Disability, Disparities and Data Solidarity in Translational Genomic Research: The 3D-People Project

About This Grant

Translational genomic research (TGxR) holds promise for reducing the burden of common chronic diseases in the US and relies on cohort diversity for impartial implementation. Participation of people with disabilities in TGxR studies is necessary for achieving these goals. This large population (27% of US adults) experiences difficulties accessing routine care and disproportionately high prevalence of chronic diseases. Yet, research shows that people with disabilities are only limitedly participating in general (not disability specific) TGxR. This finding is disconcerting, as people with disabilities could greatly benefit from research advances and their absence from such research cohorts contribute to persisting health disparities. Two key obstacles are likely to hinder the long-term participation of people with disabilities in TGxR: 1) disability-related enrollment and retention challenges; and 2) unique concerns about data sharing, including future data uses that may cause individual and group-level harms. Despite growing recognition of the importance of participation across demographic groups in TGxR and community-driven approaches for data stewardship, as well as researchers’ expressed interest in assuring data sharing practices that are socially responsible towards the participants they enroll, no study has examined disability-related practices “on the ground” that foster participation or considered the unique concerns of people with disabilities about data sharing, including how to mitigate potential harms and what disability-specific practices might promote access to benefits for everyone. The proposed study employs a disability community-engaged model and leverages large cohorts of the eMERGE4 Network, which includes disability status data on identifiable participants, to close these gaps. We will 1) identify disability-specific challenges to participation and strategies used to address them via interviews with eMERGE4 participants with disabilities and research staff involved in recruitment and participant-facing study implementation; 2) examine and compare views on data sharing and data uses via a survey of three key cohorts: eMERGE4 participants with and without disabilities, and non-eMERGE4 participants with disabilities from the general public; and 3) develop evidence-based guidelines to promote fair data sharing practices using an iterative process, community forums and expert workshops to ensure responsiveness to both disability and scientific communities. The study is led by researchers across career stages and academic disciplines; it has representation from five adult-focused eMERGE4 sites. This project can transform TGxR—by fostering actionable, all embracing, and disability-informed practices—and the trajectory for improved health outcomes for everyone.