Just Launched: A New Advocacy Center for ASHG

Posted By: Jillian E. Galloway, Science Policy Analyst at ASHG

We are delighted to announce that ASHG has a new online Advocacy Center! Developed with members’ needs in mind and the Society’s desire to become more involved in policy and advocacy, the site provides tools and channels for members to learn more and share their views directly with legislators.20171013_advocacy-center

The Advocacy Center makes it easy for members to take action by sending customizable messages to Congress on important science policy issues. Members and others can also stay current with press releases and news clips related to ASHG advocacy activities, read recent letters and comments to policymakers, explore blog posts related to policy and advocacy, and check out helpful tools and resources.

ASHG advocates for policies consistent with its policy platform that support scientific discovery, the translation of scientific discoveries into health advances, and the appropriate application of genetics within society. We further support policies that advance the understanding of genetics by healthcare professionals and the public.

To reach these goals, we need your help! Visit our Advocacy Center to connect with Capitol Hill and get your voice heard on a number of significant issues, including supporting NIH funding and opposing genetic discrimination!

Jillian E. Galloway, MS, is a Science Policy Analyst at ASHG. Learn more about ASHG’s activities in Policy & Advocacy.  

Remote Platform Presentation Due to U.S. Travel Restrictions

Posted by: Nancy Cox, PhD, ASHG President

One of our colleagues selected to give a platform presentation at ASHG 2017 will not be able to join us in Orlando. Arvin Haghighatfard, a graduate student at the Islamic Azad University, is unable to travel from his home in Iran due to new restrictions on travel to the United States.

Throughout my presidency this year, I have spoken out about how the new rules limiting travel to the United States threaten to undermine scientific progress both in the U.S. and elsewhere in the world. Science is an inherently international endeavor and the Society strongly opposes the imposition of undue restrictions on scientists’ travel. As an organization representing human genetics specialists worldwide, we consider international travel a major and integral part of our enterprise.

The difficulties that Mr. Haghighatfard has experienced are exactly the kind of situation we feared. Upon learning of his unfortunate experience, we contacted the Department of State on his behalf to raise our concerns, but without success. Given these exceptional circumstances, I believe it is important that we provide Mr. Haghighatfard the opportunity to present his work, so we have arranged for him to conduct his presentation remotely.

I fear that there may also be other geneticists in Iran or elsewhere who cannot attend the meeting because of the travel restrictions. When we gather in Orlando later this month, I hope we spend a moment to think of those in our global genetics family who are unable to join us.

Nancy Cox, PhD, ASHG President, directs the Vanderbilt Genetics Institute and is a Mary Phillips Edmonds Gray Professor of Genetics. She is also the Director of and a Professor of Medicine in the Vanderbilt Division of Genetic Medicine.

NIH Budget Update and ASHG Advocacy

Posted by: Derek Scholes, ASHG Director of Science Policy

Every year, Congress is required to pass legislation to determine funding levels for federal agencies for the upcoming fiscal year. It is through such ‘appropriations’ legislation that the annual budget for the National Institutes of Health (NIH) is established. The fiscal year (FY) runs from the beginning of October to the end of September the following year, meaning that FY2018 starts next week.

So, since NIH funding is so fundamental for genetics research, what does funding look like for the NIH in the next year? The quick answer is that we do not know and will likely not know for several months. But here is what we do know…

Rally-Med-Res-2017-Cardin
ASHG joined the Rally for Medical Research this month to advocate for increased NIH funding.

Congress has not been able to complete its FY2018 appropriations work, and will not be able to do so by the time the new fiscal year starts next week. To address this, Congress has passed a stopgap ‘Continuing Resolution’, or CR, that continues to provide funding for government agencies until December 8. Essentially, it means that, for the time being, the NIH and other government agencies will continue to operate at approximately the same budget levels as for FY2017.

The CR buys extra time for the U.S. House of Representatives and Senate to finalize the FY2018 budget. While it is difficult to predict what NIH’s budget will be, there are encouraging signs of bipartisan support to increase its budget from its FY2017 level of $34.1 billion. The House has approved legislation that includes a $1.1 billion increase; over in the Senate, the Committee on Appropriations has crafted legislation that would give NIH a $2 billion increase. These actions by Congress are in stark contrast to the proposal of President Trump’s administration, which is for an unprecedented cut of $7.2 billion.

Funding proposals for NIH in FY2018
FY2017 Administration Request House Senate Appropriations Committee
$34.1 B $26.9 B (- $7.2 B) $35.2 B (+ $1.1 B) $36.1 B (+ $2 B)

(B = billion; italicized numbers indicate difference compared with FY2017.)

ASHG recognizes that we need robust, predictable, sustainable federal funding of biomedical research to fuel scientific advances, and is supporting the $2 billion increase proposed by the Senate. Earlier this month, the Society joined many other scientific and patient advocacy organizations in the Rally for Medical Research, a Capitol Hill Day event to advocate for continued NIH funding and, in particular, this $2 billion increase. As a member of the Federation of American Societies for Experimental Biology (FASEB), ASHG is also partnering with other FASEB member societies to advocate for a funding increase this year.

We’ll provide an update when Congress finalizes NIH’s FY2018 budget. In the meantime, I am excited to share that ASHG is currently building a new online Advocacy Center, which will help you speak out and contact your members of Congress about NIH funding and other issues of concern to Society members. More on that to come soon!

Derek Scholes, PhD, is Director of Science Policy at ASHG. Learn more about ASHG activities in genetics policy and advocacy on our website.

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.