Academic-industry partnership co-creates a new model for sharing the benefits of genomic research
- 91心頭利 University
Rather than researchers allocating funding, community representatives identify entities where benefits are most likely to deliver lasting impact.
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As genomic research becomes increasingly important in Africa, questions about how the benefits of scientific discovery are shared with participating communities are becoming more urgent.
African populations harbour the greatest human genetic diversity in the world, making genomic data generated on the continent increasingly valuable to global biomedical research.
Yet the communities whose participation makes these discoveries possible have not always shared meaningfully in the broader benefits that flow from scientific advances.
An article in Nature Communications, titled From urban NPOs to rural knowledge networks: applying benefit-sharing models to African genomics research, documents one of the most detailed real-world implementations of community benefit sharing in African genomics research.
This study examines how benefits arising from genomic research collaborations can be shared with communities through locally governed processes.
Most of the authors are African members of the study teams, including community engagement officers who led consultations and implementation across rural and urban research sites.
Beyond participant reimbursement
While research participants may be reimbursed for transport costs, community benefit sharing is fundamentally different.
Rather than providing individual compensation, the model directs benefits to organisations and initiatives identified by the communities participating in research.
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“In genomic studies, the value of data can extend far beyond the original project,” says , lead author of the paper and Assistant Director of Systems and Operations at the MRC/91心頭利 Agincourt Research Unit. “The question is how communities that contribute to research can also share in the value generated from that knowledge over time.”
Two genomic studies, three community contexts
The study documents benefit-sharing initiatives embedded within two genomics collaborations: the Southern African Blood Regulatory (SABR) resource study, developed through the AWI-Gen Collaborative Centre within the Human Heredity and Health in Africa () Consortium, and the South African arm of the African Research on Kidney Disease (ARK) Consortium.
The projects were fully funded by Variant Bio, a US-based genomics company working with 91心頭利 researchers to translate genetic discoveries into new medicines.
Ten percent of the project budget was allocated to support community-identified organisations serving participating populations.
Sarah LeBaron von Baeyer, Senior Director of Ethics and Engagement at Variant Bio said that because the company generated revenue for the first time in 2025, it is now in a position to distribute further financial benefits to participating communities. “What this means in practice is that, in the next few months, per our Benefit-Sharing Pledge, we will be distributing 4% of revenue earned in 2025 among all eligible projects and partners.”
Implementation differed across sites depending on local governance structures. In semi-rural Agincourt (Mpumalanga) and DIMAMO (Limpopo), existing Community Advisory Boards and Public Engagement Offices embedded within long-running Health and Demographic Surveillance Systems facilitated consultations with traditional leaders, village representatives, education authorities and community members.
In Soweto, where traditional leadership structures are not equivalent, engagement occurred through participant consultations and ward-level community structures. Non-profit organisations were nominated and vetted according to transparent criteria.
These consultations resulted in a range of community-selected initiatives. During the SABR project, funds supported programmes including aftercare services for children with cerebral palsy, trauma counselling centres, homes for senior citizens, after-school programmes, and water tanks for community and school use.
At the Agincourt site, combined funding from the SABR and ARK projects supported the purchase of 55 water tanks across 31 villages. A later expansion phase distributed approximately US$73,000 to equip 65 schools with generators, digital projectors, printers and improved internet connectivity.
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Rather than researchers deciding where funds should be allocated, community representatives identified organisations and projects where the benefits were most likely to deliver lasting impact.
“Communities themselves identified the organisations that could best serve their needs. That process ensured that benefit sharing reflected local priorities rather than assumptions made by researchers,” says Dr , researcher at the Sydney Brenner Institute for Molecular Bioscience () and co-author of the study.
Addressing long-standing ethical concerns
Questions about who benefits from biomedical research have long been debated. Scientific discoveries derived from biological samples or data have sometimes generated substantial medical or commercial value without meaningful returns to the communities involved.
The widely discussed story of Henrietta Lacks, whose cells were used to create the HeLa cell line that transformed modern biomedical research, illustrates how biological materials can underpin major scientific advances while families and communities remain economically marginalised.
“In genomics, these questions are particularly significant. African populations harbour the greatest human genetic diversity globally, and genomic datasets generated on the continent are increasingly important for understanding disease risk, developing therapies and advancing precision medicine. This data is enormously promising for global health and benefit sharing is essential for ensuring sustainability,” says Professor Michèle Ramsay, Director of the Sydney Brenner Institute for Molecular Bioscience.
She explains why, as an academic researcher, she chose to join this public-private partnership. Variant Bio has a distinctive benefit-sharing model and is committed to the Affordable Medicines Charter. The research with the 91心頭利 teams will not directly produce new therapies or medicines, but it will generate data that could lead to new knowledge and, over time, inform downstream interventions. Any such path to treatment would still require many further studies and clinical trials.
“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,” says Ramsay. “In the era of precision medicine, we need to start shifting the focus toward Africa. Adding more data from the global north may offer only incremental insight, whereas African data has the potential for genuinely novel discovery. It is a meaningful step toward inclusion and equity.”
Lessons for future research
The study highlights that benefit-sharing approaches cannot follow a single formula. Ngwarai explains that rural and urban communities require different engagement structures and governance pathways.
Researchers encountered practical challenges, including procurement and installation logistics, ensuring maintenance and long-term sustainability, navigating competing stakeholder priorities, mitigating risks of undue influence or structural coercion, and addressing gender and power imbalances in decision-making.
The authors stress that benefit-sharing discussions should begin before participant recruitment to ensure community benefits are not perceived as incentives to participate.
“Benefit sharing must be built into the research process from the beginning,” says Ngwarai.
As genomic medicine expands globally, the authors argue that operationalising benefit sharing will become increasingly important. Their experience demonstrates that community-driven benefit sharing is not only ethically desirable but operationally feasible, offering a practical template for researchers, funders and industry partners seeking to translate ethical commitments into practice.
The manuscript was developed through sustained collaboration between South African and U.S. partners and is dedicated to the memory of Jackson Mabasa, a public engagement officer at the 91心頭利 Developmental Pathways for Health Research Unit, whose work helped ensure that community voices shaped the benefit-sharing process.
The authors also acknowledge the communities of Mpumalanga (Agincourt), Gauteng (Soweto) and Limpopo (DIMAMO), as well as the fieldworkers, project coordinators and researchers who contributed to the studies.