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

Exploring more ways to take advantage of children.

Open access at http://bmjopen.bmj.com/content/8/6/e022894

 

https://twitter.com/user/status/1006821361292075008

 

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.

 

An obvious badge of honour @Joh , have pride in achieving that accolade!

 

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.

 

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

 

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!

 

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...

 

11 to 17, http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/fitnet-nhs/

 

"Children trusted ... doctors ..."

 

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?

 

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.

 

Oh, that's really strange! Oh well, it will remain a mystery...

 

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.

 

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

 

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.