The tragedy involved two parents paying $860,000 to partially fund an unapproved clinical trial of 1 to save their daughter from a rare neurodevelopmental disease, the work being done by a superstar researcher in China working at a highly prestigious research hospital, the girl subsequently dying because the research behind the trial was shoddy, and the death of the girl being buried. The research behind this was subsequently published in Nature, but the human trial component was completely erased.

This might shape up to be one of the largest gene editing scandals for a while

Try this Wayback Machine link if you are paywalled

There's also a brief follow-up article by Science News

you are viewing a single comment's thread
view the rest of the comments

[–] zlatiah@lemmy.world 4 points 1 day ago* (last edited 1 day ago)

Yupppp, which is what IMO made this whole thing extra tragic. The disease wasn't even that bad to begin with... definitely didn't necessitate literally doing the very first in-brain gene editing (which is why they needed much higher viral dose... which caused the death)

I have no clue where the family coughed up the $800K though. They don't seem to be the particularly rich type based on what the news report was saying, but maybe the parents did hide some information...?