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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.
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.
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.
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.
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
Here’s a scenario.
- Parent gets modded baby
- Parent is approached by a corporation to take over the baby for their exp instead
- Corporation is willing to pay parent for it
- Parent later goes and says no to Dr. He
- Parent takes baby to the corporation instead, which now gets to step ahead of Dr. He
- Dr. He gets no resultant data but is stuck with the costs of doing whatever he did.
I think you’re suffering from a form of justification bias. That sounds like something out of a dystopian sci fi.
Here’s the MUCH more realistic scenario that makes his contract unethical:
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Scientists try to introduce mutation into embryo
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Mother for whatever reason decides she doesn’t want to have the embryo implanted.
-
Who knows, maybe they can’t afford kids. Or her and the father are about to break up. Or she has found out she’s at risk of complications.
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Or maybe they overhear that the experiment didn’t go as planned and the mutation is useless or possibly harmful.
Anyway if they say no they’re suddenly in debt millions of yuan.
Implanting an embryo into a person under those conditions would be coercion.
Mother for whatever reason decides she doesn’t want to have the embryo implanted.
Who knows, maybe they can’t afford kids. Or her and the father are about to break up. Or she has found out she’s at risk of complications.
I think I am just suffering lack of information.
I assumed the contract is to be an after birth thing and not something that makes sure that the mother has to bear the child.
Besides, if the implantation is not done, hasn’t He not actually done the procedure and can choose another (although hard to do so in time)?
Does the embryo have some kind of compatibility with the mother, for implantation to be successful?In case He has the option to find another chap for the process in the above cases, I won’t consider the contract extending to this time.
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Ironic thing, we already tried this approach multiple times before, specially on war times. And each time humanity concluded that some knowledge has too high a price and we’re better off not finding out some things.
Knowledge for the sake of knowledge, especially with a heavy blood cost, isn’t the way to progress as a species.
And I should know, as a person greatly defined by curiosity about everything and more limited emotional capacity than other people due to mental limitations.
If you’re talking about unit 731 and the nazis then there was very little, if anything, scientifically valuable there.
They had terrible research methodology that rendered what data they gathered mostly useless, and even if it wasn’t, most of the information could have been surmised by other methods. Some of the things they did served no conceivable practical or scientific purpose whatsoever.
It was pretty much just sadism with a thin veneer of justification to buy them the small amount of legitimacy they needed to operate within their fascist governments.
From what I read, a tiny bit of radiation and frostbite research was useful. Huge cost, of course, but minimally useful.
Exactly. Society should never conflate knowledge driven by curiosity and knowledge as an excuse for sadism.
There’s a difference between experimenting by following rules, and then observing the results vs giving in to base forbidden desires just to see what happens or trying to bend reality to confirm one’s bias - I mean, just look at how people tried to justify until decades ago a black person’s ‘inferiority’ and their discrimination by coming up with all sorts of anatomical observations. That’s the danger.
Also the motivation of such research is usually not purely scientific, if at all, so the data gathered is often useless.
Also people like him tend to be shit at getting useful data.
Everyone keeps leaning on Unit 731 and the Nazis here.
What about Tuskegee and syphillis? What about the way that Huvasupai Indians blood was tested without their consent?
“Fun” fact - the chainsaw was developed to help with child birth. Lots of early US gynecology research was done on enslaved women without pain control.
You can critique him all you want but how in the world did you come to the conclusion that his and goals were knowledge for knowledge’s sake?
I have problems with the doctors’ way of doing so, but their act was to allow an informed consenting(? it’s complicated) couple with an HIV-positive parent to have a child resistant to HIV. It was problematic, yes, but very different to the war crime experiments, much of which was simply about morbid curiosity and torture.
Yeah, comparing this to like the experiments of Mengele or Unit 731 definitely would be bordering on Holocaust denial/downplaying by comparing something like this, problematic issues withstanding, with those horrific abuses of humanity.
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.
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.
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
“If everything else fails, pull the racism card”
Source: the ml handbook
Yeah I do assume racists are racist when they pull random claims that non-white countries are ontologicaly evil with no proof, it shows the racists bias.
Or Russia! Remember that saying anything bad about Russia is also racist.
Or maybe it’s not the color of the skin what the issue… But that would mean independent thinking, which is frowned upon by tankies. I’m assuming you’re a tankie because you say things a tankie would say. It’s generally a very weak way to make assumptions, but given it’s exactly what you’re doing, seems only fair.
