Disability training for genetic counseling students: The advocates' perspective

Area of Science:

• Medical Genetics
• Disability Studies
• Bioethics

Background:

• The relationship between genetics and disability communities is historically complex, influenced by eugenics.
• Disability scholars advocate for integrating disability education into healthcare training for optimal patient care.
• There is a lack of research on disability advocates' perspectives on disability training in genetic counseling.

Purpose of the Study:

• To explore disability advocates' recommendations for implementing disability education in genetic counseling training programs.
• To understand advocates' views on the benefits of increased student exposure to disability.
• To identify preferred experiential learning opportunities for genetic counseling students.

Main Methods:

• An exploratory study involving semi-structured interviews with 13 disability advocates.
• Participants had lived experience of disability and exposure to genetic counseling.
• Interviews focused on recommendations for disability education and perceived benefits.

Main Results:

• Advocates expressed strong interest in participating in genetic counseling education.
• Key recommendations included advocates speaking in classrooms and students shadowing disabled individuals.
• Identified barriers included accessibility issues; benefits included enhanced student knowledge and understanding of disability resources.

Conclusions:

• Disability advocates are willing to participate in genetic counseling education and have specific recommendations for experiential learning.
• Integrating disability education can foster a more comprehensive understanding of living with a disability among genetic counseling students.
• Improved training may lead to enhanced genetic counseling services for individuals with newly diagnosed disabilities.