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The Republican Bid to End Genetic Privacy Would Ruin Me

A new bill would give my employer access to my genetic information, and potentially make my kids unemployable.
Image: Science & Society Picture Library / Getty

Three years after the Social Security Administration declared me totally and permanently disabled, I decided to give up my Social Security Disability Insurance (SSDI) benefits and give working another try. After months of looking, I began a new job three weeks ago. Two weeks after I started, Republicans introduced a new bill in Congress that would give employers the right to order their employees to undergo genetic testing—and access their results.


I have mitochondrial disease—a progressive genetic disease that targets my muscles, eyes, and organs—and over time it has had a serious impact on my ability to work. I've tried hard over the last few years to find a treatment plan that would enable me to return to work, but that effort may soon be for nothing. My days on the job could be numbered if my new employer has access to my genetic test results, and that's exactly what a new bill in Congress would give them.

The bill, called the "Preserving Employee Wellness Act," expands what employers can legally require as part of their "employee wellness programs" to include genetic testing, as long as participation in the program itself is "voluntary." Don't get too excited about the voluntary aspect of the program, though. If you opt out of these employee wellness programs, your employer can legally discriminate against you by raising your health insurance premiums by up to 30 percent (even 50 percent in some cases). Many people would be forced to choose between affordable health insurance and medical privacy.

Under the bill, employers wouldn't have access to individual genetic test results—the results they receive would be randomized. At large corporations, that might offer some protection (depending on how much demographic data is included in the results). But for small companies like my new employer, it wouldn't be hard to match employees to their genes. It's not clear yet how anonymous results would be, but to take my own example, my company is tiny. If my employers got age, sex, race, or any other detail along those lines, it would be pretty simple to figure out which information belongs to whom. My medical expenses aren't that bad now, but upon seeing my genetic information, my employer would discover that my expenses are likely to be massive down the line—and that I'm likely to go back on disability (using their plan) before other employees. This company seems pretty chill, but financially I'm a bad bet, and it's concerning.


Employee wellness programs themselves aren't new. But right now the Americans with Disabilities Act (ADA) prohibits employers from requiring employees to take medical exams unless they're voluntary, and the Genetic Information Nondiscrimination Act (GINA) prevents employers from requesting genetic information from employees and their families. The Preserving Employee Wellness Act would change all of that by stipulating that workplace wellness programs are presumptively in compliance with the ADA and GINA. It's your employer, not you, who will get to decide what "voluntary" testing means—and how much medical information you have to disclose about yourself and your family.

In the past, genetic testing was far too expensive for employers to dabble with. However, a new era of inexpensive and broadly available genetic tests have made the option more appealing to employers. "The challenge becomes how to implement usage of this information and to very clearly define rights of the patient in the control of the information," says Troy Moore, chief scientific officer at Kailos Genetics. "This is exceedingly challenging due to lack of knowledge on the part of the legislative branch, pressure by lobbying groups and a lack of general interest in the public—until it affects them personally."

The new bill applies to your family's genetic info, too. If being forced to tell your employer about your grandmother's bout with breast cancer sounds illegal, that's because it is—right now. Today, GINA prevents employers from accessing their employees' family medical history. But a provision in the Preserving Employee Wellness Act would allow them to demand detailed family medical information, including genetic test results, from employees and their family members.


As soon as my oldest son read about the bill, he came to me with his concerns about what it would mean for his future employability. For people like my kids, whose family history is an insurance underwriter's nightmare, giving employers access to their family history could make them unemployable. It could also prevent them from being approved for disability insurance, long-term care insurance, or life insurance, none of which are protected under GINA.

Genetic testing can have searing personal and financial implications. Not everyone wants to know, for instance, that they're likely to develop Alzheimer's disease or breast cancer in the future, and it's important to consider how genetic testing will shape your future before you take the test. That's why genetic counseling is required before undergoing traditional genetic testing (direct-to-consumer products like 23andMe are considered entertainment, so they're exempt from this requirement). But there's no provision in Preserving Employee Wellness Act that would require employers to provide genetic counselors to their employees. On the contrary, the bill allows employers to coerce employees into taking genetic tests they might not want to take at all.

There's yet another downside to this bill: As soon as an employee sees their test results, they are required to disclose them on any future applications that inquire about it, such as life insurance, disability insurance, long-term care insurance, and health insurance. It's already legal to discriminate against people with pre-existing conditions for those first three categories, and Republicans are trying to make it legal for the fourth, too—by pushing people with pre-existing conditions on to high-risk health insurance plans. So it's not just about what an employer does with your info, but how getting tested affects your ability to be insured.

If employee wellness programs actually helped anyone, this might be slightly less appalling, but they're pretty much a scam. Plus, if employers begin to ask too many lifestyle-related questions as part of these programs (such as inquiring into employees' pot-smoking habits), they may see younger, generally healthier employees choosing to opt out in order to avoid losing their jobs. Then, as more healthy people pull out of the insurance pool, rates go up for everyone else.

"Higher rates due to worsening experience from less-younger enrollment might end up being more costly than any potential savings of putting in a wellness program with testing and the subsequent financial penalties," says Don Goldmann, past president of the National Association of Health Underwriters and vice president of Word & Brown General Agency.

Even if there aren't systemic consequences of this bill for healthy young adults, there will be for people like me and my family. It targets disabled and chronically ill people who need stable jobs and health insurance even more than the average American, and it allows employers to discriminate against them in the name of "wellness." My employer has no right to my private genetic information and neither does yours. Read This Next: How Gene Testing Forced Me to Reveal My Private Health Information