It was a joke… You don’t get to jail for experimenting with slaves in China.
Be careful, you might get banned from lemmy dot ml for hatespeech against dictatorships.
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.
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.
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.
Did not have baby zombie apocalypse on my Bingo card, but there ya go
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
“Illegal experiments on babies” is a user-provided note, and is not really an accurate label. For one thing, no experiments were done on babies.
Another thing – unlike “murder,” there is a gradient of what constitutes an “illegal experiment.” The phrase “illegal experiments on babies” sounds terrible, but if you imagine a volume dial on this crime, one could lower it until one finds the minimum violation possible which could technically be described as an “illegal experiment” – for instance, flicking a baby with your index finger to check its reflexes. So it should not be of any surprise that there are such things as “illegal experiments” which are so mild as to warrant just 3 years in prison.
The report confirmed that He had recruited eight couples to participate in his experiment, resulting in two pregnancies, one of which gave birth to the gene- edited twin girls in November 2018. The babies are now under medical supervision. The report further said He had made forged ethical review papers in order to enlist volunteers for the procedure, and had raised his Own funds deliberately evading oversight, and organized a team that included some overseas members to carry out the illegal project.
I guess it’s right that there was no experiment in babies, the babies were the experiments themselves.
It would have taken much less time to read about the topic than to make that nonsense response.
What do you mean? What did I get wrong?
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.
And China executed a shitload of people for political dissent…
Ethics mean we don’t know what the average human male erect penis size is.
No, really. The ethics of the studies say that a researcher can’t be in the presence of a sexually aroused erect penis. Having the testee measure their own penis is prone to error. There are ways to induce an erection with an injection, so they use that.
Is the size of an induced erection the same as a sexually aroused erection? Probably in the same ballpark, but we don’t really know.
Source: Dr Nicole Prause, neurologist specializing in sexuality, on Holly Randall’s podcast.
Having the testee measure their own penis is prone to error.
To be fair, testicles aren’t designed for that task.
A quick trip on Google scholar turns up a lot of studies on the size of male erections.
It is acknowledged that some of the volunteers across different studies may have taken part in a study because they were more confident with their penis size than the general male population.
Ha, poisoned data tho
Of course it was biased, those numbers are huge on there, it was men confident in their size skewing the data, at least that’s what I will tell myself
Sure, they exist, but they have the flaws outlined above.
The study I linked seems to include both self stimulated erections and erections due to injection. They also limit themselves to clinical measurements. They mention self measured results but point out that they are unreliable, as you said. They do point out however that there might be a difference between self stimulation and an erection with a partner.
But all in all, there isn’t a barrier because of the ethics involved in touching a penis and masturbation.
So wait
Who is telling the truth. My ex said it was too big. The bell curves I’ve found have said “uh what lmfao no way are you that big” but every self reported study says I’m small
How the fuck am I going to ever find a toilet that is comfortable to use in my own home
How the fuck am I going to ever find a toilet that is comfortable to use in my own home
That was an odd segue
It’s a problem for men with penises that are long when flaccid. Their penises can touch the inside of the bowl when they’re seated unless they hold their penis up.
Never taken an unexpected dip I see?
Switch from a siphonic toilet bowl to a wash down bowl. You’ll get more skid marks, but less dips, splashes and clogging.
aren’t there literally studies about the size that only accepted measurements by medical professionals?
Yes, and they have the problems outlined above.
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! 😱
Why is that surprising?
Not that I support it in any way of course, but he’s not wrong. There’s probably a lot of medical knowledge to be gained by seeing how the babies he experimented on develop in the future. It’s just that the ends don’t justify the means.
It depends on the specifics of the experiment. Throughout the 20th century, the people most keen on unethical medical experiments seemed the least able to design useful experiments. Sometimes people claim that we learned lots from the horrific medical experiments taking place at Nazi concentration camps or Japanese facilities under Unit 731, but at best, it’s stuff like how long does it take a horribly malnourished person to die if their organs are removed without anaesthesia or how long does it take a horribly malnourished person who’s been beaten for weeks to freeze to death, which aren’t much use.
I’m pretty sure that 80% if what we learned from the Nazi/Imperial Japan super unethical experiments was “what can a psychotic doctor justify in order to have an excuse to torture people to death.”
