Association between Trust of Researchers and Interest in Participation in Alzheimer’s Disease Biomarker Research

Abstract

AbstractBackgroundThe study examined whether trust in researchers affects interest in AD (Alzheimer’s disease) biomarker research participation, specifically AD blood biomarkers and MRI and PET neuroimaging, and whether this was independent of other factors commonly associated with hesitancy to participate in research, including race and knowledge of AD.Methods258 community‐dwelling Black and 141 non‐Hispanic White adults (age ≥ 55) who had never participated in AD research completed a survey about their perceptions of AD biomarker research. The survey asked participants to select one of three responses, “Yes,” “Unsure,” and “No” to 6 trust statements, with yes being the highest level of trust. Questions specifically assessed whether survey participants trusted researchers to keep information confidential, be honest, component, not cause harm, treat them equally, and share results with them and their community. Those who answered yes to all 6 questions were categorized as having very high trust, and those who answered no or unsure to any of the 6 questions were categorized as having lower trust. Ordinal logistic regression models were used for the analysis of outcome variables with three possible responses (i.e. interest in participation in an AD biomarker study and individual procedures, motivators for research participation). We adjusted for age, education, sex, race, and knowledge about AD.ResultParticipants with very high trust in researchers were less hesitant about doing AD biomarker research (OR 0.32 (95% CI (0.20‐0.52), P < 0.001). Participants with concerns about confidentiality, study risks, and being treated equally had greater hesitancy about doing AD biomarker research (P’s < 0.05). Concerns about researchers’ competency were associated specifically with lower interest in doing neuroimaging procedures (P’s < 0.05). Very high trust in researchers was associated with greater interest in return of results, particularly brain scans (OR 1.92 (95% CI 1.06‐3.48), P = 0.032).ConclusionEven after other factors known to affect AD research participation, trust remains a highly significant factor affecting the interest in AD research participation in blood biomarker neuroimaging procedures. Recruitment strategies for AD biomarker research may need to address participants’ trust concerns, specifically confidentiality, study risks, and equity.