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.
He's pretty clearly a monster or at least monster adjacent. He and his team
* Took hundreds of thousands of dollars under the table to develop the treatment
* Neglected to take steps that would determine whether the treatment was safe to use on humans
* Didn't inform the family that the treatment could possibly kill their daughter
* After the treatment did kill their daughter, he published the study anyway except stripped of any mention of the failed human trial and of any negative side effects caused by the immune system reacting to the virus
The most generous interpretation of this is that Qiu and his team were racing to be the first to cure a mental disorder using gene editing and neglected to take the necessary safety precautions, but that still makes him a horrible person because it resulted in the unnecessary death of a child just because he was hoping to be first. I'm glad the parents decided to go public about this (especially since they must feel devastated about their daughter's death) if it means he won't get to try the same risky procedure on other children.
> Didn't inform the family that the treatment could possibly kill their daughter
From the article:
> 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. Qiu said getting the dose right was critical, but infusing the viruses directly into Mei’s spinal fluid, rather than the blood, would minimize the threat of a reaction because it would bypass the kidneys and liver.
The article paints a picture of well-educated parents who were incredibly focused and dedicated to their "mission", which was basically to "cure" their daughter's condition using gene editing, something that had never been done before. They participated in groups, recorded the conversations with the doctor and ostensibly did enough research to have concerns in the first place.
The doctor violated every ethics rule in the book and should never be allowed to touch another human being, but I don't think it's fair to pretend that the parents were unwitting.
> 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
Wealth can override pretty much anything; ethics, decency, common sense. This is a lesson humans have had thousands of years and countless examples to learn from and still haven't managed.
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.
If you really want people to fall for the like you put fractional life on one side of the equation and whole numbers of life on the other "millions of people ought to toil for untold millions of man hours totaling to hundreds of lifetimes to save a few lives" and all that.
This shows how important disclosures are. A field like this cannot learn if unsuccessful human experiments disappear while the corresponding animal work is published as promising.
There are many children with life-threatening rare diseases that would be much better candidates for risky experimental treatment like this. Very sad case.
I'm honestly quite shocked that the physicians/scientists involved would choose to use an AAV for a brain-targeted gene therapy. There is just so much data demonstrating that these vectors are quite immunoreactive: most of the approved gene therapies based on AAVs carry black box labels for liver failure caused by an immune reaction to the viral capsid. Admittedly, AAVs are the most derisked vector for gene therapies, but infusing them directly into someone's brain and expecting nothing bad to happen is, in my view, crazy.
> 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.
It does not sound like the possibility of death was properly conveyed to the parents.
>But nowhere did the form explicitly indicate that any of this could end in death, nor did that come up during any conversations with Qiu or the other doctors, Jason and Linda say.
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.
You should try being the parent of a seriously autistic child. I'd put a large chunk of cash down that most parents of severely autistic children wish their child had never been born. There's no upside, it basically ruins your life. Every interaction is a reminder of what you will never have, and what you will have to suffer through for the rest of your life.
The article clearly points out that it wasn't autism for which Mei was treated, but Snijders Blok–Campeau syndrome, of which autism is just a single symptom. That goes way beyond neurodivergency.
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.
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.
- 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.
"Seven days after the girl’s medical team infused trillions of viruses carrying the recipe for the base editor into her spinal fluid, she died of a severe immune reaction linked to the therapy"
questions of a layman - couldn't they initially do a small infusion of the [may be even weakened version of that] viruses to check for the immune reaction? May be such infusion would really serve as a vaccine prepping the immune system for the main infusion later? - though immune system killing the viruses may be nullifying the treatment - then may be when doing such therapy the patient needs to be [somewhat] immunosuppressed similar to transplant situations?
Acquired immunity is complicated territory. Doing this way could make a future adverse reaction more certain.
But I don't think you're far from the correct procedure. Clinical trials are structured in phases. And AFAIK, safety is the first thing to be determined.
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.
There is a meaningful difference between knowing that gene therapy can cause serious complications in general and being told that every treated monkey developed moderate to severe liver damage, with one also showing kidney damage consistent with the mechanism that ultimately killed the child. Informed consent was pretty hard to get here
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.
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.
* Took hundreds of thousands of dollars under the table to develop the treatment
* Neglected to take steps that would determine whether the treatment was safe to use on humans
* Didn't inform the family that the treatment could possibly kill their daughter
* After the treatment did kill their daughter, he published the study anyway except stripped of any mention of the failed human trial and of any negative side effects caused by the immune system reacting to the virus
The most generous interpretation of this is that Qiu and his team were racing to be the first to cure a mental disorder using gene editing and neglected to take the necessary safety precautions, but that still makes him a horrible person because it resulted in the unnecessary death of a child just because he was hoping to be first. I'm glad the parents decided to go public about this (especially since they must feel devastated about their daughter's death) if it means he won't get to try the same risky procedure on other children.
From the article:
> 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. Qiu said getting the dose right was critical, but infusing the viruses directly into Mei’s spinal fluid, rather than the blood, would minimize the threat of a reaction because it would bypass the kidneys and liver.
The article paints a picture of well-educated parents who were incredibly focused and dedicated to their "mission", which was basically to "cure" their daughter's condition using gene editing, something that had never been done before. They participated in groups, recorded the conversations with the doctor and ostensibly did enough research to have concerns in the first place.
The doctor violated every ethics rule in the book and should never be allowed to touch another human being, but I don't think it's fair to pretend that the parents were unwitting.
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
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.
https://www.reddit.com/r/Documentaries/comments/jrraz7/when_...
> 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.
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.
Getting in your car has risk, so does riding a bike. They shouldn’t be coin flips.
I just don't think there is any reason to put that additional context into what happened here.
>But nowhere did the form explicitly indicate that any of this could end in death, nor did that come up during any conversations with Qiu or the other doctors, Jason and Linda say.
Wisdom teeth removal under general anesthesia is around 1 in 100,000.
It doesn’t sound so crazy if the risks were presented as “only 10x as risky as wisdom teeth extraction”.
That's why we need external controls, ethical commites and so on.
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.
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.
- 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.
questions of a layman - couldn't they initially do a small infusion of the [may be even weakened version of that] viruses to check for the immune reaction? May be such infusion would really serve as a vaccine prepping the immune system for the main infusion later? - though immune system killing the viruses may be nullifying the treatment - then may be when doing such therapy the patient needs to be [somewhat] immunosuppressed similar to transplant situations?
But I don't think you're far from the correct procedure. Clinical trials are structured in phases. And AFAIK, safety is the first thing to be determined.
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.
But it is generally referred to as "creative non-fiction", and I agree it can often be overdone.
Zack-D films tier writing there, disgusting.
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.
> 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 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?
> 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.
> 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.