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  • NIH Sep 9, 2020 | R01

    Disability, diversity and trust in precision medicine research: stakeholders engagement

    Principal Investigator(s): SABATELLO, MAYA

    Institution: New York State Psychiatric Institute

    FOA Number: PA-17-444

    Abstract

    Project Narrative 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.

    FUNDING AGENCY:

    Funder:
    NIH

    Institute:
    NATIONAL HUMAN GENOME RESEARCH INSTITUTE

    Funding Type:
    R01

    Project Number:
    R01HG010868

    Start Date:
    Sep 9, 2020

    End Date:
    Jun 30, 2024

    PROJECT TERMS:

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