Kim Dionne recently interviewed Melissa Graboyes on the excellent new Ufahamu Africa podcast. Graboyes wrote a history – The Experiment Must Continue: Medical Research and Ethics in East Africa, 1940-2014. I’m reading the book, and Graboyes provides a rich picture, filled with first-person reports from East African participants in research.
Dionne asked Graboyes for key takeaways. Here’s one on consent, which very much applies to social science research.
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. This disconnect is really profound and it jeopardizes consent.
The basic components of consent laid in the Nuremburg code, laid out in European guidelines, laid out in U.S. national law, is that consent has to be informed, it has to have understanding, and it has to be voluntary. So we can inform people by giving them a consent form translated into Swahili. We can inform them by reading that consent form in Swahili. But if they don’t understand what we’re saying and can’t accurately describe back the kind of experiment they’re participating in with the commensurate risks and benefits that go with it, that’s not really voluntary consent, and it jeopardizes the idea that they are autonomously choosing to participate. I think that there’s a lot of research going on that is stumbling at that step, that we’re formally checking all the boxes we need to, but that we’re not adhering to the real meaning of what that rule is supposed to be about. [I’ve edited very slightly for readability.]
The interview has much more, and the podcast overall is a delight. I recommend it and Graboyes’ book.