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.
I’m someone who both prefers and practises the ‘status quo’.
My impression is the key feature of this is limited (and author controlled) sharing. (There are other nifty features for things like gdocs—e.g. commenting ‘on a line’ - but this practice predates gdocs). The key benefits for ‘me as author’ are these:
1. I can target the best critics: I usually have a good idea of who is likely to help make my work better. If I broadcast, the mean quality of feedback almost certainly goes down.
2. I can leverage existing relationships: The implicit promise if I send out a draft to someone for feedback is I will engage with their criticism seriously (in contrast, there’s no obligation that I ‘should’ respond to every critical comment on a post I write). This both encourages them to do so, and may help further foster a collegial relationship going forward.
3. I can mess up privately: If what I write makes a critical (or embarrassing) mistake, or could be construed to say something objectionable, I’d prefer this be caught in private rather than my failing being on the public record for as long as there’s an internet archive (or someone inclined to take screen shots). (This community is no stranger to people—insiders or outsiders—publishing mordant criticisms of remarks made ‘off the cuff’ to infer serious faults in the speaker).
I also think the current status quo is a pretty good one from an ecosystem wide perspective too: I think there’s a useful division of labour between ‘early stage’ writings to be refined by a smaller network with lower stakes, and ‘final publications’ which the author implicitly offers an assurance (backed by their reputation) that the work is a valuable contribution to the epistemic commons.
For most work there is a ‘refining’ stage, which is better done by smaller pre-selected networks rather than of authors and critics mutually ‘shouting into the void’ (from the author’s side, there will likely be a fair amount of annoying/irrelevant/rubbish criticism; from a critic’s side, a fair risk your careful remarks will be ignored or brushed off).
Publication seems to be better for polished or refined work, as at this stage a) it hopefully it has fewer mistakes and so generally more valuable to the non-critical reader, b) if there is a key mistake/objection neglected (e.g. because the pre-selected network resulted in an echo chamber) disagreement between (‘steel-manned’) positions registered publicly and hashed seems a useful exercise. (I’m generally a fan of more ‘adversarial’ - or at least ‘adversarial-tolerant’ norms for public discussion for this reason.)
This isn’t perfect, although I don’t see the ‘comments going to waste’ issue as the greatest challenge (one can adapt one’s private comments to a public one to post, although I appreciate this is a costlier route than initially writing the public comment—ultimately, if one finds ones private feedback is repeatedly neglected, one can decline to provide it in the first place).
The biggest one I see is the risk of people who can benefit from a ‘selective high-quality feedback network’ (either contributing useful early stage criticism, having good early stage posts, or both) not being able to enter one. Yet so long as members of existing ones still ‘keep an eye out’ for posts and comments from ‘outsiders’, this does provide a means for such people to build up a reputation to be included in future (i.e. if Alice sees Bob make good remarks etc., she’s more interested in ‘running a draft by him’ next time, or to respond positively if Bob asks her to look something over).