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. So instead of condemn the child to potentially a short miserable HIV life, he basically made it so their children were healthy. 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. Those science boards rather their kids suffer and die. Nah. Help the people. 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.
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
and imagine if we had 5 more hands; we could make 5 more points.
#thefuture
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.
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
my type of guy. And he still does his research to help people even with the public treating him like it does.
I think a really exceeding important clarification here is he edited the genomes of human embryos, not babies. Babies are already born humans, embryos are a clump of cells that will become a baby in the future. I do not condone gene editing without consent, which is what he did, and yes there is lots of questionable ethics around gene editing but he did NOT experiment on babies. This should be made clear especially in a science based community, memes or not.
Implying that babies are the same thing as embryos is fundamentally incorrect, in the same way a caterpillar is not a butterfly and a larva is not a fly, the distinction is very important.
EDIT To add further detail - One of the reasons this is so unethical is that he experimented on human embryos that were later born and became babies. His intent was always to create a gene edited human, but the modifications were done while they were embryos, not live babies.
Seems like splitting hairs, at best, for you to claim the three edited human babies who were born from this experiment aren’t part of the experiment. He fully aimed to study them and they are still being scientifically monitored.
He also had a bizarre contract he made the parents sign that if they changed their minds they had to reimburse him the financial costs of the experiment.
I understand what you’re saying, but his experiment allowed the embryos to come to term and be born as human babies. Scientists have worked with human embryos before and avoided similar outcry by not allowing them to develop further (scientific outcry, not religious). Calling his work an experiment on human embryos ignores the fact that he always intended for his work to impact the real lives of real humans who would be born.
Real humans who would be born and could potentially have children, passing whatever genetic edits they have (intended and off-target) into the gene pool.
I totally agree, I do believe what he did was unethical and criminal.
I also believe the clarification on if the experimenting was done on live human babies or if it was done on human embryos is exceeding important. Implying that this was done on live human babies is basically misinformation. Just look at the rest of this thread and how people are talking about this, everyone is discussing this as if its was living, breathing, crying babies that were experimented on, not a clump of cells before they have any type of living functionality.
If anything what you said should be included, he experimented on embryos with the intent of them being born and becoming babies. But it most definitely should not be “he carried out medical experiments on babies”, because that is patently untrue.
I disagree and think you are getting too caught up in semantics in this case. Can I put cats and mice in separate rooms, with the intention that the cats can find a way into the other room, and claim I am only doing an experiment on the cats, even once they get through and start killing the mice?
What if I had a woman take some kind of drug during the first 3 weeks of pregnancy, with the explicit purpose of seeing what it does to the baby when it’s born. Can I say, no, no, I was experimenting on a woman and a zygote/blastocyst, not a baby!
You don’t get to just remove yourself from the result. If he did something that made the baby be born in a way that’s different to how it would have been born, in my mind that is a direct experiment on the baby, just via indirect means.
You can say the title isn’t specific enough for your liking, but by my standards it isn’t wrong or misinformation. He conducted an experiment that directly affected the lives of babies. That IS an experiment on the baby, regardless of the method used to perform the experiment.
Its is semantics, but also this is science and semantics are important. If we want to get really in to semantics we should say the experiments were done on humans, as the embryo, fetus, baby, toddler, pre-teen, teenager, and adult are all phases of the human life cycle and this experiment was done to produce genetically modified humans. Even CRISPR experiments refer to the organism model when experimenting, not the life cycle phase, unless it is specifically part of the experiment IE: in vitro vs In vivo
Saying the medical experiments were done on babies specifically is for the shock value, and it works, look at the reactions it gets. This should be a hotly debated topic, people should be concerned about the ethics of gene editing and how it is regulated. This experiment was not ethical in anyway and it was criminal, but using hyperbole to inflate the shock value for engagement is also not the way to communicate how unethical and criminal this is.
By all accounts what he did worked. The potential to end HIV is huge. The amount of human suffering that could be reduced by rolling out what he did is very real.
The technology is here. It’s better to strictly manage it for the public good than to lock it away.
Per the wikipedia page it states that it is not clear if it effective because they’re not going to intentionally infect the children to test it. But we see the results specifically on the targeted gene. That’s a success and demonstrates the technology works.
I’d argue the folly was inserting an artificial gene as opposed to the natural gene that we already know works. Either way the technology showed expression on the correct gene, that is a success.
We’d be having a better discourse on this if his results weren’t banned from every journal and not studied.
Read that section I pasted in again.
“Lulu has only heterozygous modification which is not known to prevent HIV infection.”
