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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

About the Coalition for Genetic Fairness

List of GINA Supporters and 2008 Coalition Members

The Coalition for Genetic Fairness was founded in 1997 to address the growing concern surrounding the misuse of genetic information in health insurance and employment decisions. The founding organizations included the Alpha-1 Association, Genetic Alliance, Hadassah, National Partnership for Women & Families, National Society of Genetic Counselors, and the National Workrights Institute. The Coalition's objective was to educate the public and Congress about genetic discrimination, so introduced genetic nondiscrimination legislation could be seriously considered. Initially, the Coalition consisted of civil rights, disease-specific, and healthcare organizations, but in 2005 the CGF expanded to include industry groups and employers.

Since its founding through the signing of the Genetic Information Nondiscrimination Act of 2008 into law, the Coalition united more than 500 organizations and thousands of individuals as one voice against genetic discrimination.

The next step: With GINA's passage, the CGF continues to bring together the health community to educate all and raise awareness of GINA, its meaning, and how it will impact not only health insurance and employment, but healthcare delivery, research, and emerging technologies. The Coalition encourages and facilitates dialogue, and examines challenges and opportunities.

The CGF convenes the space for this dialogue-space that is open and where all perspectives are represented. We inform the regulatory process, address the needs of stakeholders, and create and disseminate a variety of educational materials, resources, and tools.

Please contact Sharon Terry at sterry@geneticalliance.org with any questions about the Coalition for Genetic Fairness and its activities.


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