[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.