Decision-making in biospecimen and biomarker research among African American participants: Procedure-specific perspectives including on the uniqueness of brain donation
Susan Racine Passmore, Diane Carol Gooding, Morgan N. Medina, Faith Ocoko, Shenikqua Bouges, Madisin Randolph, Tierra Smith, Fabu P. Carter, Megan Zuelsdorff, Jeffrey Nirschl, Carey E. GleasonBackground
African Americans are disproportionately affected by Alzheimer's disease (AD) but remain significantly underrepresented in research. While previous studies often assess these barriers to such research engagement using hypothetical scenarios, there is a need to focus on
Objective
To 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.
Methods
Semi-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.
Results
Acceptability 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.
Conclusions
This 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.