Advocacy

FORCE advocates for families facing hereditary breast and ovarian cancer in areas such as access to care, research funding, insurance, and privacy.

Advocacy > Issues > Genetic Information Nondiscrimination Act (GINA)


Newsflash

11/1/2019 - FORCE, along with hundreds of medical and patient advocacy orgs, expressed support for a long-term reauthorization of PCORI.

10/28/2019 - We authored comments on the FDA's draft industry guidance on developing drugs for the treatment of male breast cancer.

9/27/2019 - FORCE and two dozen groups urged CMS to reconsider the 14-day Rule, which has created delays in patients receiving test results.

9/24/2019 - Signed onto a letter urging the President to waive out-of-pocket costs for seniors on Medicare who have precancerous polyps removed during a screening colonoscopy.

9/3/2019 - We joined over 50 orgs representing patients, advocates, caregivers, researchers, and physicians to support the appointment of Norman Sharpless as FDA Commissioner.

Genetic Information Nondiscrimination Act (GINA)

Genetic Privacy & Protection

Overview

The Genetic Information Nondiscrimination Act (GINA) is designed to prohibit the use of genetic information in health insurance and employment. It 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 & Legal Issues section for more extensive information about GINA.  

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