Making the Case for Human Genetics and Genomics Research

Lynn Jorde, PhD
Lynn Jorde, PhD

The pandemic and challenges of the past year have made clear how much science and research can impact every aspect of society, from public health and health equity to the economy. It is now more important than ever for scientists to engage with the public, including policymakers. The Government and Public Advocacy Committee (GPAC) is therefore implementing a strategy for the Society to engage with policymakers to convey the benefits of genetics and genomics research and the need for policies that are supportive of the scientific enterprise.

The recently released ASHG-TEConomy report, “The Economic Impact and Functional Applications of Human Genetics and Genomics,” is part of the Board-approved Action Plan aimed at the aforementioned goal. The report takes a quantitative look at the economic impact of human genetics and genomics, alongside an extensive review of its health and societal impacts. The Society hopes the report will be a valuable resource for members and the broader genetics community in advocating for genetics and genomics research. Indeed, with Congress’ interest in economic data, ASHG sponsored a congressional briefing to inform congressional offices about the major findings of the report in making the case for the value of federally funded research. A recording of the briefing and summary materials is available at ASHG.

Another goal of GPAC’s Action Plan is to increase members’ engagement with Congress. In April, ASHG hosted its first-ever Capitol Hill Day. Armed with early data from the ASHG-TEConomy report, GPAC members, ASHG President Gail Jarvik, and other volunteer committee leaders met virtually with key congressional offices to advocate for NIH funding. We also urged the offices to support relief funding for labs disrupted by COVID-19, as well as support for diversity and equity efforts in both the research workforce and participants.

Continuing to build on the success of Capitol Hill Day and the briefing, in May Dr. Jarvik submitted written testimony to Congress on behalf of ASHG, recommending a $46.1 billion budget for the NIH for Fiscal Year (FY) 2022, an increase of $3B over this year’s funding. The testimony includes economic impact data from the ASHG-TEConomy report and emphasizes the Society’s policy priorities in diversity, equity, and inclusion in the workforce and research cohorts.

In addition to this work, the committee is actively monitoring a number of developments in Congress of interest to the genetics and genomics community:

  • President Biden has proposed a major increase in funding for the NIH and the creation of a new NIH agency, the Advanced Research Projects Agency for Health (ARPA-H).
  • The Senate Committee on Commerce, Science, and Transportation, recently advanced Eric Lander’s nomination for Director of the Office of Science and Technology Policy. He has now been confirmed by the Senate. In March, the Society sent a letter to the committee in support of Dr. Lander’s confirmation and applauded the President for elevating the position to Cabinet level for the first time.
  • The U.S. Innovation and Competition Act (USICA), previously called the Endless Frontier Act, is a bipartisan bill in the U.S. Senate that seeks to address America’s competitiveness in research and technology. If passed into law, the legislation would greatly increase funding for the National Science Foundation for a directorate focused on technology. There are also a number of other provisions in the bill that affect biomedical research, including a provision for the NIH to develop a framework for ensuring the security of human genomic information in consideration of national security risks.

As the annual appropriations process for setting funding levels for the NIH begins in Congress, ASHG will continue to engage with Congress and update members on important legislative issues on the horizon. I encourage members to visit ASHG’s Advocacy Center and subscribe to the ASHG Advocate Update for
news and developments on important policies.

-Lynn Jorde, PhD, is the Chair of ASHG’s Government and Public Advocacy Committee

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