Significant healthcare disparities exist in New Jersey, particularly among Asian and Hispanic communities, characterized by higher rates of uninsured status, limited healthcare access, and prevalent chronic diseases. These disparities are mirrored by the underrepresentation of older minority adults in biomedical research. The reasons for this underrepresentation remain debated, with potential contributions from both researcher gatekeeping and minority reluctance to participate. While studies from other areas like New York City offer insights, direct assessment of attitudes towards research within New Jersey's diverse population is crucial, considering variations in subgroup composition and immigration patterns. Previous research highlights the importance of considering cultural and country-of-origin distinctions within aggregated racial/ethnic groups, such as the influence of mistrust in authority figures among Chinese Americans and experiences of discrimination among Asian Indians. Analyzing attitudes across the age spectrum within different racial and ethnic groups is also necessary. This study aimed to comprehensively assess the relationship between trust in researchers and willingness to participate in research across five racial/ethnic groups (Hispanic, White, Black, Chinese, and other Asian) in New Jersey. The researchers hypothesized that using a consistent quantitative trust scale in a diverse population would better reveal shared and unique trust-related factors contributing to low participation rates compared to cross-study comparisons. They further hypothesized that willingness to participate in specific research activities would vary between subgroups.

Existing literature demonstrates substantial underrepresentation of minority populations in biomedical research. The causes are complex and multifaceted, but a common theme is mistrust in researchers and the research process. Studies have explored willingness to participate in hypothetical research scenarios, but the correlation with actual participation remains modest. While small studies from specific geographic locations like New York City or California offer valuable insights, generalizing those findings can be problematic due to variations in demographic composition and cultural contexts across different regions. There is a recognized need to disaggregate racial and ethnic groups to understand nuances in attitudes and perceptions. For example, research suggests that cultural beliefs and experiences of discrimination can significantly influence the perception of research among various minority groups. This necessitates a more refined understanding of trust and willingness to participate at a granular level. Existing research focusing on barriers and facilitators to minority research participation often lacks sufficient diversity in the included racial/ethnic groups, limiting the generalizability of the findings. This study aimed to address this limitation by investigating the perceptions and willingness across a wider range of ethnic groups in New Jersey.

This study, granted an exemption by the Rutgers University Institutional Review Board, employed a cross-sectional survey design. Between October 2020 and February 2022, 437 adults were approached at various community events throughout New Jersey to participate in two anonymous surveys. Recruitment strategies targeted diverse racial and ethnic groups, including health fairs, cultural events, and gatherings within specific community organizations. 293 adults (67%) completed both surveys, provided demographic information (age, gender, race/ethnicity, and education level), and had the option of completing them in English or one of several other languages (Spanish, Chinese, Korean, Tagalog, Urdu, Gujarati, and Hindi). The "Trust in Research" survey used a 12-item Likert scale to assess beliefs about researchers' motivations and behaviors, focusing on safety, equity, and transparency. The "Research Activities" survey contained eight yes/no questions gauging willingness to participate in eight common research activities (surveys, medical record reviews, blood draws, genetic analysis, medication studies, etc.). Data analysis involved descriptive statistics, correlation analysis, reliability testing, factor analysis (exploratory and confirmatory), ANOVA, post-hoc analysis, hierarchical cluster analysis, and mediation analysis. Factor analysis aimed to identify underlying latent variables related to trust in researchers. Cluster analysis examined patterns of research participation based on responses to the "Research Activities" survey. Mediation analysis explored whether trust constructs mediated the relationship between race/ethnicity and willingness to participate.

The study included 293 participants (72% women, 38% older than 54 years). Most (80.2%) reported a positive attitude towards research, while a similar proportion (74.7%) expressed at least one negative perception of researchers. Factor analysis identified three key aspects of trust: Researchers as fiduciaries, racial/ethnic equity in research, and research transparency. Significant differences were found in the factor scores among different racial/ethnic groups. Specifically, Chinese respondents showed significantly lower trust in researchers as fiduciaries compared to White, Hispanic, and other Asian respondents (p<0.001). Conversely, non-white groups expressed lower trust in research equity compared to White respondents (p<0.005). Higher education levels and female gender were associated with greater perceived transparency. Cluster analysis of willingness to participate revealed two primary clusters: "mostly surveys" and "blood/genetic analysis." Chinese respondents were significantly more likely to belong to the "mostly surveys" cluster (85%), while Hispanic and White respondents were more likely to be in the "blood/genetic analysis" cluster. Mediation analysis revealed that low trust in researchers as fiduciaries mediated the relationship between Chinese ethnicity and low willingness to participate in research activities beyond health surveys (Sobel Z = -3.22, p<0.001). No other significant mediation effects were observed. Hispanic and Black respondents showed high willingness to participate in minimal-risk research (blood draws, genetic analysis) despite lower trust in research equity.

This study provides valuable insights into the complex interplay between trust in researchers, racial/ethnic background, and willingness to participate in biomedical research. The findings challenge the assumption of a uniform relationship between mistrust and low participation across all minority groups. The variation observed highlights the need for tailored approaches to enhance recruitment among different communities. The lower trust in researchers as fiduciaries among Chinese respondents, mediating their participation in more involved studies, necessitates a focus on safety and participant protection in outreach efforts. Conversely, the high willingness of Hispanic and Black participants in minimal-risk studies, despite expressing mistrust in research equity, suggests that addressing concerns about potential discrimination might be less critical in initial recruitment stages. The study reinforces the importance of culturally sensitive and group-specific strategies to improve minority representation in research.

This research demonstrates the heterogeneity of trust and willingness to participate in biomedical research across different racial and ethnic groups. A one-size-fits-all approach is insufficient; tailored strategies acknowledging the distinct concerns and perceptions of each group are crucial for effective recruitment. Future research should explore the interplay of other factors (income, LGBTQIA+ status, etc.) influencing participation, and investigate the transition from theoretical willingness to actual participation. Further, understanding the impact of the COVID-19 pandemic on trust in biomedical research warrants investigation.

The study's cross-sectional design limits causal inferences. Self-reported data may be subject to biases such as social desirability. The convenient sampling method might have introduced sampling bias, potentially over-representing health-conscious or less risk-averse individuals. The sample size, while relatively large for this type of study, had uneven distribution across subgroups limiting detailed analysis for some groups. The influence of additional factors beyond race/ethnicity was not fully explored. Finally, the theoretical willingness to participate may not perfectly predict actual participation in real-world research scenarios.