Proposed Bill Could Punish Employees Who Refuse Genetic Testing

Image via Getty
Image via Getty

A bill quietly making its way through Congress could impose thousands of dollars in penalties on employees who refuse to take genetic tests, which their employers would then be privy to.


As it stands, employers are legally prohibited from accessing such data on their workers, thanks to legislation like the 2008 Genetic Information Nondiscrimination Act, or GINA. But on Wednesday, a bill passed in the House Committee on Education and the Workforce that would create a loophole in those protections by gathering the information as part of “voluntary” workplace wellness programs. Sneaky, sneaky.

Democrats are predictably disturbed by the progress of the bill, which has yet to reach other House committees or the Senate. According to the Washington Post, a letter signed by nearly 70 organizations spanning consumer, health and medical advocacy groups strongly censured the legislation, saying that if enacted, it would undermine basic privacy provisions of the Americans With Disabilities Act:

We strongly oppose any legislation that would allow employers to inquire about employees’ private genetic information or medical information unrelated to their ability to do their jobs, and to impose draconian penalties on employees who choose to keep that information private.

Workplace wellness programs have become increasingly popular, with employers implementing various health-based incentives and penalties to employees based on their personal habits. Participation in a health-risk assessment, for example, can earn workers up to a 30 percent discount on their insurance premiums. On the other hand, smokers can be charged more.

Under GINA, employees can voluntarily submit to genetic testing as part of such a program, the operative word being “voluntarily,” meaning there cannot be incentives or penalties for those who provide it or not. The new bill, if passed, would change that.

“What this bill would do is completely take away the protections of existing laws,” Jennifer Mathis, director of policy and legal advocacy at the Bazelon Center for Mental Health Law, told STAT News.

Pressuring employees into genetic testing also unleashes a torrent of privacy concerns, particularly considering that large employers tend to hire outside companies to run their wellness programs. From STAT:

These companies are largely unregulated, and they are allowed to see genetic test results with employee names.

They sometimes sell the health information they collect from employees. As a result, employees get unexpected pitches for everything from weight-loss programs to running shoes, thanks to countless strangers poring over their health and genetic information.


In Wednesday’s vote, all 22 Republicans on the House committee supported the bill, and all 17 Democrats opposed it.

Studies have shown that such wellness programs improve employee health virtually not at all. Employers, however, have embraced them in part as a way to shift health care costs to workers.



Oh sure, NOW the republicans believe in science