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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.

#211

Post by spwa4 »

qsera wrote: post #201
spwa4 wrote: post #199

Earlier quoted context omitted.

Also keep in mind that you get hip replacement surgery because of constant, quite intense, pain. The doctors obviously also talked to the patient and he or she obviously felt that just reducing the pain was worth the risk (because a replacement hip will still be long-term painful, so it's an improvement, not a solution. This will have been discussed extensively with the patient) ... Or the patient may even have felt…

Quite frankly, no one expects that and that is not where the disappointment comes from. The disappointment comes from the fact that doctors are mostly clueless and follow checklists, and thus prescribes measures without having a deep understanding (or interest even) of the situation. Why? Because these people (doctors) were never curious to begin with. 99% of the never cared to understand biology before they started…

There is a LOT of curiosity in the medical profession. And outside of the medical profession, even more. In fact, far too much. If you think this through I think you'll agree it has no place in the treatment of a patient, especially not where the condition is not life-threatening.

Trying medicine because "you've heard that ..." is a fancy way to commit suicide, or worse. And yes, a great deal of people want to do that, until of course, they have to face the consequences. Then they want it fixed, except there is no fix. No doctor should want to be part of that, and these Chinese "researchers" should be made to answer for manslaughter for what they did.

Surely the story we're talking about illustrates this problem? For all we know the gene-editing worked! That was NOT the problem that killed the girl. Congrats, your "curiosity-based treatment" would have made the girl 10% smarter in 10 years. Probably. Unfortunately, she's dead in less than a week. Congratulations!

Is that REALLY something you'd like to hear about anyone you know? Would that satisfy your curiosity? Big risks, even ones your not aware of, are NOT a reasonable price for trying out medical treatments.

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

#212

Post by peterfirefly »

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…

> though immune system killing the viruses may be nullifying the treatment

That's a problem for some types of RNA/DNA vaccines where they use a virus as a vector. You can usually only use a specific kind of virus once per patient.

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

#213

Post by Danox »

kazinator wrote: post #184
senderista wrote: post #76

Many years ago I was attending pre-surgery for a hip replacement surgery for my sister, who had known severe reactions to anesthesia (actually required a tracheotomy for a previous reaction). The anesthesiologist asked to speak to us privately and informed us that in their opinion, my sister had maybe a 1/3 chance of not surviving the surgery. They also mentioned that this was a breach of protocol and they could get…

Is that even legal? Can a bunch of people decide to go ahead with performing some procedure that has a 1/3 chance of killing the person, whose life is not in danger if it is not performed? If that person dies, that's seems like murder.

Nonsense easy to say if you’re not in that position, there are many procedures that are done today that we take for granted, and almost every one of us if we live long enough, will face the doctor telling us that there is nothing to do, the only chance you have is a Hail Mary and even that will only prolong your life a short while but it won’t fix the problem.

Penicillin, antibiotics, and many vaccines have only come into general use within the last 80 years which is what one or two lifetimes. Many/every medical procedure starts somewhere everyone just hopes they don’t start with them.

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

#214

Post by Departed7405 »

mft_ wrote: post #115
ndiddy wrote: post #56

Earlier quoted context omitted.

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…

> * Took hundreds of thousands of dollars under the table to develop the treatment I'm in two minds about this. On the one hand, at face value the funding and payments seem dubious - especially with the mention of one of the doctors returning his payments, suggesting they were for his personal enrichment, rather than payment for the costs of the treatment development and trial. On the other hand, the parents were lit…

But the money was given directly to the researchers. And the article clearly mentionned that a commercial trial would have been given much more scrutiny, and therefore this was a way to bypass all of that.

Also, I am pretty sure this wouldn't have been allowed in the EU and the US, at least not with that few studies on animals. And with good reasons.

Also, you forget that the company probably also payed a lot for this, so it isn't like the total costs is limited to what was illegally paid to the researchers.

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

#215

Post by Departed7405 »

1saadcodes wrote: post #103

Cases like this are heartbreaking, but they're also a reminder that failures like this ones need to be published just as prominently as success. Gene editing is still a young field, and if negative outcomes remain hidden, other researchers can't properly assess risks or make improvements

I am baffled by Nature saying would this have been communicated during peer-review this would have been taken into consideration, but because this was discovered after it doesn't count anymore.

It's like a teacher saying if you get caught cheating during the exam you will be punished, but if it's after you can get "scott-free."

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

#216

Post by crvdgc »

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…

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.

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

#217

Post by Departed7405 »

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…

Were there any actual doctors in the researchers ? They should have their license immediately revoked for omitting side-effects, thus breaching their oath.But this is China, so I am not sure there will be accountability, unless this get even more attention.

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

#218

Post by Departed7405 »

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.

Source ?

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

#219

Post by Departed7405 »

Our_Benefactors wrote: post #182
laughing_man wrote: post #131

Earlier quoted context omitted.

China officially ended its one-child policy in 2015. Barring medical reasons, there was no reason for their daughter to be their only child.

It’s been ended officially but due to social pressures to “put all your resources into one child” as the parents were accustomed to, having just one child is still a strong cultural factor. The CCP can’t just flip a switch and suddenly the whole culture aligns with having many children.

In fact, China fertility rare went down no lower than 1.5 during the one-child policy. In 2024 however, it was 1.03 child/woman, and last year it sank to less than 1 child per woman.

But of course there are huge disparities between cities and rural areas.

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

#220

Post by Departed7405 »

raincole wrote: post #28
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.

Is writing in neutral tone describing situation in cold facts without evoking situation that generate emotions in the reader ?

I looked up what neutral tone is, and it seems to be more about how you write than what you write. https://pressbooks.ccconline.org/medianewsandreporting/chapt...

This feels weird to me. It's like a newspaper describing a mass-killing without interviewing survivors because they would have emotions.

And also, neutrality is a myth, especially in news reporting. What you can do is using unloaded language and be balanced between parties.But being neutral doesn't mean you don't have values. Preferring live over death, and justice/honesty over injustice/cruelty.

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