Ethical review - what's it good for?
I’m currently preparing a statement to submit to an ethical review panel for the research I propose to do during my Marie Curie Fellowship in Slovakia. The European funding element means that it has to be approved both by a national and by a European committee, although fortunately I don’t have long complicated forms to fill in, just a couple of pages to write justifying the research methodologies I’ve chosen and demonstrating that I’m thinking about how to minimise the risks of harming anyone, or how to protect the privacy of participants.
In my experience, most researchers tend to regard ethical review as just another hurdle to negotiate to get permission to actually start the research. Almost as an administrative task. Especially in the social sciences, there’s quite a prevalent attitude that ethical review is a recent foreign import (the ‘biomedical model’) that shouldn’t really apply to the social sciences at all. I admit I’ve got some sympathy for such complaints, but I also find that thinking about the ethics of my research improves its quality. It can even generate new ideas about how to work with participants and users to maximise the benefits of my research.
But let me get my cynical remarks in first! The trouble with ethical review boards is that, pressed for time as they are, they like standardisation and documentation. They want to see research protocols, participant information sheets, informed consent forms and the like, ideally all formatted according to the conventions of your discipline, so that they can quickly tick the boxes they need to tick. Only a lot of social science doesn’t easily fit into standard templates, and can’t always be scripted and safeguarded to the letter in advance.
I once asked a colleague why she was doing something differently from what it said in her project protocol. She looked at me aghast (probably shocked that I’d actually read the protocol):
‘You don’t expect us to stick to the protocol, surely? That’s just something you write to get funded!’
You don’t expect us to stick to the protocol, surely? That’s just something you write to get funded!
Not very ethical, you might think, but perfectly understandable in a way: she was running a project which was supposed to be collaborative - working with the potential users of the research on things that matter to them. Hence it made sense to spend time identifying problems and formulating questions with them in the early phase of the research. The ‘real’ protocol had to emerge from those discussions.
I once worked on a study about how older people use the Internet. It involved recruiting people who’d not used the Internet before and following them through a learning process. When we signed people up, we had to get them to give their informed consent, which included a statement about how the results could be used. From a formal standpoint, we’d thereby covered ourselves. But was it ethical? With the passage of time, I had increasing reservations: how can someone who’s never used the Internet before possibly predict what it’s going to mean to be observed as they learn to use it? They could not realistically anticipate the types of activities they would be asked to talk about, or the types of data they would be providing researchers with (primarily through onlinee discussion forums whose content we then analysed). I came to feel that it would have been much more appropriate to get participants’ informed consent after the study ended - or better, to neegotiate the terms of informed consent with them during the process, so that they were happy with the way their rights and our rights to the data were eventually defined. But would an ethics board have agreed if we’d refused to submit an informed consent form for prior approval?
Ethics are important and useful. Thinking about them can prompt you to see your research from a new angle. As long as the ethical review process represents a nudge to researchers to think through issues like those I’ve tried to describe above and to demonstrate this to a committee of peers, then I’m all in favour. The problem is when it’s reduced to a box-ticking exercise whose goal is to certify that a researcher has thought (and finished thinking) about the ethical design of their project. Because I’d go so far as to say that ethics are one of the few elements of your research where you have to remain flexible, forever on your guard and on your toes, at least in the type of research I do. But I wonder if that’s not more generally true, even outside the social sciences?
I was on the receiving end of a social sciences research project, yesterday. I was interviewed by a researcher about my experiences as a parent of an autistic child. Before she started she showed me a verbal consent form. I felt at first that it was just a formality, asked a couple of questions about it. But once the interview was over, because it involved talking about some pretty heavy personal stuff, I found I was glad that it had been done within a properly defined ethical framework. Not sure why, but there you are.
That was an interesting take on the ethics of studies, both from the cynical and from the practical point of view. I was particularly interested to read Sandrine's comments on the "view from the other side" since, as researchers, we (as I suspect) can often be embroiled in what inconvenience ethics committees and decisions cause for us, but forget about how the problem is seen from the receiving end of the research. (And I am one to always get amused at the fact that various online survey based studies about my use of technology or similar inconsequential stuff always state that the research has received the appropriate ethical approval).
In my own research, which is pure science (proteins and purified oligos), I don't go anywhere near human tissue, but know that other people who work with donated tissues (tumour samples etc.) have a lot of hoops to jump through. This is in stark contrast to the way it was done many years ago, described in the book about Henrietta Lacks' cervical cancer tissues, which were taken without her consent (legal at the time) and her poverty-stricken family did not know until 30 years later how much all this has benefitted medical research and crucially how much money it made for some institutions. Though from what I hear, it seems almost as difficult, if not more difficult to get a Home Office license to work with animals in a lab setting, but maybe that's another issue altogether...