Attitudes and Perceptions about Brain Donation Among African Americans: Implications for Recruitment into Alzheimer’s Disease Research

The objective of this study was to investigate attitudes toward brain donation and perceptions of medical research that influence brain donation among African Americans. Cross-sectional surveys were administered to African American community members (n = 227). Findings indicate that only 27% of respondents were willing to donate their brain. As medical mistrust was not found to be a significant barrier to research participation, there may be opportunity to increase brain donation by providing information about Alzheimer’s disease and brain donation to potential donors and their families so that informed decisions about participating in research can be made

Perceptions of Brain donation and Medical Research Among African American Individuals: Implications for Recruitment and Retention into Alzheimer’s Research

Abstract Background African Americans (AAs) are twice as likely to have Alzheimer’s disease (AD) as their White counterparts; yet, this population is largely missing from brain donation research. According to the National Alzheimer’s Coordinating Center, merely 2% of brain donations are obtained from AAs. Medical mistrust among AAs has been well‐documented as a barrier to medical research participation. The purpose of this study was to expand our understanding of AA perceptions of medical research and brain donation. Method Using validated survey items, a 35‐item cross‐sectional survey was developed to understand attitudes and beliefs about medical research and brain donation among AAs. Surveys were administered via REDCap (Research Electronic Data Capture) and paper in Florida, New York, North Carolina and Ohio, United States from November 2021 to September 2022. Descriptive analysis of data on research participation and trust in medical research was conducted using SAS® software version 9.4. Result A total of 227 AAs participated in this study with about three‐quarters of participants being female. Approximately 90% of AAs reported being born in the US, and nearly half of the sample reported receiving some college education or higher. Only 10.6% of participants reported being very likely to donate their brain to research after death. Despite the low percentage of AAs willing to donate their brain to research, 77.1% had a positive view of medical research and 72.7% trusted researchers in general. In fact, participants perceived that it is “very important” to participate in medical research to help future generations (78.4%), to learn more about AD (66.5%), and receive medical information (56.8%). Conclusion Most AAs in this study reported strong trust in medical research and researchers. Medical mistrust may not be a significant barrier to participation in brain donation or AD research for AAs in this sample. Improved health literacy in AD research and brain donation procedures may facilitate engagement of AAs to participate in such research. Findings from this study will be used to inform the development of a culturally relevant health literacy program, with a focus on brain donation and AD research, to enhance opportunities for recruitment and retention of AAs

Leveraging African American family connectors for Alzheimer's disease genomic studies

The underrepresentation of African Americans (AAs) in Alzheimer's disease (AD) research may limit potential benefits from translational applications. This article describes an approach to recruit AA families into an AD genomic study and characteristics of seeds (family connectors) used to overcome recruitment barriers of AA families into AD research. A four-step outreach and snowball sampling approach relying on family connectors was used to recruit AA families. Descriptive statistics of a profile survey were gathered to understand the demographic and health characteristics of family connectors. Twenty-five AA families (117 participants) were enrolled in the study via family connectors. Most family connectors self-identified as female (88%), were 60 years of age or older (76%), and attained post-secondary education (77%). Community-engaged strategies were essential to recruit AA families. Relationships between study coordinators and family connectors build trust early in the research process among AA families. Community events were most effective for recruiting African American families. Family connectors were primarily female, in good health, and highly educated. Systematic efforts by researchers are necessary to "sell" a study to participants

Attitudes and Beliefs About Brain Donation Among Black Americans

Background African Americans (AA) are underrepresented in Alzheimer’s disease (AD) brain donation research, making up approximately 2% of brain donations to the National Alzheimer’s Coordinating Center (NACC). The objective of this study is to gain insights into the attitudes of Black∖AA individuals toward brain donation and perceptions of medical research that may hinder or facilitate brain donation. Method A 35‐item survey was developed to understand the attitudes and beliefs about brain donation in a sample of AA, using survey items validated in prior investigations. Electronic and paper and pencil surveys were administered in Florida, New York and North Carolina, United States between November 2021‐January 2022. Descriptive analysis of demographic data and was conducted using SAS® software version 9.4. Result The racial composition of the 135 respondents was primarily Black/African American (97.58%), with the remaining responses for race as “missing” or “prefer not to answer”. Most respondents were women (73.6%). The majority of respondents report having a positive view about medical research (85.5%), while 72.1% believe that medical researchers can be trusted to protect the interests of participants. Many respondents reported wanting to learn more about AD (93.1%). Whereas, 82.0% report not knowing how researchers use a brain for research, 58.9% report knowing that study of the brain is important for advances in AD. Despite 53.1% of respondents reporting being either unlikely or unsure whether they would donate a loved one’s brain even if that was their loved ones’ wish, only 21.4% of the sample believe that the decision to donate one’s brain is mostly a family decision. Overall, 63.8% of the respondents are either unsure or unlikely to donate their own brain. Conclusion Findings suggest that 1) awareness of brain donation research procedures and processes should be focused on whole family education, and 2) increasing knowledge about AD will be fruitful areas for an educational intervention. Including families in the consenting processes will be pivotal in ensuring that brain donation occurs. Results will be utilized to develop a community‐informed educational program for Black communities about AD research and brain donation