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Couple pay >$800k for a gene-editing therapy for their daughter. She died.

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Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#11

Headline is the whole story. Sometimes a therapy doesn't work. Especially a new one

> Headline is the whole story. 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 sanctione…

Not to mention the part where it appears that the entire department decided to try and scam these parents.

> 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.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#12
post #2

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 i…

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_...

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#13
post #9

Earlier quoted context omitted.

> Headline is the whole story. 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 sanctione…

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...

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?

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#14
post #8

> The paper had an enthusiastic reception. “These promising results might pave the way for the development of an effective clinical treatment,” Kevin Bender, a neuroscientist at UC San Francisco, wrote in an accompanying commentary. At the time, Bender had no idea that a girl had received it and was already dead. Meanwhile, Chinese state media, CCTV, called the work “the first ray of hope” for “countless families suf…

"Millions of deaths don't matter if we can save just one." is an increasingly common take.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#16
post #7

Headline is the whole story. Sometimes a therapy doesn't work. Especially a new one

It's worse than that. The therapy likely killed her, and her condition wasn't fatal in the first place.

"global developmental delay" yeah this is tragic - this kid didn't need to go through this.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#17
> The young girl tugged on her mother’s hand as they pressed through the doors of the hospital in Shanghai. She was 6 years old, bouncing along in a pink jacket and blue pants decorated with cartoon bears. Behind them, her father rolled a large suitcase with everything the child needed for the weeklong stay: stuffed animals, Play-Doh, an iPad loaded with episodes of Peppa Pig.

What's this style of "journalism" (time-wasting) called and how can we exterminate it?

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#18
> When Mei was 4, one of her kindergarten teachers pulled Linda aside: Mei didn’t draw or write as well as the other kids and her language skills weren’t developing normally. Her mother might want to get her evaluated, the teacher said. In March 2023, Mei was diagnosed with global developmental delay, a broad label with many causes. Specialists explained that some of Mei’s behaviors—the funny sounds she liked to make, for instance—were associated with autism.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#19
post #17

> The young girl tugged on her mother’s hand as they pressed through the doors of the hospital in Shanghai. She was 6 years old, bouncing along in a pink jacket and blue pants decorated with cartoon bears. Behind them, her father rolled a large suitcase with everything the child needed for the weeklong stay: stuffed animals, Play-Doh, an iPad loaded with episodes of Peppa Pig. What's this style of "journalism" (time-…

All your comments boil down to: Why are people people and not machines?

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#20
post #17

> The young girl tugged on her mother’s hand as they pressed through the doors of the hospital in Shanghai. She was 6 years old, bouncing along in a pink jacket and blue pants decorated with cartoon bears. Behind them, her father rolled a large suitcase with everything the child needed for the weeklong stay: stuffed animals, Play-Doh, an iPad loaded with episodes of Peppa Pig. What's this style of "journalism" (time-…

This kind of thing is pretty standard, and you accordingly come across as rather boorish.

But it is generally referred to as "creative non-fiction", and I agree it can often be overdone.

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