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.