Genetic Information Nondiscrimination Act (GINA)

ASHG, as a founding member of the Coalition for Genetic Fairness, has been active in the education of the Congress and supportive of the passage of the Genetic Information Nondiscrimination Act (GINA) legislation, which has been introduced once again this year. We urge you to join the ongoing efforts to inform Congress about the need for this important legislation.

The Coalition for Genetic Fairness encourages follow-up action by all members and supporters, including the following:

• ASHG and FASEB have written letters of support to the legislation’s current sponsors. Click here for a sample of ASHG’s letters; click here for FASEB’s letter.
   

• A current list of GINA’s House co-sponsors is available online.
   

• To learn more about how you can help build support for this important bill by reaching out to your representatives and senators and asking them to co-sponsor GINA, go to: http://www.geneticfairness.org
   

• Complete, updated coalition information, contact information and sample letters are available at http://www.geneticfairness.org
   

• The FASEB Office of Public Policy also has regular updates on Washington at: http://opa.faseb.org/pages/Publications/washingtonupdate.htm

If you would like additional information about how to help, please feel free to contact Joann Boughman, PhD, ASHG Executive Vice President at jboughman@ashg.org.

Background:

The Coalition for Genetic Fairness was founded in 2000 to address the growing concern surrounding the misuse of genetic information in insurance and employment decisions. ASHG is a founding member and is represented on the executive committee of this coalition. The coalition’s objective is to urge Congress to pass comprehensive federal legislation outlawing genetic discrimination and to educate the public about these protections. Initially, the coalition consisted of civil rights, patient and health care organizations, but was expanded in 2005 to include industry groups and employers.