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When I first visited a leading global health organization in the US in 2014, I was overwhelmed by its behemothic stature. I was also taken aback by how the African, mostly the African woman and child, were a constant fixture on the walls of the institution. There were very few pictures of men. My experience is that men are skittish and have learned to distrust foreigners with cameras. Also, for various reasons that I won’t go into right now, it is also quite challenging to get men to consent to participating in research in rural Africa. I walked through the hallways looking at the large posters of African women and children, stuck in time, looking back at me. Their images, some women pregnant, others bearing young children on their arms, in long lines in front of rural health facilities that were too familiar, followed me with their eyes. Large white eyes like beads set on a beautiful black canvas of faces. I felt as if they recognized me. And I too, them. As if we shared the secret of the poverty and broken healthcare systems that had occasioned us to be in this space. They on display as subjects, or potential subjects of research, I as a researcher, occupying a higher social space thanks to my education and other opportunities that have trickled down to me. These images of Africans trapped in the uncertainty of the healthcare system, lost in thought, yet so hopeful, are too common on the walls and websites of every major NGO working in the African continent.

How much should we pay the African woman?

While implementing research in rural Kenya between 2007 and 2014, we were paying mothers of subjects 150 shillings per study visit. That is less than two US dollars per visit. The reasoning around this, and mostly around research done in sub-Saharan Africa and other developing countries, is that the subject stipend for participating in research should not exceed what people typically make in a day. Essentially, subjects are paid the perceived lowest amount for unskilled workers in these rural areas, or they are paid the lowest amount that one can live on in a day in the rural areas. A dollar or two per day is considered adequate. It is thought that any amount exceeding that would be economic coercion of sorts, and the strongly desired act of voluntarism by the subject would be lost.

Since most of the research volunteers in sub–Saharan Africa are women, the discussion centres around what a typical woman selling vegetables in a local market, for example, would make. The discussion never strays into the question of what people in formal employment—for example, the local primary school teacher—make in a day. Any additional burden such as travel, which is mostly on foot or on motorcycles, is assumed to be the normal way of life. Others such as the pain from injections and the drawing of blood, and other adverse effects, are assumed to be mitigated by the free healthcare received. The summation of this reasoning ends with the subjects in rural Africa making very little money from research, even though participating in research causes major disruptions to their social lives. It also creates a neo-colonial mentality in research where the typical rural African woman or child is perceived as a ready pool of human subjects available at a bargain, rendered desperate by the failure of the local healthcare systems and by government neglect.

When thinking of money, we should think of the environment too

I was recently part of a team undertaking very interesting and important COVID vaccine research. Part of my job involved reviewing study documentation as well as taking part in discussions about subject compensation. I worked with research centres to provide justification for subjects to be paid specific amounts of money, always acting as an advocate, while also being a good steward of the research budget. I advocated for increased payment in some circumstances and argued against overpayment. During the discussions around compensation, two words took prominence. One is voluntarism. A study subject is assumed to be volunteering their time, blood and other samples and personal data while withstanding pain in their desire to advance research and the increase of alternative therapies for themselves and humanity. Based on this assumption, participation in research becomes a higher calling, an act of altruism by the subject. The alternative to this explanation would be that, in participating in research, the subjects respond to incentives, be they economic, social, or psychological. This is more in line with the reality of capitalism and the world we live in. The question, therefore, is not whether the typical rural African woman is joining research to advance science; her decision is part of the survival calculus in an environment where healthcare is stretched and the reality of poverty is ever present.

Coercion is also a very prominent word in research. Coercion here implies that the subject is responding to some form of active or passive persuasion from the researchers to join research. The promise of money as compensation for research is passive coercion to say the least. The promise of efficient and superior healthcare to that which is available within the local ministry of health system is coercive.

The promise of money as compensation for research is passive coercion to say the least.

