Ethical considerations for biobanking and use of genomics data in Africa: a narrative review
Date
2023
Authors
Journal Title
Journal ISSN
Volume Title
Publisher
BMC Medical Ethics
Abstract
Background Biobanking and genomic research requires collection and storage of human tissue from study partici‑
pants. From participants’ perspectives within the African context, this can be associated with fears and misgivings due
to a myriad of factors including myths and mistrust of researchers. From the researchers angle ethical dilemmas may
arise especially with consenting and sample reuse during storage. The aim of this paper was to explore these ethical
considerations in the establishment and conduct of biobanking and genomic studies in Africa.
Methods We conducted a narrative synthesis following a comprehensive search of nine (9) databases and grey
literature. All primary research study designs were eligible for inclusion as well as both quantitative and qualitative
evidence from peer reviewed journals, spanning a maximum of 20 years (2000–2020). It focused on research work
conducted in Africa, even if data was stored or analysed outside the region.
Results Of 2,663 title and abstracts screened, 94 full texts were retrieved and reviewed for eligibility. We included 12
studies (7 qualitative; 4 quantitative and one mixed methods).
Ethical issues described in these papers related to community knowledge and understanding of biobanking and genomic
research, regulation, and governance of same by research ethics committees, enrolment of participants, types of informed
consents, data collection, storage, usage and sharing as well as material transfer, returning results and beneft sharing. ca.
Biospecimen collection and storage is given in trust and participants expect confdentially of data and results generated.
Most participants are comfortable with broad consent due to trust in researchers, though a few would like to be contacted
for reconsenting in future studies, and this would depend on whether the new research is for good cause. Sharing data
with external partners is welcome in some contexts but some research participants did not trust foreign researchers.
Conclusion Biobanking and genomic studies are a real need in Africa. Linked to this are ethical considerations
related to setting up and participation in biobanks as well as data storage, export, use and sharing. There is emerg‑
ing or pre-existing consensus around the acceptability of broad consent as a suitable model of consent, the need
for Africans to take the lead in international collaborative studies, with deliberate eforts to build capacity in local
storage and analysis of samples and employ processes of sample collection and use that build trust of communities
and potential study participants. Research ethics committees, researchers and communities need to work together
to work together to adapt and use clearly defned ethical frameworks, guidelines, and policy documents to harmonize
the establishment and running of biobanking and genomic research in Africa.
Description
Research Article
Keywords
Biobanking, Genomic research, Genomic data, Ethical considerations, Africa