Race/ethnicity and the relationship between trust in researchers and hypothetical research participation

Abstract

BackgroundResearch participation by minority individuals is critical to address health disparities, and lack of trust in research/researchers (TIR) is a significant barrier to participation. Few existing studies examine the relationship between level of TIR and hypothetical research participation in a sufficiently diverse sample.MethodsThe survey was conducted among White, Black, Hispanic, and Asian community‐dwelling adults in New Jersey (N = 293 between October 2020 and January 2022). A 12‐item TIR measure based on published scales was developed with input from community partners. Respondents were also asked if they would participate in different types of research (i.e. survey, blood draw, medication study). Exploratory and confirmatory factor analysis was conducted to identify the underlying structure of TIR. Cluster analysis on research participation was conducted to determine patterns. Regression‐based mediation analysis was done to determine relationship between race/ethnicity, TIR, and hypothetical research participation.ResultsResponses were collected from 293 adults, with 38% reporting ages of 55 years or older. Factor analysis revealed three main factors on 9‐items related to Researchers as Fiduciaries (lowest score in Chinese adults), Equity in Research (highest score in White adults), and Transparency in Research. Cluster analysis revealed two major clusters: one cluster only willing to participate in anonymous health‐related surveys, and the other highly willing to participate in studies involving blood tests and genetic analysis. Only Chinese race/ethnicity was associated with lower Researchers as Fiduciaries scores (B = ‐0.54, 95% CI‐0.85 to ‐0.23, p = 0.0007), with the mediation model (Sobel Z of ‐3.22, p<0.001, k2 = 0.13) showing a direct effect of ‐0.64 (95% CI ‐1.36 to 0.08, p = 0.08) and indirect effect of ‐0.69 (95% CI ‐1.06 to ‐0.32, p = 0.001) from Chinese race/ethnicity on participation willingness.ConclusionChinese respondents showed low trust in researchers to serve as their fiduciaries, which mediated their low willingness to participate in research involving more than health‐related surveys. All non‐White groups also endorsed inequity in treatment by researchers, but Hispanic and Black adults were still likely to be interested in minimal risk (blood draw, genetic analysis) research participation. These findings call for community‐specific approaches to enhance biomedical research participation among non‐White adults.