On May 11, 2022, ASHG hosted its second (virtual) Capitol Hill Day. This event brought together 21 Society members from the ASHG Board of Directors, the Government and Public Advocacy Committee (GPAC), and trainee advocates from the Advocacy Certificate for Human Genetics and Genomics Trainees (ACGT) program. ASHG advocates shared the value and progress of human genetics and genomics research and called upon members of Congress to support three key policies: sustained, robust funding for the National Institutes of Health (NIH), efforts to diversify participation in human genetics research, and responsible, broad data-sharing.
ASHG’s Capitol Hill Day was organized by the GPAC as part of the Board-approved Action Plan. As a GPAC-led initiative, Hill Day participation is a key feature of the ACGT program. Several ACGT advocates shared their reflections on this event and how trainees can participate in advocacy.
“As a student, there are few opportunities one gets to partake in advocacy work. This experience enabled me to learn from my peers and interact with our government in support of important policies. I truly appreciated being able to talk about health equity and the need for increasing diverse participants in genetic research.” – Yusra Aziz
“My Hill Day experience was great. I learned how to use key data to simply convey why genomic research is important to U.S. government officials, its impact on our economy and how it can improve the health of people. Furthermore, it was important to express how government officials can help keep genetic data secure, make data ethically sharable, and improve engagement and involvement of diverse people from all backgrounds. I am grateful for this experience because law and policy greatly impact genetic research studies and those who work in this area. Now, I am more knowledgeable on ways to properly engage with government officials at the state level.” – Rene Begay
“I was incredibly excited to volunteer with ASHG’s Hill Day this year! Participating was valuable to me not only because I got to actively contribute to advocacy at the federal level, but also because I learned how to combine useful statistics with personal experience to create the most impactful message for policymakers. I felt like my perspective as a trainee was meaningful to the message we were trying to get across, and it was rewarding to get to speak with people who actually contribute to decision-making. I enjoyed meeting and working with other ASHG members interested in promoting advocacy in genetics and genomics, and I hope to use what I learned to continue participating in advocacy activities!” – Christina Del Greco
“Participating in the 2022 ASHG Hill Day was an especially enriching and informative experience. I was encouraged by the enthusiasm that policymakers have for advancing genetics and genomics research initiatives. Hearing their commitments to support NIH efforts to increase diversity within human genetics research further inspires me to continue my own research efforts focused on minority populations!” – Kimberlyn Ellis
“Participating in my first Hill Day was, at first, daunting. I didn’t know exactly what to expect and was a bit nervous! However, once the meetings began those nerves turned into excitement. It was eye-opening to be able to have genuine conversations with legislative staff and made me realize that the staffers really do want to support and learn from their constituents. It was clear to me that hearing stories about when we witnessed advances in genetics helping people in their communities was particularly impactful and made a personal connection to our advocacy efforts. Being able to participate in ASHG’s Hill Day gave me a great appreciation for how much goes on behind the scenes when advocating for specific legislation or for support for organizations, and how important it is to have these conversations with our legislators.” – Sofia Horan
“Gaining insight into how the ASHG performs policy and advocacy work by attending Capitol Hill Day was a fascinating experience. I was particularly interested in advocating for increased funding for diversity in genomics research and was pleased to learn both Republican and Democrat Senators and Representatives of the House were interested in learning more. This resulted in some great discussions centered on how genomics research has advanced our understanding of human health and disease. I especially enjoyed describing the latest COVID-19 research findings, the importance of federal initiatives like the NIH All of Us Research Program, and how researchers like myself are developing new molecular toolkits to identify genetic drivers of disease.” – John Morris
“ASHG’s Hill Day was the perfect opportunity to experience one of the ways that our society realizes its impact. It seemed slightly overwhelming coming in with little experience in the policy realm and little in-depth knowledge of the particulars and history of NIH funding. However, I felt well-supported by the rest of our group in each meeting and was surprised how much my personal experiences (such as receiving NIH grants to further my own scientific training) would be valuable in communicating the importance of NIH funding to the continued progress of biomedical research in the US. Now that I better understand how these meetings work, I would be quite interested in participating in similar events in the future, whether through ASHG or another professional society advocating for similar goals.” – Kenny Westerman