Disability, Genetic Counseling, and Medical Education: From Eugenics to Anti-Ableism.

Abstract

Genetic counselors have a complex relationship with disability communities due to both the legacy of eugenics and their ongoing role counseling families about prenatal testing. Drawing on a social model of disability and highlighting mistaken assumptions about quality of life for people with disabilities, scholars and activists have raised concerns about genetic technologies that strive to eliminate disability. We review the disability rights critique of prenatal screening and emphasize its ongoing relevance to genetic counseling. We then consider disability perspectives on prognostication in genetics and highlight disability-informed critiques of gene therapies. We close by reviewing efforts by, and opportunities within, the genetic counseling profession to center the perspectives of people with disabilities in genetic counseling practice and education.