Towards equity & inclusion: a critical examination of genetic Counselling Education on Intersex Healthcare

Intersex describes a diversity of individuals with variations in sex characteristics (VSC), reflecting underlying differences in reproductive anatomy, hormones, and/or genes and chromosomes. With a shift towards socially-conscious clinical practices, genetic counsellors (GCs) are increasingly needing to provide comprehensive care to individuals with VSC and their families. However, the current quality of training provided to genetic counsellors on intersex health is unclear.

Qualitative interviews were conducted between Jan-Feb 2021 with 20 current and graduated students of Canadian GC training programs to assess the quality of GC education on intersex health topics. An agency-based model of VSC health as proposed by Crocetti et al. was used to guide the inductive thematic data analysis.

Results revealed three key themes: limited discussions on psychosocial considerations when caring for intersex individuals, enthusiasm for integrating more intersex training into the curriculum, and personal initiative in ensuring equity and justice in the care of individuals with VSC.

These findings demonstrate existing knowledge gaps in the GC curriculum, with a need to increase the profession’s overall awareness on intersex issues. GC training programs have an opportunity to meet the desires of students while promoting person-centered and validating healthcare for the intersex community.