Charlie Gard- State decides or parents?

Pacifico

Well I certainly never said that!

Toko Black

So the scientists and doctors in the US researching these experimental treatments are are relying on emotion, ideology and anecdotes?

Pull the other one.

IronGiant

If you can provide some actual comments and opinions on the Charlie Gard case from scientists and doctors researching these experimental treatments, that would add some value to the debate.
However, so far, the only opinions and comments that are critical of the Great Ormand St's doctors and specialists position and decisions have come from non-experts and rely on emotions, ideology and anecdotes rather than expertise and evidence.

I also held back a comment from my reply to your earlier post because I felt it was less tasteful and unnecessary as the argument I provided should have been enough.

"I would simply point out that if everyone stopped trying experimental treatment we would still be using leeches and amputations as the normal cures for illness"- Pacifico

I would suggest that we do often try experimental treatments under strict controls, what we don't do is experiment on sick and dying babies because it may advance our knowledge - which are the horrific, appalling and dehumanising acts that have been historically carried out by sociopaths and   
war criminals.

bjd

I don't think anyone is suggesting that the doctors offering the treatment are sociopaths or war criminals, but as far as I'm aware they aren't the doctors and scientists researching nucleoside therapy for use in other mtDNA diseases.

Pacifico

Charlie Gard case: Great Ormond Street in new court bid - BBC News
I doubt if the doctor and six scientists/clinicians who signed the letter detailing the as yet unpublished research are sociopaths or war criminals - just one set of experts alerting another set of experts to new data.
As a parent, I can't imagine what this family is going through.
Experts - "We're very sorry. There is nothing more we can do. We should turn off the machines keeping your child alive"
Other experts - "There's probably nothing we can do, but there is an experimental treatment which may help your child. No promises no guarantees and there's only a very slim chance your child will even stabilise, never mind improve."
My reaction? "Where do I sign up?"
Would I consider it to be experimenting on my sick and dying child? No.
Maybe it is clutching at straws, the last throw of the dice by desperate parents.  But I find it hard to comprehend why the GOSH is allowed to decide. It's not as if they want to take him to a crystal healer or a homeopath.

Toko Black

Great Ormond Street are not the ones researching this experimental treatment and I think it is very daft of you to conclude that the scientists and doctors in the US are relying emotions, ideology and anecdotes rather than expertise and evidence.

What evidence do you have that the Doctors in the US dont do drug trials under strict controls and are just sociopaths and war criminals?

What a strange allegation to make - I would hope that you retract it.

I see now that the US Hospital is offering to send the experimental drug to London - would you still ban it use there?

bjd

of course not, it's purely a response to the rather blase argument Pacifico made regarding the fact we have made advancements in medicine through 'experimentation' without any context or relevence to the actual case we are discussing i.e that of a sick child with brain damage and a terminal illness.
What I suggest is that when it comes to using experimental treatments, if there is no real indication they will help in any significant way, cause unnecessary suffering and are without the consent and understanding of the individual who may suffer, then there is no acceptable justification for it.
For someone to actually justify doing so, they are either inept, illinformed or are so detached from empathy and standard human emotion as to be comparable* to Dr Megele

* that is if they truly and fully understand that it's not going to change the patients prognosis, they will suffer needlessly and still go ahead pure for the sake of the experiment.

in very simple and straight forwards terms, it's 'not okay' to justify the suffering of others without their permission for the sake of science.

IronGiant

From the BBC article:
"It comes after seven medical experts suggested unpublished data showed therapy could improve the 11-month-old's brain condition. "
Are these experts inept and ill informed?  Are they really comparable to Dr Megele (sic)?
And how do we decide which "experts" to believe?  Wouldn't parents naturally be more inclined to take heed of the "experts" who are offering their child a sliver of hope,  no matter how small?
Less hyperbole and a little more empathy perhaps?

Cliff

When discussing a Media news report I would be cautious using terms like hyperbole. As for deciding which experts to believe, it's a pity these experts are unnamed otherwise I might have been able to comment more scientifically.
However, if the previously unknown data is sound then the case needs looking at again, which is what is happening, instigated by the GOSH doctors if I heard that right last night.

Cliff

war criminals...
Wow, so close to calling Godwin's law...