Racial Differences in Trust and Risk Disclosure Preferences Among Older Registered Research Volunteers Screened for Prodromal Synucleinopathies

老年注册研究志愿者在接受前驱期突触核蛋白病筛查时,其信任和风险披露偏好存在种族差异

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Abstract

BACKGROUND/OBJECTIVES: The equitable enrollment of minority participants in synucleinopathy trials is an emerging public health concern. Differing views regarding risk disclosure may influence research involvement in at-risk adults. METHODS: We conducted a brief mailed survey, including questions about trust and hypothetical risk disclosure preferences, to 100 participants in the Healthier Black Elders Center cohort in Detroit, MI and 100 participants in the Claude D. Pepper Older Americans Independence Center Research Participant Program at the University of Michigan. RESULTS: 125 recipients without a diagnosis of a neurodegenerative disorder returned the survey, 52 (41.6%) of whom identified as being Black or African American. Black respondents reported less trust in medical providers (t=2.02, p=0.045) and medical researchers (t=2.52, p=0.013) and a greater desire to be informed about the presence of unchangeable risk factors for neurodegenerative disorders (t=2.02, p=0.045). CONCLUSIONS: These findings have implications for the recruitment of representative populations in prodromal neurodegenerative research.

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