Negotiating requests for reimbursement for community engagement: challenges in developing an educational video for genomic biobanking research in South Africa

Staunton, Ciara ORCID: https://orcid.org/0000-0002-3185-440X, Abayomi, Akin, Bassa, Fatima and Moodley, Keymanthri (2019) Negotiating requests for reimbursement for community engagement: challenges in developing an educational video for genomic biobanking research in South Africa. Journal of Empirical Research on Human Research Ethics . ISSN 1556-2646 [Article] (Published online first) (doi:10.1177/1556264619856223)

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Abstract

Genomic research and the biobanking capacity it requires are experiencing considerable growth on the continent of Africa. However genomic research and biobanking raise a range of legal, ethical, social, and cultural issues, including concerns about broad consent, confidentiality, community stigmatization, discrimination, indefinite storage, and long-term use. There is a need to establish governance frameworks that address these issues, and many international health research ethics and biobanking guidelines now recommend that the best way to do so is by involving potential research participants and key community stakeholders in the research development and the process of acquiring samples and data through active community engagement (CE). This article describes the experience and challenges in developing an educational tool as part of a CE initiative in South Africa and the commentaries reflect on how this process may be improved going forward.

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