Abstract
BackgroundConcurrent with efforts to establish national and regional biorepositories in Africa is widespread endorsement of ethics committees as stewards of the interests of individual donors and their communities. To date, ethics training programs for IRB members in Botswana have focused on ethical principles and international guidelines rather than on the ethical dimensions of specific medical technologies and research methodologies. Little is known about the knowledge and concerns of current and prospective IRB members in Botswana with respect to export, reuse, storage, and benefit-sharing of biospecimens.MethodsThis qualitative study examined perspectives of IRB members in Botswana about the collection and use of biospecimens in research. Forty-one IRB members representing five committees in Botswana participated in discussions groups in March 2013. Transcriptions of audiotapes and field notes were analyzed to identify issues of concern that might be alleviated through education and capacity-building, and areas that required ongoing discussion or additional regulatory guidance.ResultsAreas of concern included lack of understanding among patients and providers about the use of biospecimens in clinical care and research; reuse of biospecimens, particularly issues of consent, ownership and decision-making; export of specimens and loss of control over reuse and potential benefits; and felt need for regulatory guidance and IRB-member training. Local belief systems about bodily integrity and strong national identity in the construct of benefits may be at odds with initiatives that involve foreign biorepositories or consider such collections to be global public goods.ConclusionEducation is needed to strengthen IRB-member capacity to review and monitor protocols calling for the collection and use of biospecimens, guided by clear national policy on priority-setting, partnerships, review, and oversight. Engagement with local stakeholders is needed to harmonize fundamentally different ways of understanding the human body and community identity with the aims of contemporary biomedicine.
Highlights
Concurrent with efforts to establish national and regional biorepositories in Africa is widespread endorsement of ethics committees as stewards of the interests of individual donors and their communities
Advances in pharmacogenetics and genomics research and their potential to yield public health benefits have contributed to the growing use of human biological specimens (HBS) in research and the establishment, mainly in developed countries, of large-scale biorepositories
A total of 41 Institutional Review Board (IRB) members drawn from five different committees participated, a sample representing a majority of those members serving on committees tasked with review of protocols involving HBS
Summary
Concurrent with efforts to establish national and regional biorepositories in Africa is widespread endorsement of ethics committees as stewards of the interests of individual donors and their communities. Samples from African populations have been included in several public genome reference collections, among them the International HapMap Project, The 1000 Genomes Project, and the Malaria Genomic Epidemiology Network [1,2,3]. Several African biorepositories have been established, including The Gambia National DNA Bank, the African Institute of Biomedical Science and Technology (Zimbabwe) and the biobank at the University of Kwazulu-Natal’s African Centre for Health and Population Studies in South Africa [4,5,6]. International efforts to establish a number of regional pan-African biorepositories have gained momentum, largely under the aegis of the Human Heredity and Health in Africa Initiative (H3Africa) [7]. It is anticipated that all H3Africa research projects will begin to send a portion or all of their samples to one of these biobanks starting in 2014 [9]
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