Legislation would require workers to submit to genetic testing despite privacy concerns.
Employees enrolled in workplace wellness programs would be penalized for refusing to submit to genetic testing, according to a bill that passed a U.S. House committee earlier this month. The legislation would also make it easier for employers to access the results of those tests and harder for workers to contest subsequent discriminatory actions.
Introduced by Rep. Virginia Foxx (R-NC), the Preserving Employee Wellness Programs Act allows employers to charge higher insurance premiums — as much as 30 percent more — to employees who refuse to submit to the tests. With an average annual insurance premium of $18,142 for a family under an employer-sponsored plan, according to the Kaiser Family Foundation, the penalty for noncompliance could be as much as $5,443.
Supporters, including the American Benefits Council, argue that the bill would improve workers’ health and reduce company healthcare costs while streamlining the regulatory process. “We want to ensure working families can continue to benefit from these voluntary programs, and so did the Obama administration,” Bethan Aronhalt, a spokeswoman for Foxx’s Committee on Education and the Workforce, told the New York Times. “This legislation will reaffirm existing law and provide regulatory clarity so that employers can have the certainty they need to help lower healthcare costs for their employees.”
But critics say the bill is designed to coerce employees to turn over private medical information that could be used against them. In a letter to Foxx, a collection of patient advocacy and privacy groups, including AARP, the American Diabetes Association, the American Academy of Pediatrics, and the National Women’s Law Center, stated that they “strongly oppose any legislation that would allow employers to inquire about employees’ private genetic information or medical information unrelated to their ability to do their jobs, and to impose draconian penalties on employees who choose to keep that information private.”
The bill essentially overrules GINA, a 2008 law signed by President George W. Bush prohibiting employers or insurers from forcing workers to submit to genetic tests and using the data collected to make employment or coverage decisions. And by shifting regulatory oversight from the Equal Employment Opportunity Commission — which has sought legal remedies against companies that have breached employee privacy — to a diverse collection of federal agencies, the legislation would leave workers with little protection against unlawful use of their health information.
As Jennifer Mathis, director of policy and legal advocacy of the Bazelon Center for Mental Health Law, told the Times, “It just takes away the workplace protection.”
Facing fierce opposition from House Democrats, the bill is likely to come under intense scrutiny as it moves through various committees on its way to a potential vote on the House floor. If it fails to advance, the legislation could be tucked into the larger Republican healthcare plan.
Lost within the larger debate are concerns about the accuracy of genetic testing as a measure of overall health and the long-term risk of disease. To better understand its benefits — and liabilities — see “Is Genetic Testing Right for You?” in our December 2016 issue.