Saturday, May 17, 2008

Participatory Research Meets the IRB

Participatory Research and Participatory Action Research are approaches that seek to include the people studied as participants in framing and answering questions. In Participatory Action Research, researchers also seek to work with participants to effect change, rather than merely identifying problems. For reasons unknown to me, many researchers who embrace these approaches are affiliated with the discipline of geography. In 2006, a number of American and British participatory researchers frustrated by ethics committees found themselves discussing the problem at meetings of the the Association of American Geographers and the Royal Geographical Society/Institute of British Geographers. The result was a special thematic issue (volume 6, number 3, 2007) of ACME: An International E-Journal for Critical Geographies. The ten essays show that participatory researchers think hard about ethics, and as a result often find themselves struggling with ethics committees that do not.

In their introductory essay, "Participatory Ethics: Politics, Practices, Institutions," Caitlin Cahill, Farhana Sultana, and Rachel Pain explain that

As participatory researchers, we pursue research and other activities with communities (or traditional research ‘subjects’) as collaborating partners, with the primary goal of working towards positive changes on issues identified by the collective. We try to engage in all aspects of research - research questions, the choice and design of methods, the analysis of data, the presentation of findings, and the pursuit of follow up action - as collaborative projects which require negotiation between the different parties. So the complex challenge of negotiating ‘ethics’ – as multiple and contested, and whether in institutional or everyday spaces – is central to our research process and inquiry. (305)

Unfortunately, that kind of thoughtful approach to research ethics does not easily fit into the standardized, medical model of ethics committee in the United States and Britain. As the authors note, "researchers seem increasingly subject to a restrictive, inflexible and top-down view of what ‘ethics’ should be, via the codes of human subject panels which we are expected to adhere to." (307)

The remaining essays express frustrations that will be familiar to any social scientist who has followed the IRB debates. Deborah Martin complains that IRBs

conceptualize research participants as “subjects” who face potential harm and exploitation in the research process . . . [Participatory research], however, seeks to redefine the researcher-subject model, conceptualizing research as a collaborative, negotiated process in which the direction and benefits of the research are as much a product of the participants’ involvement as the researcher’s. (322)

Sarah Elwood notes that "institutional ethics assume that ethical problems and risks can be identified before they occur, can be identified outside the context of the research situation, and that rules for ethical practices can be universal." (331) Kye Askins served on an ethics committee and was dismayed that the process emphasized forms and paperwork over training students to think ethically. (358) And Megan Blake complains that "the easy camaraderie born of friendship and underpinned by trust is undermined by [committee's] implicit assumption that the research may lead to harm, exploitation or suffering for those involved." (417)

Two essays present outrageous IRB behavior. Blake's experience at the University of Sheffield sounds more or less comical:

I was required to get a [criminal background check] before I could research the food practices of my children and their friends, and had to have my friends sign confidentiality and copyright agreements as I served them a cup of tea and a biscuit in my home. If I followed strictly the guidelines on anonyminity, I would also be required to ignore the details that I know about my friends as individuals when I analyse their accounts. (417)

More seriously, Matt Bradley spent months meeting with IRB staff and the chair, only to have his project--a documentary film--rejected on the grounds that "there is risk that people in the community might be upset about the portrait that has been painted." (340) This is what lawyers call viewpoint discrimination; Bradley was free to tell a happy story, but barred from telling an angry one. Yet even as it guessed about this risk to a community, the IRB refused to compare it to any possible benefit to that community, as opposed to individual participants or to scholarly knowledge. He concludes that far from manifesting respect for persons,

the IRB’s insistence on anonymity in my case smacked of the paternalism and control . . . Evident in the communications I received from the committee is the notion that the people whom I was involving in my research are not smart enough to make decisions for themselves or to understand the implications and possible repercussions of their decisions. Even more problematic, however, is the notion that the committee is smart enough to make these decisions for the ‘subjects’ and will make choices both about what I can or cannot collect from them and how they can represent themselves. (347)

Other complaints are more specific to the authors' commitment to participatory research. Elwood enlisted non-scholars as "community map makers" in a participatory project. Though these map makers were, in effect, co-authors,her IRB wanted their names stripped from the maps. (333) Eventually, the authors agreed to remove the names from maps printed in academic publications. Thus, the IRB denied the map makers credit for their work. Caitlin Cahill dislikes the Belmont Report's admonition to "do no harm," on the grounds that for a participatory-action researcher, harmlessness alone is an abdication of responsibility. (366) Peter Hopkins complains that "the detached, disembodied and ‘tick-box’ approach adopted by many ethics committees often renders absent the positionalities of the researchers, downplaying the significance of researchers’ life experiences, biographies and complex identities.” (387) While he does not describe in detail his experience with committee approval, his article suggests that he was far better prepared by his own reading than by any guidance from a committee. (389)

The authors do find some benefits to the process. Elwood notes, "discussing how to address the IRB’s concerns forced us to consider more specifically how the research process might affect participants whose experiences might differ dramatically from our own." (332) And rather than thrust an IRB-mandated consent form at her interviewees, she "begin[s] the process by trying to initiate discussion about the history and politics of informed consent in research, reasons why universities require researchers to follow certain protocols, or what the process recognizes and what it might leave out." (336) Thus, she concludes, "Institutional rules for ethical practice in research and systematic oversight of researchers, however partial and frustrating they may be, ensure that all university-based research has at least one forum where the ethics and human impacts of its activities must be considered." (337) Even Bradley, whose project was derailed ten years ago, claims that "the frustrations and different needs of qualitative and action researchers have been heard on many campuses," though for evidence he relies on an article noting positive developments on just two campuses. (347)

Despite the problems they have faced, the scholars represented in this issue appear remarkably hopeful, resilient, and determined to think seriously about research ethics, and they all seek to reform the ethics committee system rather than to escape from it. I hope the committees will prove worthy of their confidence.

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