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| ▲ | ElProlactin 2 hours ago | parent | next [-] | | > 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. | | |
| ▲ | ndiddy 2 hours ago | parent [-] | | 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 2 hours ago | parent [-] | | 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. |
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| ▲ | mft_ 2 hours ago | parent | prev | next [-] | | > * 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. | | | |
| ▲ | decimalenough 2 hours ago | parent | prev | next [-] | | 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? | | |
| ▲ | MSKJ an hour ago | parent [-] | | 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' |
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| ▲ | ButlerianJihad 2 hours ago | parent | prev [-] | | > monster > monster > monster Perhaps if his genes were properly modified, then he could become nearly human in the court of public opinion. |
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