Community perceptions and willingness to donate biospecimen for Alzheimer's disease research in Nairobi, Kenya
Document Type
Article
Department
Brain and Mind Institute; Internal Medicine (East Africa)
Abstract
Background Biomarkers play a critical role in understanding disease mechanisms and advancing diagnostic and treatment options for Alzheimer's disease and related dementias (AD/ADRD). However, in many African countries, biomarker research is limited by insufficient knowledge, infrastructure, funding, and trained personnel.
Objective This study explored community perceptions and willingness to donate biospecimens for AD/ADRD research in Kenya.
Methods Eight focus group discussions were conducted in the informal settlements of Mathare and Kibera in Nairobi, Kenya, stratified by age and gender (n = 81). Data were transcribed verbatim and thematically analyzed using QSR Nvivo 14.
Results Participants generally expressed a positive attitude toward brain health research and donating biospecimens. Willingness to participate was influenced by altruism, perceived benefits, and improved understanding of AD/ADRD. Non-invasive samples such as saliva, blood, and stool were widely accepted due to perceptions of safety and familiarity. However, several barriers were identified, including cultural beliefs (e.g., fear of witchcraft linked to donating hair), religious beliefs, fear of invasive procedures (spinal taps), and low awareness about biospecimen research. To address these barriers, participants recommended community sensitization, inclusive and transparent research processes, clear communication of benefits, involvement of family members in consenting, and assurance of safety measures for managing potential risks.
Conclusions Community willingness to donate biospecimens for AD/ADRD research in Kenya is shaped by a complex interplay of cultural, ethical, and practical considerations. Culturally sensitive, community-driven approaches are essential to enhance participation in AD/ADRD biomarker research in Kenya and similar low-resource settings.
Publication (Name of Journal)
Journal of Alzheimer's disease : JAD
DOI
https://doi.org/10.1177/13872877251389227
Recommended Citation
Bosire, E.,
Kamau, L.,
Kiio, C.,
Blackmon, K.,
Taylor,, O. N.,
Shah, J.,
Sokhi, D.,
Mbugua, S.,
Meier, I.,
Hooker, J.,
Merali, Z.,
Momoh, C.
(2025). Community perceptions and willingness to donate biospecimen for Alzheimer's disease research in Nairobi, Kenya. Journal of Alzheimer's disease : JAD.
Available at:
https://ecommons.aku.edu/bmi/481