Charlie Gard- State decides or parents?

Toko Black

100% agree with that.

Toko Black

I am not suggesting anyone involved in this case from the medical profession is comparable to Dr Mengele.
I am arguing against the idea justifying of experiments on human beings purely for knowledge's sake.
The confusion seems to be regarding my attempts to clarify and define exactly what that means and exclude for example cases where a patient is able to consent to such and willing to advance science or medicine, or cases where those people wanting to try experiments are doing so out of a misguided belief or hope that it might actually help.

I'll try and define it more precisely - a case where someone is experimenting on a human without their consent, knowing full well it won't benefit the person, causes or prolongs needless suffering and is purely for the 'data'.

That is in direct and isolated response to:

"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."

That is completely detached from this case and I was highlighting the serious implications of such an argument without the balance of ethics and scientific codes of conduct which the doctors and experts at established and recognised medical institutions take very seriously.

IronGiant

again - read my clarification:

That is not a response to the doctors or experts in this case.
It is purely with regards to the argument of advancing science through experimentation - which without any caveats of codes of ethics which would be applied to this case by the doctors and experts involved.

If I said to you that a theoretical baby:

- was dying, so let's take the opertunity to experiment to advance our knowledge of science no matter whether it may help other children down the line or not.
- that I knew it would prolong or cause unecessary suffering.
- that my justification was we would still be using leeches if we didn't experiment.

That you would most likely think I was a monster.

Blitzkrieg

This may need confirming , but I think the GOSH team have already stated that drug availability isn't an issue, they don't want it.

IronGiant

This child doesn't need to suffer. We can adequately reduce his pain and suffering to zero through drugs.

This is a golden opportunity to try something new on a really rare case. When people say experiment on or advance our knowledge, it's not as if we mean go around collecting random people off the street to lock up and do tests on. This is a chance to advance our knowledge/understanding through circumstance and that's a totally different/ok thing.

doug56hl

Except it probably isn't. (I wish it was though, as there might be some point to it).

bjd

Not quite. It is GOSH who are going back to to court to be able to use the drug.

Great Ormond Street hospital has applied to the high court for a fresh hearing in the case of critically ill baby Charlie Gard, to decide whether it is in the baby’s interests to be given an experimental drug

Great Ormond Street has to go back to the high court because it is bound by the earlier ruling, which expressly forbade staff from transferring Charlie for nucleoside therapy anywhere in the world.

“The ruling of Mr Justice Francis states: ‘It is lawful, and in Charlie’s best interests not to undergo nucleoside therapy, provided always that the measures and treatments adopted are the most compatible with maintaining Charlie’s dignity.’ Great Ormond Street hospital is therefore giving the High Court the opportunity to objectively assess the claims of fresh evidence.”
Charlie Gard hospital applies to high court for fresh hearing

IronGiant

Fo
Do you know the names of the doctors from the GOSH? I don't,  but I haven't followed the case much beyond whatever is available on the BBC.  I'm sure it wouldn't be too hard to find out,  just as anyone could make an informed guess as to the identity of these "new" experts with the details given already. As to which experts to believe,  it may be too simplistic and I may be wrong but the likelihood is that they are currently or have been engaged in research into this or very similar diseases. I wonder how many cases GOSH see per annum? Or in five years?

IronGiant

I was referring to statements made by the GOSH team before the letter.  BTW, they still don't want to use or have the drug used, but in the interests of being seen to be fair they have re-submitted it to the courts.

doug56hl

Well before the letter they didn't have any reason to believe the therapy would do any good. Now they have reassessed that position. You make it sound as if it's a media exercise by GSOH rather than them clearing the decks for them to be able to use the drug (if it gets cleared by the US FDA for use on humans which is still an unknown).