Ableism, Intersectionality and Justice in Genomic Science

Exploring systems of power and privilege is inseparable from efforts to improve genomic research and increase equity in health outcomes. This is particularly the case for people with disability, a large group in the US and worldwide. Yet, disability justice in genomic settings raises a myriad of social, cultural, economic challenges, such as what appropriate representation means (and by whom), how benefits and risks for individual and group harm are conceptualized; and what practices in genomic research and policies may impede—or facilitate—equity in genomic science. While disability alone is associated with significant disparities across determinants affecting access to the benefits of genomic science, the universality of disability often translates into additional layers of “Othering” that are affected by and play into these systems of power and privilege. Yet, disability and intersectionality within the disability community—the lived experiences of people with disabilities who have multiple, overlapping social identities—have only received limited attention when considering inclusion, benefits, responsibilities, and justice in genomic discovery and implementation. A panel of researchers of diverse disciplinary backgrounds, professional development stages, research methods, and lived experience of disability and intersectionality will explore the cultural, sociopolitical, and economic challenges that arise and what equity in genomics would mean for the complex, vibrant and intersectional community of people with disability. An interactive discussion with the audience will follow.

Authors: Chris Donohue; NHGRI; Tracy King, NICHD; Alejandra Aguirre, Columbia University; Maya Sabatello, Columbia University