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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.

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.

throwway120385 2mo ago
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.
- ndiddy 2mo ago
  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.
  - ElProlactin 2mo ago
    > 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.
    - ndiddy 2mo ago
      Right, part of his whole pitch was that he had a new cutting edge gene therapy that was more precise than CRISPR. I think the parents were definitely obsessed with "fixing their daughter", but it seems like Qiu didn't try at all to "snap them out of it" by mentioning how the treatment he was attempting could also kill her.
      - ElProlactin 2mo ago
        Of course he didn't try to discourage them. He wanted to do this type of research/experimentation, which is almost certainly why he was known to the communities the parents were a part of (the article says the parents learned of him in a "WeChat group in which parents of children with autism and similar disorders trade advice"). This is a form of doctor shopping. If you really want something, you can find someone who is willing to provide it, even in fields like medicine where practitioners are expected to adhere to rigorous ethical standards.
    - rendaw 2mo ago
      The second part of the quote yes, but > serious side effects, including deaths, caused by other gene therapies That sounds like they were informed of risks for other therapies, not this one. And TBH that framing is still suspect: if someone told me that the greatest risk was immune response and we have a way to minimize it, I'd take that to mean it's safe. That's not the right conclusion, but that's what most people would get from the phrasing. This is "how to lie with statistics". Maybe they were told something else though.
streetfighter64 2mo ago
> 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.
taurath 2mo ago
> 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
- PearlRiver 2mo ago
  Also if you have a few hundred million bucks you will still have your mansion if you get it wrong.
micromacrofoot 2mo ago
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.
- cindyllm 2mo ago
  [dead]
deleted 2mo ago
[deleted]
395trek 2mo ago
kinda sounds like in vivo test driven dev
crvdgc 2mo ago
Even if that's the case, the tragedy should have been disclosed reponsibily. The fact that the parents had to make further efforts to go through their daughters death to warn others just feels wrong.

throwway120385 2mo ago

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.

ndiddy 2mo ago
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.
- ElProlactin 2mo ago
  > 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.
  - ndiddy 2mo ago
    Right, part of his whole pitch was that he had a new cutting edge gene therapy that was more precise than CRISPR. I think the parents were definitely obsessed with "fixing their daughter", but it seems like Qiu didn't try at all to "snap them out of it" by mentioning how the treatment he was attempting could also kill her.
    - ElProlactin 2mo ago
      Of course he didn't try to discourage them. He wanted to do this type of research/experimentation, which is almost certainly why he was known to the communities the parents were a part of (the article says the parents learned of him in a "WeChat group in which parents of children with autism and similar disorders trade advice"). This is a form of doctor shopping. If you really want something, you can find someone who is willing to provide it, even in fields like medicine where practitioners are expected to adhere to rigorous ethical standards.
  - rendaw 2mo ago
    The second part of the quote yes, but > serious side effects, including deaths, caused by other gene therapies That sounds like they were informed of risks for other therapies, not this one. And TBH that framing is still suspect: if someone told me that the greatest risk was immune response and we have a way to minimize it, I'd take that to mean it's safe. That's not the right conclusion, but that's what most people would get from the phrasing. This is "how to lie with statistics". Maybe they were told something else though.

streetfighter64 2mo ago

> 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.

taurath 2mo ago

> 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

PearlRiver 2mo ago
Also if you have a few hundred million bucks you will still have your mansion if you get it wrong.

micromacrofoot 2mo ago

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.

cindyllm 2mo ago
[dead]

deleted 2mo ago

[deleted]

395trek 2mo ago

kinda sounds like in vivo test driven dev

crvdgc 2mo ago

Even if that's the case, the tragedy should have been disclosed reponsibily. The fact that the parents had to make further efforts to go through their daughters death to warn others just feels wrong.