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

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

If HR 1313 passes, it’s not inconceivable that your employer could include questions about your family medical history or demand your personal genetic data through a wellness program — or impose a surcharge on your health insurance.
Andrew Brookes/Getty

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

There are four main ways HR 1313 would allow workplaces to access more of their employees’ personal and family health histories, and potentially use that information to discriminate against their workers:

1) First, the bill would kill legal challenges over whether workplace wellness programs are actually voluntary.

Under Obamacare, people who joined employee wellness programs at work were sometimes asked to submit health assessments or questionnaires. Workers who participated were eligible for a 30 percent (or higher) discount on their health insurance premiums. Employees who didn’t participate couldn’t get that discount, and therefore paid more for their health insurance.

The health assessments or questionnaires might probe into people’s medical histories, and this created friction with laws such as the Americans With Disabilities Act (ADA). The ADA says employers can’t ask their employees to undergo a medical history — unless that request is made through a voluntary wellness program. And a 30 percent surcharge is a pretty large sum of money — more than $5,400 for the average family plan in 2016 — so opting out may not feel optional for many people.

To try and resolve this legal tension, the Equal Employment Opportunity Commission (EEOC), an independent agency involved with overseeing compliance of the AD, got involved in 2016. It determined that if the ACA allows this surcharge, then employers are in compliance with the ADA, meaning that it’s okay for employers to charge workers who don’t opt in to the programs.

The legal ground for that ruling is shaky, according to Bagley, who blogged about the bill at the Incidental Economist. But the new bill would cement the EEOC’s interpretation of this: “It’s also resolving in statute the tension between the ACA and ADA — and Congress has never done that before.” That means this provision of the ACA would no longer be subject to legal challenges in court, Bagley added.

And so under the new bill, if it passes, if an employer has a medial history questionnaire as part of a wellness program, a worker would need to choose between completing it and paying that surcharge.

2) Second, the bill would allow employers to ask about an employee’s family medical history — or risk paying a surcharge.

Right now, under the Genetic Information Nondiscrimination Act (GINA), wellness programs cannot inquire about an employee’s family medical history. The reason for the prohibition is simple: If you’re on a family plan, employers are helping subsidize all that costly medical care for your sick family members. “If you might have a sicker-than-average family, your employer is not going to be too happy to keep you on,” said Bagley.

Stoltzfus Jost explained: “This keeps employers and insurers from discriminating against people with health problems or genetic predispositions. It also gives people the peace of mind of knowing their employer doesn’t have that information. “

The new bill would amend GINA and allow employers to start asking about family medical history for the first time. Those who refuse, again, would face that 30 percent surcharge.

So this also leaves employees in a tough spot. It means they’re now open to potential genetic discrimination by their employer or insurers. As Bagley wrote on his blog, “Employers aren’t supposed to use that kind of information to discriminate against you. But they’ll be sorely tempted: through your employer-sponsored coverage, they’re on the hook for your family’s medical expenses.”

3) Third, employers would be able to demand your personal genetic information — unless you pay a surcharge.

Under GINA, employers only have the right to access anonymized aggregate data about their employees’ health that’s collected as part of a wellness program. This was already controversial, since — in workplaces with a small number of employers — it might be easy for employers to tell which employee’s data they were looking at.

The new bill, once again, goes further: It says that if an employer runs a wellness program that complies with the ACA, then it’s okay to ask workers for their personal information. So this would mean employers could demand access to the results of genetic tests an employee might have undergone during pregnancy or to determine if she’s susceptible to breast cancer, for example.

This, too, is not mandatory per se — but if you refuse to give that information, you face that 30 percent surcharge. And again, there’s that pesky discrimination problem. “Employers aren't supposed to use sensitive information to discriminate,” Bagley said, “but the whole reason that statutes like the ADA and GINA keep that information from employers is because there's a risk that they may use it anyhow.” In a worst-case scenario, for example, they could drop an employee who is at a high risk of a costly genetic disorder.

4) Fourth, the bill transfers more regulatory power from an independent committee to federal agencies

The EEOC is an independent agency involved with overseeing compliance of the ADA, and it also currently has regulatory authority over employee wellness programs.

The new bill would transfer regulatory power from the EEOC to agencies (HHS, Labor, and Treasury) headed by President Trump’s Cabinet members.

“This is a big shift of authority away from an independent agency that thinks a lot about discrimination to agencies that don’t have the same mission and are more subject to the control of the president,” said Bagley.

Wellness programs were already intrusive — but this bill goes further

Wellness programs by their nature intruded on employee privacy. In the programs’ health assessments, they probed into how many hours workers slept, what food and alcohol they ate and drank, and how much they exercised. That’s part of the reason they’ve been so controversial.

Many of the news stories on this bill suggest HR 1313 came out of thin air; it didn’t. It simply builds on Obamacare provisions by clarifying exactly how much employers can peer into their employees’ health histories and genetic information — and it empowers employers with even more oversight, leaving workers once again in the position of choosing between affordable health care and their privacy.

Employees in places with these wellness programs were already forced to make that choice; under HR 1313, they’ll simply have even more to worry about, like whether they want their employer to see the results of a genetics test they had during a pregnancy, or to know that their spouse or mother had cancer or depression.

As Stoltzfus Jost of Lee University summed up, “The bill expands or eliminates the employee protections that were pretty weak already.”

This is worrisome for anyone concerned with genetic discrimination, genetic privacy, or disability rights, which is why groups like the American Society of Human Genetics have opposed the bill.

Meanwhile, there’s actually no good evidence that these wellness programs actually do what they’re supposed to do — improve health and bring down health care costs — so employers’ fondness for the programs may be dissipating, Bagley added.

For now, HR 1313 has already been marked up by the House Education and the Workforce Committee, and it’s now up to House leadership to decide on when to vote on it. Hopefully lawmakers will pay attention to the privacy and discrimination issues and the lack of evidence for wellness programs as the bill moves through Congress.

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