Factors influencing the participation of Black and White Americans in Alzheimer's disease biomarker research
Johanne Eliacin, Elizabeth Hathaway, Sophia Wang, Caitlin O’Connor, Andrew J. Saykin, Kenzie A. Cameron
Abstract
Introduction: Alzheimer's disease (AD) is a public health priority. AD biomarkers may vary based on race, but the recruitment of diverse participants has been challenging. Methods: Three groups of Black and White participants with and without prior research advocacy or participation were interviewed individually or in focus groups to better understand perspectives related to AD biomarker research participation. A rapid qualitative data analytic approach was used to analyze the data. Results: Identified barriers to AD biomarker research participation included hesitancy due to fear, distrust of research and researchers, lack of relevant knowledge, and lack of research test results disclosure. Drivers for engagement in biomarker research procedures included knowledge about research, AD, and related clinical procedures, perceived benefits of participation, and outreach from trusted sources. Discussion: Participants' comments related to the need for diversity in research and desire for results disclosure suggest opportunities to engage Black individuals. Highlights: Black Americans experience more salient barriers to Alzheimer's disease (AD) biomarker research participation.Concerns about research diversity influence research participation decisions.Research test disclosure may affect research participation and retention.