A new bill would allow employers to see your genetic information — unless you pay a fine

Julia Belluz · Monday, March 13, 2017, 5:03 pm

Obamacare’s wellness programs invaded people’s privacy. This new bill goes even further.

A new bill is quietly making its way through Congress that could bring the US a little closer to a Gattaca-like future in which employers could discriminate against their employees based on their genes and risk of disease.

To understand how we might get to Gattaca, let’s back up. Under Obamacare, employers are allowed to offer employees deep discounts on health insurance premiums if they participate in workplace wellness programs. The programs often involve medical questionnaires and health assessments — which has meant employers can get access to some of their employees personal health data.

Employers embraced the wellness programs. Insurers love them. The Obamacare incentives helped grow the giant workplace wellness industry. And the workplace wellness provisions in the law were some of the only parts of the ACA that received enthusiastic bipartisan support.

Now this new bill, HR 1313 — or the Preserving Employee Wellness Programs Act — seeks to clarify exactly how much personal health data employers can ask their employees to disclose. And in doing so, the bill also opens the door to employers requesting information from personal genetics tests or family medical histories.

Unsurprisingly, HR 1313 has captured the media’s imagination. Vanity Fair suggested the bill “could make one sci-fi dystopia a reality.” Fortune said workers might soon be “forced” into genetic tests. On NBC’s Meet the Press yesterday, Health and Human Services Secretary Tom Price was asked about HR 1313 — which is part of a set of bills that seek to replace pieces of Obamacare — and said it sounded “like there would be some significant concerns about it.”

I reached out to two health law professors — the University of Michigan Law School’s Nicholas Bagley and Washington and Lee University School of Law’s Timothy Stoltzfus Jost — for help parsing the legislation.

As it turns out, employee wellness programs were already very intrusive of employees’ privacy. It also turns out they’re a bit of a sham and don’t work nearly as well as supporters might have hoped to make people healthier or bring down health care costs. But the new bill would allow employers to dig even deeper into participating employees’ personal health information. While employees wouldn’t be forced to join the programs or hand over their genetic test results, they’d have to pay hefty penalties for opting out.

This new bill will allow employers to see more of your personal health data — unless you pay a surcharge to opt out

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http://www.vox.com/policy-and-politics/2017/3/13/14907250/hr1313-bill-genetic-information