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.
> The number of things being found with hindsight remind me of "move fast and break things" development.
It is the same mentality in all of business rn, everyone is ruthless and doesn’t give a single fuck about consequences because they won’t be coming for another 2 years at least and people have a short memory
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 in the monkey experiments.
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.
> 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.
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.
> 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 suffering such diseases.”
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.
Sounds extremely similar to the first victims of Macchiarini. He and his entourage were writing and publishing success stories about his experiments when the victims had already died.
There are many children with life-threatening rare diseases that would be much better candidates for risky experimental treatment like this. Very sad case.
This is a tragic story. But it is also a story about the lengths that parents in China will go to improve the quality of life for their only child or to "save face" to their social circle about how their child is performing relative to others.
It's quite tragic that they felt the need to lean into this treatment and quite tragic that they were led on. Just a sad story all around.
- 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.
> 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.
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.
Pretty sure the parents weren’t expecting a 50-50 shot of cure vs death. The medical staff downplaying risk and ignoring issues seems like the bigger problem especially for a developmental procedure. If they represented the risk as 1 in 10000 I would probably take those odds. If the actual risk was 1 in 5 and they didn’t convey that it’s pretty messed up.
Getting in your car has risk, so does riding a bike. They shouldn’t be coin flips.
I think what OP was trying to ask was why would a parent be willing to put their child at lethal risk, using an experimental treatment, for a condition that itself is not lethal? I don't have a kid with autism or a learning disability so I don't know how I'd handle it, but if I did, I'd probably choose to live with it and help the child make the best of it. I would not be reaching for someone's research project.
Neurodivergency, or whatever you might call it, sucks, at least during childhood. Ten times so in a family-centered society. I had a mild enough case to grow up functional and independent, but if not for that… I totally see how one might chose a risky treatment even when fully informed. The problem here, it looks like the consent was nowhere informed enough, and the research team chose not to publish the case after it turned out a failure.
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.
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.
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.
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.
> 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.
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.
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.
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.
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.
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.
> The number of things being found with hindsight remind me of "move fast and break things" development.
It is the same mentality in all of business rn, everyone is ruthless and doesn’t give a single fuck about consequences because they won’t be coming for another 2 years at least and people have a short memory
> It really sounds like cutting edge biotech has ethics get ignored when money and fame are on the table.
Wouldn't be the first time. Nor the first time the actual evidence of effectiveness of the treatment (i.e. even when working as intended) was ignored.
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 in the monkey experiments.
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_...
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.
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.
> 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 suffering such diseases.”
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.
Sounds extremely similar to the first victims of Macchiarini. He and his entourage were writing and publishing success stories about his experiments when the victims had already died.
"Millions of deaths don't matter if we can save just one." is an increasingly common take.
There are many children with life-threatening rare diseases that would be much better candidates for risky experimental treatment like this. Very sad case.
This is a tragic story. But it is also a story about the lengths that parents in China will go to improve the quality of life for their only child or to "save face" to their social circle about how their child is performing relative to others.
It's quite tragic that they felt the need to lean into this treatment and quite tragic that they were led on. Just a sad story all around.
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.
I can't possibly imagine what the parents are going through
> 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.
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.
Pretty sure the parents weren’t expecting a 50-50 shot of cure vs death. The medical staff downplaying risk and ignoring issues seems like the bigger problem especially for a developmental procedure. If they represented the risk as 1 in 10000 I would probably take those odds. If the actual risk was 1 in 5 and they didn’t convey that it’s pretty messed up.
Getting in your car has risk, so does riding a bike. They shouldn’t be coin flips.
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.
I think what OP was trying to ask was why would a parent be willing to put their child at lethal risk, using an experimental treatment, for a condition that itself is not lethal? I don't have a kid with autism or a learning disability so I don't know how I'd handle it, but if I did, I'd probably choose to live with it and help the child make the best of it. I would not be reaching for someone's research project.
This seems to be a rather extreme takeaway..?
Neurodivergency, or whatever you might call it, sucks, at least during childhood. Ten times so in a family-centered society. I had a mild enough case to grow up functional and independent, but if not for that… I totally see how one might chose a risky treatment even when fully informed. The problem here, it looks like the consent was nowhere informed enough, and the research team chose not to publish the case after it turned out a failure.
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.
[flagged]
[flagged]
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.
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.
Did you describe what happened in a neutral tone?
All your comments boil down to: Why are people people and not machines?
This is good quality journalism; human-interest details like this are important.
Velcro, I guess.
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.
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.
"The young girl tugged on her mother’s hand as they pressed through the doors ..."
Zack-D films tier writing there, disgusting.
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 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.
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.
The part about gifts he received from the father in person is particularly vile.
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.
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.
"global developmental delay" yeah this is tragic - this kid didn't need to go through this.