Medical research subjects in Africa

March 25, 2023 10:07 PM

In the Absence of a Trophy, the Photo Is Proof. Kenyan scientist Norbert Odero writes in The Elephant about how voluntarism, coercion and compensation are understood for medical research participants in Africa and the West.
posted by tavegyl (6 comments total)

This was educational to me, because I did not know about the differences in how medical testing is approached in rich vs poor countries. Thanks for posting the article.
posted by medusa at 11:31 AM on March 26, 2023 [1 favorite]

Thanks for posting this tavegyl. My jaw dropped at the second paragraph:

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.

posted by spamandkimchi at 11:31 AM on March 26, 2023

I also appreciate the writer's criticism of the use of images:

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?

posted by spamandkimchi at 11:38 AM on March 26, 2023 [2 favorites]

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.

There is a non-insane concern somewhere in here: at some point, offering poor people a significant sum of money to participate in medical research borders on coercion.

It seems like it would be more sensible to pay at the daily rate for a local public servant, though, to reflect the public service offered. Teacher, policeman, administrative assistant at the ministry. I don't know how much more that it is (especially and necessarily excluding the graft that is often supplementary compensation in those positions), but I assume it is more.
posted by praemunire at 11:59 AM on March 26, 2023

I can speak a little to the Western end of the story. Through the 00s I worked as a post-doc in a Dept Immunology and Biochemistry. The graduate students regularly asked around for 10ml of blood to build up a control sample to compare with whatever condition/disease for which they were gathering data. It was ethically impossible to ask any of the students, even fellow graduate students, out of concern for coercion implicit in the power imbalance between The Science and the minions who were dependent on it for their income and future. I lost count of the times I was asked and agreed to donate - at least an armful, all told. I had to look the other way because I faint at the sight of blood. I also note the difference between taking some blood from me and putting potential therapeutics into me.

Right about that time in 2006, a drug trial at Northwick Park Hospital near London went horribly wrong when six young men experienced a cytokine storm and were rushed to ER with multiple organ failure. But get this: when the news about this debacle reached the public, drug-trials companies were inundated with volunteers - young men who hadn't realised until then that they could make £2,000 over a couple of days just for putting their life-time health at risk. Why, they did that every weekend for nothing.
posted by BobTheScientist at 12:43 PM on March 26, 2023 [5 favorites]

There is a non-insane concern somewhere in here: at some point, offering poor people a significant sum of money to participate in medical research borders on coercion.

I am a social science researcher and I would not be allowed be ethics committees in the developed world to offer anyone, least of all marginalized people, even marginally large sums of money for participation for exactly this reason. Like if a study were very burdensome I could give somebody $20 but that's pretty much the limit before the ethics board starts raising eyebrows.

Now of course "burdensome" means something entirely different in a medical trial, but just to point out this isn't about "in the developing world" or "in poor countries." This is an ethical concern everywhere with all sorts of research. Though it does feel like shit that it basically means you can pay rich people more money than poor people because rich people don't need it.
posted by If only I had a penguin... at 2:17 PM on March 26, 2023 [7 favorites]