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

Advocacy > Issues > Regulatory Changes Weaken GINA and ADA Protections

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Newsflash

11/8/17
FORCE, along with 60 other patient groups, is asking the Senate to preserve medical expense deductions in any forthcoming tax reform legislation.  

10/25/17
We joined over 100 Defense Health Research Consortium orgs in supporting DoD research funding. Learn more...

9/22/17
Check out this new video w/FORCE & 15 other cancer orgs representing patients, physicians, nurses, & social workers. Oppose Graham-Cassidy! See Video...

9/14/17
FORCE reps were in St. Louis today for an ICER hearing on the value and cost of PARP inhibitors for ovarian cancer patients.

Regulatory Changes Weaken GINA and ADA Protections

Genetic Privacy & Protection

Overview

The Genetic Information Nondiscrimination Act (GINA) prohibits health insurance companies and employers from using a family history of disease or genetic test results to discriminate against people. Rules issued by the U.S. Equal Employment Opportunity Commission (EEOC) in May 2016 weaken protections against invasion of medical privacy and significantly weaken workplace and health insurance discrimination safeguards afforded by the Genetic Information Nondiscrimination Act (GINA) and Americans with Disabilities Act (ADA). 

The EEOC proposed these changes in 2015 in an effort to better align ADA and GINA with the wellness components of the Patient Protection and Affordable Care Act (PPACA). A large coalition of groups--including FORCE, AARP, The Leadership Conference on Civil and Human Rights, National Disability Rights Network, American Society of Human Genetics, National Women's Law Center and numerous others--fought the changes which permit financial penalties for nonparticipation in employer-based wellness programs. Unfortunately, the new rules were finalized and apply to future employer-sponsored wellness programs beginning on or after January 1, 2017.

Read more in our September 2015 blog and official statement on the new rules.

The AARP filed a motion for preliminary injuntion and legal complaint to the new ADA and GINA rules in October 2016. FORCE supports this legal challenge and will continue to follow the issue.

 

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