Genetic counseling training program perspectives on delivering disability-related education

Abstract

Ensuring genetic counselors are educated about disability is crucial due to the societal implications of genetic testing and the support they provide to clients. Research indicates that genetic counselor preparedness in these areas is both limited and variable, with practitioners and disability advocates expressing desire for more robust disability-related curricula. This study aimed to gain updated information and perspectives on relevant curricula currently offered at accredited genetic counseling training programs. With future goals of filling in curricula gaps, we also investigated program leadership interest in a shared disability-related curricula resource. Leadership from 16 out of 51 accredited genetic counseling training programs in the United States and Canada responded to our survey. We found that current disability-related curricula are often based in classroom didactics, which is more likely to be focused on medical aspects of disability, whereas community-based education is more likely to expose students to community support resources and lived experiences. As such, our study highlights the variability of genetic counselor training about disability and gaps in community-based education. To fill in these gaps, we found that all programs expressed interest in a curricula development resource.