My very small IRB story
A week or two before I left the US to come back to the field, I went ahead and submitted an application for renewal of my IRB approval for this project. (This ethics approval has to be renewed yearly as long as the research is still going on.) I’d gotten approval last autumn from the UW IRB, going through what I think is a pretty typical round of back-and-forth about specific wording and explicit clarification of protocols on certain forms:
Please confirm that any identifiable information disclosed by a participant about someone else who is not participating in the research will be removed from the data and not used in any publications.
As the researchers cannot guarantee that the research presents no risks to participants, please revise this statement to read “no anticipated risks.”
But I figured the renewal would go smoothly, given that I was continuing the same project and hadn’t made any changes in my project design–I’m still talking to the same kinds of people I had planned to, using the same basic interview structure, and so on.
Imagine my surprise when I got a message last week that
Before we can approve this application, there are a several updates that need to be made to the consent document. These all should have been caught and addressed before the original approval, therefore, we cannot approve continued research activities until they are completed:
It turned out that the consent document they had on file did not include a local contact for participants to call once I leave Russia. Important stuff for sure, though I distinctly remember making this same fix before, making me wonder whether they hadn’t updated the file last time. Of course I still should have checked over the document again, instead of just downloading it from my initial application and e-mailing it back to them without reading it!
So I’m currently in official limbo, in the field but not allowed to collect data. Yikes! The only saving grace is that, since I just got back and Moscow is in a late-summer lull, I’m not missing a whole lot right now, and I should have approval back soon.
What do we do with IRB?
I’ve been thinking about my relationship with the IRB process this week, not just because of the mild annoyance of the above situation, but also after reading Kim Sue’s piece on Somatosphere, “Are IRBs a Stumbling Block for an Engaged Anthropology?” Sue has a much tougher row to hoe, as she’s been working on a medical anthropology project in Massachusetts, exploring how addiction and the prison system intersect in the lives of women with opiate addictions. Thinking about going through an IRB process with such a project made me grateful for only having minor technical issues to deal with. Studying a group of people 1) potentially in prisons, 2) with addiction problems and 3) likely other significant health problems, who are also a 4) politically disempowered and stigmatized group which was 5) historically abused by scientists in the name of research? Yikes. I’m incredibly glad she’s doing the project–the topic is deeply important. But I don’t envy her the intense and sometimes (as she describes) ill-fitting IRB scrutiny.
This is a topic that I’ve discussed often with colleagues: on the one hand, we want to create a system that encourages ethical conduct in research. We don’t want to take advantage of our own participants, and we absolutely want to avoid anyone repeating the kinds of abuses that have all too often occurred in the recent past. And yet, the IRB we deal with is an IRB we complain about dealing with. Sometimes it is merely kvetching about having a bureaucratic hoop to jump through–and that’s ok, really. If the cost of preventing another Tuskegee is me having to stop data collection for a week to fix a mistake on my consent documents, then we truly live in a golden age.
Other times, we wonder about the specific ways in which IRB concerns are a mis-match for many of the ethical dilemmas we actually face in the field. The IRB wants me to be sure I say “no anticipated risk” instead of “no risk” when I ask people to consent to an interview. I’m more concerned about how to handle privacy issues in social media, whether it’s ethical to listen to racism without challenging it, and how to reciprocate the help of participants who won’t even let me buy them a cup of tea. We often wonder what kind of system might work better–what sort of IRB could be helpful in supporting ethical research conduct, instead of being a mere hurdle to clear before doing research?
Another worrisome bit is “that IRBs have a very central role in shaping our experiences of doing research,” as Sue puts it. I’ll borrow her well-chosen quotation here:
As Carol Heimer and JuLeigh Petty have written in a review on bureaucratic ethics and the IRB, “When IRBs do not expressly forbid research, they nevertheless often have a chilling effect early in the process when researchers plan studies that avoid “vulnerable” populations and sensitive topics in order not to run afoul of the IRB, and advise their students and colleagues to do likewise (Bledsoe et al. 2007, Johnson 2008)” (2010: 609).
And I must admit that in this way, the IRB has certainly shaped my project. It hasn’t been a major change–I was never planning to conduct my research in a hospital, a prison, or an orphanage, for example. But I did choose to focus on adults and young adults in part because I’d been told that studying children or teens would be quite a bit more difficult to gain approval for. I suspect that many of us make small changes like this.
The punchline to that decision is that once I started talking to people here about my interest in family and “family values,” several of them immediately wanted to bring me to events where families–that is, including children–were going to be. They’ve introduced me to people’s children, invited to children’s performances, talked to me about their work in primary schools.* So my IRB might get one more revision after all!
In any case, this all makes me very curious about other researchers’ experiences. Has the IRB, or your own concerns about the IRB, shaped a project of yours?*For the record, I’ve been treating these encounters as outside the scope of my research. I haven’t interviewed any children, nor will anything I observed of them appear in any presentation or writing.