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

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

#61

Post by cindyllm »

micromacrofoot wrote: post #53
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…

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.

[dead]

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

#62

Post by mparkms »

ryandrake wrote: post #43
orangedog wrote: post #38

Earlier quoted context omitted.

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.

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.

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

#63

Post by elzbardico »

ryandrake wrote: post #43
orangedog wrote: post #38

Earlier quoted context omitted.

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.

People without extensive scientific training can be easily convinced by an un-ethical expert that the risks are negligible.

That's why we need external controls, ethical commites and so on.

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

#64

Post by cucumber3732842 »

drekipus wrote: post #14
Terr_ wrote: post #8

> 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 suf…

"Millions of deaths don't matter if we can save just one." is an increasingly common take.

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.

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

#65

Post by rainprincess »

neonstatic wrote: post #25
cogman10 wrote: post #11

Earlier quoted context omitted.

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.

I think it's a part of the culture of guanxi (relations) in China.

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

#66

Post by elzbardico »

trhway wrote: post #57

"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 immu…

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.

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

#67

Post by ElProlactin »

ndiddy wrote: post #56
throwway120385 wrote: post #36

Earlier quoted context omitted.

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.

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 str…

> 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.

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

#69

Post by shunhe »

dmix wrote: post #34
ncallaway wrote: post #13

Earlier quoted context omitted.

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 s…

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

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

#70

Post by fwip »

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.

I hear this meme sometimes, that anti-vaxxers and others "prefer a dead child to an autistic one," and I think it fundamentally doesn't represent their thought process at all.

The far-more common sentiment that I see among anti-vaxxers is that the risk of death from childhood diseases like chicken pox are either zero or close-to-it, and that the risk of receiving autism from the vaccine is at least one-in-ten. These numbers aren't true, of course, but in their minds, they're weighing a negligible-chance of terrible outcome against a moderate chance of bad outcome.

I'm sure there's a few extremists of course, who would say they prefer a dead child to an autistic one (same as how some parents feel about gay kids), but it does not represent most of the people in these movements.

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