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H.R. 1313 – New Bill to Threaten Genetic Nondiscrimination

A new bill, sent to the House Ways and Means Committee on the 2nd of March, 2017, may allow employers to punish employees who refuse genetic testing. The “Preserving Employee Wellness Programs Act” (link to full text below) would allow an exception to the Genetic Information Nondiscrimination Act (GINA) through employee wellness programs. In short, H.R. 1313 could allow an employer to effectively charge an employee for refusing to take a genetic test.

GINA, passed in 2008, allows employers to request genetic information about their employees from wellness programs, but protects employees by requiring that they sign written voluntary consent, prohibits the sharing of genetic results to non-healthcare personnel, and heavily restricts the rewards an employer can deny to non-complying employees. H.R. 1313 would eliminate these protections and instead regulate this kind of genetic testing under 2705(j) of the Public Health Service Act. If H.R 1313 passes, employers will be able to request that employees take a genetic test. If employees refuse, they could end up paying up to 60% more for their health insurance, which could cost an employee thousands of dollars annually. What’s more concerning is that employers would then have direct access to bulk genetic data from any wellness programs, which could be easily be linked to individual employees in small workplaces. Even if employers are not able to identify the genetic data directly from bulk data sets, private third parties implementing the testing have little oversight, and could feasibly sell employers identifying genetic information, opening the door wide for employers to discriminate based on genetics.

H.R. 1313 has passed a house committee with 22 Republican representatives supporting and 17 Democratic representatives opposing. The proposal is part of the initiative by House Republicans to modify parts of the Affordable Care Act. If the bill passes the House Ways and Means committee, it will likely be considered in an upcoming voting session, where other non-budgetary healthcare laws will also be considered. The committee has issued a statement defending the bill, explaining that it will provide “the legal certainty [workplaces] need to offer employee wellness plans, helping to promote a healthy workforce and lower health care costs.” 

The American Society for Human Genetics, a professional organization of genetic specialists, has recently come out against the bill, writing in a press release dated March 8th, 2017 (link to full text below) that the bill “would force Americans to choose between access to affordable healthcare and keeping their personal genetic and health information private.” The Bazelon Center for Mental Health Law, a mental health advocacy group, has also voiced opposition to the bill.

This bill directly threatens sufferers of HD, as it leaves the door wide open for possible discrimination. Employers seeking to limit healthcare costs and maximize worker output might use employee data from wellness programs to selectively fire employees deemed to have long-term health risks. Though this would go against GINA, there would be little recourse to proving the intent of the firing, especially if the employee was not aware of their HD status. The bill might also pressure those at risk for HD into getting tested for their disease, something that many in the HD community have purposely avoided.

For Further Consideration

The timing of further deliberation on this bill is uncertain. If you feel strongly about this   proposal, please take the time to write to your congressional representatives. You can find your district’s house representative at this link:

Here you can find the full text of the bill:

Here you can find the statement by the American Society for Human Genetics:

For further reading about the bill ARS Technica has a well sourced article:     bill-lets-them-take-it-by-force/

An update on the amendment process with this bill can be found here: