undefinedCoalition Home Working to pass Genetic Nondiscrimination Legislation
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Executive Committee

Sharon F. Terry, Chair,
Genetic Alliance

Cynthia Pellegrini,
American Academy of Pediatrics

Derek Scholes,
American Heart Association

Joann Boughman,
American Society of Human Genetics

Timothy Leshan,
Brown University

Marla Gilson,

Barbara Harrison,
National Society of Genetic Counselors

Jeremy Gruber,
Council for Responsible Genetics


For Researchers

The research community will benefit from increased enrollment in clinical trials and research activities due to the protections against genetic discrimination as afforded by GINA. In the informed consent process, when discussing the potential risks associated with a particular research activity or study, researchers should prepare to include information about GINA or resources for participants to access to obtain additional information about GINA once GINA becomes active. The health insurance provisions of the bill will take effect 12 months after the date of signing, on May 21, 2009. The protections in employment will take effect 18 months after the date of signing, on November 21, 2009.

Last Updated: November 10, 2008

Please contact Andria Cornell at (202) 966-5557 x207 or acornell@geneticalliance.org with any questions about the Coalition for Genetic Fairness and its activities.


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