Decision-making in biospecimen and biomarker research among African American participants: Procedure-specific perspectives including on the uniqueness of brain donation

decision-making processesObjectiveTo identify the specific facilitators and barriers influencing African American participants' decisions to engage in or decline four types of biospecimen data collection: biomarker collection via MRI, PET, or lumbar puncture (LP), and brain donation.MethodsSemi-structured interviews were conducted with 41 participants (68.2% female; age range 58-84; average 68) recruited from the African Americans Fighting Alzheimer's in Midlife Study who had made the decision for or against these four types of research. A descriptive content analysis identified specific factors that influenced decision-making.ResultsAcceptability levels varied by procedure: MRI (80.5%) and PET scans (63.4%) were the most accepted, whereas LP (36.6%) and brain donation (34.1%) were the least. Common motivations included personal family experience with AD and a desire to benefit the African American community. Barriers for LP and MRI included perceived physical risk and claustrophobia, respectively. Brain donation emerged as a unique, family-centered decision rather than an individual one. A high percentage of participants (34%) remained undecided about brain donation due to concerns about family burden during end-of-life transitions and a lack of procedural information.ConclusionsThis examination of real-life research decisions confirmed prior findings and highlighted opportunities to improve outreach to African American community members, particularly regarding brain donation, which may require unique approaches.