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by jcranmer 1969 days ago
Against He specifically, the biggest factor that causes consternation is that He seems to have been more motivated by winning the accolades of being first than by actually doing good work. The work came out of nowhere, wasn't exactly successful (in that neither of resulting gene edits actually reflected the intended result), and it's unclear if the parents actually understood what they were consenting to.

To the broader topic, one of the major issues is that genes are nowhere near so cut-and-dried as they are portrayed in science fiction. Rather famously, the mutation that confers sickle-cell anemia also confers resistance to malaria. But for most genes, we don't know what the side-effects of their mutations will be. How can you properly ask for consent to a procedure whose consequences are often unknown and perhaps unknowable? All the more harder when the person on whom the greatest burden is borne is not yet in existence, let alone capable of giving consent.

2 comments

And even the case of sickle-cell is extremely straight forward compared most genes and what traits they influence. Even hair color is controlled my multiple genes and is not full understood.

It’s why I am personally a bit watery on predictions that CRISPR is going to be a miracle cure anytime soon. CRISPR is like having a modern machine shop complete with high precision CNC machines in the Bronze Age. You know there is big potential but do you really know what to do with it, or how? Can you use it to its full potential?

Human experiments without consent is about more than just the parents. A huge factor is early experiments will result in a lifetime of suffering for the infants due to any mistakes or unknown consequences etc. The ethics might be more debatable if we knew what was going to happen, but there are huge unknowns here.
I can already see the headline coming: "I was a CRISPR baby, and I wish I wasn't born".