckson |
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Webcast
Transcript
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June 14, 2004 - Genetic Discrimination |
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Update on Genetic Non-Discrimination Legislation and the Activities of the Coalition on Genetic Fairness |
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Joann Boughman, Ph.D.
Executive Vice President, American Society for Human Genetics |
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Slides
Webcast
Transcript
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Discussion and Next Steps |
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Webcast
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October 22, 2003 - Genetic Discrimination in Health Insurance and Employment |
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Update on the Status of Federal Legislation to Prohibit Genetic Discrimination Report from the U.S. House of Representatives |
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Ms. Kristin Fitzgerald
Professional Staff Member
U.S. House Committee on Education and the Workforce |
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Webcast
Transcript
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Roundtable Discussion |
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Facilitator: Ms. Berry |
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Transcript
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June 12, 2003 - Congressional Efforts to Prevent Genetic Discrimination |
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Kim Monk, M.S.
Senior Health Policy Advisor, Senate Committee on Health, Education, Labor and Pensions |
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Webcast
Transcript
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Question and Answers |
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Webcast
Transcript
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