Policy Archive

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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12/14/2020 - Reached out to Hill leadership requesting that any end-of-year legislative package include a permanent extension of the 7.5% threshold for medical expense deductions. 

12/10/2020 - Joined over 300 national, state and community organizations in a letter to the Biden-Harris Transition Team urging the incoming administration to prioritize healthcare immediately upon taking office and outlining key priorities. 

12/9/2020 - Signed on to a letter asking Congressional leadership to include the Removing Barriers to Colorectal Cancer Screening Act (HR1570/S668) in the year-end legislative package, waiving Medicare coinsurance if polyps are found/removed during a colonoscopy screening.

11/17/2020 - Sent a letter to Texas legislators expressing support for genetic counselor licensure, an important mechanism to help patients and providers identify appropriately trained and qualified genetic counseling professionals.

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