this post was submitted on 17 Mar 2025
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[–] jsomae@lemmy.ml 10 points 7 hours ago (1 children)
[–] allo@sh.itjust.works -2 points 6 hours 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 5 points 7 hours ago

I’m just here for the comments

[–] RizzoTheSmall@lemm.ee 1 points 6 hours ago* (last edited 6 hours ago) (1 children)

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

[–] jsomae@lemmy.ml 1 points 5 hours ago (1 children)

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

[–] RizzoTheSmall@lemm.ee 2 points 4 hours ago

I doubt it has anything to do with him. My comment was in reference to the context of the post, whereby medical experimentation on humans is being regarded as progress and being held back by ethics.

[–] Cephalotrocity@biglemmowski.win 15 points 15 hours ago* (last edited 14 hours ago) (7 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 12 points 7 hours ago

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

[–] Snowclone@lemmy.world 5 points 8 hours ago (1 children)

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.

[–] allo@sh.itjust.works -4 points 5 hours ago

it aint luck. he did it right

[–] jsomae@lemmy.ml 2 points 7 hours ago* (last edited 7 hours 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 5 points 6 hours ago (2 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 2 points 5 hours 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.

[–] allo@sh.itjust.works 1 points 4 hours ago

would he, as the God curing the hiv, be more or less moral than the God giving the hiv?

The power to enact change is not a 100% bad thing. It only looks that way because of rampant corruption. There are good people in the world too. It is the good people who should be powerful. Keep in mind he is not developing something for a monsanto patent thicket; he is curing diseases without it being tied to nor profiting big pharma

[–] ghost_of_faso3@lemmygrad.ml 5 points 10 hours ago* (last edited 10 hours ago) (3 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.

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[–] VitoRobles@lemmy.today 2 points 10 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.

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[–] JackbyDev@programming.dev 1 points 9 hours ago

This could be a good meme template.

[–] Randomgal@lemmy.ca -1 points 7 hours ago (1 children)

Hot take.: He is right though.

[–] fckreddit@lemmy.ml 7 points 7 hours ago (3 children)

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

[–] Vreyan31@reddthat.com 10 points 5 hours 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.

[–] qjkxbmwvz@startrek.website 3 points 5 hours ago

This is obvious though


currently, you might test a drug on mice, then on primates, and finally on humans (as an example). It would be faster to skip the early bits and go straight to human testing.

...but that is very, very, very wrong. Science of course doesn't care about right and wrong, nor does it care if you "believe" in it, which is the beautiful thing about science


so a scientifically sound experiment is a scientifically sound experiment regardless of ethical considerations. (Which does not mean we should be doing it of course!)

Now, taking a step back, maybe you're right that, in the long run, throwing ethics out the window would actually slow things down, as it would (rightfully) cause backlash. But that's getting into a whole "sociology of science" discussion.

[–] jsomae@lemmy.ml 0 points 7 hours ago* (last edited 7 hours 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.

[–] allo@sh.itjust.works 16 points 20 hours ago* (last edited 6 hours ago) (10 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 10 points 10 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 6 hours ago* (last edited 5 hours 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 8 hours ago* (last edited 6 hours 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.

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