Despite comprising about 27% of the US population, the disability community has remained largely absent from diversity, equity and inclusion (DEI) efforts in precision medicine and genomics research. Research suggests that individuals with disabilities are willing to participate in precision medicine research, yet this group continues to be underrepresented. Reasons for this absence range from inaccessible research protocols (i.e. overly narrow inclusion and exclusion criteria) to the perception that it is too burdensome to recruit or accommodate disabled participants. Research can also be subject to ableism, which discourages marginalized communities from potential research partnerships. If not designed and communicated in ways that respect the complexity and diversity of human genetic variation, identities, and experiences, research risks reifying prejudices that marginalize those it hopes to benefit. This seminar will explore insights into various aspects of disability inclusion within precision medicine and genomics research with a lens on equity, accessibility, participation, and justice.
Speakers: Megan Morris, PhD, MPH
Associate Professor, University of Colorado, Anschutz
Founder/Director, Disability Equity Collaborative
Kara Ayers, PhD
Associate Director, University of Cincinnati University Center for Excellence in Developmental Disabilities (UC UCEDD)