Government and Public Advocacy Committee Demonstrates Value of Human Genetics to Policymakers

The Government and Public Advocacy Committee (GPAC) met in 2020 to create its action plan. The resulting plan enables the Society to consistently convey the benefits of genetics and genomics research to policymakers and other influencers, and conveys the need for policies supportive of research and the appropriate use of genetics and genomics knowledge. The Board approved this action plan, and the committee has made great headway in 2020. GPAC initiatives include revisions to the ASHG policy platform, the Policy Forum and Networking Session at the 2020 ASHG Virtual Meeting, and the continual release of ASHG Perspectives and Success Stories. In 2021, the committee will continue existing programs while implementing new endeavors.

Report on the Economic Value of Genetics and Genomics

Revisions to the Policy Platform

Due to significant changes in the external policy environment since the previous ASHG policy platform was developed, GPAC developed recommendations to ensure that the Society’s advocacy can best serve members’ needs and advance the field. Recommendations include funding for genetics and genomics research, diversity in research cohorts and workforce, and protecting research participant privacy. Read more about ASHG’s policy platform updates here.

Recommendations to the NIH Budget

ASHG has joined the broader biomedical research community in recommending $46.1 billion for the NIH in Fiscal Year (FY) 2022. In addition, the community is advocating for an additional $15.5 billion in emergency supplemental funding, with $10 billion to be used for research relief related to COVID-19 disruptions. GPAC Chair Lynn Jorde, PhD and incoming Chair Katrina Goddard, PhD participated in the 2020 Rally for Medical Research to advocate for increased funding for the NIH.

ASHG Perspectives

The committee continually releases ASHG Perspectives and other statements to articulate and advance ASHG’s public policy positions. One of the latest ASHG Perspective, “Advancing diverse participation in research with special consideration for vulnerable populations” was developed in partnership with the co-chairs of the Professional Practice and Social Implications Committee, Kyle Brothers, MD, PhD, and Sarah Tishkoff, PhD, and Diversity and Inclusion Task Force chair and Board member Dana Crawford, PhD. GPAC will consider the topics raised in the discussions on the policy platform for future Perspectives. Read the most recent ASHG Perspective, “How science will help us move forward in 2021“.

Success Stories

To provide ASHG members with resources and talking points to engage with their representatives in Congress, GPAC releases a series of fact sheets, called “Success Stories“, which highlight for Congress major advances in basic and clinical research on topics such as: rare diseases, gene editing, noninvasive prenatal genetic screening, cancer, and innovation in sequencing technology.

Virtual Hill Day April 22, 2021

The Society will host its first ever Capitol Hill Day in April. GPAC members will meet with congressional leaders to convey the impact of genetics and genomics research on human health and establish a connection with their lawmakers.

Virtual Briefing with ACMG

Following the successful first congressional briefing about the Undiagnosed Diseases Network, ASHG and ACMG will continue to inform Congress on the importance of genetics and genomics research and medicine through this series of briefings.

The committee will continue its impact in 2021 with a report on the economic value of genetics and genomics research, and continuing programs which encourage ASHG’s policy agenda to be supported and adopted by the U.S. Congress and federal and state agencies, increasing the Society’s visibility, and growing ASHG member activity in advocacy.

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