ELSIcon2022 Paper: Disrupting the status quo: a new model for benefit sharing in genomics research, a case study from South Africa

ELSIcon2022 • Paper • June 2, 2022

Erin Burke, Michèle Ramsay, June Fabian

Genetics researchers have earned the label “extractive biocolonialists” because they collect samples and fail to further engage with or compensate those who provided them. Though there has been progress away from this model, more recently, promises to participants of the broader benefits of genomic research and personalized medicine are not realized, especially for those from low and middle-income countries, minority or Indigenous groups. One way to ensure that groups receive tangible benefits is to design collaborations that include distribution of funds to communities in the short- and long-term. Specifically, Variant Bio, a genomics company, is transforming the way in which participants benefit from research by building a model whereby communities receive 10% of project budgets upon the conclusion of sample collection (short-term benefits) and 4% of revenue plus 4% of equity value if Variant is acquired or goes public (long-term benefits). These funds go to local initiatives that support capacity building, education, healthcare, or sustainable development. The benefit sharing plan is co-designed with communities through engagement with their nominated representatives, study scientists and Variant Bio to ensure their specific needs are met. Here, we present a case study of the benefit-sharing model deployed in a research collaboration between Wits University, Variant Bio, and the MRC/Wits Rural Public Health and Health Transitions Research Unit in Agincourt, South Africa to study the genomics of kidney disease. Compensating partner communities through benefit sharing is one way in which researchers can work towards co-designing ethically grounded, sustainable, culturally relevant partnerships in genetics research.