[fabian2k]

There's so many ethical problems with the events as described in the article. The worst to me seems to be that the researchers/doctors seem to have downplayed the risks here. Which for a never before tried gene therapy that is meant to work inside the brain are absolutely enormous. The ethical issues around the money seem minor in comparison with that and the fact that they seem to have ignored similar side effects in the monkey experiments.

[cowlby]

Reminds me of the TGN1412 drug trial where patients had severe immune reaction and almost died. Sad that the story suggests they ignored all the signs that would suggest humans would have a bad immune reaction to it and proceeded anyway.

https://www.reddit.com/r/Documentaries/comments/jrraz7/when_...

[mft_]

With TGN1412, it wasn't that the right work wasn't done, or that results ignored, but rather that the regulations in place at the time weren't right to deal with that sort of drug. Following what happened, the regulations were changed around the world to be more cautious and suitable.

[Departed7405]

Were there any actual doctors in the researchers ? They should have their license immediately revoked for omitting side-effects, thus breaching their oath.But this is China, so I am not sure there will be accountability, unless this get even more attention.

[trollbridge]

I’m very puzzled why this wasn’t replicated in eg a study in rats first (where you duplicate the mutation, and then attempt to cure it).

[austin-schick]

The article says that they did do this:

> Qiu’s team had engineered mice to have a human version of the CHD3 gene with their daughter’s mutation, R1025W, which results in a protein with the amino acid tryptophan where there should be an arginine. The mutant pups developed autismlike traits and didn’t squeak as much as normal mice when separated from their mothers. When the researchers repaired that mutation, the pups developed normally.

[fabian2k]

They did animal experiments first. But according to the article they didn't really look at the serious side effects observed in monkeys, or ignored them. But animal experiments can only provide warning signs here, they can't tell you what will really happen in a human.

[superxpro12]

This is the EXACT reason why the FDA exists.... this.... shit.... tricking desperate parents into paying millions of desperate dollars when anyone who knows anything about it knows the "experiments" just cause death. Yet another grift.

[ares623]

In Silicon Valley this is considered a successful learning experience.