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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
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.
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.
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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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
Babies are conceived without their consent.
In case of a C-section, they are born without their consent (implying that they would rather grow up inside the womb :P (look, idk what babies think when they don’t come out, but we sure aren’t asking them whether they’d rather stay in there))
I would rather be asking if Dr. He had the parent’s consent before modding the foetus.
Obviously the notable, unusual, unethical thing here is the non-consentual gene editing, not the mere occurence of birth
I am trying sooo hard to come up with a point without bringing up the chemical-transification of children, without their parent’s approval, which has been following them being mislead by pro-trans (as in “go become trans because all your problems are your gender”) evangelists.
My apologies, I didn’t realize I was speaking with a lunatic.
Fair enough.
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
The good old adage: “you don’t have a gambling addiction as long as you keep winning”
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.
it aint luck. he did it right
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.
We can still see the initial intentions as being morally good
Ah, yes… the pavement of the road to Hell.
Good thing the CPC put a roadblock on that path and diverted us back into the morally grey middle road then.
This is a universal criticism of doing anything which is intended to be morally good.
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.
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.”
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.
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.
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
Sure lets just torture all the poor people so a handfull of rich fucks can afford stem-cell-zinfandel, never mind that 100,000 people were tortured and killed, at least we discovered a new anti-wrinkle cream. If you don’t think that’s what it always is in practice you’re delusional. Shit like that is just as likely to cause mass disease or our extinction than it is to discover something useful, perhaps even more so
Who are you even responding to?
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 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.
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?
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.
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.
He didn’t give them that though. He just claimed he did.
I’m just here for the comments
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.
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
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.
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.
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
Still wouldn’t help people with two braincells
And life is not something people have a right to create
Yes they do?
Having children is literally the one thing most of us are equipped to do, and those who cant can adopt; the children of the future are our responsibility to raise. You seem to have a pretty self centered and unrealistic idea around child rearing; people raise children through invasions, unless you want to stop people from fucking somehow you’re never going to stop reproduction.
Most of us are equipped for rape and murder, but we don’t have a right to it.
Thats why we have laws against rape and murder but not against having kids, because that would be eugenics.
“because that would be eugenics” is not an explanation. You’re just asserting that eugenics is bad, which is begging the question – this is a post about the ethics of eugenics. You can’t just come in and say “eugenics is bad because it’s eugenics.”
Anyway, I don’t think anyone is calling China’s former One Child Policy eugenics.
Thats because the one child policy was coerced by the IVF in order for China to survive during a period of economic isolation, more so the one child policy only applied to han Chinese, and many still choose to have children, it wasn’t a ban on having extra children, they where just heavily disincentivized and given access too birth control.
Literally banning who can have sex would be eugenics yes
I don’t really see a strong difference ultimately between “heavily disincentivizing” and banning. Heavy disincentivization basically means the rule only applies to poor people. If it’s eugenics, it’s probably still eugenics even when limited to the poor, since most eugenicists would broadly consider wealthy people to likely have good genes.
Anyway, there are times when we should attempt to lower birth rates as a society. In my country it’s not needed, since the birth rate is so low.
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…
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.
So if we put these extra pair of legs on babies then they can stand in more extreme angles making them better at construction at a time when there is a housing shortage
I am convinced, I vote to allow it.
I am in agreement, but a point of contention: only ONE extra pair of legs? Or is this negotiable?
Spiderbaby, spiderbaby, does whatever a spider can, spiderbaby, spiderbaby, it’s mother refused to nurse it!
Splice with spider genes? I’ll allow that, too.
On a completely unrelated note I just bought a new Porche and condo.
Biblically accurate infant.
If we’re going along with all you liberal scientists, it seems only fair that the child should be extra circumcised to keep things fair?
For acceptance in the US we will also add more hands so the baby can hold an AR 15 while doing construction work.
This argument applies just as well to libertarians who oppose “regulation.” There are some truly insane libertarians who want all regulation gone, but a lot of people who say they are opposed to “regulation” really mean that they want to add more barriers to adding regulation, and repeal some known-to-be-problematic regulations. I’m sure that when this person says “ethics” is holding back scientific progress, he means the latter. To assert he just means getting rid of “ethics” entirely is absurd. There is only so much detail you can put in a tweet.
I mean, he was imprisoned for genetic experimentation on babies without informing the parents or basically anyone else. So… I don’t think he means that in a specific way. He wants to do whatever he feels like without oversight.
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.
How exactly are you going to attempt to self genetically modify embryos?
Real scientists find a way…
Best I can do is generalization
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.
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.
Lemmitors downvoting you because actually learning about the case conflicts with their “cHiNa BaD” circlejerk.
Oh shit someone tell the
fascist scumliberal toads that its actually blue on blue, this guy was working for a honky kong universty!!!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
“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.
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.
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?
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
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?
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.deleted by creator
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
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.
my type of guy. And he still does his research to help people even with the public treating him like it does.
