House Republicans would let employers demand workers’ genetic test results
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....
“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 got virtually everything they wanted for their workplace wellness programs during the Obama administration. The ACA allowed them to charge employees 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....
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.
... 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 a result, employers could demand that employers 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.
