When researchers asked people in rural South Africa what they needed most, the answers had nothing to do with genetics. They needed water tanks, generators for schools, and homes for elderly residents. Now, a groundbreaking approach is making sure those wishes come true.
Genomics projects in South Africa are testing a new model where 10% of research money goes directly to communities helping with studies. Unlike typical payments that cover travel or time, these funds support projects chosen by the communities themselves—things that last long after the research ends.
"The value of this partnership is that it brings African data and African investigators into the discovery process, creating opportunities for African populations to benefit," said Professor Michèle Ramsay of the Sydney Brenner Institute for Molecular Bioscience at Wits University.
Two major projects are leading the way. The Southern African Blood Regulatory study and the South African arm of the African Research on Kidney Disease study have both committed 10% of their budgets to community-chosen organizations. Both projects are funded by Variant Bio, an American genomics company working with Wits University researchers to turn genetic discoveries into new medicines. The work was detailed in a paper published in Nature Communications.
The approach marks a shift in research ethics—moving from studying communities to working alongside them. In Agincourt, Mpumalanga and DIMAMO in Limpopo, researchers partnered with long-established Community Advisory Boards and traditional leaders who have built trust over more than 30 years. In Soweto, consultations happened through participant groups, local councilors and nonprofit organizations.
This matters because African populations hold enormous genetic diversity that has driven major scientific breakthroughs worldwide. Yet many communities that contributed data never saw any benefits from the discoveries their participation made possible.
"In genomic studies, the value of data can extend far beyond the original project," said Ngoni Ngwarai, lead author of the study and assistant director at the SAMRC/Wits Rural Public Health Research Unit. "The question is how communities that contribute to research can also share in the value generated from that knowledge over time."
The model is not without challenges. Projects must navigate complex issues like procurement, maintenance costs, competing priorities and ensuring benefits do not become incentives for joining studies. But researchers say the effort is worth it. This work took center stage at the World Congress of Bioethics held in Johannesburg in July—the first time the 18-year-old conference gathered on African soil.
For communities that have given so much to science, the message is simple: your input shaped discoveries worldwide, and now the benefits flow back home.