Monday, 30 December 2019

Chinese scientist He Jiankui jailed for creating world's first gene edited babies "in the pursuit of personal fame and gain"

quote [ The Chinese scientist who created the world's first gene edited babies has been jailed for three years for his illegal experiments, state officials have announced. He Jiankui was also fined three million yuan ($430,000) for his work, which he announced at the International Human Genome Editing Summit in Hong Kong in November, 2018. ]

Who does he think he is, General Zod?
[SFW] [science & technology] [+2]
[by vintuk@2:33pmGMT]


Dienes said @ 2:55pm GMT on 30th Dec [Score:1 Underrated]
I'm all for gene editing, including with humans. I'm pro-GMO and pro-science.

I'm pretty heavily against unethical science, though, and being stoked for the scientific advancement doesn't suddenly make unethical shit okay, and having ethical standards for scientific advancement doesn't make one an anti-technology Luddite.

He Jiankui didn't do adequate risk-benefit analysis, didn't have adequate preliminary trials or supporting review, didn't have adequate IRB oversight/approval, didn't have appropriate informed consent, didn't register his work appropriately, the list goes on.

Bad science doesn't advance us, and we shouldn't promote bad science because of our enthusiasm for the fruits of good science. Have patience, do it right, do it ethically.
foobar said @ 10:11am GMT on 2nd Jan
That's the thing, though, how is any of this unethical unless you're labelling any embryonic gene editing unethical?

I'm really leary of "bioethics," because it always seems to be thinly veiled conservatism, and an attempt to hold back progress. No one was hurt here; the parents consented and the embryos only exist because of the experiment.
Dienes said @ 2:28pm GMT on 2nd Jan [Score:1 Insightful]
"They gave consent! Sure, it wasn't actually informed consent, but what's the difference?" -foobar

I don't know how else to explain to you that the consideration of human rights in any experiment is important, and that skipping it, like was done here, was a bad thing. You're basically doing exactly what I said before: accusing anyone who wants ethical standards of being anti-technology. We can have both. Its just less flashy than you like.

Yes, science is conservative. That is literally the entire point of the scientific method, peer review, replication - to do things systematically and carefully because otherwise your data are shit and don't actually further our knowledge.

You don't actually love science, you're just looking at its ass as it walks by.
vintuk said @ 2:52pm GMT on 2nd Jan
who doesn't like looking at ass? lol
foobar said[1] @ 3:05pm GMT on 2nd Jan
Wasn't it though? I mean, if He didn't tell the parents what he was doing, and what he hoped to accomplish, well fine, but I don't think that's what actually happened.

Science shouldn't be conservative. Science should get messy, make mistakes, and get on the fucking school bus with its hot ass.

If you're telling consenting adults that they shouldn't participate in an experiment, you're not the good guy. You're just the asshole getting in the way who should be pushed aside.
mechanical contrivance said @ 3:17pm GMT on 2nd Jan
You would make a good Nazi doctor.
foobar said @ 3:49pm GMT on 2nd Jan
That's a bit absurd, and just circles back to the original point. None of this is about "ethics," it's about controlling what people do with their own bodies.
Dienes said @ 4:09pm GMT on 2nd Jan
Could you show me where I said that consenting adults shouldn't participate?

What I said was that he didn't get informed consent, and that consent is important. Its especially important when you are literally creating human beings. If it isn't informed, its not truly consent. When I say he didn't get informed consent, I'm saying he didn't adequately tell the parents what he was doing, what were the risks and potential gains, any conflicts of interest, and what he hoped to accomplish. You can't just shove a consent form in someone's face. That consent form has to be in accessible language - if I gave a person a consent form in Klingon, and they signed it, that isn't getting informed consent. That's just coercing a signature. A 25-page technical document with dubious follow-up? That would never get approved in our lab. Even if it was in accessible language, he didn't do an adequate risk-benefit analysis, which means he can't provide adequate information to the participants about the potential risks, which means its not informed consent.

If you think science should be 'messy,' it looks like you fundamentally don't understand what science is and how it works. If its messy, you lack the controls to make actual progress. . Your take on science is basically the YouTube 'experiments' that shove a hot knife in slime before asking you to like and subscribe. Unless you meant the ends justify the means, which opens the door to some utterly monstrous things. You seriously can't see the problems that can arise if we're being 'messy' when changing a child's DNA? Or do you just not care since you don't have to live with the consequences?
foobar said[1] @ 5:48pm GMT on 2nd Jan
I'm hoping we don't actually disagree, but rather just for the most part aren't clear on the facts. That could well be on me.

I'm assuming he told the parents that he was modifying the embryos, and what he hoped the results would be, but that the ultimate results wouldn't be known beforehand.

You're not doing real science if you insist on a "risk-benefit analysis," especially in a case like this where the risk is effectively null. There is no child in a case like this, unless you're making the anti-choice argument that an embryo has rights. The parents (really, only the mother) has the ultimate and final choice to take whatever risk she wants, even if it's unknown.
gendo666 said @ 3:51am GMT on 31st Dec
"For personal gain"
You mean "not making a clone army of brainwashed supersoldies for China.

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