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Genetic Information Nondiscrimination Act (GINA)

Genetic Privacy & Protection

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.  

GINA LogoDesigned 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.  

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12/6/2022 - Joined a broad range of stakeholders to urge Appropriations leaders to pass the FY23 Omnibus spending bill, and to include boosted funding for the National Institutes of Health (NIH) and our nation’s other research agencies.

11/28/2022 - Asked congressional leadership to include the Access to Genetic Counselor Services Act (H.R.2144/S.1450) in a year-end legislative package so that Medicare beneficiaries can better access genetic counseling services.

11/21/2022 - Joined the Defense Health Research Consortium in encouraging congressional leaders to enact the FY23 Defense Appropriations Act, to ensure full funding of the Defense Health Research Programs, including the Congressionally Directed Medical Research Programs (CDMRP).

11/2/2022 - Urged congressional leaders to prioritize the Metastatic Breast Cancer Access to Care Act (H.R.3183/S.1312), which eliminates waiting periods for SSDI benefits and for Medicare coverage for individuals with metastatic breast cancer.

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