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I can second what Chris has said - although it is not without problems, the
University of Birmingham ethical review process was generally reasonable
for individuals with ID.  For example, although they initially expressed
concerns about testing of nonverbal children in EEG studies, they gave me a
proper opportunity to explain the risk/benefit ratio and successfully make
the case.  They also expressed concerns about physical prompting strategies
(for teaching, not aversives) in an intervention study.  But, again, they
listened to a risk/benefit rationale and considered the larger context of
both the previous literature and the aims of the research.

Joe










On Fri, Aug 1, 2014 at 9:32 AM, Chris Oliver <[log in to unmask]> wrote:

> All
>
> Just to share a different experience. We have submitted three or more
> applications in the last few years with varying levels of ethical concern.
> In each case only minor mods were required and the process was surprisingly
> straightforward once the endless forms were completed. In fact for one
> project (self-injury) I would have preferred greater scrutiny to reassure
> us that we had thought through all the ethical issues. If I remember
> correctly there was an ID psychiatrist on the panel for some of these and
> this helped and the discussions were an important opportunity to iron out
> any misunderstandings.
>
> Best wishes
>
> Chris
>
> *"The NHS will last as long as there are folk left with the faith to fight
> for it"  Aneurin Bevan*
>
> Chris Oliver
> Professor of Neurodevelopmental Disorders
> Cerebra Centre for Neurodevelopmental Disorders
> School of Psychology
> University of Birmingham
> Birmingham
> B15 2TT
> UK
>
> 0121 414 4909
>
> https://www.youtube.com/watch?v=cK16tSB113E#t=24
> www.birmingham.ac.uk/cndd
>
> https://www.facebook.com/pages/The-Cerebra-Centre-for-Neurodevelopmental-Disorders/230197213724784?sk=wall
>
>
>
> On Fri, Aug 1, 2014 at 2:17 PM, Dr Neil Sinclair <
> [log in to unmask]> wrote:
>
>>  Hi All
>>
>>
>>
>> Agree with all of Glyn’s comments as I was the other researcher on the
>> project she refers to- there was a previous application I put in as lead
>> researcher which also was rejected, and the delays added years to the
>> project.
>>
>>
>>
>> Kind regards
>>
>>
>>
>> Neil
>>
>>
>>
>>
>>
>> Neil Sinclair PhD
>>
>> Consultant Clinical Psychologist
>>
>> Sinclair-Strong Consultants Ltd.
>>
>>
>>
>> [image: psychechartercol-webuse]    [image: HPC_reg-logo_very smallCMYK]
>>
>>
>>
>> ( 01732 871018
>>
>>  *0*7753985675
>>
>> 7 08000488718
>>
>> : www.sinclairstrong.co.uk
>> 8 [log in to unmask]
>> * *Building 70 Churchill Square Kings Hill West Malling Kent ME19 4YU*
>>
>>  *P* *Think about the environment - do you really need to print this
>> email?*
>>
>>
>>
>>
>>
>> *From:* Intellectual Disability Research UK mailing list [mailto:
>> [log in to unmask]] *On Behalf Of *Glynis Murphy
>> *Sent:* 29 July 2014 14:36
>> *To:* [log in to unmask]
>> *Subject:* Re: Ethics again
>>
>>
>>
>> One of my projects was the reason the Appeals procedure was set up – we
>> got turned down by two different ethics committees and at the time Dept of
>> Health said that since we hadn't got thru ethics they would remove funding.
>> I said no you jolly well won't! Where is the Appeals procedure? So we were
>> allowed to go to a third for SOTSEC-ID – and we got thru the third.
>>
>>
>>
>> Meanwhile they set up an Appeals procedure.
>>
>>
>>
>> I also had experience in Lancaster of an ethics com turning down a
>> student's project for stupid reasons, so I complained and we were allowed
>> to go to a second where we got thru no problem.
>>
>>
>>
>> My view is that they are often very blooody ignorant about ID, rarely
>> have a cline psych on them, and make very arbitrary and  inconsistent
>> decisions.
>>
>>
>>
>> Im not saying we shouldn't go thru ethics procedures but I do think they
>> ought to work properly!
>>
>>
>>
>> glyn
>>
>>
>>
>> *From: *"[log in to unmask]" <[log in to unmask]>
>> *Reply-To: *"[log in to unmask]" <[log in to unmask]>
>> *Date: *Mon, 28 Jul 2014 15:44:45 +0000
>> *To: *"[log in to unmask]" <[log in to unmask]>
>> *Subject: *Ethics again
>>
>>
>>
>> Have just had an unfavourable response to student NHS ethics application,
>> there were some valid issues that might have been amendments but the core
>> concerns showed significant misunderstanding of the ID population. Will
>> resubmit but was wondering if anyone has any experience of using the REC
>> appeals process?
>>
>>
>>
>> Dave
>>
>>
>>
>> Professor Dave Dagnan
>>
>> Consultant Clinical Psychologist
>>
>> Cumbria Partnership NHS Foundation Trust
>>
>>
>>
>> Tel: 01900 705825
>>
>> Fax: 01900 608127
>>
>> Mobile 07789 868259
>>
>>
>>
>> We now publish the Cumbria Partnership Journal of Research, Practice and
>> Learning
>>
>> http://www.cumbriapartnership.nhs.uk/volume-1-issue-2-autumn-2011.htm
>>
>>
>>
>>
>>
>>
>