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Trial By Error: Bristol’s Complaint to Berkeley [Short Tuller blog 23rd December 2017]

Discussion in 'General ME/CFS News' started by Esther12, Dec 24, 2017.

  1. Esther12

    Esther12 Senior Member (Voting Rights)

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  2. Alvin

    Alvin Senior Member (Voting Rights)

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    The farce continues...
    Bristol's house of cards is surprisingly resilient :emoji_face_palm:
     
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  3. Forbin

    Forbin Senior Member (Voting Rights)

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    [Warning: Nerdom ahead!]


    I have a feeling that Bristol's complaint to Berkeley went something like General Trelane's complaint to Kirk about Spock's actions in "The Squire of Gothos" episode of Star Trek.

     
    Last edited: Dec 24, 2017
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  4. Adrian

    Adrian Senior Member (Voting Rights) Staff Member

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    At the end of the article he refers to a COPE document

    https://publicationethics.org/files/u7140/COPE Forum Agenda and materials 13_11_17_FINAL_2.pdf

    which I though summarised the issue of having no ethical permission for trialling service innovations in a very poor way that is unlikely to give the committee the necessary information to understand the issue. Instead it seemed to be trying to protect the BMJ from Tuller's criticism.

    These are the questions they ask:
    It annoys me that they label something as controversial and then seem to suggest that lesser standards should apply because of that. If something is controversial they should be very careful as issues will be picked up.

    The question they should be debating is does an assessment of a new service element count as a "service evaluation" or research. How should journals treat it and where are the boundaries.
     
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  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    That's pretty annoying.

    How are they claiming that research project was a 'service evaluation'? There was no service to evaluate outside of the research project.

    "How should journals respond to blog posts that they feel portray them unfairly and are
    damaging to the publisher's reputation?"

    Engage in debate? Present evidence? Get to the truth? Realise that your feelings don't matter if you can't support your concerns with worthwhile arguments!
     
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  6. JohnTheJack

    JohnTheJack Senior Member (Voting Rights)

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    Interesting. I hadn't seen that COPE before. I was particularly struck by this line:

    In addition, the data were collected anonymously, which would further exempt the study from requiring formal ethical approval.


    Am I correct that here Crawley is claiming dispensation from gaining further ethical clearance because the data were collected anonymously?
     
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  7. Esther12

    Esther12 Senior Member (Voting Rights)

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    It's hard to say from that, but it looks like it could have implications for your request for anonymised data.

    The trouble is, it makes no sense. How can data be collected anonymously when it involved a clinical assessment? Data from this personal assessments can be anonymised, but it clearly was not collected anonymously.
     
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  8. JohnTheJack

    JohnTheJack Senior Member (Voting Rights)

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    Yes, that's what struck me. But it is strangely worded, as so much about this trial is. I think I'll still use it. I presume she is saying that data as collected are anonymous. Or something.
     
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  9. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    The data was collected by a random bloke off the street who nobody knew.

    I can haz ethiculz approvals now?
     
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  10. Kalliope

    Kalliope Senior Member (Voting Rights)

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    That made me laugh out loud! Deserved a cat added.

    21n6em.jpg
     
    Last edited: Dec 24, 2017
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  11. Barry

    Barry Senior Member (Voting Rights)

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    So why does anonymous data collection mean no ethics approval needed? Although the scope of ethics issues to be considered may have reduced, it surely cannot have dropped to zero?! Does ethics approval only consider the issues of protecting participants privacy rights, or does/should it consider the many other ethical issues?
     
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  12. large donner

    large donner Senior Member (Voting Rights)

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    Cos the LP cannot be harmful if they change your name to patient A from Fred Smith.
     
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  13. Skycloud

    Skycloud Senior Member (Voting Rights)

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    As she keeps persisting in.. well.. anything at all really, I propose EC conducts life with a bag on her head. The more anonymous she is the better :bag:

    edit changed 'her research' to 'life'. (can't remember how to cross words out)
     
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  14. Alvin

    Alvin Senior Member (Voting Rights)

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    If only all that power were used for good instead of evil...

    But then she would not be able to supercharge her reputation for good science :laugh:
     
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  15. Kalliope

    Kalliope Senior Member (Voting Rights)

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    In Norway I've seen the argumentation that IF LP has been harmful to anyone, it proves LP has side effects, thus meaning it has effect, which surely must be a good thing :confused:
     
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  16. Alvin

    Alvin Senior Member (Voting Rights)

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    My response would have been that cyanide also has side effects, which is very bad thing if your the victim :emoji_face_palm:
     
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  17. Adrian

    Adrian Senior Member (Voting Rights) Staff Member

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    I think their claim would be that the data is collected by the service and then handed over to researchers in an anonymised form. What this fails to mention is that the researchers are testing an extension to an existing service rather than evaluating a current one. They are trying to suggest that the researchers were not involved with the 'service' which is just misleading.
     
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  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    Tuller reported Crawley having some direct involvement in the assessment of participants anyway:

    http://www.virology.ws/2017/08/28/trial-by-error-no-ethical-review-of-crawley-school-absence-study/
     
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  19. Adrian

    Adrian Senior Member (Voting Rights) Staff Member

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  20. Esther12

    Esther12 Senior Member (Voting Rights)

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    LOL - that would be super tenuous! Hopefully we'll get more from them on the record. I expect that they'll just try to be utterly evasive in the expectation that no-one with power will care, and those who do pay attention couldn't think less of them anyway.
     
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