Genetically Modified Humans Born (Allegedly)

Once again I plead that when you see that an expert community looks like they don't know what their doing, it is usually more accurate to 'reduce confidence' in your understanding rather than their competence. The questions were patently not 'about forms', and covered pretty well the things I would have in mind (I'm a doctor, and I have fairly extensive knowledge of medical ethics).

To explain:

• Although 'institutional oversight' in medicine is often derided (IRB creep, regulatory burden, and so on and so forth), one of its main purposes is to act as a check on researchers (whatever their intent) causing harm to their patients, and the idea it is good to have other people besides the researcher (who might be biased) and the patient (who might be less well informed) be the only ones making these decisions. That typical oversight was bypassed here is telling, but perhaps unsurprising as no one would green-light violating a moratorium to subject healthy embryos to poorly tested medical procedures for at best marginal clinical benefit.
• A lot of questions targeted how informed the consent was, because this was often relied upon in the presentation (e.g. "Well, we didn't get the right mutation, but it was pretty close, and the parents were happy for us to go ahead, so we did").
• The 'read and understand' question (I'm using the transcript, so maybe there were dumber questions which were edited out) wasn't a question about whether the patients were literate, but whether they had adequate understanding of (e.g.) the technical caveats which they were giving consent to proceed with (e.g. one mutation was a 15 del rather than a 32 del, which rather than the natural mutation which induces a frame shift and the non-functional protein gives a novel protein with a five aa removal, which may still generate an HIV susceptible protein and some remote chance of other biological effects).
• The 'training' question is because establishing whether consent is 'informed', or providing the necessary information to make it so, isn't always straightforward (have you ever had a conversation where you thought someone understood you, but later you found out they didn't?) I did a fair amount of this in medschool, and I don't think many people think this should be an amateur sport.
• (As hopefully goes without saying, having two rounds of consent where in each the consent taker is a researcher with a vested interest in the work going ahead has obvious problems, and hence why we're so keen on third party oversight).
• I also see in the transcript fairly extensive discussion about risks (off-target worries would have been tacit knowledge to the audience, so some of this was pre-empted in the presentation then later picked at), and plans for followup etc.

Watching the Q&A was mindbending, and reminded me why I dislike bioethicists so much. Asking He Jiankui whether the participants were literate enough to read the forms! (You got one question, with so many important things to ask, and that was the point you decided to make?)

I did not know what to expect, but I am not surprised.

I am now interested in how this plays out from an alignment perspective. It seems to me that the ethics of genetic editing have been taken pretty seriously by practitioners, and I'm tempted to make an analogy between the ethics here and safety in AI.

I really hope those kids are okay.

In fairness, "bureaucracy" is an unusually difficult word to spell correctly (though splitting it as bureau/-cracy, the former being an English word and the latter the suffix in democracy, autocracy, etc., helps) and Christian is not a native anglophone.