My Policy Fellowship Journey: from DNA to DC(A)

Written by Nichole Holm, PhD, 2021-2022 ASHG/NHGRI Genetics & Public Policy Fellow

Policy Fellow Holm picture
Nichole Holm, Policy Fellow

10 years ago, I was in my college dorm room writing my senior thesis and wondering what career could possibly combine my interest in genetics, health, communication, and translation of research. Today, I am sitting in my apartment in Washington, DC as an ASHG/NHGRI Genetics and Public Policy Fellow, working remotely at the intersection of those exact issues. I am nearly halfway through my fellowship and have already had the opportunity to work alongside and learn from some of the brightest minds in this field. I have attended seminars with national and international experts and written briefs on a variety of topics including cybersecurity, insurance, research ethics, race vs. genetic ancestry, as well as met with legislative staff to interview for my upcoming rotation on Capitol Hill.

My path to this fellowship was anything but linear – my interest in human genetics began when I first learned about epigenetics and gene-environment interactions in college. As a result, I explored every possible genetics profession – from genetic counseling, medical genetics, clinical research, and molecular research. I completed my PhD in genetics and genomics at UC Davis in 2020 where I studied a genetic neurodegenerative disorder called FXTAS, which equipped me with valuable insight into the nuances of sequencing technologies and molecular techniques. However, it was my work as a graduate student-government liaison and eventual fellowship in the California Initiative to Advance Precision Medicine that cemented my passion for the intersection of science, health, and policy.

After graduation, I began working as a California Council on Science and Technology (CCST) Fellow in the State Assembly Committee on Water, Parks, and Wildlife. It was an incredible opportunity to learn more about the legislative process, the essential relationship between stakeholders/lobbyists and legislators, as well as the nuances of complex policy issues and the importance of thorough bill analysis. Although it was an invaluable experience, I felt drawn back to health policy and the ASHG/NHGRI Genetics and Public Policy Fellowship provided a unique opportunity to learn more about and participate in health and genetics policy at a federal level.

This fellowship is unlike most others, because fellows are provided with the opportunity to rotate through two branches of government and the non-profit sector – the Executive Branch (NHGRI), the non-profit/scientific society sector (ASHG), and the Legislative Branch (The Hill). Learning how policy can utilize science and genetics from each of these perspectives, rather than just one office, provides an incredible opportunity to learn from and try different offices to see where my skills were best suited to meet the needs of the larger community.

My fellowship started with my rotation at the National Human Genome Research Institute (NHGRI), where I worked in the Public Policy and Analysis Branch (PPAB). While there, I coordinated communication with various Directors of NHGRI programs and wrote portraits highlighting their programs in the Congressional Justification, which is a large report submitted to Congress on behalf of NHGRI every year. It was a great opportunity to work with Institute staff to learn more about their work, and the complexity of the projects done both internally and externally at NHGRI. I also wrote a brief on the history of NHGRI’s work to address and prevent the misuse of race as a proxy for ancestry in genetics and genomics, which was an incredibly informative project and learning experience. My third project was to develop a case-study summarizing the current process of insurance coverage and reimbursement for genomic sequencing, as well as to identify roadblocks to access for patients. The NHGRI rotation was a lesson in so much more than just the functions of the executive branch, but also the intricacies within each NIH institute and the ways in which institutes provide resources to external stakeholders as well as interact with other Federal agencies.

My next rotation was with my current office, the Policy and Advocacy Department at ASHG. While here, I have worked on several projects, ranging from a report on genomic cybersecurity, drafting a society-level response to current ethical and privacy issues, drafting and submitting a response to a Request for Information from the NIH on their Genomic Data Sharing Policy, and coordinating revisions to ethical practice guidelines for the Annual Meeting. During this rotation, I have also been reaching out to offices on the Hill to secure the placement for my final rotation. ASHG continues to provide incredible opportunities to work with members of the Society, learn about the role of scientific societies in policymaking, and work with a fantastic team of people on a variety of issues.

My perception of the role of these organizations in policy has expanded dramatically – I have realized that my knowledge of these offices and organizations was not even the tip of the iceberg regarding the extent of their work. The learning experience has been extraordinary so far, and I am grateful to have met alumni of the fellowship to learn more about their transition from the fellowship to successful careers in policy. Although I have not started working on the Hill yet, every aspect of this fellowship has exceeded my expectations and I have no doubt the Hill will be the same.

Although working from home has introduced unexpected challenges to meeting coworkers and collaborators, it is a challenge we have all experienced together over the past few years. As a result of this new working environment, I have gained new skills of intentional outreach to colleagues rather than relying on hallway, breakroom, or in between meeting chats. I am also excited for the return-to-office plan beginning next month, both at ASHG and on the Hill.

My understanding of the ways in which my scientific training could be applied in policy has expanded dramatically, and I am so grateful for the opportunity to work within these incredible organizations. This experience has confirmed that scientific skills can still be used beyond the bench to help the public, and after the fellowship I would like to continue working at this intersection of research, health, and policy. I would recommend this fellowship to any early career genetics professionals intrigued by the intersection of policy and human genetics. It has been an incredib

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