Only fair research is good research
Comments on a Volkskrant article – by Sandra Alba
The excellent article by Stan van Pelt in the Dutch newspaper, De Volkskrant, on dubious research practices in low and middle income countries is a timely reminder of the ethical issues in the research conducted by high-income countries scientists in low and middle-income countries.
The evolution of ethical issues
The article provides examples of egregious mistakes made in the past, such as the trial in the 1990s, by Pfizer, in Nigeria. In this trial, the guardians did not know that their children were unknowingly taking an experimental drug with severe side effects including death . The article also shines a light on issues with Janssen’s corona vaccine in 2021. Although tested and subsequently produced in South Africa, the majority of the vaccines produced by Janssen were distributed in Europe and the US.
These examples demonstrate the evolution of ethical issues: from cruel misconduct which directly harms study participants, to withholding the benefits of research from those who bore the brunt of it. We have made progress, but there is still a lot of work to be done.
Taking back control over research
Van Pelt’s article also provides encouraging examples of scientists taking back control over the research performed in their countries, like the Vietnamese researchers claiming their prerogative to perform DNA analyses to identify war victims. Taking back control over research is the key to redressing the system that enabled the Pfizer and Janssen scandals in the first place; a system that is still recovering from a ‘colonial hangover’, in the poignant words of WHO Director-General Tedros Ghebreyesus. And had van Pelt explicitly addressed these power imbalances in research in his article it would have helped the readers to better understand the root causes of many current issues in global health.
Product of a system
The Pfizer and Janssen scandals were neither unique nor the result of exceptionally unscrupulous individuals and pharmaceutical companies. They are the product of a system that is still unfairly skewed towards institutions and scientists in high-income countries. These were precisely the themes of the Cape Town conference on research integrity and the associated Cape Town Statement: who sets the research agenda in low and middle-income countries, how is funding allocated, what role do local researchers end up having in international collaborations, and who is the ultimate beneficiary of much global health research? As the research agenda is often set by donors in high-income countries, funds are disproportionately allocated to high-income institutes, the role of local researchers is often marginalised to “just” data collectors and it is mostly the scientists in high-income countries who depend on publications for career advancement.
These inequities explain why research articles on people’s health in Africa are submitted to international journals without any African authors. Statements such as the one recently issued by the prestigious journal Nature are very promising because they attempt to address these issues. More specifically, with this statement Nature now requests authors wishing to publish in their journal to include local researchers in the research effort, to develop locally relevant research questions in collaboration with local partners, to ensure that clear roles and responsibilities are agreed upon amongst collaborators ahead of the research, and to discuss capacity-building for local researchers.
However, journal statements alone cannot solve the complex issues in global health research. In Cape Town, during the integrity conference, African researchers expressed enthusiasm about the initiative and hoped that other journals would follow suit. But many were also cautious, pointing out that while research can tick all the boxes in the statement it can still be unfair and extractive. Just put a few African researchers on the authors’ list, say a few nice things in the statement, and done. And business can continue as usual because structural power imbalances remain unaddressed.
Working towards real change
Is the end of dubious research practices in global health in sight? I certainly hope so. Articles such as van Pelt’s are doing a great job to bring visibility to the issues at hand and statements by Nature are paving the way for change. But we need to be aware of the complexity of global health and all the interests at play to stay alert and ensure that we are working towards real change.