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Trial By Error: The School Absence Study, Revisited (Crawley/SMILE)

Discussion in 'General ME/CFS News' started by Kalliope, Jan 2, 2018.

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  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    New blog post today by David Tuller.

    - This post is about a serious issue–ethical approval for research studies involving children. It is also about how powerful institutions, like leading medical journals, respond to concerns. But the story is really too long and complicated. I recommend it only for those following things pretty closely or who for whatever reason like this kind of granular, somewhat obsessive analysis.


    The School Absence Study, Revisited
     
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  2. BurnA

    BurnA Senior Member (Voting Rights)

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    Love it.
     
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  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    Interesting stuff. I've not been able to read it all yet, but thought I'd post a link to the 2007 letter/documents referred to:
     
  4. James

    James Established Member (Voting Rights)

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    BMJ Open are learning that reputation is a two way street :( with consequential losses
     
  5. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    Another excellent piece.

    I tried to write a summary of the main points of the first part. Hopefully it might be of some use to others who cannot manage the full post. It's just over one page long.
     

    Attached Files:

  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    There's so much good stuff in this new post. It is quite long, but I also thought it was quite a simple and clear read (although I had re-read his earlier blog on this recently).

    If it really is that it is the 2007 letter that is being referred to in this COPE account, that is appalling:

    https://publicationethics.org/case/service-evaluation-research-controversial-area-medicine

    The text is the same as that used on page 5 of the document I posted above.

    To me, this really looks like a deliberate attempt to mislead. We're probably not meant to say that... but!!!

    It seems like the problems around PACE/Crawley/etc have now become a smaller part of a more important story of the corruption of the systems of oversight for medical research.

    Huge thanks to Tuller for going through all this and writing it up. Also, thanks once again to the person who first drew his attention to this problem. These sorts of things should not have to fall to sharp-eyed advocates and trouble-making journalists! Where are the people whose job it is to keep an eye on stuff like this.
     
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  7. guest001

    guest001 Guest

    Very useful add on resource. Thank you.
     
  8. guest001

    guest001 Guest

    Seconded. I think it's interesting to note that in this blog we have two non patients working incredibly hard on our behalves. The iniquities that have been brought to bear on our Community are being exposed and uncovered by people outside the Community now...and this reflects a marked sea change seen in ME advocacy /politics over the last 2 years. That's significant imo.
     
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  9. Peter Trewhitt

    Peter Trewhitt Established Member (Voting Rights)

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    I have commented on the Virology Blog directly, but as it seems to be eating up my comments again I have included them as a single quote below:

     
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  10. Valentijn

    Valentijn Not a moderator

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    It sounds an awful lot like Esther Crawley falsified ethical approval (or an exemption of it) for the school recruitment trial by reusing an exemption which was given for a completely different project. And the BMJ is now lying to avoid looking like crooked idiots for allowing the piece to be published regardless.

    It's scientific misconduct and a coverup. The University of Bristol and the BMJ are making themselves complicit by promoting unethical research based on such misconduct, and by supporting the researcher whose conduct violated very basic standards.
     
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  11. guest001

    guest001 Guest

    Absolutely. How can any rational person interpret it in any other way?
     
  12. Adrian

    Adrian Administrator

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  13. Barry

    Barry Senior Member (Voting Rights)

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    Feels like this could itself be a (much?) bigger ethical issue in its own right. Parents of high-absence children are almost always in fear of some form of official retribution. Being 'invited' to one of these meetings would have been intimidating for many parents, both in terms of feeling obligated to attend, and the notion of a very unusual school absence meeting itself. We know what a manipulative person EC is at the best of times, so I wonder what actually transpired in those meetings?

    Merging two completely separate meeting 'roles' into one is potentially highly unethical in itself: 1) A school attendance meeting (it inevitably was, in this context), and 2) A scientific trial enrolment interview. However it may have been presented, parents would have perceived these meetings so. The potential for conflicts of interests here are considerable, as is the potential for parents to feel coerced or even extorted to play along, and toe the line.

    Although this issue is now being examined retrospectively, we must be clear the ethical approval issue in question here is not about whether such things did or did not happen; it is about whether at the time the possibility could reasonably exist of such things. A 'yes' answer would have had to mean, surely, that this one issue alone necessitated ethical approval; how could anyone have sanely answered 'no'.
     
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  14. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    I'm shocked that ethical approval only become important after after the fact.

    There were no checks along the way?
    No audits?
    No informal peer interest? No curiosity?

    Do you have to start sewing animal heads onto human bodies before someone thinks to inquire?
     
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  15. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    In a similar situation, Psychologists were up in arms about Psychometric testing of people at Jobcenters. Large numbers were against any therapeutic interventions taking place at Jobcenters as consent could not be freely given.

    DWP work 'coaches' at GP surgeries are similarly controversial.



    Let's be honest. Those Parents or carers were forced into a meeting under the threat of legal action and/or fines. Any consequent decisions they made to go along with the study are null and void.
     
  16. Valentijn

    Valentijn Not a moderator

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    You'll let us know if you happen to find out, right? :D
     
  17. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    Sorry, too busy producing a rage inspired flowchart for the hard of thinking.

    Research or Service Evaluation?

    Links to the BMJ Open welcomed.

    :emoji_hatching_chick:
     
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  18. Allele

    Allele Senior Member (Voting Rights)

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    I'm also not certain it is ethical to have a medical professional not of the parents' choice at the meeting that was already likely
    high-tension for the parents; not to mention the medical professional doing this "evaluation" also happens to head up a clinic that also happens to be recruiting children for a treatment study???

    I'd like to know how many parents felt comfortable under those circumtances to have told them no thank you.

    If that's not coercion I dunno what is, and I can't believe nobody involved told the rest of them so.
     
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  19. guest001

    guest001 Guest

    I imagine that this might only be 'implicit' by virtue of the route of contact (ie we have to be careful not to make unsubstantiated statements) , but I do quite see that in the minds of any parent or guardian it would be interpreted as that, which of course raises all sorts of ethical questions.
     
  20. Barry

    Barry Senior Member (Voting Rights)

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    And of course in a face-to-face meeting it is very easy to say things ambiguously, combined with relevant intonations and body language, that can convey messages the words alone do not. Now I wonder, is there anyone we know who would have been in those meetings, who has a track record of excelling at such behaviour? Some parents could have been terrified of not doing as expected, let alone the children.
     
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