What Influences the Willingness of Blacks and African Americans to Enroll in Preclinical Alzheimer’s Disease Biomarker Research? A Qualitative Vignette Analysis

Abstract

Background: Alzheimer’s disease (AD) begins with an asymptomatic “preclinical” phase, in which abnormal biomarkers indicate risk for developing cognitive impairment. Research is increasingly focused on validating biomarkers to improve reliable diagnosis and timely clinical treatment of AD. Most preclinical biomarker research lacks adequate representation of Black/African American and other racially and ethnically minoritized individuals, limiting the applicability of data to these groups. This may exacerbate existing disparities by hindering diagnosis and treatment among racially and ethnically minoritized individuals. Objective: Understand the factors influencing willingness of Blacks/African Americans to participate in AD biomarker research and identify opportunities to improve enrollment. Methods: We enrolled Blacks/African Americans (N = 145) between 46–85 years of age who had previously participated in AD research. Participants gave open-ended responses to a vignette describing a hypothetical biomarker research study. Using qualitative content analysis, we identified themes that motivated and discouraged enrollment in AD biomarker research. Results: Participant responses were categorized into several themes. Themes motivating participation included a desire to know their biomarker results and to support research. Major themes discouraging participation included concerns about potential negative psychological outcomes to learning one’s increased risk for AD, doubt about the usefulness of testing, and worry about the potential physical harms of testing. Conclusion: Understanding themes motivating and discouraging AD preclinical biomarker research participation may inform research material development, approach to community engagement, and/or trial design to increase enrollment of Blacks/African Americans.

Differences in Motivators, Barriers, and Incentives between Black and White Older Adults for Participation in Alzheimer’s Disease Biomarker Research

“…About one-third of our participants who stated they were already hesitant about research indicated they were worried or uncertain about being given abnormal test results. This aligns with researchers’ concerns about causing psychological harm or creating uncertainty about what the meaning of results – particularly with asymptomatic individuals [15, 16, 32–35]. Future research is needed to determine how to ethically and meaningfully return results to participants, particularly those from diverse populations.…”

“…In our study, there was also near universal agreement that participants should receive normal tests results. However, providing study results as an incentive to diversify AD biomarker participation is not a straightforward process [15]. About one-third of our participants who stated they were already hesitant about research indicated they were worried or uncertain about being given abnormal test results.…”

“…Black older adults also identified transportation assistance as a key incentive for research participation, and this was not solely driven by SES. Covering costs of transit or assisting in arranging transit minimizes one of the higher-burden barriers to research participation [15, 36, 37]. These results suggest that assisting with transportation costs may be important to this group, not only from a socioeconomic standpoint, but also in demonstrating efforts to relieve burden and increase equity and reciprocity between researchers and participants.…”

“…Historically, those with lower education and socioeconomic status have been underrepresented in AD research despite being at higher risk of developing the disease [18][19][20]. As researchers design community-based recruitment strategies to enroll new participants and broaden the pool of potential participants, one challenge is recruiting individuals from racially and ethnically diverse backgrounds who have never participated in AD research and have lower education and socioeconomic status [15].…”

“…Several studies have examined barriers to AD biomarker research participation in Black adults [7,[14][15][16][17]. However, many of these included subgroups of individuals who were already enrolled in AD research studies or registries, disproportionately female, highly educated, and had higher socioeconomic status.…”