ELSIcon2022 Panel: Disability Justice and Precision Medicine Across the Lifespan: Towards a Future of Equity and Access

ELSIcon2022 • Panel • June 3, 2022

Kevin Mintz, David Wasserman, Leslie Francis, and Andrew Peterson

This interdisciplinary panel will advance the dialogue between disability communities and those in precision medicine by exploring how the field can be enhanced through engagement with disability justice. The first presenter, a philosopher, will consider how emerging fetal therapies may complicate longstanding debates in bioethics regarding disability-selective abortions. The second presenter, a political scientist, will present preliminary findings from a pilot study of parental participants from one site of NHGRI's Undiagnosed Diseases Network about the extent to which they consider their children as having disabilities and the challenges they confront in receiving disability assistance from government programs. The third presenter, a lawyer, will interrogate the extent to which the legal framework of reasonable accommodations under the Americans with Disabilities Act provides meaningful access to healthcare, employment, and social support for adults with Down syndrome. Finally, drawing on the case of Alzheimer's disease, a health policy scholar will investigate how differing individual conceptions of disability and disability justice might influence long-term care planning for those at heightened genetic risk of developing degenerative illness later in life. Taken together, these four presentations will illustrate how disability justice can inform precision medicine for individuals across the lifespan. The panel will help researchers, practitioners, and policy makers in genetics and genomics develop priorities for making the benefits of precision medicine more accessible to disability communities in the future.