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

Andy

Andy

Retired committee member
Exploring more ways to take advantage of children.
Abstract
Objectives We explored children’s views on research without prior consent (RWPC) and sought to identify ways of involving children in research discussions.

Design Qualitative interview study.

Setting Participants were recruited through a UK children’s hospital and online advertising.

Participants 16 children aged 7–15 years with a diagnosis of asthma (n=14) or anaphylaxis (n=2) with recent (<12 months) experience of emergency care.

Results Children were keen to be included in medical research and viewed RWPC as acceptable in emergency situations if trial interventions were judged safe. Children trusted that doctors would know about their trial participation and act in their best interests. All felt that children should be informed about the research following their recovery and involved in discussions with a clinician or their parent(s) about the use of data already collected as well as continued participation in the trial (if applicable). Participants suggested methods to inform children about their trial participation including an animation.

Conclusions Children supported, and were keen to be involved in, clinical trials in emergency situations. We present guidance and an animation that practitioners and parents might use to involve children in trial discussions following their recovery.
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Open access at http://bmjopen.bmj.com/content/8/6/e022894
 
Andy said:
Exploring more ways to take advantage of children.
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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.
 
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.
 
Joh said:
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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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!
 
Jonathan Edwards said:
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.
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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...
 
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.
 
Jonathan Edwards said:
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.
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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.
 
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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