Maybe 20% was arguably useful, and most of that could have been researched ethically with other methods.
“People die if you kill them”
“we weren’t sure, but now we know for a fact”
This one was making a child with an HIV-positive parent resistant to HIV, so it’s a bit better than 731 torture.
It’s crazy that people are trying to make this comparison. They are worlds apart. Notice how the post and most people talking about it aren’t discussing what he actually did? Because the situation gets a lot murkier when you learn the details.
“Experimenting on babies” - What?! That’s unethical and immoral! Must be junk science with no benefit!
“Made babies at risk of HIV immune to it” - Well… That’s good for the babies, but maybe he should have gone through proper channels.
Eh, usually less than you would expect. We’re really good at math and are quite capable of making synthetic experiments where we find people who either require the procedure, or where it’s been done incidentally and then inferring the results as though deliberate.
We can also develop a framework for showing benefit from the intervention, perform the intervention ethically, and then compare that to people who didn’t get the intervention after the fact. With proper math you can construct the same confidence as a proper study without denying treatment or intentionally inflicting harm.
It’s how we have evidence that tooth brushing is good for you. It would be unethical to do a study where we believe we’re intentionally inflicting permeant dental damage to people by telling them not to brush for an extended period, but we can find people who don’t and look at them.
The current context is modifying babies to make them HIV resistant. How would you model something similar without performing the experiment?
He inserted a naturally occuring genetic variation.
Off the top of my head and not an expert: screen a very large number of people for having that variation, and monitor those that do for HIV infection. That phase will take a while.
Identify a collection of people interested in in vitro fertilization, ideally with some coming from your previous sample group. Since the process produces more embryos than can be used, perform your procedure on a random selection of discards. Inspection and sequencing of the modified segment should be indistinguishable from unmodified embryos bearing then variation naturally.
Now that you have confidence that the variation provides protection, and that you can make the change, identify people where the intervention offers a better chance than not having it, even though it’s experimental. This would likely be HIV positive women desiring IVF who would not be able to tolerate standard HIV treatment during the pregnancy. Engineering the embryo to be resistant therefore becomes the best available way to prevent infection.
You can then look back and compare infection rates with children born to untreated parents and parents who underwent treatment.You also do a better job ensuring the parents know about the risks and what they entail. Informed consent and all that.
If this is really hard to do because you can’t find people that fit the criteria, maybe your research isn’t actually that critical. If HIV medication is essentially universally tolerated in pregnancy and is nearly 100% effective at preventing transmission to the infant without long-term side effects, then it might just be the case that while gene editing would work, it doesn’t provide enough of an advantage to be worth exploring for that disease.
Medical research is still medicine. You’re still obligated to do what’s best for the patient, even if it’s difficult or you’re curious about what would happen.
Holy shit, this guy managed to have 3 of the first 10 papers listed on google scholar about his shenanigans.
Protogen has entered the chat
That’s actually pretty the whole premise of The Vital Abyss short story. Cortazar explains how he signed up with Protogen and how glad he was to get the nerve staple that removed all empathy from him. Ot, and all the other short stories are worth reading if you liked The Expanse
Made the Eros comparison just a few comments above!
They were dead anyways (thanks to Protogen releasing the protomolecule), the real tragedy would be to let their deaths be in vain…
“You’re not that guy”
…
“I am that guy 💥”
Do you want BioShock? Cuz this is how you get BioShock
“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.
Removed by mod
Then why isn’t the speed limit 0 everywhere? Speed limits are a balance between two opposing concerns.
In this case, ethics is holding back life-saving treatments. Ethics boards should approve gene editing more than they currently do.
I’m not arguing that ethics boards cant be overly stringent. But there’s a reason we have them in the first place and that still doesn’t make it alright to start conducting unauthorised experiments on people.
Even if it turned out OK in this case, and we still can’t say that it definitely did, the next person who trys to pull a stunt like this might not be so lucky, qualified, or knowledgable.
What’s the alternative here?
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.
But this is what’s wrong with the world. They’d rather make a life, genetically modify it, which by the way will serve the rich, then adopt? OK I guess…
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.
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.
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.
Better build a research base on Mars where legal and ethical limitations don’t exist. And IDK, start researching teleportation or something.
Preferably just die because he opened a portal to hell or something.
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.
