A New Policy Platform for ASHG

Posted by: Derek Scholes, PhD, ASHG Director of Science Policy

We are delighted to announce that ASHG has a new policy platform! Developed with the help of members and approved by the Board of Directors, the platform articulates where ASHG stands on a variety of policy issues – which issues are of key importance and our positions on those issues. It will provide direction for the Society’s policy and advocacy activities, and will be essential for communicating our policy perspectives to lawmakers and other stakeholders.

The platform covers four different policy categories that collectively capture the broad scope of ASHG’s policy interests. They are the conduct of genetics research, genetics in healthcare practice, societal uses of genetics, and the teaching of genetics and genetic literacy. Within each of these categories are highlighted a number of key issues, together with relevant statements that the Society has published. We define key issues as those that are consistent with our mission and where we can have an influential role.

Altogether, 17 key issues are listed. Of course, it will not be possible to address all of these at the same time. Rather, we’ll focus our energies according to the evolving policy environment and the prevailing needs of members. For example, in the past month, we’ve partnered with other societies within the Federation of American Societies for Experimental Biology to advocate for increased funding for biomedical research on Capitol Hill, especially timely given proposed cuts to NIH funding by the Trump Administration. We have also been drumming up opposition to the Preserving Employee Wellness Programs Act (H.R.1313), a bill introduced last month that would fundamentally undermine important provisions in the Genetic Information Nondiscrimination Act. Plus, we’ve been speaking out about the potential impact of proposed new travel restrictions to the U.S. on the international scientific community and the research enterprise.

In order to be successful in any of these advocacy activities, we need your help! To facilitate this, we have created a new Take Action page. Currently, you can visit the page to sign on to a letter opposing H.R.1313 and also let us know how the proposed immigration restrictions are impacting you. We’ll keep you updated as we continue to develop this.

Derek Scholes, PhD, is ASHG’s Director of Science Policy. For questions regarding ASHG’s policy and advocacy activities, email policy@ashg.org.

Sign on to ASHG Letter Opposing H.R.1313 and Protect GINA

Posted by: Derek Scholes, PhD, ASHG Director of Science Policy

20170419_HR1313-letterAs 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.