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Children’s views on research without prior consent in emergency situations: a UK qualitative study, 2018, Woolfall et al (including Crawley)

Discussion in 'Health News and Research unrelated to ME/CFS' started by Andy, Jun 15, 2018.

  1. Andy

    Andy Committee Member & Outreach

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    Exploring more ways to take advantage of children.
    Open access at http://bmjopen.bmj.com/content/8/6/e022894
     
  2. Andy

    Andy Committee Member & Outreach

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  3. Joh

    Joh Senior Member (Voting Rights)

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    Just found out that I'm blocked by CCAH Bristol! The first time ever someone blocked me. Can't even remember having commented on their site, apparently it's enough to be critical of Crawley's science.
     
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  4. Andy

    Andy Committee Member & Outreach

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    An obvious badge of honour @Joh , have pride in achieving that accolade! :) :emoji_medal:
     
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  5. Trish

    Trish Moderator Staff Member

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    Not sure that's fair. It seems to me to be important to study whether emergency treatments are effective, and this inevitably means informed consent can't be explained fully to a child in the midst of the emergency.

    My problem from glancing through this study, is that none of the children answering the questions had actually been involved in a trial when they were in emergency care, so their comments were based on a hypothetical scenario. Though they all had conditions (asthma and anaphylaxis) which led to emergencies and were likely to lead to further emergency admissions.

    I can imagine explaining to a child as young as 7 that sometimes doctors want to try out new treatments on children to see whether they work could be quite frightening. An imaginative child who has bad asthma and will be likely to need emergency care in the future may become frightened next time that the doctor is experimenting on them. It could take away their confidence in their doctors. I'm not sure I'd want to add that burden to a young child already suffering a frightening condition.

    So I guess what I'm saying is, was it ethical to raise the possibility of being 'experimented on' with young children who are likely to need emergency care in future.
     
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I see a logical error here.

    The issue of informed consent is only different for children because it is assumed that they may not be old enough to come to an opinion that is adequately informed.

    That being the case, asking them if they are keen to be involved makes no sense because we have to presume they are not old enough to be adequately informed about what they are being asked.

    Children will be completely unaware of the unethical way in which some children's trials have been conducted in the past. They will know nothing about the motivations involved. So they are not in a position to give an informed opinion.
     
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Plus some kids will do anything for a sticker.........I'm sure that EC has a load.
     
  8. EzzieD

    EzzieD Senior Member (Voting Rights)

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    Twitter is a weird place. I only joined recently just to follow the latest news in science developments re ME, have only made about 6 or 7 tweets, mostly just supportive comments or to thank a few journalists or researchers for their work. I mainly just Like or Re-Tweet. Yet I found myself blocked by Ellen Goudsmit who as far as I know is a psychologist who has ME and has done some advocating and advising on it? I've never had any contact with her, I don't know her, she doesn't know me, so I'm completely baffled. I wonder if some blockings are accidental - maybe that's what happened to you? (And me.) It's a mystery!
     
  9. Amw66

    Amw66 Senior Member (Voting Rights)

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    What is the age range for FITNET?
    Usually a parent is consulted to enable consent to be given - however as we move to a more " online" treatment scenario, in particular for psychological input, a parent may have no input.
    Seems to me that a way is being prepared...
     
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  10. Trish

    Trish Moderator Staff Member

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    Don't worry. She's blocked me too. No idea why.
     
  11. Andy

    Andy Committee Member & Outreach

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    alktipping and Joh like this.
  12. inox

    inox Senior Member (Voting Rights)

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    "Children trusted ... doctors ..."
     
  13. chrisb

    chrisb Senior Member (Voting Rights)

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    We know how trustworthy some doctors are. They would of course never knowingly make untrue statements in public, recorded, talks. And then, before the furore quite died down, repeat them. Would they?
     
  14. Joel

    Joel Senior Member (Voting Rights)

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    What a load of crap.

    A child is not in a position to effectively judge safety, trust, risk, data etc. so whatever answer they give has no meaning.

    Children are susceptible so if asked by an adult of course they are going to give the "right" answer.

    An animation is also likely to lead children to a certain conclusion by the very fact children have a positive perception of animations/cartoons.
     
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  15. EzzieD

    EzzieD Senior Member (Voting Rights)

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    Oh, that's really strange! o_O Oh well, it will remain a mystery...
     
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  16. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    That is true, but it doesn't mean these sorts of studies are worthless. But I agree it would be dangerous to justify experimentation based on studies like this.
     
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  17. Allele

    Allele Senior Member (Voting Rights)

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    I'm confused. Isn't the child's parent or legal guardian the one(s) to make medical decisions on their behalf? Why is this even a question then? Or is medical "research" in a legal grey area.
     
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  18. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    I don't agree with the idea that because someone is under 18 that their views are somehow worthless. Just saying.
     
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  19. Esther12

    Esther12 Senior Member (Voting Rights)

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    Also sometimes there will be good reason why research on children in emergency situations is needed. I'm just doubtful work from Crawley should be used to guide the ethics of this.
     
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