In May 2023, ASHG hosted a third year of virtual advocacy meetings with policymakers on Capitol Hill. The week-long event brought together trainee advocates from both the 2022 and the 2023 Advocacy Certificate for Human Genetics and Genomics Trainees (ACGT) program. Participation in this spring advocacy activity is a key feature of the ACGT program.
Trainee advocates shared how genetic research is transforming medicine and saving lives. They also shared how robust federal support for research impacts their own work and careers. In addition, advocates outlined several of ASHG’s policy priorities, including how diverse research participation is necessary for us to fully understand the genome and essential if all are to benefit from precision medicine. Furthermore, as members of a global research community, trainees spoke about how Congress’ support of broad data-sharing is a necessary component of human genetics and genomics research and important for continued progress in the field. The 2023 ACGT advocates reflected on this advocacy activity and why it is valuable for scientists to engage with Congress.
“This opportunity allowed me to connect with leaders and understand the importance of communicating your specific science and the value of advocating for funding for all. Each conversation got better and easier to get the message across. I especially enjoyed engaging my representatives and hearing about their passion for science. It was a fantastic opportunity, and I look forward to more like it. This opportunity equipped me to do it well in the future. Engaging policy professionals is essential; this was a great example of how to do it well. I also appreciated how willing the offices were to help and support us in the future. I could tell we were starting important relationships. I am glad I got the opportunity to do this.” – Anna Capria
“Participating in ASHG’s Hill meetings was a fascinating and surprising experience for me. However, before the first meeting I was feeling nervous as this would be my first actual dive into advocacy. Soon though those worries would prove to be unfounded as the representatives’ offices (both Republican and Democratic) were very open to learning about new genetic insights and open to listening to the key points that the genetic/genomics community wanted from Congress. I was additionally surprised to see a staffer tie in one of his own life stories to genetics research and promise full support for NIH funding. Overall, it was a great experience and a day future members should look forward to with excitement.” – Hubert Chen
“I had the opportunity to participate in ASHG’s 2023 Capitol Hill meetings in May, and it was an incredibly valuable experience. Engaging with the offices of senators and representatives in California and Colorado allowed me to understand the significant impact we can have by sharing our research with Congress. I had the opportunity to share my experiences as a trainee in this field and demonstrate how federal support for research can greatly benefit the American people. Although we still have some way to go with the NIH budget, this experience has empowered me by giving me the insights needed to advocate for future NIH budget increases. I look forward to future advocacy that ensures research remains a sustainable career choice for incoming trainees. By uniting with the broader research community and advocating for a minimum of $51 billion for NIH’s base budget in FY 2024, we collectively reinforced the message that investing in biomedical research and scientific innovation is vital for our nation.” – Richard Coca
“Participating in ASHG’s Hill meetings was a very valuable experience. I learned how advocacy works in the U.S. government and how you can use it to voice more effectively through discussions with policymakers. I was surprised that most people we spoke to were very supportive of funding biomedical research. I saw how my research aligned with the goals of the government and the NIH. Advocating for diversity in human genomics is a cause I am very passionate about, and I was happy to have the opportunity to speak to my representatives about the issue and raise the issues at higher levels of government. One of the staffers was very interested in one of our research areas so we had a very nice discussion and chance to learn that our research is making a difference, and people in government actually care and are touched by what we do.” – Ricardo Harripaul
“I had an amazing experience advocating as a part of the ASHG ACGT program for the Capitol Hill meetings, which involved speaking with Tennessee (TN) legislative staff about the importance of NIH funding. Learning more about how government funding mechanisms work has been very insightful, especially since my research on rare pediatric neurological disorders at St. Jude Children’s Research Hospital in Memphis, TN, relies heavily on federal grants. I especially enjoyed discussing the need for research on rare diseases with a policy advisor to a TN state representative. They shared a personal story about their child’s rare disease diagnosis and medical journey, and it was quite powerful to hear first-hand what research meant to their family. Overall, it was very encouraging to receive such enthusiastic bipartisan support for the NIH in these meetings, and I look forward to continuing to be an advocate for human genetics in research, medicine, and society throughout the program and in my career.” – Christy LaFlamme
“Engaging in conversations with policymakers as a graduate student during Capitol Hill meetings about the pressing need for increased NIH funding was wonderful. They were attentive and genuinely interested in understanding the significance of further research in genetics and genomics. Sharing my insights on equity and diversity within the workforce and articulating the potential impact of additional research funding on society was truly rewarding. Their receptiveness and willingness to consider different perspectives gave me confidence that my voice was being heard, and that our collective efforts could bring about positive change for the future. Participating in Capitol Hill meetings this year reminded me of the power of dialogue and collaboration in shaping policies that can transform the world for the better.” – Jasmine Lewis
“Participating in ASHG’s 2023 Capitol Hill meetings was a really informative experience. I enjoyed collaborating with other members of the ACGT cohort to share our perspectives about why NIH funding is important, especially by using examples from our own work. It was interesting to see how conversations evolved in different meetings and to hear the various questions that arose. Overall, it was great to learn more about this type of advocacy and gain hands-on experience meeting with people who influence decision-making.” – Nandana Rao
“Participating in the ASHG Capitol Hill meetings was an eye-opening experience and one that has motivated me to be more engaged with my representatives on matters that are important to me. Too often I think it can be easy to think that representatives are too busy to hear from their constituents, or that others are already doing the work, rendering our voices unnecessary. Participating in these meetings, I was reminded that representatives and their staff are people, just like us, and rely on their constituents to be vocal and participate in their government. Beyond advocacy in general, I was also struck by the interest that the congressional staff had in genetics and its implications for society, and by their excitement in learning about our specific areas of interest in genetics. I also appreciated the opportunity to practice explaining my research in more broad terms and about the importance of diversifying genetic studies.” – Grace Tietz
“Stories are powerful. By sharing the stories of people with genetic conditions with policymakers, we can better communicate the impact that funding genetics and genomics research has on their communities. As a medical student, I’m grateful for the opportunity to represent ASHG and advocate for policies that will improve the health outcomes of the patients I work with and learn from. The ASHG ACGT program has allowed me to engage with fellow trainees who are passionate about diversity in biomedical research and improving health equity. We were fortunate to share this passion with Congress through ASHG’s 2023 Capitol Hill meetings. I look forward to continuing to work at the intersection of medicine, health policy, and advocacy throughout my training and career.” – Leonard Wang