Legitimacy, Trust and Stakeholder Engagement: Biobanking in South Africa

Asian Bioethics Review 9 (4):325-334 (2017)

Abstract
Biobanking has become a global activity of growing relevance to research. The African continent is part of this global effort to collect, store and re-use samples and data. International research and capacity development efforts such as the Human Health and Heredity Africa project seek to empower African researchers and research participants alike. Given that African genetic diversity is a unique global resource, retaining samples and data on the continent is critical to building trust in communities who have been historically exploited in the name of research. Diverse and multiple stakeholders are involved in biobanking. Engaging authentically with these various stakeholder groups is a pre-requisite to building trust. Likewise, establishing legitimacy of biobanks also contributes to development of trust in communities. This paper reflects on the concepts of trust, legitimacy and stakeholder engagement. Empirical research conducted on researchers in South Africa as well as on research participants and Community Advisory Board members is briefly presented. The development of educational pamphlets on genetics, genomics and biobanking and an educational video on biobanking in conjunction with CAB members is described. These tools were used to engage research participants and CAB members in discussions around biobanking. Establishing biobanks in African settings is challenging. However, efforts must be made to engage with relevant stakeholders on the basis of mutual respect and trust.
Keywords Legitimacy   Trust   Stakeholder engagement   Biobanking   South Africa
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DOI 10.1007/s41649-017-0035-7
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