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NIH Sep 9, 2020 | R01
Disability, diversity and trust in precision medicine research: stakeholders engagement
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:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
R01Project Number:
R01HG010868Start Date:
Sep 9, 2020End Date:
Jun 30, 2024PROJECT TERMS:
Adult, Affect, African American, Alaska Native, American Indians, American Sign Language, Asians, Attention, base, Clinic, cohort, Collaborations, Communities, community based participatory research, comparative, concept mapping, Data, Data Collection, design, Development, disability, Disabled Persons, Educational workshop, English Language, Ensure, Ethics, ethnic diversity, Ethnic group, ethnic identity, ethnic minority population, Ethnic Origin, evidence base, evidence based guidelines, experience, Focus Groups, Genetic, Genomics, Goals, Guidelines, Health, health disparity, Health Equity, hearing impairment, Hispanic Americans, Individual, individualized medicine, insight, Institution, Interdisciplinary Study, interest, Journals, Knowledge, Latino, Measures, meetings, member, Methods, Minority Participation, Modeling, Not Hispanic or Latino, Outcome, Pacific Island Americans, Participant, Pathway interactions, Peer Review, Perception, Population, precision medicine, Prevalence, Procedures, Process, Professional Organizations, Publications, Race, racial and ethnic, racial minority, Recommendation, recruit, Reporting, Research, Research Personnel, Sampling, social exclusion, Social Justice, Societies, Source, Subgroup, Surveys, symposium, theories, translational genomics, Trust, Vision Disorders, Visual, webinar, Work