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

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

#31

Post by lconnell962 » Thu, Jul 23, 2026, 9:56 PM UTC

An article about the complicated issue that is a child with a non-lethal developmental disorder getting a treatment that ends with the tragedy of the headline. The article might be sensationalizing the situation, but it makes the doctor out like a monster and as the facts read I can't say I disagree.

That the treatment was inconclusive in the animal studies isn't particularly shocking. The brain is one of the more complicated parts of a human body after all. Ethics and safty concerns seemed to get ignored all the way to the actual treatment speaks like the money and potential fame was all the medical staff involved were concerned with. The parent's aren't blameless, they wanted to fix a child who probably would have lived with a below average quality of life. The article claims they were mislead to believe this treatment was safer than it actually was.

The treatment vehicle seems like the cause of death as reported toward the end, but there are words about the animal testing that imply this could have been a known risk with the treatment as a whole. The number of things being found with hindsight remind me of "move fast and break things" development. It really sounds like cutting edge (bio)tech has ethics get ignored when money and fame are on the table.

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

#32

Post by [deleted] » Thu, Jul 23, 2026, 9:57 PM UTC

trollbridge wrote: post #24

fabian2k wrote: 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…

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).

[deleted]

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

#33

Post by garrybelka » Thu, Jul 23, 2026, 9:57 PM UTC

nubg wrote: 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-…

Velcro, I guess.

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

#34

Post by dmix » Thu, Jul 23, 2026, 9:59 PM UTC

ncallaway wrote: post #13

dmix wrote: post #9

Earlier quoted context omitted.

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?

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.

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

#35

Post by krick » Thu, Jul 23, 2026, 9:59 PM UTC

nubg wrote: 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-…

Yeah, this is insufferable. The title was interesting enough to click, but I don't know what to make of the audience that actually perceives this as a good source of information.

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

#36

Post by throwway120385 » Thu, Jul 23, 2026, 10:01 PM UTC

lconnell962 wrote: post #31

An article about the complicated issue that is a child with a non-lethal developmental disorder getting a treatment that ends with the tragedy of the headline. The article might be sensationalizing the situation, but it makes the doctor out like a monster and as the facts read I can't say I disagree. That the treatment was inconclusive in the animal studies isn't particularly shocking. The brain is one of the more co…

I didn't read it as making the doctor a monster. What I saw in the story is an example of how the road to hell is paved with good intentions.

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

#37

Post by arjie » Thu, Jul 23, 2026, 10:02 PM UTC

What? The monkeys all had problems! Why do this? Just do PGT for your other kids. Come on, dude! Non lethal condition. Deranged behaviour.

We did IVF with PGT and these days they tell you about carrier screening super early and everything here in California. I wouldn’t experiment on a real-life living human like this.

A last ditch effort to save a life perhaps but come on, dude.

If you're interested in the actual process of PGT and IVF, I wrote it down here: https://wiki.roshangeorge.dev/w/IVF

Well-trodden ground and quite safe.

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

#38

Post by orangedog » Thu, Jul 23, 2026, 10:02 PM UTC

ToucanLoucan wrote: post #23

wnevets wrote: post #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…

It says so much about how our society treats the neurodivergent that it's considered a non-extreme opinion that a dead child is preferable to an autistic one.

That's not what happened here. The team was too ambitious and not careful enough but they were not trying to kill the child.

I just don't think there is any reason to put that additional context into what happened here.

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

#39

Post by hyperpape » Thu, Jul 23, 2026, 10:03 PM UTC

raincole wrote: post #28

nubg wrote: 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-…

Treat those proses as warnings. They mean the writers have decided to guide your emotions in certain direction instead of portraying what happened in a neutral tone.

Did you describe what happened in a neutral tone?

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

#40

Post by orangedog » Thu, Jul 23, 2026, 10:04 PM UTC

raincole wrote: post #28

nubg wrote: 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-…

Treat those proses as warnings. They mean the writers have decided to guide your emotions in certain direction instead of portraying what happened in a neutral tone.

They're writing about a child that died, I don't think they hav any other motive other than the reader to feel sadness or outrage and given it is a dead child, they should not.