A blueprint for ethical benefit sharing

17 July 2026 - Wits University

African genomics researchers propose how ethical principles can translate into practical action.

South Africa is pioneering new ways in which to embed ethical benefit-sharing in genomics research through community-led decision-making.

Speaking at the World Congress of Bioethics (WCB) in Johannesburg on 8-10 July, Ngoni Ngwarai, Assistant Director: Systems & Operations at the SAMRC/Wits Rural Public Health and Health Transitions Research Unit (Agincourt), presented an operational blueprint for researchers, universities, funders and industry partners seeking to translate ethical principles into practical action.

Now in its 18^th year, the WCB was held on African soil for the first time.

This is significant precisely because the vast wealth of human genetic diversity held by African populations, and the genomic data generated on the continent, have been invaluable for the global scientific community’s understanding of disease and the development of advanced therapies.

Despite this, many communities that have participated in research have failed to see returns from the scientific discoveries their contributions helped make possible.

Ngwarai’s presentation focused on an article published in Nature Communications, From urban NPOs to rural knowledge networks: applying benefit-sharing models to African genomics research.

Led by mostly African researchers from the University of the Witwatersrand (Wits), the study provides comprehensive real-world examples of how ethical benefit sharing can be embedded into genomics research through community-led decision-making.

Ethical research starts with listening

Unlike participant reimbursement, which covers costs such as transport or time, community benefit sharing directs resources towards projects identified by the communities themselves. The goal is not individual compensation, but sustainable improvements that contribute to the community long after a research project has ended.

"In genomic studies, the value of data can extend far beyond the original project," says Ngwarai, who was lead author of the paper. "The question is how communities that contribute to research can also share in the value generated from that knowledge over time."

The study considers 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 (H3Africa) 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 Wits researchers to translate genetic discoveries into new medicines.

Ten percent of the project budget was allocated to support community-identified organisations serving participating populations.

"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 Professor Michèle Ramsay, Director of the Sydney Brenner Institute for Molecular Bioscience (SBIMB).

The approach reflects a growing shift in research ethics – from conducting research on communities to conducting research with communities.

Rather than assuming what communities needed, researchers created consultation mechanisms for communities to identify their own priorities, nominate beneficiary organisations and oversee transparent decision-making.

One model does not fit all communities

The researchers acknowledge that implementing ethical benefit sharing is challenging. Projects must navigate procurement, long-term maintenance, competing stakeholder priorities, gender equity, governance, risks of undue influence and ensure that benefits do not become incentives for research participation.

The study also highlights that ethical community engagement cannot follow a single formula.

In Agincourt, Mpumalanga, and DIMAMO in Limpopo, researchers worked through long-established Community Advisory Boards, traditional leaders, and Public Engagement Offices that have built trust over more than three decades.

In Soweto, where governance structures differ, consultations took place through participant groups, ward councillors, and local non-profit organisations.

The differing approaches demonstrate that meaningful engagement must reflect each community's existing leadership structures, history, and social context.

Turning ethical principles into practical outcomes

Across the Southern African Blood Regulatory project, community consultations resulted in tangible investments which provided aftercare services for children with cerebral palsy, trauma counselling, homes for older people, youth development programmes, and water infrastructure.

In Agincourt, combined funding from the SABR and ARK enabled the installation of 55 JoJo water tanks across 31 villages. A later phase invested approximately US$73,000 in educational infrastructure, equipping 65 schools with generators, digital projectors, printers, and improved internet connectivity.

As genomics continues to expand across Africa, the study demonstrates that community-driven benefit sharing is both ethically sound and practically achievable, offering a model for future genomics research across Africa.

Top 4 Takeaways about Ethical Benefit Sharing

1. Ethical research goes beyond informed consent. Communities are partners – not simply participants – in research and should play an active role in deciding how benefits are shared.
2. Benefit sharing should be community-led. Communities should identify organisations and projects that address their priorities.
3. Context matters. Rural and urban communities require different engagement and governance models. Flexible, locally appropriate approaches are essential.
4. Trust is built over time. Long-term relationships, Community Advisory Boards and transparent governance create stronger, more ethical research partnerships.