Challenges in biobank governance in Sub-Saharan Africa

dc.contributor.authorStaunton, Ciara
dc.contributor.authorMoodley, Keymanthri
dc.identifier.citationStaunton, C. & Moodley, K. 2013. Challenges in biobank governance in Sub-Saharan Africa. BMC Medical Ethics, 14(1):35, doi:10.1186/1472-6939-14-35.en_ZA
dc.identifier.issn1472-6939 (online)
dc.descriptionPublication of this article was funded by the Stellenbosch University Open Access Fund.en_ZA
dc.descriptionThe original publication is available at
dc.description.abstractBackground: Biological sample and data transfer within and out of Africa is steeped in controversy With the H3Africa project now aiming to establish biobanks in Africa, it is essential that there are ethical and legal governance structures in place to oversee the operation of these biobanks. Such governance is essential to ensuring that donors are protected, that cultural perspectives are respected and that researchers have a ready availability of ethically sourced biological samples. Methods: A literature review of all legislation, regulations, guidelines and standard operating procedures on informed consent, confidentiality and the transfer of biological samples amongst countries in Sub-Saharan Africa was conducted. In addition, an examination of the websites of departments of health and national ethics committees was performed. Researchers and research ethics scholars in the field in various African countries were contacted for assistance. A literature review of all studies examining participants views on issues related to biobanking in Africa was carried out and five separate studies were found. Results: It was found that biobanking guidelines differ substantially across Sub-Saharan Africa regarding biobanking and often conflicted across borders. This has the potential to negatively impact collaboration. Furthermore, the guidelines in place often do not recognise the ethical difficulties arising from the transfer of biological samples and are unsuitable to regulate biobanks. Additionally, there is insufficient research into the views of research participants and stakeholders on the use of biological /samples. Conclusion: Collaboration is necessary to ensure the success of biobanking projects in Africa. To achieve this, there should be some harmonization of guidelines across Africa which would aid in transferring biological samples across borders. These guidelines should reflect the unique ethical issues arising out of the storage and secondary uses of biological samples. Finally, further research into the views of research participants is necessary. Such studies should aid in the drafting of any new harmonization guidelines.en_ZA
dc.description.sponsorshipStellenbosch Universityen_ZA
dc.format.extent8 p.
dc.publisherBioMed Centralen_ZA
dc.subjectMedical genetics -- Africa, Sub-Saharan -- Researchen_ZA
dc.subjectMedical research -- Laws and legislations -- Africa , Sub-Saharanen_ZA
dc.subjectBiobanks -- Laws and legislation -- Africa, Sub-Saharanen_ZA
dc.subjectBiobanks -- Africa, Sub-Saharan -- Research -- International cooperationen_ZA
dc.subjectInformation technology -- Moral and ethical aspectsen_ZA
dc.titleChallenges in biobank governance in Sub-Saharan Africaen_ZA
dc.description.versionPublishers' versionen_ZA
dc.rights.holderAuthors retain copyrighten_ZA

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