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.

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 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; 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.
• 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. 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 genetics and genomics research; the 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.
2. Establish Capacity for State Level Policy Positions and Engagement
   The Society needs to not only monitor policy developments in the U.S. Congress but also to track state legislatures too, given that some key policy areas are determined at the state level.
   1. Monitor issues at the state level and provide resources
      Ensure that ASHG’s policy agenda addresses key issues at the state level and track related state-level legislation. Provide resources for members to engage with state lawmakers and local media on legislation.
3. 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
      • ‘Success Stories’ fact sheets conveying research advances
      • major report 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
      Build an advocates training program for members (potentially focused on early-career scientists) focused on existing national agenda topics that includes (a) year-round interactive programming to train members to be effective advocates, (b) advocate recognition program, and (c) an more robust online Advocacy Center and regular e-updates fostering and facilitating membership engagement in advocacy.
4. 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.
   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
      • establishing a legislative caucus to inform Congress on the value of genetics and genomics and relevant policy issues
      • 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)