Genetic counseling training program perspectives on delivering disability-related education

Area of Science:

• Genetic Counseling Education
• Disability Studies
• Medical Genetics

Background:

• Genetic counselors play a key role in supporting clients undergoing genetic testing, necessitating comprehensive disability education.
• Existing research suggests genetic counselor preparedness regarding disability is inconsistent and insufficient.
• Both genetic counseling practitioners and disability advocates seek enhanced disability-related curricula in training programs.

Purpose of the Study:

• To assess current disability-related curricula in accredited genetic counseling programs.
• To identify gaps in genetic counselor training concerning disability.
• To gauge program leadership interest in a shared disability curricula resource.

Main Methods:

• A survey was distributed to leadership at accredited genetic counseling training programs in the US and Canada.
• Responses were collected from leadership at 16 out of 51 programs.
• Data analysis focused on current curriculum content, delivery methods, and interest in collaborative resources.

Main Results:

• Current disability education in genetic counseling programs often relies on didactic classroom learning, frequently emphasizing medical aspects.
• Community-based education, which offers exposure to lived experiences and support resources, is less common.
• All surveyed programs expressed interest in a shared resource for curricula development.

Conclusions:

• Genetic counselor training on disability is variable and shows significant gaps, particularly in community-based experiential learning.
• There is a strong need and expressed interest among programs for collaborative development of disability-related curricula.
• Developing shared educational resources could help standardize and improve genetic counselor preparedness in disability topics.