A framework for the promotion of ethical benefit sharing in health research

Abstract

There is an increasing recognition of the importance of including benefit sharing in research programmes in order to ensure equitable and just distribution of the benefits arising from research. Whilst there are global efforts to promote benefit sharing when using non-human biological resources, benefit sharing plans and implementation do not yet feature prominently in research programmes, funding applications or requirements by ethics review boards. Whilst many research stakeholders may agree with the concept of benefit sharing, it can be difficult to operationalise benefit sharing within research programmes. We present a framework designed to assist with identifying benefit sharing opportunities in research programmes. The framework has two dimensions: the first represents microlevel, mesolevel and macrolevel stakeholders as defined using a socioecological model; and the second identifies nine different types of benefit sharing that might be achieved during a research programme. We provide an example matrix identifying different types of benefit sharing that might be undertaken during genomics research, and present a case study evaluating benefit sharing in Africa during the SARS-CoV-2 pandemic. This framework, with examples, is intended as a practical tool to assist research stakeholders with identifying opportunities for benefit sharing, and inculcating intentional benefit sharing in their research programmes from inception.

The role of Data Transfer Agreements in ethically managing data sharing for research in South Africa

“…While researchers in the global north are becoming more aware of global inequities, engagement with benefit sharing is still a largely abstract concept with limited translation into clear strategies which encourage more equitable practices. [27] In addition, the lack of regulatory support and infrastructure for benefit sharing, including the absence of details in national and international ethics guideline documents, do little to guide the implementation of benefit-sharing agreements. As a result, institutions end up interpreting and implementing benefit sharing as they deem necessary.…”

Perspectives from a Predominantly African American Community about Biobank Research and a Biobank Consent Form

“…For example, an accessible website that lists the general purpose of current and previous research projects and how the research information impacted medical care would be useful. Novel means to share profits or knowledge of health improvements with research participants should also be considered, especially when the path from sample procurement to profitable treatment will likely be long and complex and include hundreds or thousands of participants from many communities 10 …”

Trans-border transfer of human biological materials in collaborative biobanking research: Perceptions and experiences of researchers in Uganda

“…A greater majority contended that the benefits of research should be fairly and equitably shared with the population or country from which the samples were taken. Currently there is hot debate surrounding this issue of benefit sharing in genomic research and biobanking, particularly in LMICs [22,23,48,49] .…”

“…A greater majority contended that the benefits of research should be fairly and equitably shared with the population or country from which the samples were taken. Currently there is hot debate surrounding this issue of benefit sharing in genomic research and biobanking, particularly in LMICs [22,23,48,49]. Benefit sharing is defined by Schroeder [50], as “the action of giving a portion of advantages/profits derived from the use of human genetic resources to the resource providers to achieve justice in exchange, with a particular emphasis on the clear provision of benefits to those who may lack reasonable access to resulting healthcare products and services without providing unethical inducements” (p. 207), may not necessarily be monetary.…”