Ethical considerations for biobanking and use of genomics data in Africa: a narrative review
Abstract Background Biobanking and genomic research requires collection and storage of human tissue from study participants. 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 researc...
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| Format: | Article |
| Language: | English |
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BMC
2023-12-01
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| Series: | BMC Medical Ethics |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12910-023-00985-y |
| _version_ | 1797397736698413056 |
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| author | Mary Amoakoh-Coleman Dorice Vieira James Abugri |
| author_facet | Mary Amoakoh-Coleman Dorice Vieira James Abugri |
| author_sort | Mary Amoakoh-Coleman |
| collection | DOAJ |
| description | Abstract Background Biobanking and genomic research requires collection and storage of human tissue from study participants. 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 benefit sharing. ca. Biospecimen collection and storage is given in trust and participants expect confidentially 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 emerging 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 efforts 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 defined ethical frameworks, guidelines, and policy documents to harmonize the establishment and running of biobanking and genomic research in Africa. |
| first_indexed | 2024-03-09T01:15:30Z |
| format | Article |
| id | doaj.art-4201d71edcf44416ad68de24a44e2a0c |
| institution | Directory Open Access Journal |
| issn | 1472-6939 |
| language | English |
| last_indexed | 2024-03-09T01:15:30Z |
| publishDate | 2023-12-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Ethics |
| spelling | doaj.art-4201d71edcf44416ad68de24a44e2a0c2023-12-10T12:30:41ZengBMCBMC Medical Ethics1472-69392023-12-0124112210.1186/s12910-023-00985-yEthical considerations for biobanking and use of genomics data in Africa: a narrative reviewMary Amoakoh-Coleman0Dorice Vieira1James Abugri2Department of Epidemiology, Noguchi Memorial Institute for Medical Research, University of Ghana2Health Sciences Library, Grossman School of Medicine, New York UniversitySchool of Chemical and Biochemical Sciences, C.K. Tedam University. of Technology & Applied SciencesAbstract Background Biobanking and genomic research requires collection and storage of human tissue from study participants. 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 benefit sharing. ca. Biospecimen collection and storage is given in trust and participants expect confidentially 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 emerging 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 efforts 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 defined ethical frameworks, guidelines, and policy documents to harmonize the establishment and running of biobanking and genomic research in Africa.https://doi.org/10.1186/s12910-023-00985-yBiobankingGenomic researchGenomic dataEthical considerationsAfrica |
| spellingShingle | Mary Amoakoh-Coleman Dorice Vieira James Abugri Ethical considerations for biobanking and use of genomics data in Africa: a narrative review BMC Medical Ethics Biobanking Genomic research Genomic data Ethical considerations Africa |
| title | Ethical considerations for biobanking and use of genomics data in Africa: a narrative review |
| title_full | Ethical considerations for biobanking and use of genomics data in Africa: a narrative review |
| title_fullStr | Ethical considerations for biobanking and use of genomics data in Africa: a narrative review |
| title_full_unstemmed | Ethical considerations for biobanking and use of genomics data in Africa: a narrative review |
| title_short | Ethical considerations for biobanking and use of genomics data in Africa: a narrative review |
| title_sort | ethical considerations for biobanking and use of genomics data in africa a narrative review |
| topic | Biobanking Genomic research Genomic data Ethical considerations Africa |
| url | https://doi.org/10.1186/s12910-023-00985-y |
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