In May 2008, President Bush signed the Genetic Information Nondiscrimination Act (GINA) into law. The legislation, which was passed after a 13-year effort by a broad range of organizations including NHF, provides substantial protection from discrimination on the basis of genetic information. This protection is particularly important to anyone for whom genetic information could indicate the potential for future medical problems, whether for themselves or for a family member. For example, female carriers of hemophilia are now protected by the new legislation.

The passage of GINA raised many questions about exactly who and what is protected, and how to ensure the law is being followed. In response, the Genetic Alliance has created an online resource, “What does GINA Mean? A Guide to the Genetic Information Nondiscrimination Act.” The guide includes topics such as how GINA affects health insurance and employment for individuals, employers and others. For more information, call the Genetic Alliance: 202.966.5557, or e-mail Andria Cornell, Public Policy Program Assistant: acornell@geneticalliance.org

The Genetic Alliance is a nonprofit organization comprising thousands of organizations dedicated to genetic health conditions. It provides public policy and advocacy resources to the organizations to increase research funding, gain access to services and support emerging technologies.