That's just not true.
From the article:
> According to official documents and accounts provided by the girl’s parents, the hospital had allowed Qiu’s experimental treatment to proceed under a regulatory provision that does not require approval from national regulators. After the child’s death, the hospital paid a modest fine to a local health authority but Qiu was not publicly sanctioned.
That's not in the headline, but is an important part of the story. Also from the article:
> Seven experts in fields including genetics, virology, and bioethics who reviewed details of the Nature study and the clinical trial for Science and Retraction Watch expressed concern that Qiu and his team downplayed the trial’s risks in describing them to the parents, overlooked safety signals in animal studies, and proceeded even though success was unlikely.
Also not in the headline, but also an important part of the story. Finally:
> The girl’s parents, who requested that Science use pseudonyms for them and their daughter for privacy reasons, have decided to tell her story now because they are angry about what they feel is a lack of accountability by the researchers and the institutions. “Learning the reality of these missing safeguards has fundamentally changed how we now view the entire project,” says the father, a software engineer. He asked that he be called Jason, his wife Linda, and their daughter Mei (Chinese for “beautiful”). “We did not realize how unusual and dangerous many of the arrangements were.”
Also not in the headline, also an important part of the story.
> 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...
That's a Big Fucking Deal, and is absolutely a significant part of the story.
Was that in the headline?
Oof, there's something deeply unjust about that, a kind of "adding insult to fatality."
People celebrating that a new treatment will save children and give hope... with no acknowledgement that it was just tried and cost you both.
> Jeremy Sugarman, a medical doctor and bioethicist at Johns Hopkins University, says it’s not unusual for a family to bear the costs of developing a personalized treatment. But, according to text messages shared by Jason and Linda, Qiu also asked the couple to pay other members of the research team directly, through informal arrangements they found increasingly troubling.
Qiu kept on adding on new back channel payments and seemed to keep ballooning the costs. I have to wonder if the procedure started because it was ready or because the parents ran out of resources.
fabian2k•13m ago
cowlby•2m ago
https://www.reddit.com/r/Documentaries/comments/jrraz7/when_...