The politics and ethics around the two words, voluntarism and coercion, is loaded. It gets even more confusing when it is apparent that the pharmaceutical company implementing the study is focused on profiting from their new therapy or device; in most cases, saving humanity is as important as profits for these companies.  And these companies will hold on to their patents for as long as they can, no matter the human suffering, until they realize the desired return on their investments. Why then would the pressure be on the subject to volunteer when the whole setup is for profit? In the developed world, subjects are always very aware of the cost of drugs and how the healthcare system works. Study subjects are very vocal in negotiating for themselves and subject advocates ensure that their subjects’ interests are protected. In Kenya and many African countries, the subjects take what they are given. This is because of the pressure brought to bear on the subject by the local researchers to have them believe in the alternative truth that research is charity, and not business.

How do they do it in the West?

While working in the West, I have waited to hear of benchmarking decisions formulated around subject compensation based on the amount of money that waiters and waitresses make. Or based on the hourly payment of anyone making anything below the minimum wage. So far, I haven’t. The benchmarking in clinical research in the West always considers what skilled workers would be making per hour, how difficult it is to recruit from the population, past precedent, and the economic incentives that would result in quick recruitment and in keeping the subjects in the study. It is not based on any preconceived ideas of the researcher, it is not based on their perception of poverty and on how little people can get by. It tends to be based on the reality of the market forces, equity and study needs.

In addition to this, any transport and accommodation requirements are met through provision of lodging and reimbursement for transport costs, among others. The word coercion is therefore not prominent in the West as it is in developing countries. The assumption in the Western world is that the subjects there deserve a better quality of life when participating in research. Their time is also more valuable. They are also capable of making complex decisions to join research. They are not just a pool of humans readily available for data mining. On the other hand, the decision to pay a very small stipend in developing countries is tied to the image of the local African woman, or man, in rural areas. This is the same image that is captured in photos during the field trips to Africa by Westerners. And in this image, the African is seen as one who is hardened in his environment and quite capable of surviving on very little, one who should be thankful for the little that they receive since the options available to them is either broken, or not working. This assumption is also supported by local researchers and institutions who consider any additional benefits towards the welfare of subjects to be secondary to the outcome of the research. The continued existence of these colonial attitudes in research is strengthened by an image of the African in research that is based on a single story, on single moments captured on a photograph. These are the images I saw on the walls of the prestigious research institution I visited.

Images are powerful tools

In the absence of a trophy, images are the proof of that rich encounter between those in power and the powerless in those far-flung places. Images are also proof of the need for funding. They are also proof of work done. They are proof of privilege and relevance. They are also proof of love. Of comradeship.

The images in the halls of international public health organisations have served to encourage donations for research, providing the much-needed momentum and acceleration of interventions to improve life. On the other hand, these images have also reduced the worth and the story of the African woman, man, or child into a single moment captured at the click of a camera. In that sense, such images on the websites and walls of research centres have focused on a single story, sometimes perpetuating a stereotype of the African, often the stereotype of people without choice, but who can provide the much-needed data at the lowest cost to the pharmaceutical world, their aspirations and hopes not mattering in the calculus of profit and power in international research. Do these people go to weddings? Do they have smart phones? Are they on Instagram? Do they enjoy Christmas? Or are they stuck in that moment, in that small health facility waiting to be saved by international researchers. Does their voice matter? Or is theirs already drowned by the strong collaboration between the ministries of health, the local administration and international researchers and pharmaceutical companies?

The assumption in the Western world is that the subjects there deserve a better quality of life when participating in research.

With increased human subject research in Africa, there needs to be benchmarking that is focused on justice and human rights. How much compensation for research is reasonable to cover transport and time and allow the African woman living in rural poverty to save some money for food for her family after a whole day spent traveling for research? How much does local skilled labour cost per day in the rural setting? Researchers should focus on financial justice rather than perpetuating financial oppression while hiding behind the principle of coercion and voluntarism. And beyond that, if the rural African woman and child are going to be forever immortalized as the face of international research, then there should be a balance between their desperation and their resilience in these challenging environments. That balance is self-worth. It is power. And this power and self-worth are tied to the representation of the conqueror as well as the conquered, the researcher and the researched, through images and films.