Genetic Counselors’ Role in Supporting Patients Through Gene Therapy: Michelle Alabek, MS, CGC

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“We bring a perspective that aligns well with a lot of the physician and clinician representation, but it’s really a different perspective and often is more directly connected to the patient. Not only can we bring an additional set of skills, but we can also bring some patient advocacy if the patients aren't able to do that for themselves."

At the 44th National Society of Genetic Counselors (NSGC) Annual Conference, held November 6-10, 2025, in Seattle, Washington, the session titled “Gene Therapy Unlocked: Empowering Genetic Counselors for a New Frontier,” addressed the evolving landscape of gene therapy and its implications for the management of genetic diseases. There, experts introduced the complexities of gene therapies, including regulatory considerations and differences between therapeutic approaches. During the session, speakers emphasized the importance of interdisciplinary collaboration to ensure that these therapies are integrated into clinical care efficiently, accessibly, and equitably.

In the presentation, experts also highlighted how genetic counselors could leverage their expertise to support patients, navigate clinical pathways, and contribute to team-based care in this emerging field. Topics featured in the discussion included that patients’ experience such as psychosocial and logistical factors that can affect participation in gene therapy trials or treatments. Thus, speakers examined strategies for genetic counselors to provide consistent support, advocacy, and education throughout the patients’ journey. Overall, the session fostered a dialogue on how counselors could address barriers to care and optimize patient outcomes.

In an interview with our sister publication CGTLive®, session coordinator Michelle Alabek, MS, CGC, a genetic counselor in the Department of Ophthalmology at the University of Pittsburgh Medical Center, discussed the foundational concepts of gene therapy. The interview, which took place at the meeting, highlighted the role of genetic counselors in providing consistent patient support. Alabek also noted gaps in training for gene therapy and the need for standardized education and ongoing professional development. Additionally, she discussed emerging genetic testing technologies, such as long-read sequencing, which can help confirm variant phase in recessive conditions, facilitating patient access to clinical trials or approved therapies.

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REFERENCE
1. Alabek A, et al. Gene Therapy Unlocked: Empowering Genetic Counselors for a New Frontier. Presented at: 2025 NSGC Annual Conference; November 6-10; Seattle, Washington.