New Legislation Threatens Employees’ Genetic Testing Privacy

Employees’ previously protected genetic testing information might soon be up for grabs by their employers under a new bill recently approved by a US House of Representatives committee, according to the bill’s detractors.

The bill—HR 1313, or the “Preserving Employee Wellness Programs Act”—appears to take voluntary workplace wellness program incentives sanctioned under the Affordable Care Act (ACA) a bit further by allowing employers to penalize employees that do not participate in genetic testing as part of the programs. This new legislation would undermine privacy provisions granted through the Americans with Disabilities Act and the 2008 Genetic Information Nondiscrimination Act (GINA).

“It would allow employers to ask employees invasive questions about their and their families’ health, as well as genetic tests they and their families have undergone,” wrote the authors of a dissenting letter from the American Society of Human Genetics, sent to the US House Committee on Education and the Workforce. “It would further allow employers to impose stiff financial penalties on employees who choose to keep such information private, thus empowering employers to coerce their employees into providing their health and genetic information.”

While workplace wellness program participation incentives are not new—offering workers “a variety of carrots and sticks to monitor and improve their health, such as lowering cholesterol” or quitting smoking, according to the Washington Post—legislation has previously steered employers clear of rolling genetic testing and results into the mix. This new bill specifically states that GINA’s protections would not apply, so long as genetic testing is part of a workplace wellness program. While participation would still be considered voluntary, the price of non-participation for employees and their families that would rather protect their genetic privacy or not undergo testing at all could be thousands of dollars in monetary penalties. “The bill would significantly increase the amount of money at stake by allowing an employer to offer higher incentives, up to 30 percent of an individual’s coverage cost,” according to the New York Times.

“While the information returned to employers would not include workers’ names, it’s not difficult, especially in a small company, to match a genetic profile with the individual,” according to an article from STAT. Additional privacy concerns arise from the manner in which workplace wellness programs are managed. “Employers, especially large ones, generally hire outside companies to run them. These companies are largely unregulated, and they are allowed to see genetic test results with employee names.” These companies could potentially sell the health information collected from employees as well, according to STAT.

Groups opposing the bill include the American Academy of Pediatrics, AARP, American College of Medical Genetics and Genomics, American Diabetes Association, March of Dimes, and the National Women’s Law Center.

Supporters of the bill, such as the American Benefits Council, say that confusing and out of sync regulations across federal laws make it too burdensome for companies to offer wellness programs—something this bill would resolve. A statement released by the Committee on Education and the Workforce states that the bill gives employers “the legal certainty they need to offer employee wellness plans, helping to promote a healthy workforce and lower health care costs.”

The testimony asserted that not having federal regulations aligned in a consistent manner “put at risk the availability and effectiveness of workplace wellness programs. This would have the adverse consequence of depriving employees and their families of the meaningful wellness benefits that such programs offer, including improved health and productivity.”

Beyond a stated desire to streamline regulations regarding information collection, why it is important to the companies and their wellness programs represented by the council to have genetic testing information is unclear. While STAT sent questions to the American Benefits Council asking how the lack of access to genetic information presents an obstacle to wellness programs, it “did not immediately respond.”

The House committee approved the bill down party lines on March 8 with 22 Republicans voting in favor and 17 Democrats opposed.


Sarah Sheber is assistant editor/web editor at Journal of AHIMA.


  1. I am so strongly oppposed and incensed by House Bill 1313 that I have no words! I am interested in any and all options available to defeat this ridiculous bill. This seems to me like an insurance company lobbyist attempt to collect genetic data which must be rather hard to come by, but is extremely valuable.

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  2. What the hell is the American Benefits Council? Anyone who supports this bill is flat-out deceived for a few reasons: there is not one – not even one – insurer or benefits management company that can explain DNA’s properties much less manage biological content. Another great deception emanates from big consulting firms selling HR departments psychometrics profiling applications. The trend is moving directly into bio-profiling or, into genomes. The NIH or Stanford and great genome research centers would not be so arrogant as the ABC idiots. The human DNA structure is life, gives life and accepts no judgment. Shut this bill down.

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