A Framework to Promote Ethical Benefit Sharing in Health Research – World

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Anja Bedeker, Michelle Nichols, Taryn Allie, Tsaone Tamuhla, Peter van Heusden, Olorunyomi Olorunsogbon, Nicki Tiffin, for the PHA4GE Ethics and Data Sharing Working Group

ABSTRACT

There is increasing recognition of the importance of incorporating benefit-sharing into research programs to ensure an equitable and equitable distribution of benefits from research. While there are global efforts to promote benefit-sharing in the use of non-human biological resources, benefit-sharing plans and implementation have not yet featured prominently in research programs, funding requests, or ethics committee requests. While many research stakeholders may agree with the concept of benefit-sharing, it can be difficult to operationalize benefit-sharing within research programs. We present a framework developed to help identify benefit-sharing opportunities in research programs. The framework has two dimensions: the first represents micro, meso and macro level actors as defined using a socio-ecological model; and the second identifies nine different types of benefit-sharing that can be achieved during a research program. We provide an example matrix identifying different types of benefit-sharing that could be undertaken during genomic research and present a case study evaluating benefit-sharing in Africa during the SARSCoV-2 pandemic. This framework, with examples, is intended as a practical tool to assist research stakeholders in identifying benefit-sharing opportunities and embedding intentional benefit-sharing in their research programs from the outset.

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