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
Watch Star Trek
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
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.
Mengele vibes right there.
That borders on Holocaust denial to even try and compare the two
Plesse elaborate.
Well, the nazis did make a lot of scientific progress…
/s, just in case
I am pretty sure that NASA would unjokingly agree with you on that.
The nazis were ethical compared to what was happening at Unit 731…
We don’t need to compare the two, they both committed atrocities horrific beyond comprehension.
doesn’t get enough attention, true, but both are so far over the moral event horizon, anyone who tolerates either one living should be shot.
Ethics are supposed to throttle human activity. That’s their fucking job. That guy is a goddamn sociopath.
not necessarily throttle, but divert into more ethical directions.
the nazi twin ‘experiments’ for example, were monstrous but produced like no useful data.
atrocities do not necessarily mean better science. sometimes you’re just being an edgelord.
I honestly think that is the most important point to make. It is a fundamental truth and force the person to talk specifics. Why is it bad there?
I thought this guy was the one doing the human throttling
No he used crispr to give babies HIV resistance.
People on the side of classical ethics say the outcome was unknown so manipulating the embryo was wrong (ie maybe it makes them more likely to have a birth defect or something else wrong with them). Others might say “an embryo isn’t a person” or “the risk was low and the gain was high” but unfortunately he also didn’t tell anyone so.
There’s also the fake “ethics” where people claim humans have more inherent value than chimps or mice, which of course we do not. Unfortunately this false platform is where a lot of the arguments are based: humans special, so we can’t manipulate their genome before birth. Once they are born of course these kids would get HIV and die, or be sent to work in a suicide (apple) factory, or help murder Uyghurs…but god forbid you experiment on people that’s bad.
I’m on the side of he shouldn’t have done things the way he did, but there are hiv-resistant babies and we know how to make them now and it’s easy.
There’s no guarantee that they are HIV resistant, and there’s a good chance that West Nile or tick borne diseases will be more harmful than them.
Playing mad scientist with human lives is unjustifiable. If he wanted to make “HIV resistant babies” he should have done preliminary testing to show that what he was doing was safe, communicated openly about what he was doing, ran his studies by an IRB, told the parents about the potential risks and benefits about what he was doing and then only moved forward with their CONSENT.
What he instead did was mess with someone’s babies on a wild hare. That’s not how science works.
Edit: also - it didn’t even work. The girls had copies of both genes, and not the HIV resistant trait.
Noone has consent before being born. Why is forcing a baby into this world any better or worse than changing their genes? Why is it worse to do it to a human than a monkey?
The mother has autonomy over her body at bare minimum. You don’t have to even get into arguments about parents versus children there. She (or the rare he or they) has full control over what is done to her person/physical body. That’s kinda research ethics 101.
I don’t think it’s particular great to do at random to monkeys either. The fact that Neurolink just got to randomly torture and slaughter monkeys is very upsetting to me, and is something I will probably harp on about next time I get to incorporate an “scientific ethics” lecture in a safe space. Any kind of animal research at a university or any other respectable organization - at least if the critter has a backbone - is going to require some sort of serious justification for any unavoidable pain or suffering. My own lab experience was with invertebrates but we didn’t kill them without reason. We killed lots of them, if bug hell exists I will be there, but we didn’t torture them.
With humans though, we have a bit more capacity to feel things like despair and anguish or even perhaps positive emotions, as rare as they might be in the modern world. A human can feel complicated emotions about having been changed. A human can feel pain from a medical condition caused by the fact that genetic mutations are complicated as fuck and we still don’t quite know what’s going on everywhere yet?
I think the last 20 years of RNA research probably shows we don’t quite understand everything yet - I’m just a generalist so I’m not super familiar with how all that works but when folks have trusted me enough to do high school biology a good chunk of my lecture time is “genetics is extremely complicated, things like a start/stop codon getting messed up could change a lot, this is also why binary understandings of ‘sex’ are incompatible etc…” I’m not a biologist and I am always happy for a biologist to step in and correct me, but we don’t understand even a fraction of what there is to know about how all of this works together yet. Fuck, add in epigenetics (Lamarck as a headless horseman) and it gets even more fucky wucky.
If you fuck up, you could make a being who experiences profound suffering for their entire life because of your actions. Yeah, nature does that, but the fact that the universe is cruel does not give humans permission to be so.
The complicated interaction between all of it is fascinating and needs more research - on living human beings who consent to having their genetics studied. Changing random bits in vitro is not necessarily going to result in solid science in vivo.
