Column: This Republican bill would let your employer demand access to your genetic information

Under the new legislation, employees who refuse testing may be charged a penalty of up to 30% of the cost of their health insurance. (March 14, 2017) Sign up for our free video newsletter here


We’ve reported before on the scam that is the workplace “wellness” program. These are ostensibly voluntary initiatives that aim to goad employees into healthier lifestyles — say through diet, exercise and smoking cessation — by offering them a discount on their health insurance premiums or some other benefit.

In practice, the voluntary programs can shade into mandatory programs, while giving employers an otherwise illegal window into their workers’ medical histories. A bill now making its way through Congress would give employers an even stronger hand in forcing workers to give up their privacy.

The “Preserving Employee Wellness Programs Act,” which sailed through the House Committee on Education and the Workforce last week on a 22-17 party-line vote with Republicans in the majority, is “an ugly piece of legislation,” warns Nicholas Bagley of the University of Michigan. The measure, he reports, would “effectively allow businesses to require their employees to disclose lots of sensitive medical data, including their genetic information.”


[The act] sweeps aside federal anti-discrimination law in order to give businesses more power to root about in their employees’ lives.

— Nicholas Bagley, University of Michigan

Lurking in the background of this bill is a mismatch between federal employment discrimination and healthcare laws. The Affordable Care Act and HIPAA, the Health Insurance Portability and Accountability Act of 1996, provided limited exemptions to medical privacy protections at the workplace. Under those laws, employers with “wellness” programs can discriminate between workers who join the programs and those who don’t. The latter can be charged up to 30% more for their employer-sponsored health insurance. That’s not peanuts: With the average cost of a family plan set at more than $18,000, a 30% surcharge comes to more than $5,400.

Yet as Bagley explains, the Americans with Disabilities Act says employers can’t require workers to take a medical exam unless it’s “voluntary” and the Genetic Information Nondiscrimination Act, or GINA, prohibits employers from asking for workers’ “genetic information,” including any “manifestation of a disease or disorder in family members.”

Employers have been grousing that these conflicts hamper their ability to offer wellness programs. Last year, the federal Equal Employment Opportunity Commission saw things the employers’ way and liberalized its interpretation of when a wellness program is “voluntary.”

This was a reversal from the EEOC’s position just two years earlier, when it sued Honeywell for what it said was a coercive arrangement in which workers who opted out of its wellness screening were subject to thousands of dollars in insurance-related penalties. A federal court in Minneapolis sided with Honeywell. But the EEOC’s about-face drew a lawsuit from AARP, which contends that the 2016 rules “enable employers to penalize employees substantially for choosing not to divulge medical or genetic information about themselves or their families.” The AARP lawsuit is headed for trial in federal court in Washington, D.C.

That’s where the Preserving Employee Wellness Programs Act comes in. It was introduced by Rep. Virginia Foxx (R-Va.), a GOP lawmaker who previously was best known for sedulously defending for-profit colleges like Corinthian while collecting campaign contributions from that industry. Her bill presumptively would consider workplace wellness programs to be in compliance with both the ADA and GINA.


“If you think that’s no big deal,” Bagley observes, “imagine that your spouse is an alcoholic or that your 22-year-old son was just diagnosed with schizophrenia. 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.” The act, he says, “sweeps aside federal anti-discrimination law in order to give businesses more power to root about in their employees’ lives.”

This would be almost OK, if there were any evidence that workplace wellness programs work. There isn’t. Their popularity may owe more to the assiduous salesmanship of the firms hawking these programs than to their efficacy. Most of the data about the efficacy of wellness programs come from vendors’ studies, which have been roundly questioned.

A 2014 paper by healthcare consultants Al Lewis and Vik Khanna found that, rather than reducing healthcare costs for sponsoring employers, wellness programs either had no effect on their costs or raised them. “There is no clinical evidence,” they reported, “to support the conclusion that three pillars of workplace wellness — annual workplace screenings and/or annual checkups for all employees (and sometimes spouses), and incentivized weight loss — are cost-effective.”

A 2013 Rand Corp. survey found that some wellness programs produced measurable improvements in participants’ risk factors, such as smoking reduction, though some reductions seemed meager indeed: The average weight loss in programs Rand tracked among women averaging 165 pounds at the outset and men averaging 195 was about one pound, after a year. By the fourth year of the program, even that effect had largely evaporated.

Rand did find that employer healthcare costs were lower for program participants, but not by enough to be statistically significant. And it found that while employers “overwhelmingly expressed confidence” that the programs had saved them money on medical expenses, almost none had bothered even to estimate those savings.

That prompts skepticism about whether wellness programs really are designed to create a healthier workforce, as opposed to shifting healthcare costs onto unhealthier workers or even to discourage less healthy people from applying for jobs in the first place. And it undermines the assertion in the Foxx bill’s preamble that “health promotion and prevention programs are a means to reduce the burden of chronic illness, improve health, and limit the growth of health care costs.” The effect of the bill wouldn’t be to enhance workers’ health, but to give employers more ways to screen people out.


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