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Review some of FORCE's current legislative and regulatory policy priorities that impact the hereditary cancer community.

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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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News Briefs

10/7/2024 - Urged congressional leadership to swiftly pass the SCREENS for Cancer Act, which would reauthorize the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) for another five years,

10/2/2024 - Joined the Alliance for Connected Care and over 150 orgs in a letter to CMS/HHS encouraging the development of a permanent policy related to telehealth practitioners and the reporting of their location at the time of service.

9/25/2024 - Sent a letter to members of the Senate Judiciary Committee strongly opposing efforts to advance S. 2140, the Patent Eligibility Restoration Act (PERA), which would allow patents on abstract ideas, laws of nature, and natural phenomena.

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