Determinants of Trustworthiness to Conduct Medical Research: Findings from Focus Groups Conducted with Racially and Ethnically Diverse Adults

Abstract

BACKGROUND: Potential research participants, particularly those from racial and ethnic groups underrepresented in medical research, often decide to participate based on how they judge people, places, and study protocols as trustworthy. And yet, few studies have explored notions of trustworthiness or determinants of trustworthiness from the perspective of potential medical research participants. OBJECTIVE: This paper describes how racially and ethnically diverse potential medical research participants conceptualize what makes researchers, research settings, and research protocols seem trustworthy. DESIGN: Using a criterion sampling strategy, we recruited African American, Latinx, and White adults for participation in focus groups conducted at a community center servings the Latinx community and at a health clinic that primarily serves the African American community. PARTICIPANTS: A total of 57 African American, Latinx, and White adults APPROACH: We conducted seven focus groups that explored perceptions and determinants of research, trust, privacy, confidentiality, and research participation. We used a phenomenological thematic analytic approach to explore the determinants of trustworthiness to conduct medical research. RESULTS: In our effort to identify the factors that affect potential research participants' perspectives on the trustworthiness of medical research, we found three themes: Who is trustworthy to conduct medical research? What influences perceptions of trustworthiness in medical research? And what institutions or settings are trustworthy to conduct medical research? CONCLUSIONS: These findings highlight that one's willingness to participate in research is driven in part by their perception of the trustworthiness of researchers, research institutions, and the information they are given about potential research opportunities. There are important and modifiable determinants of trustworthiness that may facilitate minority participation in research. We found that research, researchers, and research institutions each have things that can be done to increase trustworthiness and minority participation in research.

Racial and Ethnic Disparities Among Participants in Precision Oncology Clinical Studies

“… 30 Prior work has found that individuals from underrepresented racial and ethnic groups’ willingness to participate in research stems from perceived trustworthiness of the researchers, the institutions conducting the research, and the information provided about the applicable research studies. 31 There may be more mistrust surrounding genetic and biological studies—for example, genetic counseling participation is low among Black women for BRCA1/2 testing. 32 This finding was exacerbated among women with higher rates of medical mistrust, 32 fear of discrimination by insurance companies if considered high-risk, 33 and fear of carrying the mutation.…”

Overcoming Historical Barriers: Enhancing Positive Perceptions of Medical Research Among African Americans Through a Conference-Based Workshop

“… 7 Similarly, a recent study discussed the concerns of AA participants and their skepticism of certain researchers given historical unethical research practices. 32 The authors further highlighted the importance of a shared background and understanding between researchers and participants as was shown in our study.…”

Promoting Men’s Health Equity

“…Each of these strategies explicitly consider how the historical legacy of racism or discrimination ( Ford et al, 2019b )—in its unique population-specific forms—is important to address to overcome a legacy of distrust and mistrust that may adversely affect participation in research ( Griffith, Bergner, et al, 2020 ; Jaiswal & Halkitis, 2019 ). These three conceptual pieces (including the scoping review) also explicitly use a range of strategies that facilitate trustworthiness or efforts to move the responsibility of issues related to trust from research participants or health-care patients to the researchers and providers using processes that engender trust in research and clinical practice ( Crawley, 2001 ; Griffith, Jaeger, et al, 2020 ; Jaiswal, 2019 ). Finally, Sinclair and colleagues, Williams and colleagues, and Dhillon and colleagues explicitly incorporate notions of positive masculinities or positive attributes (e.g., dignity) that provided an important foundation of assets and strengths rather than treating gendered notions in men’s health as only having toxic or negative forms.…”