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.

#21

Post by trollbridge » Thu, Jul 23, 2026, 9:51 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-…

This is good quality journalism; human-interest details like this are important.

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

#22

Post by asqueella » Thu, Jul 23, 2026, 9:52 PM UTC

fabian2k wrote: post #7

singpolyma3 wrote: post #4

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.

I was curious what non-fatal condition would make the parents so desperate (to participate in a first-in-human trial):

> Mei was diagnosed with global developmental delay .. some of Mei’s behaviors .. were associated with autism.

> CHD3 mutations produce a condition called Snijders Blok-Campeau syndrome

> people with the mutation often have a normal life expectancy, but their symptoms vary widely. Most have slightly larger than normal heads, and about two-thirds have intellectual deficits. Moderate to severe cases may be nonverbal, suffer from seizures and heart problems, and have fluid-filled voids in their heads.

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

#23

Post by ToucanLoucan » Thu, Jul 23, 2026, 9:52 PM UTC

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.

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

#24

Post by trollbridge » Thu, Jul 23, 2026, 9:52 PM UTC

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).

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

#25

Post by neonstatic » Thu, Jul 23, 2026, 9:54 PM UTC

cogman10 wrote: post #11

ncallaway wrote: post #6

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…

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, th…

The part about gifts he received from the father in person is particularly vile.

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

#26

Post by austin-schick » Thu, Jul 23, 2026, 9:55 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).

The article says that they did do this:

> Qiu’s team had engineered mice to have a human version of the CHD3 gene with their daughter’s mutation, R1025W, which results in a protein with the amino acid tryptophan where there should be an arginine. The mutant pups developed autismlike traits and didn’t squeak as much as normal mice when separated from their mothers. When the researchers repaired that mutation, the pups developed normally.

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

#27

Post by fabian2k » Thu, Jul 23, 2026, 9:56 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).

They did animal experiments first. But according to the article they didn't really look at the serious side effects observed in monkeys, or ignored them. But animal experiments can only provide warning signs here, they can't tell you what will really happen in a human.

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

#28

Post by raincole » Thu, Jul 23, 2026, 9:56 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-…

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.

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

#29

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

TL;DR:

- The girl had a really rare genetic disorder, traceable to a single-base mutation, that result in intellectual disability. Her case was quite mild, she was verbal and only had a learning disability, other cases are often far more severe.

- They went for using adeno-associated virus as vector to deliver a CRISPR payload. It caused kidney and liver damage (AFAIUK due to immune response, not the virus itself? So hard to predict from an animal model.) which turned out fatal.

- The family paid a significant share of the research funding and some off-record financial favors to the research team.

- The research team's recent publication in Nature didn't mention the case at all (they basically chose keep silent about failures).

The whole story has quite some Flowers for Algernon vibes except real life is way more cynical and sad. And I disliked the book back when I read it because it felt like a weepie just for the sake of weeping.

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

#30

Post by dghlsakjg » Thu, Jul 23, 2026, 9:56 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-…

It’s called long form feature writing. Many, many people enjoy it and do not want it exterminated. It’s a way to humanize and add emotion to complex topics. If you want, many outlets have bland straightforward bullet point articles. Try Axios.

Reading articles posted on HN is optional as are most things on the internet. If you don’t like the style in the first paragraph, stop reading. Getting fewer eyeballs on an article is typically a way to “exterminate” a style. Be aware, the articles that make the biggest waves tend to be long form feature writing. Given their influence and popularity you might find your extermination efforts to be quixotic.