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/lo

SUBMITTER: Sabatello M 

PROVIDER: S-EPMC6834864 | biostudies-literature | 2019 Nov

REPOSITORIES: biostudies-literature