The Genetic Information Nondiscrimination Act, or GINA, was a unicorn in the divided climate of US politics. GINA made it illegal for employers and other groups to discriminate against people based on their genetics, and to require or even ask for genetic tests, or to hand over the results of previous tests in many contexts. Signed into law by George W. Bush in 2008, it passed with a near-unanimous vote of 414-1 in Congress.
Now, Republicans in Congress are pushing a new bill that would gut some of GINA's strongest protections for workers, leading experts to worry that employees may be put in situations where they will have to show their boss their entire genome—or else.
One can imagine a future scenario where an employer might not want to hire someone to be an actuary because they show a genetic predisposition to developing Alzheimer's. But as any geneticist will tell you, DNA is not destiny.
The bill, called the Preserving Employee Wellness Programs Act, says that if a workplace wellness program is in compliance with the Public Health Service Act, then it should automatically be considered to be in compliance with GINA. In practice, this clever provision would mean that protections for employees under GINA when it comes to workplace wellness programs would no longer apply. The bill passed a House committee this week with all Republicans supporting and all Democrats opposing.
For workplace wellness programs, GINA requires prior consent from employees that genetic information be anonymous, and that only the employee and a medical professional actually get to see the test results. Also under GINA, genetic tests for wellness programs must be totally voluntary. But if GINA no longer applies to such programs, thanks to the Preserving Employee Wellness Programs Act, then these protections would no longer exist.
"They're completely undermining any protections," said Derek Scholes, director of science policy for the American Society of Human Genetics, which opposes the bill. "If you call it a workplace wellness program, you can ask what you like."
There's also the non-trivial risk that rolling pack protections for people when it comes to genetic testing would have a chilling effect on real science, Scholes said. For example, former President Barack Obama's Precision Medicine Initiative to combat cancer will ask more than one million participants to submit genetic information.
"It will be difficult to enroll people into this initiative while Congress is removing protections that GINA provided to them at the same time," said Schols. "One of the reasons for GINA was that you could participate in research without the fear that the results from that research could be used against you.
"This bill would allow employers to mandate through a wellness program that employees divulge results from such research, or pay a penalty," he continued.
Since it's just passed a committee, the Preserving Employee Wellness Programs Act has a long way to go before it has a real chance of becoming law. But, if approved, it would put the US behind its international peers when it comes to genetic protections.
Until this week, when it passed a genetic non-discrimination law similar to GINA, Canada was the only G7 country without strong protections for DNA.
Soon, the US could have that dubious honour.
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