[lconnell962]

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]

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]

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]

> 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.

[rendaw]

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.

[ndiddy]

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]

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.

[mft_]

> * 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 literally funding the creation, for the first time ever, of a highly complex treatment essentially custom-made for their daughter's condition. This required a lot of detailed and expensive science, with the generation of a mouse model of the disease, followed by development of the treatment, and then the testing of this in monkeys. In US/EU, this work would likely cost millions of dollars/euros, and it's not unreasonable that it would also cost a significant sum of money in China.

[altairprime]

Her distinctiveness has been added the collective. That's what experimental medicine is for! So if you approach this story from an amoral "ethics-free" standpoint (which is easy for me but, thankfully, difficult for most) their money has technically benefited human science, however problematic the circumstances. I have some serious glee at seeing the quantity of moral output being generated in this discussion. HN's culture is largely Bay Area tech, which has also been a key innovation driver in ethics-free amorality such as Meta and Theranos. May our own reflection in this medical science funhouse mirror encourage us to express such intense moral and ethical concern at not only our tech social media site HN, but more importantly at our often-amoral tech workplaces as well.

[mft_]

> So if you approach this story from an amoral "ethics-free" standpoint (which is easy for me but, thankfully, difficult for most) their money has technically benefited human science, however problematic the circumstances.

I'd argue it's marginal. For some sort of scientific benefit, at least, new knowledge (e.g. what to do or what not to do) is needed.

* For the experts involved, the approach, while novel in historical terms, was application of known techniques. Further, to prove the treatment, they'd have needed a positive outcome, which sadly wasn't the case. So, some technical benefit here, but hindered by the negative outcome (and the possible retraction of the paper).

* They haven't really learned much more about what not to do, as some of the major criticisms of the study were that because of the approach taken and (arguably) the corners cut, it was predictably dangerous. Again, all of this was known - it was the failure to apply established principles that was the problem.

* It appears that (apart from this article) no details of the exact case have been released. A thorough write-up of the science and the clinical study would possibly add some benefit to science, but that's not been done.

[altairprime]

Yes, it's absolutely marginal. It's 'single datapoint' at the absolute best. I'm not arguing for doing more of this. I'm just pointing out that, in the true spirit of (early) Walter Bishop, better shoddy-one than data-none if moral quandaries are of no concern.

[Departed7405]

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.

[solenoid0937]

Yeah, I was also surprised by how inexpensive this was.

[decimalenough]

If he had succeeded, though, he would have been a hero, both to the parents and the world. And the same racing that we are condemning as monstrous would have saved other children as well.

Obviously I'm not saying he is a hero or that what he did is right, just pointing out that the ethical tradeoffs in medical research like this get very complicated very fast. Ultimately it boils down to the trolley problem: is sacrificing a few worth saving many others?

[0dayz]

Not exactly, trolley problem is about a sacrifice, in this case the idea is no sacrifice, because failure is absolute, especially in that you gain nothing, Quis research is as useless to cite as Dr He, yes they both used certain scientific approaches, but clearly skipped medical and ethical concerns.

[MSKJ]

It doesn't seem like success was of particular import to the doctor, rather the goal seems to have been to get a 'test subject'

[throwway120385]

What makes someone a monster in my book is their willingness to depersonalize other people to accomplish their goals. I haven't met Qiu and this is the only article I've read about him. What I think is that he did something really horrible. But was it because he was racing to be first, damn the risks, or did he really believe that his gene therapy would work based on the evidence he had?

A lot of institutional review and peer review is in place to prevent people from making mistakes like believing that they have a powerful, low-risk gene editing technique and that they can simply apply it at will. The most generous interpretation is that Qiu really thought he could do it, and that even if the side effects happened that he would be able to control them and save the daughter.

[ButlerianJihad]

> monster

> monster

> monster

Perhaps if his genes were properly modified, then he could become nearly human in the court of public opinion.

[taurath]

> 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]

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

[streetfighter64]

> 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.

[crvdgc]

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.

[micromacrofoot]

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.

[395trek]

kinda sounds like in vivo test driven dev