Federal laws and policies have a major influence on genetics and genomics research and translation to advances in the clinic and the broader society. It is therefore imperative for ASHG to have a strong voice in how such laws and policies are developed and implemented. Recognizing this, the Society’s public policy and advocacy agenda has grown significantly in recent years. This is reflected in the incorporation of advocacy in Strategic Plan goals and objectives, the launch of the Perspectives series, the development of a policy platform articulating the Society’s positions on key issues, the formation of the Government and Public Advocacy Committee (GPAC) to guide the Society’s ongoing advocacy work, and the development of the ASHG Advocates program to facilitate member engagement in advocacy.
Recognizing significant changes in the external policy environment since the policy platform was first developed, this year the Board of Directors tasked the GPAC with revisiting this platform to ensure that the Society’s advocacy can best serve members’ needs and advance the field. Accordingly, over the past several months the GPAC has examined the wide range of policy topics that touch or influence genetics. The committee undertook this task in partnership with ASHG’s new government relations consultants, Lewis-Burke Associates, so that the GPAC could better understand the policy environment in Washington, DC and anticipate the issues that the U.S. Congress and the Administration will be focusing on in 2021 and beyond.
With the guidance of the GPAC, ASHG’s Board has now approved a revised policy platform. The new platform will be instrumental in guiding the future policy and advocacy work of the Society. It will allow ASHG to be well-positioned to take advantage of opportunities and be prepared to face challenges that will arise in the next Administration and the new Congress. It will allow us to build ever stronger partnerships with other genetics specialist societies and the broader biomedical research community on issues of common concern.
Funding for Genetics and Genomics Research Robust, predictable, sustainable federal funding remains crucial for ASHG members to advance genetics and genomics research. ASHG will continue to advocate for increases in NIH funding for genetics and genomics before the new Administration and Congress, ensuring that policymakers understand the value and potential of human genetics research to benefit people everywhere. In doing so, we will continue to emphasize that the overwhelming majority of Americans support increased federal funding for genetics research and believe it to be important in improving their families’ health, as revealed in the recent public survey conducted with Research!America.
Diversity in Research Cohorts and Workforce Reflecting the broader diversity, equity, and inclusion directives embedded throughout ASHG’s 2019 Strategic Plan, the revised policy platform includes a greater focus on diversity in genetics research cohorts and in the scientific workforce. This includes helping policymakers understand how cohort diversity can ensure that genetic advances benefit all and help reduce healthcare disparities, and how the science benefits from a more diverse research workforce. The Society will strengthen partnerships within the broader biomedical community, at NIH and in Congress to advance policies that diversify the scientific workforce and drive, support, and incentivize diverse population participation in research.
Protecting Research Participant Privacy The genetics and genomics research community is at the forefront of sharing and leveraging data to advance science and health. This progress must be intertwined with an assurance of data privacy for research participants as articulated in an ASHG Perspective published last year. In the aforementioned survey, respondents revealed concerns over the privacy and confidentiality of their information to be important factors influencing whether they participate in genetics research. To encourage broad public participation in research, ASHG will continue to promote privacy protections for research participants. The Society will also continue ensure robust implementation of the Genetic Information Nondiscrimination Act (GINA) to guard against the misuse of genetic findings.
In addition to on these priorities, the Society will maintain its policy work on other fronts, including on germline genome editing and on issues impacting researchers and the scientific enterprise. It will seek to support policy goals of partner societies, including the National Society of Genetic Counselors’ pursuit of Medicare coverage for genetic counseling services. The revised policy platform also includes examining issues of race and ancestry, building on the Society’s previous work in this area.
As the world’s largest genetics society, ASHG members are the true drivers of change on policies that affect the community both collectively and individually. ASHG will continue to work on building opportunities and resources to facilitate ASHG Advocates taking action in pursuit of this policy agenda. Contact the staff at policy@ashg.org to let us know how we can better serve you.