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Ethics review and self-censorship (Lisa Wynn)

 


When it comes to human research and ethics review, self-censorship comes in two forms.

The first kind comes after ethics review. The ethics committee gives the applicant feedback phrased as questions, requests for further information, and suggestions. But the suggestions are often taken as having the weight of law by inexperienced researchers, especially students. They don’t realise that they can argue with their ethics committee and show why its suggestions won’t produce the most ethical outcomes.

I once had a student who got a letter from our ethics committee and thought it was a complete rejection of her project. Much like a revise-and-resubmit letter from a journal, letters from ethics committees often start with wording along the lines of, “We cannot approve your project in its current form.” My student ignored the last four words in that phrase, panicked, and thought she was going to have to abandon her project altogether — when in fact all we needed to do was change a couple things on the information and consent form.

‘Talking back’ to an ethics committee can be very effective. Arguing with them (politely, of course) shows you’ve considered the ethical issues in depth — maybe more depth than they have. In my five-plus years of serving on an ethics committee, I’ve found it exceptionally rare for a research project to not get approved after one or two rounds of back-and-forth between the researcher and the committee, even when the researcher doesn’t take on any of the committee’s suggestions.

The second kind of self-censorship, however, it much more troubling and hard to document. This is when researchers decide to change their research — or to give up on research altogether — because they think they won’t get through ethics review, or because they consider it too much bureaucracy to cope with.

Here’s an example. I recently travelled across Australia asking teachers how they were dealing with the requirement of ethics review for student research. Many of the people I talked to said that they just didn’t. One anthropology honours coordinator at a G-8 institution explained www.teaching-research-ethics.com/#!case-study-1/cluk

“It was decided that it was just too hard.  So at that point the research project as part of honours was dropped and they were told that they must not do anything in their honours year including for their dissertation that would attract the need for an ethics approval.  Students are pointed away from doing anything that may attract the need for ethics approval.  We just say don’t do it.”

This kind of self-censorship is far more difficult to counteract. We have no measurements of how many people decided to not do a research project, or to modify their research project, because they didn’t want to have a battle with an ethics committee.

How many research projects have been watered down, made less risky but also less innovative, because researchers felt like they couldn’t stand up to their ethics committees? How many have been abandoned altogether?

L.L. Wynn,
Department of Anthropology,
Macquarie University
Lisa’s Macquarie staff profile
Teaching Research Ethics Network

This blog may be cited as:
Wynn, L (2015, 27 June) Ethics review and self-censorship. AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/ethics-review-and-self-censorship-lisa-wynn

Fran Thorp says:

What Lisa says is so true- a great, thought-provoking post. As an ethics administrator I always tell applicants that they can argue with the HREC and that everything is negotiable, as long as it meets the National Statement. It is a shame that innovative and adventurous projects are shelved because of concerns that a HREC will not approve them. It’s also a good reminder for administrators on how to communicate HREC outcomes so that researchers, especially students, are not discouraged from engaging with the ethcs process.

Sean says:

Great post and I agree with many of the comments made.

I’m involved in health ethics review in WA and while there are a number of impediments in the way of the application process being collaborative it is absolutely something we should be striving for. There’s a lot that both those of us within the ethics review structure, and researchers, can do.

One of the foremost problems is education both by institutions and individuals. Many applicants simply see the process as a hurdle to be overcome, boxes to be ticked or sections to completed without giving due thought to the reason they are being asked to provide this information. I sympathise with that, the ethics process can be arduous and has a steep learning curve and we all have limited time. But there’s a lot that can be done by supervisors to prepare the students under them for the application process. There’s also a lot the ethics staff can do to make conducting research more accessible.

Finishing on a positive note, I have to say that engaging with researchers who truly understand and appreciate the need for an ethical review is a true delight and it’s what makes me love my job. It may not always seem that way, but i like to think that we’re all simply trying to conduct good research together.

Michael Wise says:

The expectation that ethics committees/officers recommendation are to be treated as holy writ and cannot be argued with stems, I believe, from a research funding culture where the word of ARC/NHMRC are law. No such thing as collegiality; “this is the way things are” attitude. I gather things are very different in US and UK, for example. The second self censoring is harder, as approvals need to be in place before students arrive as there is insufficient time to get the permissions in place once term has begun. The only way forward that I see is for Research Ethics units to be proactive at the end of the previous year and call for projects for which approvals will be required so they can pre-approve them. A bit like housing loans.

Bento S says:

Regrettably, the world of research ethics is chock-full of cultural assumptions about what is and what is not ‘required.’ Many things that are presented as guidance are interpreted as ‘rules’ or ‘regulations’ or, as Mr Wise puts it “the word (taken as) law.” What Lisa is saying is correct: the relationship between researchers and HRECs (and sometimes, other authoritative bodies) is a dynamic: researchers can help form and re-form that dynamic, but they have to be proactive, polite and persistent. Of course, some HRECs either misunderstand their role or over-reach based either on abuse of power or a misplaced sense of paternalism. But many others are more open to dialogue than many researchers might expect. And, if persuaded, they might then be better educated for the next project.

Brothers without Banners says:

A very interesting post by Lisa and thoughtful comments by Michael and Bento S. Of course Michael’s idea of pre-approval won’t address the very serious problem of HREC’s (or delegated review bodies) issuing edicts rather than constructive/collegiate feedback. What is required is a shift in how we approach the role of ethical review. The other practical problem for pre-approval is that many applications arrive at the 11th hour just before when the project ‘has’ to commence.



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