He did things in a completely non reproducible way, which is not science or research. If any of the victims have better outcomes that is pure chance.
Where is there a document that describes that part?
It looks like the mutation wasn’t perfect but I don’t see anything that indicates it wouldn’t be reproducible.
But there is probably a lot of wiggle room between what we have currently and stitching babies together at the skull or whatever people think of.
We can’t have the perfect ethics. And I’m pretty certain company’s use ethical limits to limit competition like the do everything else.
He gave the children of HIV positive fathers, conceived via in vitro fertilization, resistance to HIV. I don’t think it’s as bad as everyone suspects. I’m not sure children conceived the normal way would have survived.
Hi, I am graduating in biotechnology and my professors discussed this in class. The main points they brought up were:
1: the technique used for gene editing in those test subjects was and still is not 100% specific. With the correct primers you can still have incorrect breaks in the DNA and incorrect adhesion of your gene of interest, pair of bases can be lost and/or introduced indirectly, causing mutations that range from luckily encoding the same aminoacid to a sequence break, altering all of the following aminoacids and resulting in either a truncated protein that luckily does nothing to a protein that results in who knows what damage to the cell. This is ok in situations where you’re changing just a few calls inside or outside of the body, but when you’re changing the genome of an entire person, that is extremely dangerous for no real gain because
2: the gene he edited was still being studied and was not guaranteed to give them immunity and it turned out they didn’t gain immunity to HIV.
3: there are better ways to guarantee a baby is not born with HIV that are better known, do not involve possibly giving ultra cancer to babies and have been throughout tested before, they did not advance our scientific knowledge and put people’s lives in danger for no guaranteed benefit besides his own ego.
There’s a reason why the entire scientific community was against his actions, especially those who work with genetic editing.
Also - there are known negative interactions of that mutation with other diseases.
From wiki:
What he did was flat out unethical and completely unjustifiable. If he had discussed the risks and benefits with the parents, ran it past an IRB, then maybe we could be having a conversation about the ethics of “playing god.”
Edit: also, he fucked up and the girls have mosaicism/no enhanced HIV resistance. Wonder how good a job he did with his CRISPR…
Thanks for the thoughtful response.
He didn’t give them that though. He just claimed he did.
The road to hell is paved with good intentions. Just because he’s trying to achieve something admirable, that doesn’t automatically mean his actions are ethical.
“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.
I think he does it ironically tbh, his posts are all over the place, from making fun of Europe for regulating everything to then saying that gene editing should be regulated by international laws to then saying ethics are holding back humanity, then just saying he loves austin texas, then stating that he will not develop bio weapons lmao.
Stanford cup and CPC flag, he does have a sense of humour tbh.
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.
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
He used CRISPR to make babies immune to HIV.
No, he inserted a gene that is associated with resistance to HIV, but is also associated with increased risk of some cancers. He did this without informed consent, he did this without running it by an ethics board, he did this without knowing whether it would work or not.
Let’s stop pretending that he’s a good guy that just magically made HIV immune babies.
Edit: it also didn’t work. The babies have genes both with and without the mutation.
We also don’t know if it was just that gene that was altered, or if there are other effects. Modern gene editing isn’t so precise that we can edit just the gene we want. A lot of genes with similar sequences as the target can also be affected.
It’s basically like firing a shotgun at the house they live in. You might hit the one you want, but you may also hit other unrelated genes in the process.
Diabolical
Thanks for the info
definitely on the evil side considering he probably planed to infect them to test his theories
Nope, he had no plans to infect them. The babies had parents who were HIV-positive.
Wow you are jumping to a lot of stupid ass conclusions for someone who won’t google a name.
Fine, give him your baby to experiment then
You’re not ok
Did not have baby zombie apocalypse on my Bingo card, but there ya go
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.
Oh shit someone tell the
fascist scumliberal toads that its actually blue on blue, this guy was working for a honky kong universty!!!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.
Source: My racism
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.
Hong kongs a dictatorship? You know, the place this doctor was working?
Well observed, its been an apartheid state since its inception as a colony to the UK.
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.
I’ve blocked that instance, but if they need more material to ban me I have it.
Who cares about a tankie instance?
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?
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
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”
Yet we still have default circumcisions in the US, no?
Not babies, embyros
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…
Thats why China made a Marxism anime
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.
Always funny how the right winger .wolders love to say shit about us, but are too scared to face the reality since they just defederated from us.
Thank you kind stranger. Now I get the .ml hate
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.
Ooof…
