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Bill allows employers to require employees to submit genetic testing results

Scottie Lee Meyers

Wisconsin Public Radio

A new bill by House Republicans that allows businesses to require their employees to submit personal genetic information is setting off concerns about privacy and the future of life-saving scientific research.

As Republicans push a new health care law forward to replace the Affordable Care Act, a lesser known bill is making the rounds in Congress. HR 1313 would allow companies to ask their employees to undergo genetic testing and supply that information to the employer or face a penalty for not complying.  

The bill passed a House committee vote Wednesday with all 22 Republicans supporting it and 17 Democrats opposing it.

STAT science writer Sharon Begley said a 2008 federal genetic privacy and nondiscrimination law known as GINA protects employees from genetic information requests from their employer.

"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," Begley wrote.  

Employers across the United States have embraced workplace wellness programs, but typically they're not this controversial, said Begley. Oftentimes it may mean healthier food options in the cafeteria or on-site flu shots.  

"The bill currently moving through Congress stipulates that if an employee is covered by one of these workplace wellness programs and is asked to provide genetic information, that employee must do so," Begley said.

Employees who opt out could risk paying penalties through their insurance premium rates or higher deductibles and co-pays. Begley said the costs could "easily run into the $5,000 range."

The bill has seen support from large corporate groups that seek out information about their employees as a way to manage insurance costs. The American Benefits Council, a group of mostly Fortune 500 companies, recently testified in favor of the bill.

"The reason seems to be that they are just looking for lots of ways that they can claw back some of the health care spending that they already do on employees," Begley said. "So if they can ding you by $500 a month because you choose not to participate, that money all goes to their bottom line."

The bill would also allow employers to obtain genetic information from popular online services like 23andMe, a biotech service that allows people to explore their genetic ancestry.

In her reporting for the story, Begley said several scientists told her they're afraid the bill will discourage people from participating in critical studies, fearing results could eventually be used against them by their employers.

"They are just terrified that if this bill becomes law, and even as it's written about, that people who might otherwise be willing to participate in studies to advance scientific understanding and are told by the researchers, 'Don't worry, the information we collect on you for our research will never see the light of day.' Well, if this bill goes through, that is all out the window," Begley said.

Under the bill, names would be stripped from the genetic testing results. But Begley said it's "fairly easy" to trace the information back to an employee, particularly in small businesses.

Additional concerns have emerged after outside companies managing an employer's wellness program have sold information to third parties. Begley said employees who indicated they were interested in one day getting pregnant or wanted to spend more time jogging were getting advertisements for diapers or running shoes.

Begley added there's also a fear an employer would use genetic information to learn about any potential predisposing conditions that might be seen as costly to cover down the road, and thus finding a way to fire someone or not hire them in the first place under the guise of workplace performance.

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