Disability inclusion in precision medicine research: a first national survey

Purpose Including people with disabilities in precision medicine research (PMR) is key for increasing cohorts’ diversity, improving understanding of population health, and attaining social justice for the United States' largest health disparities group. We conducted a national survey to explore the views of people with disabilities about PMR. Methods An online survey was developed in disability-accessible formats. Key questions included views on PMR, willingness to participate and to provide data, perceived barriers to participation and potential remedies, and interest in engagement in the study. Analyses described results for all participants and compared results for key demographic characteristics. Results In total, 1294 participants completed the survey. Participants expressed strong support for PMR, and willingness to participate in PMR; to provide lifestyle, biological, and medical information; and to engage with the study. However, 76% identified a total of 3 to 8 barriers to participation, and most would not provide environmental samples or information from their social media account(s) and activity trackers. Differences were observed across racial, ethnic, and gender groups and are discussed. Conclusions Barriers to disability inclusion need to be removed, and further research conducted to better understand concerns about PMR and to develop studies that resonate with the interests and needs of this population.