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ElProlactinyesterday at 10:34 PM1 replyview on HN

> 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.


Replies

ndiddyyesterday at 11:08 PM

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.

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