Genetic Discrimination Resources

The National Society of Genetic Counselors (NSGC) is committed to ensuring that the public has access to genetic counseling and testing when desired. Given the current climate, we have concerns about the potential use of genetic information to deny health care and employment to individuals. Specifically, studies have shown that the fear of genetic discrimination prevents individuals and their families from meeting with a genetic counselor or having genetic testing. Genetic counseling and testing have the ability to prevent future health problems, but they cannot be successful if people are too afraid to utilize them. Because of our concerns and a position statement originally adopted by NSGC in 1987, we support additional federal legislation to protect the public from genetic discrimination.

This webpage has a number of resources that we hope will be helpful to students, medical and legal professionals, and consumers. We provide links to genetic discrimination position statements from other organizations, existing federal and state laws and regulations, advocacy resources, and international policies and reports on genetic discrimination. You will also find a balanced compilation of links to scientific publications that address genetic discrimination.

4-15-08 GINA Action Alert

National Society of Genetic Counselors GINA Resolution

Genetics Day on the Hill: September 27, 2006

Download Genetic Discrimination Brochure
(click here for high quality version for printing)

Proceed to Genetic Discrimination Resources

The NSGC has been working with the Coalition for Genetic Fairness in this effort. For valuable resources on this topic and how to become active, please visit the Coalition website at:
http://www.geneticfairness.org