It’s not the results are “banned from every journal” - it’s that doing ad hoc CRISPR experiments is not going to meet peer review. Doing random things because you want to see what happens is not how science works.
Having a heterozygous deletion is still effecting the right gene. Without knowing both of her parents genetics it’s hard to say if it was natural. What he did could produce either a heterozygous or homozygous result on the gene, but only the homozygous presentation is effective at prevention.
So 1 was a full success and the other showed activation on the appropriate gene, but not enough to confer resistance. Although it is possible it does since he used an artificial gene. We know the natural one is not effective in a heterozygous presentation. I still think that was his greatest mistake. He should have just used the naturally effective gene.
You do make a good point with the full backing rigor of the scientific method this procedure would always be successful.
You do make a good point with the full backing rigor of the scientific method this procedure would always be successful.
What? Even highly effective treatments with ample research backing will not “always be successful.” (Not just in genetics. Across the board.)
Again, as the excerpt I copied in shows, there are also RISKS with CRISPR. Things like mosaicism, things like half of your cells having the modification and half not.
Do you have any background in biology? Can you explain why a gene that only conveys resistance in a homozygous genotype would be magically effective in a heterozygous because it was artificial?
Can you define the terms “homozygous” and “heterozygous” even?
By all accounts what he did worked
What “accounts” are you reading? You need to read more accurate accounts, because what he did didn’t work and the experiment wasn’t very useful.
I have talked to some Americans who claims that sperm + egg = baby and I want to place an egg in front of them and ask them what it is and if they say anything other than a chicken, I will laugh.
Also, thank you for the distinction. Kind of insane to call embryos babies. It is shit like this that makes me feel like my brain is shrinking when I talk to some people online.
They became babies when they were born with experimental modified genomes without their consent
Fair enough.
Dr He’s dream of baby gladiators cannot be hindered by whiny-don’t-make-the-babies-fight so-called “ethics”!
Imagine what the world has lost
Watch Star Trek
I think the only thing that deserves clarification is if he broke ethics to do biomedical research. It sure seems he did. There’s ethics approval in any study for a good reason.
“Speed limits are holding me back from getting from a to B in as little time as possible” yeah, and they reduce the likelihood of injuring/killing a people in the process.
yeah, but, consider: I really want to get to point B. like, so badly. and I’m pretty sure I’m a good driver.
Is nobody concerned that illegal experiments on babies only gets you 3 years?
Maybe they were Uyghurs so it was classified as “property damage” in Chinese law.
Be careful, you might get banned from lemmy dot ml for hatespeech against dictatorships.
It’s literal misinformation, so it probably should be removed, yes.
I’ve blocked that instance, but if they need more material to ban me I have it.
Everyone who opposes dictatorships is a Nazi or a liberal, who are also Nazis.
Nazis, by definition, do not oppose dictatorships. Not sure where you got that idea, but it certainly wasn’t a level-headed assessment of history.
The guy you’re responding to is a liberal doing a piss poor parody of a ML.
You can’t do a good parody if you get angry before the punchline, or don’t understand the thing you’re parodying in the first place.
I assume you guys get that a lot?
Yup. It’s actually crazy how anticommunist propaganda creates so many people who are so confidently wrong about things that are so easy to investigate.
Lol it’s so anti-communist to be anti-tankie. /s
I read it in Das Kapital, by Joseph Stalin. Don’t you liberal anarkiddies read theory?
Who cares about a tankie instance?
Why did you self censor by saying “dot”?
I wrote that on my phone’s touch keyboard, and I didn’t want to use
\.to escape the dot character to avoid autohotlinking.
The devil is in the details…
You are likely thinking (as I am) that he implanted robotic arms on babies but he may have just rubbed sage oil on them for all we know
https://en.wikipedia.org/wiki/He_Jiankui_affair
Laws were changed after this incident:
In 2020, the National People’s Congress of China passed Civil Code and an amendment to Criminal Law that prohibit human gene editing and cloning with no exceptions
So, in case you actually meant that weird ignorant remark you made about Uyghurs, the answer is no and no.
Lemmitors downvoting you because actually learning about the case conflicts with their “cHiNa BaD” circlejerk.
It was a joke… You don’t get to jail for experimenting with slaves in China.
Thanks for the information – good to know. I assume that like American law, he couldn’t be punished for something that wasn’t illegal when he did it?
Regarding the Uyghur comment the other guy made, definitely a bit tasteless but I don’t think it’s that ignorant given the genocide China perpetrated against them.
What he did was illegal. Even without specific laws about genetic modification or cloning, he did perform experiments with babies without the necessity approvals from ethics and safety, without informed consent from the parents and likely misusing funds allocated to other research.
