Hi Genee,
First please forgive slightly truncated version, am mobile and not great with diddy keyboards!
Really interesting article, was wondering if I might cite it during a presentation? As being in-press of course. I think it is the only example I've seen of the difficulties and problems of co-researchers and ethics committee in the lit that explicitly talks about this issue.
My experience at the OU ethics was much less demanding and they were very sympathetic to my aims (there have been a number of such PhD projects here, so I'm not doing anything that radical). But I found it frustrating (as did the co-researchers) that the mental capacity act was being used as a rationale for needing consent even tho the MCA makes a presumption of capacity unless proved otherwise.
From emails received and lit read so far it seems that if the research is PhD or institutionally funded then co-researchers need to give consent even if it isn't self or autobiographical research. One exception so far seems to be some research done within the NHS.
Liz
Sent using BlackBerry® from Orange
-----Original Message-----
From: "Genee Marks" <[log in to unmask]>
Date: Tue, 12 Jun 2012 08:52:52
To: <[log in to unmask]>; <[log in to unmask]>
Subject: Re: Co-researchers consenting to become researchers?
Hi Liz
As an ethics officer for my university in AUstralia, and as a researcher who works with co-researchers with intellectual disability, I have tackled this from several angles. Later today when I am at the right computer, I will email you the draft of a paper that is currently with a journal on this very issue, and was delivered at a recent Australian conference on co-research. I think it might be helpful and interesting. It actually discusses the issue directly, and relates it to national ethics standards, which are based on international models.
Just realised I might be able to access it from this computer, so will try that in a moment. If there is no attachment ont his email, then it will come a little later.
I'd love to chat with you more directly on this if you are interested
Best wishes
Genée Marks
University of Ballarat
>>> Liz Ellis <[log in to unmask]> 06/11/12 11:26 PM >>>
Hello all,
I was wondering if anyone who has been involved in co-research, especially with people labelled as having learning difficulties or other 'vulnerable' groups, have experienced the need (from funding bodies or institutions) to gain informed consent from the potential co-researchers?
People participating in research clearly need to give consent and as researchers we are morally obliged to ensure that consent is informed in all cases, but does this in anyone else's experience apply to any co-researchers working in participatory or inclusive research where the co-researchers are not respondents but going to be interviewing disabled and non-disabled respondents from whom informed consent would be sought?
I've not come across any discussion of this issue in the literature, but obviously I might have missed it.
Kind regards,
Liz Ellis
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