alt Hacker News> * 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.
Replies
Yeah, I was also surprised by how inexpensive this was.
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.