Posted by: Derek Scholes, PhD, ASHG Director of Science Policy
As you may have heard, a bill called the Preserving Employee Wellness Programs Act (H.R.1313) was introduced last month in the U.S. House of Representatives. If passed, this bill would fundamentally undermine the privacy protections of the Genetic Information Nondiscrimination Act (GINA), a 2008 law ensuring (among other things) that a person can take a genetic test or volunteer to participate in genetic research without fear of having to share this information with their employer. This is an important protection within GINA: if employers can’t access their employees’ genetic information, they can’t discriminate on the basis of that information.
Unfortunately, H.R.1313 would effectively repeal this protection by allowing employers to coerce employees into sharing their genetic test results or family history, or even to require them to undergo genetic testing. By undermining the Americans with Disabilities Act, the bill would also empower employers to require their employees to divulge other health information. Employees who decline to share their genetic and health information could be penalized thousands of dollars, such as through increased health insurance premiums.
In order to stop H.R.1313 being passed, we must show Congress how strongly the genetics community opposes it and why GINA remains important to genetics research and medicine. To preserve GINA’s protections, we urge you to add your name to our geneticist sign-on letter opposing H.R.1313 by May 1. Over 800 genetics specialists have signed on so far. We plan to share this letter with Congress when the bill is next taken up for discussion.
Want to do more? Here’s how:
- Call or email your members of Congress to urge them to oppose this bill. If you’ve never called an elected representative before, these tips may be useful.
- Spread the word about the bill and why you oppose it, such as by submitting a letter to your local paper. Our press release and list of news clips are a good place to start.
- Share our letter with your genetics colleagues and urge them to sign on as well.
Thank you for taking action!
Derek Scholes, PhD, is ASHG’s Director of Science Policy. To get more involved in ASHG’s advocacy efforts, check out our Take Action page.