Back in the 1990s, a group of sex workers in Nairobi, Kenya, seemed to be immune to HIV. Scientists have drawn repeatedly on that group in ongoing efforts to develop a vaccine. Today I read a news piece by Melanie Gosling, reporting that, “Nairobi sex workers…want to establish a code of conduct for researchers in an attempt to get some benefit from the decades of studies they have taken part in.”
It highlights the tension in research, which principally benefits people other than those providing data (whether through words or blood samples). One researcher quoted is Gosling’s piece put it bluntly: “Researchers are not there to solve their problems.”
And yet, those providing data don’t always have a clear understanding of that. As historian Melissa Graboyes has said, “People regularly mistake the idea that they are participating in an experiment and it’s designed to benefit them personally, rather than the experiment is designed to generate data that can be used to answer important questions and hopefully get us closer to solving some important problems.”
That’s consistent with a quote from the piece on Kenyan sex workers:
A male sex worker, who wanted to be known as Jonathan, said one of several problems they had with the research was that the consent forms were difficult to understand.
“So you sign contracts you don’t understand. Then maybe they give you drugs that make you drowsy or dizzy, but you didn’t know this,” he said.
Part of the solution to that immediate problem of understanding is simple, clear consent forms. As Rachel Glennerster, Executive Director of J-PAL, tweeted: “I favor clear simple forms, not long complex ones that U.S. health regulations require” (edited slightly to translate from Twitter-ese).
But this points to more than that. Participants in studies provide data. Hopefully that data benefits someone besides the researchers involved. Hopefully it contributes to better policies. But chances are that it won’t benefit the participant directly, at least not much. An obvious solution is to pay participants in some form. But how do you identify the right amount?
Some researchers ask her [one of the sex workers] for help, such as “mobilise five or ten ladies and we will pay you”. After spending time doing this, she is given “a small token, maybe enough to find food to eat that day. But we are making their work easy”.
The alternative that Nairobi’s sex workers are proposing is a novel one: Organize. Then they can collectively negotiate what they see as appropriate compensation for participating in research.
How do you believe that researchers should benefit their research participants?