About the Project

Enhancing Equitable Care in Genetic Counseling: Perspectives on Disability

This project was created to address a critical gap in genetic counseling education, including the lack of comprehensive, lived-experience-based disability training. While genetic counselors receive extensive instruction on the medical aspects of disability, many report feeling less confident navigating the social, emotional, and day-to-day lived experiences of their patients. I believe this reflects a broader gap in healthcare education, where the authentic voices of individuals with disabilities and their families are too often underrepresented.

My name is Lucy Holland, and I am a genetic counseling graduate student at the University of Kansas Medical Center. This training course was developed as part of my master’s thesis and is designed to help bridge this educational gap by centering lived experiences through powerful, personal video narratives. My passion for this work is deeply personal. Growing up with a younger brother with autism, I have witnessed firsthand the complexities, strengths, and lived realities of disability; both within my own family and in interactions with healthcare systems. These experiences have shaped my commitment to disability education and advocacy; and ultimately inspired the creation of this project.

Rooted in both community partnership and academic literature, this project was developed in collaboration with a Community Advisory Board composed of individuals with lived disability experience and genetic counselors. Their insights were foundational in shaping a curriculum that is accurate, relevant, and meaningful. Participants shared stories about their lived experiences, their interactions with health care and genetics, their perspectives on disability rights, and what they wish health care providers better understood. These contributions create a rare and essential educational experience—one that values lived expertise as equally important to clinical knowledge.

Historically, the field of genetics has had a complex relationship with the disability community, in part due to its ties to the eugenics movement. Today, genetic counselors are uniquely positioned to help repair that relationship by delivering care that is equitable, person-centered, and grounded in respect for diverse lived experiences. By engaging with these modules, learners are encouraged to build cultural humility, recognize and challenge unconscious bias, and strengthen their confidence in supporting individuals with disabilities and their families.

This course is designed for both genetic counseling students and practicing professionals, offering a modern, narrative-driven approach to disability education. Through shared stories and community-led insights, the goal is to foster a more inclusive, empathetic, and patient-centered approach to genetic counseling—one that honors lived experience as an essential component of truly equitable care.

Research Conductor

Lucy Holland
Genetic Counseling Student, University of Kansas

Primary Research Mentor

Chelsea Wagner, M.S., CGC
Genetic Counselor, BillionToOne