People with disabilities are estimate at 22% of the population and the largest health disparity group in the U.S. Including them in Precision Medicine Research (PMR) is vital to attaining tailored scientific findings, assuring health equity and upholding the equality of people with disabilities. Studies of racial/ethnic minorities suggest that distrust of PMR thwarts fulfillment of these goals. Studies also found that discord in community members' and researchers' views about components of trust may negatively impact research collaboration. People with disabilities are likely to have both similar and unique issues of (dis)trust of PMR as other marginalized groups, especially those from racial/ethnic minorities. Yet, no study to date has explored the sources of (dis)trust in PMR among people with disabilities, nor their views about trustworthiness of PMR, a prerequisite for building trust. It is also likely that people with disabilities and researchers will view key issues in trust and trustworthiness differently, but no study has examined this issue. This study aims to 1) identify domains of distrust in and barriers to trustworthiness of PMR among people with mobility, vision and hearing (MVH) disabilities (most common disabilities in the U.S.), across racial/ethnic groups; 2) compare the views of people with MVH disabilities, across racial/ethnic groups, and translational genomic (TG) researchers, the leaders of PMR, about trust in and trustworthiness of PMR; and 3) develop evidence-based recommendations for building trust in PMR among people with disabilities. To achieve these aims, we will employ Concept Mapping, a multi- step process with mixed-methods design. We will conduct 1) 30 focus groups, stratified by disability-type and race/ethnicity (Black/African Americans, Latinos, American Indian/Alaska Natives, Asian/Pacific Islanders, non- Hispanic Whites) to explore sources of distrust and to identify factors affecting views on trustworthiness of PMR; 2) online, national surveys with 4,500 people with MVH disabilities, oversampling racial/ethnic minorities, and 250 TG researchers to examine systematically domains of (dis)trust in PMR and to gain comparative insight about factors affecting trustworthiness of PMR. Based on our findings, we will then conduct an iterative process to draft, revise and finalize recommendations through engagement with both stakeholder groups. These processes will allow development of a nuanced conceptual model of (dis)trust in PMR and an actionable roadmap for enhancing PMR trustworthiness among people with disability. The study employs a disability community-based participatory research approach. It is led by an interdisciplinary research team, including researchers and experts with lived experiences of disabilities and collaboration with national organizations of people with disabilities. Study material, data collection, and findings will be disability-accessible and available in plain language English, Spanish and American Sign Language. We will present our findings at professional meetings and in publications in peer-reviewed journals, and share results with participants by posting briefs, presenting at disability conferences, and holding webinars with our community partners.

Public Health Relevance

Studies suggest that distrust is a major barrier for participation of minorities in Precision Medicine Research (PMR), though no study has examined the sources of (dis)trust and factors affecting views on trustworthiness of PMR among people with disabilities. This study proposes to engage with people with mobility, visual and hearing disabilities?the most common conditions in the U.S.?across racial/ethnic communities and with translational genomic researchers, the leaders in PMR, to close this gap. Using a disability, community-based participatory research approach, and Concept Mapping, a multi-step process with mixed-methods design, will allow development of a nuanced conceptual framework for understanding (dis)trust in PMR and an actionable, evidence-based roadmap for enhancing trustworthiness of PMR among people with disabilities.

National Institute of Health (NIH)
National Human Genome Research Institute (NHGRI)
Research Project (R01)
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Special Emphasis Panel (ZRG1)
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Kaufman, Dave J
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New York State Psychiatric Institute
New York
United States
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