3 years is still to short.
he couldn’t be punished for something that wasn’t illegal when he did it?
I don’t think CCP cares about the principle of no ex post facto punishments.
Depends how successful the experiment is (and probably on what the goal is as well).
If he’d been testing the effects of grass vs grain feed on human fat marbling, I’d imagine the sentence would have been a little more severe
Dang, you can really just pull shit straight out of your ass and people will believe it.
lemmy dot ml
Yes, .ml users do indeed tend to be more concerned with fact-checking and saying things that are actually true as compared to flat.world, thank you for pointing that out.
Asking out of curiosity what does that “ml” mean?
Supposed to mean
“machine-learning”Mali, but the developers of Lemmy (whose instance it is) are using it to mean “Marxism-Leninism”, which is a misnomer invented by Stalin. While ml has some non-tankie leftists, that instance is infamous because of them.Supposed to mean “machine-learning”
No, it officially stands for Mali. Why do you think it stands for machine leaning?
Great question! The truth is that the CCP and Russian Federation are basically spiritual successors of Marx himself. Here’s a list of bullet points explaining…
It’s actually the TLD for Mali, not explicitly related to machine learning, or leftism. That’s mainly what it’s used for though, outside of Mali.
Marxism leninism, it’s a political ideology, subset of communism. Basically the communists that love USSR, China, Cuba, etc. They love running propaganda about how these authoritarian governments did nothing wrong and how all criticism of them is just negative propaganda by the West.
Thank you kind stranger. Now I get the .ml hate
And China executed a shitload of people for political dissent…
And in what context medical experiments should be allowed on babies ?
A lot of contexts? Like the development depending on formula vs mother’s milk? Experimenting doesn’t need to mean vivisection or injecting unregulated drugs, but if you need to do the experiments illegally, I’m not sure it was something “safe”
Not babies, embyros
Average CCP party member
Wasn’t he the guy who was trying to find a way for HIV-positive couples to have HIV-negative babies?
Antiretroviral therapy for pregnant women already is a safe and effective way to avoid HIV transmission to the baby. It’s part of standard treatment guidelines https://www.sciencedirect.com/science/article/abs/pii/S1701216324003748
So the guy has genetically engineered babies as a potentially risky and certainlycontroversial solution for a problem that already has a safe and non-controversia solution.
wait he’s not a fucking parody account?? i thought he was like. larping as an umbrella corp researcher
Nah, I’m pretty sure that’s the dude that used crispr on some babies years ago in an attempt to make them immune to HIV or something.
I was very surprised to hear that China arrested him for it in the first place
Dw, he’s out now and back at it! 😱
Ooof…
If a person’s criticism is of “ethics” in general, that individual should not be allowed in a position of authority or trust. If you have a specific constraint for which you can make a case that it goes too far and hinders responsible science and growth (and would have repeatable, reliable results), then state the specific point clearly and the arguments in your favor.
And we already have a safety valve for when conventional ethics is standing in the way of vital research: the researchers test on themselves.
https://en.wikipedia.org/wiki/Self-experimentation_in_medicine
If it’s that vital, surely you would do it to yourself?
It’s not terribly common because most useful research is perfectly ethical, but we have a good number of cases of researchers deciding that there’s no way for someone to ethically volunteer for what they need to do, so they do it to themselves. Sometimes they die. Sometimes they make very valuable discoveries. Sometimes both.
So the next time someone wantz to strap someone to a rocket engine and fire it into a wall, all they have to do is go first and be part of the testing pool.
If it’s that vital, surely you would do it to yourself?
You can’t really do the kind of experiments being done genetically modifying growing infants on yourself, I imagine. Not that that should be an excuse, of course.
You can work your way through all the different animal models, showing that you have a clear understanding of every single bio mechanism. Then start off with a small change to a human baby THAT WOULD OBVIOUSLY BENEFIT showing that nothing bad happens. Like we figured out this specific sequence leads to deformed hands, we have plenty of control babies with the deformed hands.
By this guys own logic, he didn’t even get usable fucking data. Crispr changes DNA, yeah no shit we all knew that. He gave them a slight boost to HIV. How the fuck are we supposed to find out without exposing them. A high likelihood that they would have grown up never worrying about HIV in the first place.
The babies were born to HIV infected fathers, so the part about “never worrying about HIV in the first place” isn’t quite accurate.
But honestly, that makes it even more infuriating. There probably would have been patients that would have CONSENTED to this if given the opportunity. He probably could have done things the right way - worked with animal studies, gone through the ethics process.
Instead, he decided to move fast and break things, without regard for others autonomy or consent.
Best I can do is generalization
