this post was submitted on 17 Mar 2025
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[–] jsomae@lemmy.ml 6 points 2 hours ago (1 children)
[–] allo@sh.itjust.works 1 points 1 hour ago

that is also where i place the importance: on the kids and parents. Not the science community nor science councils. Probably why i dont work at a university lab

[–] Itzdan@lemmy.world 3 points 1 hour ago

I’m just here for the comments

[–] Randomgal@lemmy.ca 1 points 2 hours ago (1 children)

Hot take.: He is right though.

[–] fckreddit@lemmy.ml 2 points 2 hours ago (2 children)

I am sure you have examples of situations where lower ethical standards led to much faster progress in research.

[–] Vreyan31@reddthat.com 1 points 5 minutes ago

Unfortunately, research on prisoners and concentration camp victims did produce new valuable medical information.

Most of the field of gynecology is based on experiments done on women slaves, where the "doctors" decided their victims conveniently didn't have nerve endings.

Ethics throttles research.

But I am aghast at the thought that we should permit unethical research in the pursuit of, at the end of the day, greed.

And I say this as a professional scientist.

I can't believe this conversation is even necessary.

[–] jsomae@lemmy.ml 0 points 1 hour ago* (last edited 1 hour ago)

Many kinds of early-in-life medical interventions can have permanent negative effects if they go bad, but nonetheless our ethical standards don't preclude them. This is a field where the ethical standards are suffocatingly high without good reason. As an aside, we should consider euthanizing newborns who suffer debilitatingly severe negative side effects due to any kind of failed medical intervention (with parental consent, of course). This will directly improve quality-of-life standards and also allow us to lower ethical standards on experimental treatments too.

[–] RizzoTheSmall@lemm.ee -1 points 1 hour ago* (last edited 1 hour ago) (1 children)

Unit 731 is the truly horrible source of a lot of modern medical knowledge

[–] jsomae@lemmy.ml 1 points 3 minutes ago

Can you explain what Unit 731 has to do with Dr. He?

[–] JackbyDev@programming.dev 1 points 4 hours ago

This could be a good meme template.

[–] Cephalotrocity@biglemmowski.win 10 points 10 hours ago* (last edited 9 hours ago) (6 children)

To all the commenters saying this guy was a saint for doing what he did, would you say the same thing had the outcome been disastrous? Babies born without HIV, but with constant excruciating pain or mental deficiency?

He took an extraordinarily reckless and permanently life-altering, for good or bad, risk with children's lives.

edit: spelling

[–] Tuxman@sh.itjust.works 7 points 1 hour ago

The good old adage: "you don’t have a gambling addiction as long as you keep winning"

[–] Snowclone@lemmy.world 4 points 2 hours ago

A lot of geneticist are DEEPLY against trying these things. This guy's lucky so far in that his actions haven't caused serious problems, we really don't know how adjusting genetics can backfire, but according to the professionals the risks are very very high.

[–] jsomae@lemmy.ml 0 points 2 hours ago* (last edited 1 hour ago) (1 children)

This is very hypothetical. You could make the same argument about any experimental medical intervention in a child's life. If I had the choice of being born with HIV or an experimental procedure with some (how much?) chance of risk, I'd chose the procedure. I think the criticism of this form of treatment is highly coloured because it sounds like "playing god."

[–] Cephalotrocity@biglemmowski.win 2 points 1 hour ago (1 children)

You could make the same argument about any experimental medical intervention in a child’s life

Yup, and there's even ethics review boards convened solely to analyze that argument with the particulars of a case and rule whether the treatment is okay to go ahead. This guy played god without approval from this review process and deserved the time served.

[–] jsomae@lemmy.ml 1 points 19 minutes ago

Okay, I do relate to this argument. It's the ethics review board's decision and not his to make. Fair enough. In this case, I am disappointed by the ethic review board's decision, which is why I sympathize with the doctor.

[–] ghost_of_faso3@lemmygrad.ml 4 points 5 hours ago* (last edited 5 hours ago) (1 children)

He also did actual time for it and everyone involved was banned from practicing medicine in China, even despite the fact they are the core of CRISPR technology at the moment, they still care enough about ethics to not support this.

Seems like a case of one rogue team of people deciding what they where doing was for the moral good and then the state checking them.

We can still see the initial intentions as being morally good, and the outcome of it being gray but punished; its a balanced perspective; a lot of people here seem to have the impression it was approved by the CPC when it wasnt.

[–] Cephalotrocity@biglemmowski.win 0 points 4 hours ago (2 children)

We can still see the initial intentions as being morally good

Ah, yes... the pavement of the road to Hell.

[–] jsomae@lemmy.ml 1 points 1 hour ago

This is a universal criticism of doing anything which is intended to be morally good.

