Policy Archive Successful Effort
Genetic Information Nondiscrimination Act (GINA)
In 2008, the Genetic Information Nondiscrimination Act (GINA) was passed to protect individuals from genetic discrimination in health care and employment. GINA was the result of a 13-year effort spearheaded by the Coalition for Genetic Fairness (CGF). FORCE was an active member of this coalition beginning in 1999, the year FORCE was established.
Designed to prohibit the use of genetic information in health insurance and employment., GINA prohibits group health plans and insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. The legislation also bars employers from using individuals' genetic information when making hiring, firing, job placement, or promotion decisions. Initially, the Coalition consisted of civil rights, disease-specific, and healthcare organizations, but in 2005 the CGF expanded to include industry groups and employers, uniting more than 500 organizations and thousands of individuals as one voice against genetic discrimination.
The law currently does not protect individuals from discrimination in life, disability or long-term care insurance. For more information, visit NIH's National Human Genome Research Institute.
See our Privacy & Nondiscrimination section of our website for more extensive information about GINA and other legal protections.
7/1/2021 - Effective today, North Carolina's Medicaid program will cover genetic counseling and BRCA mutation testing for those who have "higher than average risk" for the development of certain cancers based on specific personal and/or family history of the disease.
6/30/2021 - FORCE added its support to a letter sent to Senate HELP Committee leadership urging the prioritization of diagnostics reform on behalf of the In-vitro Diagnostics (IVD) Reform Coalition and the communities it represents.
5/21/2021 - Joined the Defense Health Research Consortium in a letter asking House and Senate leadership to continue support for the defense health research programs funded through the Department of Defense (DoD) Congressionally Directed Medical Research Programs (CDMRP).