Including the blind community in precision medicine research: findings from a national survey and recommendations

Abstract

Purpose: Despite ongoing efforts to increase diversity of cohorts in precision medicine research (PMR), little is known about the obstacles to inclusion of blind people and those with low vision (“the blind community”) in PMR. The blind community comprises ~10% of the US adult population and its members commonly experience health disparities. Understanding barriers to inclusion of this community is necessary to facilitate their participation. Methods: An online survey was developed in disability-accessible formats. Key questions included views on PMR; willingness to participate, provide data, and engage in the study; data sharing and consent; and perceived barriers to participation. Analyses describe results for all participants. Results: Two hundred seventy-one blind/low-vision participants completed the survey. Participants expressed strong support for PMR, and willingness to participate in PMR, to provide lifestyle, biological and medical information, to engage with the study, and to have their data shared with other researchers. Preferences for data sharing and consent models varied. Significantly, 65% identified 3–6 barriers to participation, particularly inaccessible transportation, clinics, and facilities; inaccessible information; and attitudinal and institutional barriers. Conclusion: Removing the identified barriers is key. Measures that could increase inclusivity of blind people and those with low vision in PMR are suggested.