Disability education and implications for genetic counselor training.

Area of Science:

• Genetic Counseling
• Disability Studies
• Medical Education

Background:

• Genetic counseling (GC) faces criticism regarding balancing patient autonomy with advocacy for individuals with disabilities.
• There is a need to evaluate and enhance disability education within GC training programs.

Purpose of the Study:

• To assess attitudes of the disability and GC communities regarding disability education.
• To identify essential content for GC disability education.
• To evaluate the current landscape of GC disability education.

Main Methods:

• An electronic survey was distributed to members of the disability community and genetic counselors.
• Data from 672 respondents (596 disability community, 76 GCs) were analyzed.

Main Results:

• The disability community perceived GCs as more knowledgeable about medical (71%) than social/lifestyle (49%) aspects of disability.
• GCs reported higher comfort discussing medical (89%) versus social (65%) aspects.
• Both communities recommended including medical, social/lifestyle, lived experience, and disability rights content, stressing the inclusion of people with disabilities.

Conclusions:

• GC disability education requires enhancement, particularly in social/lifestyle aspects and lived experiences.
• Future GC training should incorporate comprehensive disability content and exposure to individuals with disabilities.
• Improved training will enhance the quality of services for individuals with disabilities and their families.