Professor Tivani Mashamba-Thompson, Director of the Centre for the Development and Implementation of Point-of-Care Diagnostics at the University of Pretoria (UP), was part of a group of international experts who co-developed the World Health Organization’s (WHO) recently released groundbreaking guidelines on the ethics of health-research priority-setting.

The guidelines mark a critical milestone in the global push for equity in health research.

Prof Mashamba-Thompson, a globally recognised expert in diagnostics and health innovation, represented both UP and the National Health Research Committee of South Africa in the development of the new framework.

The group of international experts were invited by the WHO to co-develop these essential guidelines, which aim to reshape how health research agendas are determined globally, especially in underserved and under-represented communities.

“This guidance is a long-overdue call to action,” Prof Mashamba-Thompson said. “If we are serious about achieving health equity, then our research systems need to be designed from the ground up with fairness and justice in mind, not just in how research is done, but in what we choose to research in the first place.”

Why this guidance matters

Health research has historically produced incredible breakthroughs, from vaccines and treatments to life-saving diagnostic tools. Yet, the distribution of these benefits has remained alarmingly unequal. The current research landscape is still heavily influenced by institutions, funders and policymakers based in high-income countries, often focusing on diseases and conditions that affect wealthier populations.

In contrast, conditions that disproportionately impact low- and middle-income countries continue to receive less attention, fewer resources, and slower innovation. The COVID-19 pandemic laid bare the urgent need for more equitable and coordinated global research agendas. It revealed not only the vulnerability of certain populations but also the inefficiencies and ethical challenges of fragmented, duplicated, and misaligned research efforts.

The newly released WHO guidance directly addresses these systemic inequities by urging stakeholders to place ethical principles and social justice at the core of research priority-setting.

Justice begins before the first experiment

Traditionally, the ethical oversight of research has focused on how studies are conducted – especially the protection of human or animal participants. What has been missing, however, is a framework to ensure that decisions about what research is conducted are also made ethically.

According to the WHO, justice in research should begin before the first experiment – at the moment research priorities are being set.

What is health-research priority-setting?

Health-research priority-setting refers to the process of deciding what research questions, health conditions, or populations should receive focused attention and resources. This process may be labelled differently depending on the context – terms such as “strategic planning”, “agenda-setting” or “priority exercises” are often used interchangeably.

Because research resources (such as funding, time and talent) are always limited, priority setting is both necessary and unavoidable. What the WHO guidance asserts is that this process must also be explicit, transparent, and ethically sound.

Who should be setting priorities, and how?

The guidance is clear: all individuals and institutions involved in research decisions have an ethical responsibility to ensure that their choices reflect ethical principles such as equity, transparency, inclusiveness, and accountability.

Key decision-makers include:

• Funders (public, private, non-profit or for-profit): Not only during strategic planning but also when setting eligibility criteria, reviewing grants or designing new programmes.
• Policymakers: Including national governments and transnational organisations, who shape country-level and global research agendas.
• Research institutions: Such as universities and academic centres, which must align their internal strategies with ethical and inclusive priorities.
• Researchers and research units: Who often decide what to study and should use ethical guidance to inform their personal and institutional choices.
• Community organisations and advocacy groups: Who provide critical insights from the ground and advocate for research that aligns with local health needs.

The WHO guidance also emphasises the active inclusion of marginalised voices, especially those from underrepresented countries, communities and disease areas, in these decision-making processes.

A living document, a global mandate

The WHO stresses that this guidance is a living document, one that will evolve through its implementation and as new experiences emerge from the global research community. It is not intended as a rigid protocol, but rather as a flexible and principled framework that can be adapted across diverse contexts and sectors.

Prof Mashamba-Thompson believes this guidance is particularly important for countries like South Africa, where local health challenges often differ significantly from those prioritised by global funding agencies. “We now have a moral and practical tool to advocate for research that reflects our communities’ real needs,” she said.

Toward a more just research future

This WHO initiative is not just about guidelines – it’s about shifting mindsets. By embedding ethical priority setting at the core of health research planning, the WHO hopes to spark a transformation in how global science operates.

With thought leaders like Professor Mashamba-Thompson contributing to its development, and institutions like the University of Pretoria supporting such leadership, South Africa stands at the forefront of this global movement for research justice.

To access the full WHO guidance on the ethics of health-research priority-setting, visit: https://www.who.int/publications/i/item/9789240110953