Variations in racial and ethnic groups’ trust in researchers associated with willingness to participate in research

Abstract

Low enrollment in U.S. biomedical research by non-White adults has historically been attributed to mistrust, but few studies have simultaneously examined dimensions of trust in three or more racial/ethnic groups. Leveraging the racial/ethnic diversity of New Jersey, we prospectively recruited 293 adults (72% women, 38% older than 54 years of age) between October 2020 and February 2022 to complete two anonymous surveys in English or one of the common languages (e.g., Spanish, Mandarin Chinese). The first consisted of 12 Likert-scale questions related to trust in biomedical researchers (according to safety, equity, transparency), and the second assessed willingness to consider participation in eight common research activities (health-related survey, blood collection, genetic analysis, medication study, etc). Participants self-reported as Hispanic (n = 102), Black (n = 49), Chinese (n = 48), other Asian (n = 53), or White (n = 41) race/ethnicity. Factor analysis showed three aspects related to trust in researchers: researchers as fiduciaries for research participants, racial/ethnic equity in research, and transparency. Importantly, we observed differences in the relationship between mistrust and willingness to participate. Whereas Chinese respondents’ low trust in researchers mediated their low interest in research involving more than health-related surveys, Hispanic respondents’ low trust in research equity did not deter high willingness to participate in research involving blood and genetic analysis. We caution that a generic association between trust and research participation should not be broadly assumed, and biomedical researchers should prospectively assess this relationship within each minoritized group to avoid hasty generalization.

Improving diversity in cardiac surgery clinical trials with ROMA:Women as an exemplar

“…Previous research has shown that trust plays a critical role in effectively engaging with patients and getting them to participate in CVD trials [31]. Transparency of research strategies and potential risks significantly influence patients' willingness to take part in research [32] and female patients' trust is shaped by their perceptions of healthcare competence, empathy, communication, and autonomy [33].…”