A little-noticed bill moving through Congress would allow companies to require employees to undergo genetic testing or risk paying a penalty of thousands of dollars, and would let employers see that genetic and other health information.

Giving employers such power is now prohibited by legislation including the 2008 genetic privacy and nondiscrimination law known as GINA. The new bill gets around that landmark law by stating explicitly that GINA and other protections do not apply when genetic tests are part of a “workplace wellness” program.

The bill, HR 1313, was approved by a House committee on Wednesday, with all 22 Republicans supporting it and all 17 Democrats opposed. It has been overshadowed by the debate over the House GOP proposal to repeal and replace the Affordable Care Act, but the genetic testing bill is expected to be folded into a second ACA-related measure containing a grab-bag of provisions that do not affect federal spending, as the main bill does.


“What this bill would do is completely take away the protections of existing laws,” said Jennifer Mathis, director of policy and legal advocacy at the Bazelon Center for Mental Health Law, a civil rights group. In particular, privacy and other protections for genetic and health information in GINA and the 1990 Americans with Disabilities Act “would be pretty much eviscerated,” she said.

Employers say they need the changes because those two landmark laws are “not aligned in a consistent manner” with laws about workplace wellness programs, as an employer group said in congressional testimony last week.

Employers got virtually everything they wanted for their workplace wellness programs during the Obama administration. The ACA allowed them to charge employees 30 percent, and possibly 50 percent, more for health insurance if they declined to participate in the “voluntary” programs, which typically include cholesterol and other screenings; health questionnaires that ask about personal habits, including plans to get pregnant; and sometimes weight loss and smoking cessation classes. And in rules that Obama’s Equal Employment Opportunity Commission issued last year, a workplace wellness program counts as “voluntary” even if workers have to pay thousands of dollars more in premiums and deductibles if they don’t participate.

Despite those wins, the business community chafed at what it saw as the last obstacles to unfettered implementation of wellness programs: the genetic information and the disabilities laws. Both measures, according to congressional testimony last week by the American Benefits Council, “put at risk the availability and effectiveness of workplace wellness programs,” depriving employees of benefits like “improved health and productivity.” The council represents Fortune 500 companies and other large employers that provide employee benefits. It did not immediately respond to questions about how lack of access to genetic information hampers wellness programs.

Rigorous studies by researchers not tied to the $8 billion wellness industry have shown that the programs improve employee health little if at all. An industry group recently concluded that they save so little on medical costs that, on average, the programs lose money. But employers continue to embrace them, partly as a way to shift more health care costs to workers, including by penalizing them financially.

The 2008 genetic law prohibits a group health plan — the kind employers have — from asking, let alone requiring, someone to undergo a genetic test. It also prohibits that specifically for “underwriting purposes,” which is where wellness programs come in. “Underwriting purposes” includes basing insurance deductibles, rebates, rewards, or other financial incentives on completing a health risk assessment or health screenings. In addition, any genetic information can be provided to the employer only in a de-identified, aggregated form, rather than in a way that reveals which individual has which genetic profile.

There is a big exception, however: As long as employers make providing genetic information “voluntary,” they can ask employees for it. Under the House bill, none of the protections for health and genetic information provided by GINA or the disabilities law would apply to workplace wellness programs as long as they complied with the ACA’s very limited requirements for the programs. As a result, employers could demand that employees undergo genetic testing and health screenings.

While the information returned to employers would not include workers’ names, it’s not difficult, especially in a small company, to match a genetic profile with the individual.

That “would undermine fundamentally the privacy provisions” of those laws,” said Nancy Cox, president of the American Society of Human Genetics, in a letter to the House Committee on Education and the Workforce the day before it approved the bill. “It would allow employers to ask employees invasive questions about … genetic tests they and their families have undergone” and “to impose stiff financial penalties on employees who choose to keep such information private, thus empowering employers to coerce their employees” into providing their genetic information.

If an employer has a wellness program but does not sponsor health insurance, rather than increasing insurance premiums, the employer could dock the paychecks of workers who don’t participate.

The privacy concerns also arise from how workplace wellness programs work. Employers, especially large ones, generally hire outside companies to run them. These companies are largely unregulated, and they are allowed to see genetic test results with employee names.

They sometimes sell the health information they collect from employees. As a result, employees get unexpected pitches for everything from weight-loss programs to running shoes, thanks to countless strangers poring over their health and genetic information.

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  • Personally I am convinced that this is only being considered for legislation so that we citizens of a free democracy will be surveilled by the current regime of the “president,” for whatever reasons he makes up for the absolute power of his mindless behavior and attending actions. I think that the current regime is so corrupt and paranoid that they should undergo the gene treatment protocol for our benefit when we decide for whom we would vote….in a “fair election!”

    • It is a conspiracy but not quite up to the 1984 levels you describe. The White House has no idea about this bill. Trump will sign it because the GOP tells him to, not because he could care less or understands the first thing about it.

      The conspiracy– and you’re right that there is one — is among large employers (via the American Benefits Council), who get to collect large fines from employees who refuse to submit, and from large HMOs (also in the American Benefits Council) who get to sell employers DNA-testing programs as part of workplace wellness.

      Virginia Foxx, the North Carolina Republican behind this nonsense, knows nothing about genetics but she is Chair of the relevant committee and gets a lot of corporate contributions. She represents a “Safe” district and is betting that her constituents won’t notice her fingerprints on this bill.

  • Imagine one day you show up to work and there : at your desk or pacing the corredors not just your “mini you” but your “mighty you”! Or even a few mighty you, “I-Robots, performing tasks at incredible speeds and accuracy. You show up to work and either review their performance, reset, group and/or change task depending on current throughputs. There would then be only one issue at hand: Employer’s liability or rights to shared productivity and performance gains in some form of legally bound monetary form.
    In an ethical world, that shall be the rule for current personal records, biometrics their dissemination, sharing, intrusion and at risk data use and collected with or without consent.

  • Why not help employers save costs by bringing back slavery? That goes hand in hand with giving employers the right to start eugenics programs to weed out undesirables like people with disabilities. After all it’s survival of the fittest.

  • I’m a programmer. They can try to violate me in this manner…..won’t work out too well. I would simply leave my company, go freelance, and become their competition…make my day punks.

    • I highly doubt if you could start your own business, you would go and work for someone else. Stop blowing smoke! You made my day! LOL!!

    • Anthony, please let me know when you decide to go on your own, and how I am able to contact you, because we both have the same response to this destruction of our nation as we have created, and has been usurped by the most reprehensible individuals who have ever taken our nation and made it their own personal regime with an evil presence that is the “leader.”

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