ABGC Spotlight: Alissa Bovee Terry — Engaging Families in Our Non-Clinical Work

Alissa Bovee Terry, ScM, CGC, has been a genetic counselor for 17 years but is constantly learning and adapting in the profession. In this spotlight, she shares with ABGC how her professional role and approach has evolved and changed over the years, and how she has learned to value the role of family engagement in the work of genetic counselors. 

What is something unique that you value as a GC?

Alissa Bovee Terry, ScM, CGC (ABT): I have learned so much in the last four years about what family engagement in planning and adapting the systems of care they rely on really looks like. I value how critical it is to hear from and learn from families about what they need, where the gaps are and what changes could best address their challenges. I have learned that this type of engagement takes a lot more time and effort, but the outcome of the work can be exponentially more supportive to the communities it aims to support. I think the importance of family engagement in planning anything that will impact families should be universally recognized in the profession. Several of our close family collaborators often remind us "nothing about us, without us." I'm so grateful for their partnership in our work.

Can you share your story of becoming a genetic counselor?

ABT: After enjoying sciences in school and having some early formative experiences with the impact of family history, I went to college talking about wanting to be a "genetic engineer," but I had no idea what that meant. I stuck with the idea of genetics all through college and dabbled in fruit fly laboratory work as well as psychology and ethics courses. I was lucky that my biology career office had a whole binder on genetic counseling, and that I was able to meet with several GCs while I was still in college to understand what GC was.

I remember really struggling during my senior year as I tried to figure out what I would do next, and whether it would be a genetics research type pathway or genetic counseling. Since I felt so undecided, I identified an amazing post-college program at the NIH that ultimately allowed me to get more lab experience while also taking a few classes in the GC program there. Within a few months, it became much clearer to me that my heart was in genetic counseling, and I was able to spend the rest of that year preparing to apply to GC programs with the full support of my lab supervisor/valued mentor/(now) colleague, Dr. Larry Brody. I was fortunate to begin training the next year and met so many amazing supervisors and friends during that time. My three GC classmates, Kate, Meredith and Suzanna, remain some of my favorite people to this day.

Can you describe your evolving role with NYMAC Regional Genetics Network?

ABT: My work with NYMAC started when I was working in a small genetic counseling clinic in Binghamton, NY (Ferre Genetics). My supervisor there had been on the NYMAC Advisory Committee in the past, and in the clinic, we had applied for and received grant funds for a rural telehealth and tele-education project. At that time, telegenetics was still unusual, so after our work on that grant project, NYMAC invited me to expand my role to become their "telegenetics navigator," and support providers and clinics that were looking to implement telegenetics. After three years in that role, the NYMAC grant was renewed for a new cycle, and at that time, I became the project manager. In this role, I now oversee all aspects of the NYMAC grant including our community and professional genetics education efforts, local stakeholder teams in each of our 10 jurisdictions, continued telegenetics projects and many aspects of the budget, staffing, workplan and data reporting. Ultimately, I'm responsible for ensuring that our team achieves the goals and objectives we laid out in our grant application on time and within budget.

What is a moment you've been proudest of since you began this position?

ABT: Part of our work in NYMAC over the last four years has been to expand access to genetic services in Puerto Rico and the US Virgin Islands. This work has required a very different approach than our work in our eight continental states. Like many things in life, this huge challenge has also been hugely rewarding. When we travelled to the USVI in 2023, we met with many genetics stakeholders. They expressed to us what they felt their key needs were for genetics care in their communities. A few days after we returned, we noticed a grant opportunity that would be able to support and address almost all those concerns, but it was due in less than two weeks. I am so proud that our team was able to support our USVI collaborators in writing and submitting the grant, and we were overjoyed to hear a few months later that they received the funding. Our second trip to USVI in February 2024 allowed us to continue to respond to expressed needs from the community, as well as meet with various stakeholders to help work through how the new grant can address their key priorities. We are so hopeful that even though the NYMAC grant will no longer be in place after June 2024, this new funding can continue to address those pressing needs for the communities in the USVI.

How are you involved with Ferre Genetics?

ABT: I am so lucky that Ferre Genetics, and Luba Djurdjinovic, the founder, have been a part of my professional career for almost 20 years. I met with Luba briefly when I was in college nearby to learn about GC as a profession. Years later, when I finished graduate school and moved back to that area, we reconnected, and I was fortunate enough to work in the clinic with her for a year while we lived nearby. After moving again, I was able to continue to see patients remotely for years afterward. Later, the work with Ferre evolved to include work on NYMAC grants, as described above. Today, Ferre Genetics is the administrative arm of the NYMAC grant, so I have the great pleasure of continuing to work with Luba and the other amazing staff at Ferre Genetics. What I value most about the work with Ferre is Luba's incredible commitment to adapting her clinical model to meet the changing needs of the rural communities, providers, and patients she reaches. I've seen Ferre change and evolve so much in the last 20 years, but never lose its keen focus on expanding access to GC services.

Who has mentored you in your career?

ABT: As I described above, Luba has been a key mentor throughout my career. One of her most valuable lessons to me has been to be adaptable, which proved to be important as my career path changed so much from a clinical role to an eventual project management role. My work with NYMAC has also put me in close collaboration with many other wonderful and insightful people including Dr. Michele Caggana, who works in the NYS NBS program, and Dr. Joann Bodurtha at Johns Hopkins. They have really taught me to trust myself over the last four years as I took on a bigger leadership role. My laboratory mentors, Dr. Brody at NHGRI and Dr. McIntyre at Cornell were also so generous in allowing me to explore "wet lab" research and showing how student trainees can really be meaningfully engaged in genomics work at all stages.

What is your biggest piece of advice for a current genetic counseling student?

ABT: The world of genetic counseling training has changed so much in 20 years. Students now see a huge variety of career paths in front of them. I would encourage them, as my mentors encouraged me, to both be adaptable (because things will change!), and to trust themselves as they navigate their possibly windy road ahead.

Outside of genetic counseling, what do you enjoy doing for fun?

ABT: When I have free time, I most enjoy traveling with my husband and two kids, ages 12 and 14. We have been lucky to have done a full California tour, a London/Paris/Switzerland trip and a trip to Hawaii in the past year. I also have a ton of fun watching my kids play the many, many sports that they love.