[–] ghost_of_faso3@lemmygrad.ml 2 points 4 hours ago

Good thing the CPC put a roadblock on that path and diverted us back into the morally grey middle road then.

[–] Mustakrakish@lemmy.world -4 points 4 hours ago (1 children)

Sure lets just torture all the poor people so a handfull of rich fucks can afford stem-cell-zinfandel, never mind that 100,000 people were tortured and killed, at least we discovered a new anti-wrinkle cream. If you don't think that's what it always is in practice you're delusional. Shit like that is just as likely to cause mass disease or our extinction than it is to discover something useful, perhaps even more so

[–] jsomae@lemmy.ml 1 points 1 hour ago

Who are you even responding to?

[–] VitoRobles@lemmy.today 0 points 5 hours ago

This is the moral dilemma.

The whole Grimdank universe of just randomly testing things on people to make humans genetically more superior will absolutely improve life for future humans. No question. On paper anyways.

[–] allo@sh.itjust.works 13 points 15 hours ago* (last edited 52 minutes ago) (3 children)

Just so you all know what his horrible crime was...

"Formally presenting the story at the Second International Summit on Human Genome Editing at the University of Hong Kong (HKU) three days later, he said that the twins were born from genetically modified embryos that were made resistant to M-tropic strains of HIV.[48] His team recruited 8 couples consisting each of HIV-positive father and HIV-negative mother through Beijing-based HIV volunteer group called Baihualin China League. During in vitro fertilization, the sperms were cleansed of HIV. Using CRISPR/Cas9 gene-editing, they introduced a natural mutation CCR5-Δ32 in gene called CCR5, which would confer resistance to M-tropic HIV infection."

So imagine a couple where one has HIV but they really want to have a baby. He basically made it so their children were hiv free and then immunized them (edited for accuracy). In all my Crispr research, this is the story that most caused me to feel the science system had wronged a good person. Literally Lulu and Nana can grow up healthy now. Science community smashed him, but to the real people he helped he is basically a saint. I love now seeing him again and seeing he still has his ideals. Again, fuck all those science boards and councils that attacked him. Think of the actual real couple that just wants a kid without their liferuining disease. Also I love how he isnt some rightwing nutjob nor greedy capitalist. See his statement about this tech should be free for all people and he will never privately help billionaires etc etc.

anyway, ideals. i recognized them when i first came across him; i recognize them now. I know enough about him that I will savagely defend this guy. He isn't making plagues or whatever. He is helping real people.

[–] Hans@feddit.dk 6 points 4 hours ago (2 children)

This is pretty much all incorrect. CRISPR didn't have anything to do with Lulu and Nana not being born with HIV, we have known how HIV-infected men can safely become fathers for years now. The standard practice of "sperm washing" and IVF ensured that, CRISPR was completely unnecessary.^1^ The reason the parents accepted He's plan is because in China, HIV positive fathers are not allowed to do IVF regularly.^2^ Chinese often go abroad to get IVF done, but presumably, these parents couldn't afforded it. Not to talk about how He completely disregarded informed consent, giving them 23 complex pages, barely mentioning that they were doing gene editing, representing the whole thing as a "HIV vaccine"^3^

^1^: https://www.pennmedicine.org/news/news-blog/2017/june/how-hiv-positive-men-safely-become-fathers

^2^: https://www.technologyreview.com/2022/04/04/1048829/he-jiankui-prison-free-crispr-babies/

^3^: https://pmc.ncbi.nlm.nih.gov/articles/PMC6490874/#pbio.3000223.ref008

[–] allo@sh.itjust.works 1 points 44 minutes ago* (last edited 26 minutes ago)

Also i havent researched the validity of the ivf not allowed in china stuff, but I don't consider it a bad thing He giving the parents an avenue to a hivfree child when they otherwise are assumed 'too poor' to be able to do it. In fact that totally matches his statements about cures should not be paywalled; and i agree with him. Good thing for the families he was doing this experiment. Now they can have an hiv free child where they couldn't before.

[–] allo@sh.itjust.works 2 points 3 hours ago* (last edited 1 hour ago)

and those arent even the most aggressive articles. Anyway, for people reading, there are many contradictory parts of He's case depending where you look.

thanks i agree i had the 'kids would have been born with hiv otherwise with no alternative' part wrong. good correction. I have edited my comment accordingly. He removed the Hiv with one procedure and immunized with the other.

heres a much less biased telling of events. No it doesnt 100% support He being a saint. it isnt that biased nontrustable trash tho "As the couples listened and flipped through the forms, occasionally asking questions, two witnesses—one American, the other Chinese—observed. Another lab member shot video, which Science has seen, of part of the 50-minute meeting. He had recruited those couples because the husbands were living with HIV infections kept under control by antiviral drugs. The IVF procedure would use a reliable process called sperm washing to remove the virus before insemination, so father-to-child transmission was not a concern. Rather, He sought couples who had endured HIV-related stigma and discrimination and wanted to spare their children that fate by dramatically reducing their risk of ever becoming infected.

