Benefit Sharing for Human Genomics Research: Awareness and Expectations of Genomics Researchers in Sub‐Saharan Africa

Abstract

Benefit sharing is an ethical issue that underscores the need to find a balance between access to genetic resources and the provision of fair benefits in exchange for access. The Human Genome Organisation (HUGO) is one of the few initiatives to have engaged with the topic of benefit sharing in human genomics. However, there is a lack of clarity on what benefit sharing entails in human genomics research and how it could be implemented in practice. This paper reports on a qualitative study that explored the views and expectations of benefit sharing by a group of genomics researchers in sub-Saharan Africa. Overall, while there was little awareness of benefit sharing among the researchers, there was support for benefit sharing in human genetics, and this was based on principles of fairness, solidarity, and reciprocity. This in-depth explorative study demonstrates the need for genomics research consortia in Africa to have open discussions on benefit sharing and to develop ethics frameworks for benefit sharing in population genomics studies in Africa. HUGO's statement on benefit sharing and the Nagoya Protocol could provide guidance.

Benefit sharing in genomic and biobanking research in Uganda: Perceptions of researchers and research ethics committee members

“…They also concurred that communities stand to benefit more from GBR than individual participants. Their views on the forms of benefits in GBR are consistent with Munung and de Vries (Munung and de Vries, 2020) and the Framework for Best Practice for Genomics Research and biobanking in Africa (Yakubu et al, 2018;H3Africa Ethics Working Group, 2017). It is important to note that research benefits may not necessarily be tangible.…”

“…Two respondents in this study were uncertain about how the benefits of GBR should be shared with research participants and research communities. Practical implementation of benefit sharing in GBR has similarly been raised by other authors (Moodley and Beyer, 2019;Munung and de Vries, 2020;Bedeker et al, 2022); the main concern being the intricacies involved in identifying the population or community that will share in the financial benefits. One way of operationalising benefit sharing is through community engagement where communities that stand to benefit from specific research endeavors should agree on the forms of benefits (Ndebele and Musesengwa, 2008;Munung and de Vries, 2020).…”

Rethinking benefit sharing in collaborative human genetic research from an Afrocommunitarian perspective

“…In this regard, this article is different from other studies like those published by Bege Dauda and others (Dauda and Dierickx, 2013;Dauda and Dierickx, 2017;Dauda and Joffe, 2018) that have mainly reflected on ethical issues around benefit sharing by drawing on dominant principles in the Global North. The article is equally different from other descriptive and explorative studies like those carried out by Nchangwi Munung and Jantina de Vries (Munung and de Vries, 2020), which describe opinions and views of participants regarding benefit sharing. This article is mostly normative, describing what the thinking about humanness, friendliness and partiality in African philosophy imply for what ought to be the case regarding benefit sharing.…”

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]. 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.…”