Maya Sabatello1, Lou Ann Blake2, Audrey Chao3, Arielle Silverman4, Ronit Ovadia Mazzoni5, Yuan Zhang6, Ying Chen7, Paul S Appelbaum8. 1. Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics, Department of Psychiatry, Columbia University, New York, NY, USA. ms4075@columbia.edu. 2. National Federation of the Blind, Baltimore, MD, USA. 3. Columbia Law School and Columbia School of Social Work, New York, NY, USA. 4. Disability Wisdom Consulting, Alexandria, VA, USA. 5. Santa Clara Valley Medical Center, San Jose, CA, USA. 6. Department of Biostatistics, Mailman School of Public Health, Columbia University, New York, NY, USA. 7. New York State Psychiatric Institute, New York, NY, USA. 8. Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics, Department of Psychiatry, Columbia University, New York, NY, USA.
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.
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.
Entities:
Keywords:
barriers; blind and low-vision individuals; disability; inclusion and accessibility measures; precision medicine research
Authors: Amy A Lemke; Edward D Esplin; Aaron J Goldenberg; Claudia Gonzaga-Jauregui; Neil A Hanchard; Julie Harris-Wai; Justin E Ideozu; Rosario Isasi; Andrew P Landstrom; Anya E R Prince; Erin Turbitt; Maya Sabatello; Samantha A Schrier Vergano; Matthew R G Taylor; Joon-Ho Yu; Kyle B Brothers; Nanibaa' A Garrison Journal: Am J Hum Genet Date: 2022-09-01 Impact factor: 11.043