Informed consent vs control of information

I was really struck by Lua Wilkinson’s recent post on the ethics of photography in low income countries.  She included a fascinating anecdote about Dorothea Lange’s famous photo of a California sharecropper and her children, which later turned into one of the iconic images of the Great Depression:

According to reports, [Florence] Thompson and her family were not happy that they had unknowingly become the poster children for poverty. They voiced concern that the information surrounding the photo wasn’t even accurate… Thompson gave permission for the photo to be taken but was under the impression that the photos would never be published publicly, and even Lange herself notes that she failed to send the final prints to the family as promised.

The point is this: Lange asked Thompson if her photo could be taken and Thompson said yes. The problem was not lack of permission. The problem was that Lange had control over that photograph, and there was little communication about what that actually meant. Lange controlled where the photo ended up, as well as how Thompson and her family were portrayed.

The Thompson family was turned into a symbol of poverty. Lange, widely respected for her work in social justice, likely saw the family as such and knew the power that symbol would have on policy-makers and humanitarian aid. But in doing so, by turning the Thompson family into a symbol, she also took away their power. She controlled their identities. They had just one story, and that story was of poverty, whether they (as the story’s central characters) agreed or not.

There are some obvious similarities here with the process of gaining informed consent in survey research in low income countries.  Every researcher I know is scrupulous about getting consent before beginning an interview, but I don’t think most respondents really know what will happen to the data they provide after the interview is finished.  The consent form never mentions that information about their household and others like it will be discussed by academics and policymakers at high-flown conferences around the world in a few years.  Call it partially informed consent – lots of information provided about the circumstances of the interview, but very little about who controls the data and how they interpret it afterwards.

Should Lange not have published that photo?  Its publication did help spur an increase in food aid to depressed areas of California, and it’s a truly striking piece of art as well.  But it remains the case that Thompson’s consent was only partial – to have the photo taken, but not to have it published.  Lange ought to have asked for her permission before releasing it.

And what of informed consent, then?  Admittedly the parallels are not exact.  Thompson and her family were easily identifiable and upset precisely because they could be identified in a way that they didn’t want, while IRB requirements mean that survey data is kept rigorously anonymous, and that respondents are promised that they won’t face any other problems as a result of participating in the study.  The fact that there’s a power imbalance between the respondents (who provide the information) and the researchers (who control its use) doesn’t inherently mean that the interaction is unethical.  Indeed, there’s a strong ethical case for research that aims to reduce poverty.  But it’s still important to think critically about the power dynamics present in this work, and particularly the question of whose voices get heard in development.  What might respondents say differently if they knew that their information wasn’t just of interest to the researcher, but might be presented on a global stage?

5 thoughts on “Informed consent vs control of information

  1. I had this discussion with several researchers this summer, specifically about ethnographic research where the respondents’ life stories ARE your research… how do you compensate/thank/contribute to their well being once you benefit (when you publish a book, or your career is significantly impacted) from on their stories?

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    1. Yes, I think that question isn’t discussed nearly enough. Aside from giving them copies of the research in accessible forms, I think staying engaged with work that’s trying to improve people’s lives in the country in the long term is also quite important. Supporting academia there, donating to local NGOs, pushing for better policies, what have you…

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  2. I think I learned a lot from your post. What came out of my reading, Rachel—was that you seemed to be saying the “respondent” individuals here ought to be doing their own publicity. (Don’t know if they would need an ‘agent.’) You are writing from a position of privilege. The “respondent” individuals do not possess that privilege. It is not me being unrealistic that I say so. It is simply to acknowledge the truth of this. It’s a fact. Those poor people are not that strong. I think the very first thing is the question of who can somehow tell the powerful they CANNOT do ‘whatever they want.’ Who can make THAT change come about. If this is the basic task, then I think my analysis is significantly different from yours. Which is a good thing, since everybody’s input is important and it is desirable to listen to a lot of voices. (By the way, I just got a facebook video, from a relative, about a peaceful demonstration in Belo Horizonte, Brazil, where she used to live, in which the report is that police suddenly attacked a peaceful demonstration, using tear gas bombs. The police are not being “respectful towards everyone.”)

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  3. “…there was little communication about what that actually meant.” It is completely impossible to control all of the communication. What is the purpose of photography? If there was a totalistic level of coordination or communication (with a poor sharecropper, give me a break already!) then what would be the need for photographs? We’d be omniscient communicators. As far as the power imbalance in societies everywhere, that’s true. Some persons have more power than others do. How are you going to equalize it? “Lange ought to have asked for her permission before releasing it.” In your dreams. I do not believe this reflects reality very well. This kind of equality between poor persons and those who study them has never happened in the past, it will never happen in the future, and it is not happening now as YOU write. But your last sentence, where you say “What might respondents say differently if they knew that their information wasn’t just of interest to the researcher, but might be presented on a global stage?” is actually very wise. You make a profound point. Still, what would that kind of “Respondent” power mean? It would mean they were operating their own publicity department on a global stage that is also a place where communication is a difficult and many-troubled thing. They would still have to self-promote. There is, unfortunately, no direct conduit between human beings. There are blockages. All kinds of blockages.
    Everyone is celebrity. Everyone wants their fifteen minutes of fame. (But Warhol never actually said that, which I should probably be sure to mention.)

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    1. So are you saying that the powerful have a license to do whatever they want, and that this can never change? Because there’s quite a lot of historical evidence to the contrary. Just to stick to research methods, the mistreatment of the Tuskegee airmen led to the creation of much more rigorous ethical standards for medical and social research (here’s a summary: https://en.wikipedia.org/wiki/Belmont_Report). The point is to keep organizing and working towards ways of being in the world that are respectful towards everyone, not just the rich and powerful.

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