[dmix]

So it was a regulatory escape hatch for highly experimental medicine and it didn't work out?

> The girl would be the first person in the world to receive a gene-editing therapy directed at the brain.

The first person to ever try something comes with risks...

[ncallaway]

And were those risks adequately communicated to the people taking them? According to the story, they weren't.

That's a Big Fucking Deal, and is absolutely a significant part of the story.

Was that in the headline?

[dmix]

This is pretty silly. If you're paying $860k for something (note this is USD being spent within China), you can afford to do basic research on what you're getting involved with, which they apparently did:

> The parents had heard about serious side effects, including deaths, caused by other gene therapies, and knew the greatest risk would be Mei’s immune response to the massive dose of virus.

The risk was explicitly stated in the consent form:

> The platelets in her blood also dropped to dangerous levels. It was the exact sequence of symptoms that the consent form had warned the family about.

Qiu should have been more cautious in some of their communication with the obviously emotional parents, but this is pretty far from a scam and these aren't nobody doctors within China. He had a postdoc from UC San Diego, was a well known neuroscientist in China, published in Nature, etc.

[shunhe]

There is a meaningful difference between knowing that gene therapy can cause serious complications in general and being told that every treated monkey developed moderate to severe liver damage, with one also showing kidney damage consistent with the mechanism that ultimately killed the child. Informed consent was pretty hard to get here

[dmix]

The main issue is the hospital ethics committee signed off on a private clinical trial based on early positive results, but before the final toxicology report was finished... the whole program in China is about commercially funded research (meaning it didn't go under the usual Chinese FDA-type review which is more thorough). This family was privately paying for studies on mice and giving the doctor hundreds of thousands of dollars to explore this avenue. It also says he did share the toxicology report with family beforehand and they still went ahead with it anyway. This is the report showing a monkey died of liver failure, the same thing that ended up killing their daughter.

I believe it was a very dumb idea to use their kid in something very experimental, especially in China. But lets not pretend the family didn't play a huge role, with many chances to have it double checked with other scientists before putting their daughters life at risk. They 100% had the means to do so but chose to gamble.

[0dayz]

The team ignored the rests from the monkeys, and you're just shrugging it off?