From urban NPOs to rural knowledge networks: applying benefit-sharing models to African genomics research

Despite repeated calls from international governing bodies for benefit sharing in biomedical research as a means of promoting mutual trust and reciprocity, real-world examples of benefit sharing are lacking. Here, we discuss benefit-sharing initiatives instituted as part of human genomics research projects carried out in both semi-rural and urban settings in South Africa. We explore lessons learned from applying different approaches to benefit sharing, as well as recommendations for ways to enhance success for future initiatives. Ultimately, we advocate for the adoption of flexible benefit-sharing models that take into consideration community representation and engagement, benefit management mechanisms, and long-term sustainability. The article reviews benefit-sharing efforts in South African genomics research, highlighting lessons from varied community settings and urging flexible, sustainable models that prioritize engagement, representation, and strong benefit management.