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.
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"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.