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 > New Legislation Threatens Genetic Privacy


Newsflash

7/26/2019
FORCE is supporting legislation (H.R. 4078) to reauthorize and increase funding for the Breast Cancer Education and Awareness Requires Learning Young Act (EARLY) Act.

6/27/2019
We played a lead role in drafting coalition comments on the FDA's proposed mammography guideline updates.

6/21/2019
FORCE recommendations regarding genomics were accepted and will be integrated into the Healthy People 2030 objectives.

6/3/2019
Today, the FDA announced a new pilot program called Project Facilitate to assist oncologists in requesting access to unapproved therapies for cancer patients. 

5/7/2019
We signed onto coalition letters to the House and Senate regarding FY20 funding for the Defense Health Research programs. 

New Legislation Threatens Genetic Privacy

Genetic Privacy & Protection

Overview

The Preserving Employee Wellness Programs Act, H.R. 1313, was introduced in the U.S. House of Representatives in early 2017. This bill would allow employer-sponsored workplace wellness programs to collect information from the employee about a genetic predisposition to, or existing disease, without violating the Genetic Information Nondiscrimination Act (GINA) or the Americans with Disabilities Act (ADA). FORCE and numerous other patient advocacy organizations vehemently oppose this measure and mobilized to fight the legislation. On March 7, 2017, a letter expressing our grave concerns was sent to the House Committee on Education and the Workforce. The following day, the measure was approved by the committee with votes divided along party lines—22 Republicans in support and 17 Democrats opposed. 

Due to intense pressure from the public and media, on March 22, we received word that the bill is "on hold" and will not move forward without revisions—including changes to the genetic information requirements. However, members of the House Committee on Education and the Workforce indicated that they will push forward with modified legislation aimed at resolving a perceived conflict between language in GINA and ADA, and the ability to implement employer-sponsored wellness programs. We don't believe that a conflict exists and will fight any legislation that weakens patient protections and doesn't reflect the concerns of the hereditary cancer community. 

Under H.R. 1313, none of the protections for health and genetic information provided by GINA or ADA would apply to a workplace wellness program as long as the program complies with very limited requirements. As a result, employers could mandate that employees undergo health screenings and/or genetic testing—or be faced with potentially thousands of dollars in penalties in the form of higher health insurance premiums. If an employer has a wellness program but does not sponsor health insurance, the employer could dock the paychecks of workers who refuse to participate. These financial penalties amount to coercion as many Americans cannot afford higher health insurance premiums or reduced pay. 

FORCE was a key player in the passage of GINA in 2008, which prohibits a group health insurers from asking employees to reveal personal health or genetic information. We will oppose any efforts to weaken genetic protections now and in the future. In addition to working with a large coalition of groups opposed to this bill, FORCE is mobilizing Members of Congress to who are sympathetic to the needs of the hereditary cancer community. Stay tuned for updates on this important issue. 

Check out our previous efforts surrounding GINA and wellness programs.

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