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


GINA: An Overview

President George W. Bush signed the Genetic Information Nondiscrimination Act (GINA) into law on May 21, 2008. We continue to celebrate this monumental event as the culmination of thirteen years of dedication and perseverance from the health community, led by the Coalition for Genetic Fairness, and many Congressional offices.

Senator Ted Kennedy applauded GINA as "the first civil rights bill of the new century of the life sciences". GINA protects individuals from genetic information discrimination in health insurance and employment. The health insurance provisions of the bill, Title I, will take effect 12 months after the date of signing, on May 21, 2009. The protections in employment, Title II, will take effect 18 months after the date of signing, on November 21, 2009. These protections will apply to residents of all 50 US States and territories.

It is believed that GINA will not only protect individuals from genetic discrimination, but will also begin to ease fear that employers or insurers would discriminate against individuals based upon genetic information. Because of this fear, some individuals have decided not to be tested or use genetic services as tools to manage health. Clinicians have had to discuss the potential for discrimination with their patients. Researchers have experienced decreased enrollment in clinical trials, due in part to participant concerns regarding genetic discrimination when research involves genetic testing. Learn more about the impact fear of genetic discrimination has on clinical research here.

When GINA takes full effect in November 2009, every American will be protected against genetic discrimination in both health insurance and employment.

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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