An Assessment of Genetic Counselors’ Knowledge and Attitudes Regarding Gene Transfer Therapies

Background: There are currently two FDA approved gene transfer therapies, Luxturna (voretigene neparvovec-rzyl) to treat RPE65 Associated Inherited Retinal Dystrophy and Zolgensma (onasemnogene abeparvovec-xioi) to treat Spinal Muscular Atrophy. No practice guidelines or educational tools designed for genetic counselors exist regarding gene therapies. Research demonstrates that the majority of healthcare providers lack knowledge regarding gene therapies. The comfort level of genetic counselors and their impact on genetic counseling sessions has not been explored. This study aims to identify any knowledge gaps in practicing genetic counselors and to investigate educational resources. This information will become more broadly applicable over time. Methods: An electronic survey of 22 questions was sent to genetic counselors. Multiple choice questions, open-ended questions, and Likert scales were used to explore the respondents’ experiences and perceptions as they relate to the aims of this study. Results: 109 genetic counselors responded to the survey. 54 participants worked in pediatrics, 38 in metabolic disorders, and 29 in prenatal and cancer each. 56% of participants had 5 years of experience or less. 5% and 28% of participants responded they “never heard of” Zolgensma and Luxturna, respectively. 10% and 20% of participants responded they were “not comfortable” with Zolgensma and Luxturna, respectively. Answers for these questions varied based on specialty and experience. Analysis showed that counselors in certain specialties were more likely to be familiar with gene therapies and more likely to discuss them with patients, while counselors in specialties such as cancer were less likely to be familiar or to discuss gene therapies. 59% of participants felt that gene therapies impacted their work and 93% of participants felt that genetic counselors should be comfortable discussing gene therapies with patients. 83% of participants were interested in additional training in various formats, with seminars hosted by NSGC as the most common answer. Conclusions: Genetic counselors felt that available gene therapies do impact their sessions. While respondents wanted to be involved in counseling patients regarding gene therapy, they desired additional training to be prepared to do so. Public Health Significance: Additional education is needed for genetic counselors to counsel patients regarding gene transfer therapies