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.
LOVE IT. Genetics are all fun and games until your boss finds out your momma was a leper.
Despite the heavy financial pressure, employee participation is still considered voluntary. Under HR 1313, GINA wouldn’t apply to anything voluntarily collected through wellness programs, and companies would have access to genetic data. That information would be stripped of identifiers, but in small companies, it could be fairly easy to match certain genetic profiles to specific employees.
Moreover, employers tend to hire third parties to collect and manage health data. These companies are not heavily regulated and can review genetic and other health data with identifiers. Some of the companies even sell health information to advertisers, STAT notes.
Read the HR 1313 bill on congress.gov →