He, who for much of his brief career had specialized in sequencing DNA, offered a potential solution: CRISPR, the genome-editing tool that was revolutionizing biology, could alter a gene in IVF embryos to cripple production of an immune cell surface protein, CCR5, that HIV uses to establish an infection. "This technique may be able to produce an IVF baby naturally immunized against AIDS," one consent form read."

funny how things can look so different according to what side u are on. tho im not even going for pro He articles, just neutral or interviews. As far as your hostile ones where they weaponize anything they can... (reminds me of politics) the part I find sillyest is when they complain how He only successfully did the full mutation to one girl so the other may not be immunized. Like it's bad he did it but also bad he didnt do it enough. lol. its exactly like politics.

[–] theneverfox@pawb.social 3 points 13 hours ago (2 children)

On one hand, crispr isn't safe. And life is not something people have a right to create - that tremendous imposition should be met with a responsibility

On the other hand, life is treated as cheap almost everywhere. If we're going to force people to justify their right to exist, why not take a chance on their genetics to improve the species?

I mean, this was risky science, but not reckless. At some point we need to start fixing our genome, or we're just going to poison ourselves to extinction

[–] ghost_of_faso3@lemmygrad.ml 2 points 11 hours ago (1 children)

And life is not something people have a right to create

Yes they do?

Having children is literally the one thing most of us are equipped to do, and those who cant can adopt; the children of the future are our responsibility to raise. You seem to have a pretty self centered and unrealistic idea around child rearing; people raise children through invasions, unless you want to stop people from fucking somehow you're never going to stop reproduction.

[–] jsomae@lemmy.ml 1 points 1 hour ago (1 children)

Most of us are equipped for rape and murder, but we don't have a right to it.

[–] ghost_of_faso3@lemmygrad.ml 1 points 1 hour ago (1 children)

Thats why we have laws against rape and murder but not against having kids, because that would be eugenics.

[–] jsomae@lemmy.ml 1 points 20 minutes ago* (last edited 10 minutes ago)

"because that would be eugenics" is not an explanation. You're just asserting that eugenics is bad, which is begging the question -- this is a post about the ethics of eugenics. You can't just come in and say "eugenics is bad because it's eugenics."

Anyway, I don't think anyone is calling China's former One Child Policy eugenics.

[–] allo@sh.itjust.works 4 points 13 hours ago (1 children)

and imagine if we had 5 more hands; we could make 5 more points.

#thefuture

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[–] Djinn_Indigo@lemm.ee 13 points 15 hours ago (1 children)

I think gene theraly is a miracle technology that should absolutely be explored more. The thing is, we're already at a point where we can do it in adults. So doing it on embyros, which can't consent, is simply an uncessasary moral hazard.

That said, I think the doctor here sort of has a point, which is that medical research is sometimes so concerned with doing no harm that it allows harm to happen without trying to treat it.

[–] jsomae@lemmy.ml 1 points 1 hour ago

Newborns need medical treatments all the time and can't consent. I agree that the inability to consent should encourage non-intervention -- for instance, we shouldn't "correct" intersex infants' genitals -- but there is a limit to this.

[–] allo@sh.itjust.works 8 points 16 hours ago (2 children)

my type of guy. And he still does his research to help people even with the public treating him like it does.

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[–] allo@sh.itjust.works 9 points 16 hours ago (1 children)

I'd like to get in to genetic engineering. When I came across his story while researching crispr, I sympathized with him. He did the experiment in what to me is a moral way. Just going on memory it was like 'take 4 embryos, edit two, keep parents in the loop and ask which embryo they want'. Complain all you want, but he did no wrong; it's the public and system that then wronged him. So yeah, of nearly anyone, he is the one who most gets to say 'ethics ruining science'. It's ironic because there are tons and tons of unethical science activities done literally every day. But for those to be ignored and instead ethics police to hit him when he did all his stuff morally and resulted probably in two extrahealthy kids... Yeah I agree with him. I think everything should be done morally, but if he is going to be hit like that under the guise of 'ethics' then nah. 'ethics' needs to be replaced by morals and decency. Literally horrifically murdering people (war) is legal and accepted while him using science, AND CORRECTLY, to protect people from liferuining diseases got the treatment it did? nah. I hope he continues growing and doing more genetic engineering and this time doesn't share a single thing with the public. He should never give the people that treated him like that a single piece of data. There are ways to bypass the patent thickets if he isn't selling what he does, especially if he shares no info about it. I support him.

prepares for 200 downvotes

[–] jsomae@lemmy.ml 1 points 2 minutes ago

you have my upvote

and my axe

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