Trial and error
On Wednesday I gave a talk at the Ryerson University Daphne Cockwell School of Nursing’s Research Day. The other three papers in the session in which I presented were all very interesting papers, each dealing in some way with the challenges of research ethics review processes.
The three papers in the session were on: the use of qualitative interviews and participants’ ideas of risk; conducting research with Aboriginal persons and the use of innovative community-based research designs with potentially vulnerable participants.
One thing that almost every speaker raised was that ethics review boards sometimes make less-than-great decisions. Sometimes ethics review boards have unrealistic expectations. Sometimes they grossly overestimate the level of risk. Sometimes they overstep what others see as their clear jurisdiction. And sometimes they make requests of researchers that are felt to be inappropriate.
A few individual stories were shared (with collective gasps from the audience) about the kinds of less-than-stellar decisions ethics review boards have made. I cringed at some of them along with everyone else.
I know that these kinds of things happen. My experiences on a variety of ethics review boards over the past years has demonstrated that, yes, sometimes, ethics review boards or rather the fallible people who sit on these boards can make errors or mistakes. They can certainly overstep their boundaries and they can make unrealistic requests on researchers sometimes. Yes, these things all happen. But without sounding defensive, I think a “step back” needs to be taken.
I could start talking here about how research ethics is an underpaid, undervalued part of research that researchers “love to hate” (Case in point: I’ve never been to a lecture on how great research ethics processes are but I can easily recall many lectures focusing on the drawbacks of ethics review boards and processes). I could talk about how many researchers publicly view ethics review boards as “barriers” to conducting research, and the processes of ethics review as simply more “hoops” through which to jump — unnecessary and bureaucratic processes that are neither meaningful or helpful. I could also mention the fact that ethics review boards are the very last committee anyone in the faculty wishes to join, and that most boards are functioning without enough people, time, support or funding. I could mention that working in research ethics is looked at by many as a kind of hobby or “passion” and an “add-on” to one’s “real academic work”. I could even talk about how some feel that, in Canada, ethics review boards work without clear and explicit guidelines but are instead charged with the responsibility of interpreting (very good but) somewhat vague principles embodied in our federal guidelines, the Tri Council Policy Statement. All these things are, to some degree, true – and anyone who serves on, administers or chairs an ethics review board will be happy to sit down and discuss these issues at length with you.
But this isn’t what occurred to me as I listened to these clearly smart and experienced researchers talking about the kinds of things ethics review boards don’t do well. What did occur to me is the way that ethics review boards learn and the difficulty it seems researchers have with acknowledging that errors in judgement can be made and learning should and can then occur on the part of ethics review boards. Then perhaps changes in the processes that they require others to go through can subsequently be made. Much of the way we set norms in the research ethics review process, while grounded in policies and principles, occurs through building a body of relevant cases and referring back to these previous cases for guidance as new challenges arise.
Ethics review board members learn through more than simply reading and applying policy. For example, while many researchers in the social sciences and humanities believe that boards apply mostly biomedical Western-centric guidelines to all research without flexibility and without consideration of non-medical research or non-Western norms, I’d say that I think ethics review boards are doing a pretty good job of learning from experience as more and more protocols are reviewed, not just from what is considered to be overly rigid policies. Most ethics review board members and chairs that I talk to don’t just talk about learning from guidelines. In fact, they talk much more about applying guidelines and trying to think about guidelines within the context of the kinds of research that they review. Most say that they would never apply the same kind of review to a biomedical trial as they would, for example, to an ethnographic study. Nor would they force Western norms on projects, say, involving Aboriginal partners as participants. This doesn’t mean that many ethics review boards haven’t made the kinds of mistakes that researchers are citing and that were addressed in the papers yesterday and other talks that I’ve attended. But I think it does mean that ethics review boards are willing to learn from their mistakes and also willing to be flexible as they can, while still meeting their mandate of protecting participants, by using common sense and an open mind when approaching research of all kinds. I agree that grievous errors in judgement have occurred – yes, risk is often overestimated, researchers may be asked or told to do things that might not make sense within the confines of their research. But I think that positive changes are occurring.
What I hear from ethics review boards is that they want the ethics review process to be a conversation, instead of a lecture. They want for mutual and iterative learning to occur, with researchers informing ethics review boards and vice versa. Maybe I have rose coloured glasses on here, but I think ethics review boards are getting better at reviewing research in more contextual ways. I think policies are improving – the Tri Council Policy Statement second draft, along with other supporting Canadian documents, better addresses issues like risk, social science research, qualitative research and research with Aboriginal persons. It’s still nowhere near perfect, but I’d challenge you to find a process as demanding, variable and specific as this, that is perfect. I’m hoping that the kinds of anecdotes about bad individual decisions on behalf of ethics review boards that are told for effect can eventually be replaced by stories of how an ethics review board learned from an error in judgement, revised processes and worked together with researchers to make the processes and outcomes of ethics review more relevant and meaningful.