Author ORCID Identifier
0000-0002-6002-9687
Date of Graduation
5-2021
Document Type
Thesis (MS)
Program Affiliation
Genetic Counseling
Degree Name
Masters of Science (MS)
Abstract
The genetic counseling (GC) community has faced criticism concerning the duality of promoting patient autonomy while advocating for individuals with disabilities. Research suggests that focusing on the education of GC students could ensure GCs feel prepared to have conversations about disability, as well as strengthen the relationship with the disability community. This study aimed to evaluate the landscape of GC disability awareness education to identify gaps and strengths. The study also aimed to assess attitudes and perspectives of GCs and the disability community to identify content that should be included in GC student’s disability awareness curriculum. GCs and members of the disability community completed an electronic survey with questions unique to each cohort. A total of 76 responses from the GC community and 596 responses from the disability community were analyzed. Most of the GC cohort reported receiving disability awareness training as a student (86%), however, variation was seen in the types of experiences offered by GC graduate programs. Most GC participants (71%) felt they received adequate knowledge of disability topics. However, a discrepancy was revealed when 89% of GC participants reported feeling comfortable discussing medical aspects of disability while only 65% reported feeling comfortable discussing social and lifestyle aspects of disability. Members of the disability community reported consistent perceptions which highlights a gap in GC training and indicates the need for additional guidance in creating disability awareness curriculum. For curriculum content recommendations, both GCs and the disability community agree on the importance of emphasizing four key aspects of disability including medical, social and lifestyle, lived experience, and the disability rights movement. Participants of both cohorts stressed the inclusion of exposure to persons with disabilities, understanding of the lived experience of persons with disabilities, and familiarity with support and resources. The disability community identified additional content that they felt was important to be included such as empathy training, family hardships, and mental health. While many of these factors are already included in GC training, it emphasizes the need to address these factors in disability awareness curriculum. Results from this study highlight the importance of providing a comprehensive curriculum structure for GC programs and the need for the creation of an accessible disability awareness education toolkit to minimize potential challenges with standardization.
Keywords
Genetic Counseling, disability, curriculum, disability awareness education