Industry Claims New Wellness Program Bill Threatens Privacy of Genetic Testing Information

Anew bill promoted as supporting workplace wellness programs has met with significant backlash, criticized as forcing employees to give their employers genetic testing results. The proposed bill, "Preserving Employee Wellness Programs Act," states its purpose is to "clarify rules relating to nondiscriminatory workplace wellness programs." The Committee on Education and the Workforce, whose chair Representative Virginia Foxx (R-North Carolina) sponsored the bill, explains the legislation responds to EEOC actions that restricted employers' ability to offer incentives to employees participating in wellness programs.

What the Bill Says
The bill stipulates that "collection of information about the manifested disease or disorder of a family member shall not be considered an unlawful acquisition of genetic information with respect to another family member as part of a workplace wellness program offered by an employer and won't violate the Genetic Information Nondiscrimination Act of 2008" (GINA). Family member is intended to have the same meaning as it does in GINA.

That provision regarding information collection is being challenged within the diagnostics industry as threatening privacy rights—specifically with regard to genetic testing information. Earlier this month, the American Society of Human Genetics (ASHG) expressed its opposition to this bill claiming it will "fundamentally undermine the privacy provisions of the Genetic Information Nondiscrimination Act (GINA) and the Americans with Disabilities Act (ADA)."

What's at Stake
Supporters of the bill argue that this bill is needed to make clear that financial incentives can be awarded to those employees who agree to participate in wellness programs, without violating anti- discrimination laws such as ADA and GINA. A Committee on Education and the Workforce fact sheet promoting the bill refers to a discount of 30 percent of premiums as a permissible incentive to encourage employees to participate rather than a penalty for failure to participate.

But opponents take the opposite view claiming that voluntary plans can become mandatory for employees and assert that the 30 percent premium difference is a surcharge. The EEOC challenged employer wellness programs in recent years arguing the incentives for participating or penalties for not participating can make the programs mandatory rather than voluntary. In fact, as the New York Times reported last fall, an AARP lawsuit against the EEOC "questions whether the programs are truly voluntary when the price of not participating can be high"—i.e., 30 percent of health insurance premiums. That lawsuit followed the EEOC's issuance of two final rules addressing the ADA and GINA to address the wellness program incentives. Those rules went into effect this year.

ASHG emphasizes that the ADA and GINA protect employees from sharing genetic or other "sensitive" health information with employers and calls for genetic information involved in workplace wellness programs to only be shared with health care professionals. The new bill ASHG argues "would effectively repeal these protections by allowing employers to ask employees invasive questions about their and their families' health, including genetic tests they, their spouse, and their children may have undergone."

"Americans must be able to continue to volunteer for research and benefit from genetics-based clinical advances without fear of workplace discrimination based on its findings," said ASHG president Nancy J. Cox, PhD in a statement.

Takeaway: While precision medicine is touted as the future of health care and reforms aim to promote wellness and innovative ways to keep patients healthy, a bill purported to further that mission raises debate about genetic testing information and privacy.