Government & Public Advocacy Committee Action Plan

In April 2020, the Board of Directors approved this Action Plan and a phased implementation of the listed activities over the next three to five years in support of the Strategic Plan. The activities will be reviewed by the Board for funding on an annual basis.

In December 2023, ASHG released a refreshed Strategic Plan. This Action Plan was refreshed in support of the Strategic Plan and approved by the Board of Directors on April 25, 2024.

Strategic Issue:

ASHG envisions a world in which people everywhere realize the benefits of genetics and genomics research and seeks to advance understanding and appreciation of that research to advance science, health and society. To achieve this vision, the Society must engage with policymakers and other influencers to convey consistently the benefits of genetics and genomics research, as well the need for policies that are supportive of rigorous and responsible research and the appropriate use of genetics and genomics knowledge. Based on its Strategic Plan, ASHG will pursue strategies that consistently increase awareness of and support for the value of genetics research among policymakers. Through its leadership and broader membership, it will speak out visibly and consistently on key policy issues that advance the benefits of research and its responsible application. As the largest membership organization of researchers, ASHG is well-positioned to become a powerful voice for the genetics research community before lawmakers.

Desired Outcomes:

• ASHG’s policy agenda is supported and adopted by the U. S. Congress and federal and state agencies, including funding for genetics and genomics research; practices that advance the responsible application of new genetics knowledge; privacy protections for research participants; policies that deter stigmatizing research; and policies that enhance diversity and inclusion in the scientific workforce and within research cohorts.
• ASHG increases its visibility so that it is a sought-after voice on priority genetics and genomics public policy issues that advance research, health, and society. On select ASHG policy priorities, ASHG is a collegial and increasingly influential policy and advocacy partner with other identified allied societies, patient groups, nonprofits, and private sector industry participants.
• ASHG member activity in advocacy grows and ASHG members value ASHG’s policy and advocacy programming as part of their membership. ASHG Members and policymakers regard ASHG as a go-to resource and engage in ASHG advocacy learning and mobilization.

Guiding Principles:

• ASHG’s advocacy work is consistent with the policy agenda determined by the Board, action-oriented, and responsive.
• ASHG believes it can be most impactful by principally focusing on advocacy in the United States, while seeking opportunities to partner with other genetics societies across the world.
• ASHG regularly seeks membership engagement in advocacy activities.  ASHG regards engagement with policymakers as imperative and recognizes that advocacy engagement increases membership connections and public trust.
• ASHG advocacy and policy efforts are based on evidence and sound science.
• ASHG advocacy highlights the work of members and shares scientific advances. It highlights research on the potential benefits of genetics and genomics approaches and their responsible application in research, health care, and society.

Action Plan:

1. Congressional Engagement
   To increase its influence in Congress on behalf of its members, ASHG needs to raise the profile of the Society in Congress and to educate members of Congress and their staff regarding the promise of genetics and genomics research. This will be most effective with the regular engagement with Congress and broad participation of the membership. ASHG will maintain a current list of key members of Congress and their interests for coordinated outreach.
   1. Programs to enhance engagement with Congress
      Pursue an advocacy strategy to advance ASHG’s policy agenda through staff and member engagement with Congress and relevant administration leadership. Partner with other genetics and genomics groups on:
      • congressional briefings on genetics and genomics research discoveries and their translation to health advances
      • an annual Capitol Hill Fly-In to engage members of Congress on the value of genetics and genomics (such as when Congress is crafting annual spending bills)
      • hold annual virtual Capitol Hill Meetings to communicate the impact of human genetics and genomics and federal research funding
      • establishing a legislative caucus to inform Congress on the value of genetics and genomics and relevant policy issues
2. Enhancement of Member Advocacy
   ASHG’s 8,000 members are among its most important differentiating strengths for advocacy. The advocacy voice and political influence of the Society is greatly enhanced when members are speaking out on the Society’s policy priorities. Currently most members have limited experience with advocacy and do not have all the resources to take action most effectively. Members need tools, training, and opportunities to participate.
   1. Development of member advocacy toolkit
      Create a toolkit of resources facilitating member engagement in advocacy with policymakers, including:
      • ‘how to’ guides on the different ways to be an advocate
      • ASHG member training webinars on how to be an advocate
      • ‘Success Stories’ fact sheets conveying research advances
      • reports on the economic and health benefits of genetics and genomics research
      • compelling points to make to policymakers and the media on ASHG’s policy issues
   2. Membership training program
      Continue programming of the Advocacy Certificate for Human Genetics & Genomics Trainees (ACGT) for trainee ASHG members who are interested in pursuing a research or clinical career to train them to be advocates for human genetics and genomics research. Year-round programming to include existing national agenda topics. Build a more robust online Advocacy Center and regular e-updates fostering and facilitating membership engagement in advocacy.
3. Build relationships with partner organizations, including patient advocacy organizations, to strengthen ASHG’s advocacy impact.
   To maximize the advocacy voice of the Society, ASHG will seek to increase the network of advocates to communicate the impact of genetics and genomics research and its translation to Congress. In addition, the Society will support general efforts that address support for science overall in society and Congress, especially to foster trust in science and to make support for scientific research bipartisan.
4. Defining and Refining ASHG’s Policy Positions and Priorities
   To influence policy, ASHG needs to maintain an active agenda – defining its priorities and issuing public statements articulating its policy positions.
   1. Refinement of Society’s Policy Agenda
      Periodically review, amend, and affirm the Society’s federal policy agenda, such as before the beginning of a new Congress or Administration; define where ASHG will lead, partner, follow, and monitor, and the programming needed to pursue the agenda. Primary policy priorities will be funding for rigorous genetics and genomics research; the ethical and responsible application of new genetics knowledge; the genetic privacy and confidentiality of research participants; and diversity and inclusion in the scientific workforce and research cohorts.  Topics that are better suited for leadership from other, peer societies shall be referred to them, with more limited support and engagement by ASHG as resources allow.
   2. Policy Perspectives and other Statements
      Publish Executive Committee Perspectives and other statements to articulate and advance ASHG’s policy positions.