HJK: Many years ago, my mother was diagnosed with Alzheimer’s disease, and unfortunately, there are no medicines available to cure it. There are many more people who are suffering from diseases that do not have a cure, so I want to do something to change it.
CT: Can you tell us about the research that you led around Lulu and Nana that was publicized in 2018? It’s been almost six years since this research was shared with the world, how are they doing now?
HJK: Lulu and Nana’s parents are HIV infected patients and they want to have a baby, a healthy baby, a baby that is not worried about HIV any more. So we took the sperm and egg from their parents during the IVF procedure, using a tiny syringe needle to inject the gene editing formula to the fertilized egg, to change one gene, and closed the door that HIV virus used to enter human cell. We then transfer the fertilized egg from the peri dish back to their mother’s uterus, and after several months, Lulu and Nana were born. Lulu and Nana are five years old now and they are healthy and happy just like any other kids in the kindergarten. I am glad that I have helped two families using my science knowledge.
CT: How did you balance the need for progressive gene editing research with ethics and general public perception?
HJK: Science research must be transparent and open, and should be approved by an ethics committee composed of medical doctors, lawyers, patient representatives, and local resident representatives.
CT: Last month, the FDA approved a new CRISPR gene editing treatment, Casgevy, by Vertex Pharmaceuticals and CRISPR Therapeutics, for sickle cell disease. To give context to the audience, sickle-cell is caused by inheriting two bad copies of one of the genes that make hemoglobin. On top of severe symptoms, life expectancy with the disease is just 53 years and it affects 1 in 4,000 people in the US. However, sources are reporting the gene editing treatment price will be $2-3m USD per patient. First, can you tell us your thoughts on this FDA approval milestone and what it means for gene-editing based medicines? And second, do you see a future where the prices for gene therapies will be lowered, making them more accessible to patients?
HJK: The approval of Casgevy is a great success for science, but not for patients. It cost more than 2 million dollars, and few patients will be able to afford it. This drug also has significant side effects including infertility.
CT: Gene therapies aside, what are your thoughts on the current state of affairs of genomics-based reproductive technologies, such as embryo gene sequencing? How do you foresee reproductive technologies being transformed by genomics in the future?
HJK: Embryo gene sequencing such as PGT-P is not ready for clinic application. Many diseases such as diabetes are influenced by hundreds of genes, and we do not have solid science to determine the risk of diabetes by genomic information.
CT:I see. So you think it’s still a little bit early for clinic use.
HJK: Yes.
CT: What are your aspirations for the next chapter of your scientific career?
HJK: I believe embryo gene editing can help us to defeat many diseases and improve human health. I have proposed a research project, using embryo gene editing to help prevent Alzheimer’s disease, so our next generation will no longer worry about Alzheimer’s. I am going to do it slowly and cautiously, make sure we comply with all local laws and the international ethics guidelines. We are going to do it in a mouse first and we have no plan to move on to human trials. At every step, we will disclose our progress in full to the whole world and post it in my personal social account on Twitter.
CT: Why focus on Alzheimer’s?
HJK: As I said, my mother has Alzheimer’s. So personally, I also have some high risk for Alzheimer’s when I get old, and maybe my daughters are at risk of having it in the future too, and Alzheimer’s has no cure. If this project is successful, perhaps Alzheimer’s disease can be completely eliminated from future generations.
CT: Wow. That would be very powerful if it’s successful – to be able to get rid of a disease in future generations. I have another question. If you could go back in time to 2018, would you have done anything differently?
HJK: I did it too quickly. One thing I did not finish is the health insurance. In the informed consent document we signed with the parents of Lulu and Nana, we agreed to buy additional health insurance for Lulu and Nana. However, after the birth of Lulu and Nana, due to too much negative media attention, no health insurance company wanted to get involved. Now, as an alternative, I am planning to set up a charity foundation in Singapore to raise money to cover any future medical expenses of Lulu and Nana.
CT: Let me know if you have a link to donations for the charity. I’d be happy to share it with interested individuals.
HJK: Thank you. That’d be great.
CT: What are some valuable lessons that you learned over the last few years that you can share with the viewers?
HJK: In the past few years, my wife and daughters were living in a hard time. In the future, I won’t let my family get into the same situation again.
CT: I’m sorry to hear that about your family. Thank you so much for answering all of my questions, Dr. He.
HJK: Thank you.
I applaud how nearly every time he opens his mouth it is something caring about the wellbeing of others and his goals are noble. Where I am critical of He is that he seems to be such an idealist that when he cures these big diseases he assumes the next step is to roll out the cure to all people of the world. I love how he is against the ‘charge 2million per cure’ mentality and thinks cures should be available to all, but imo the risk level of doing a genetic change to the entire population is unacceptable. A single wrong unforseen thing and its like zombie apocalypse. I see from his personality why he rushed ahead and did the Lulu Nana antiHIV thing. Personally I think he should be spearheading embryo science and doing his stuff since his heart is good, but watched over so he doesnt go too far. Let him go farther than anyone else, beyond lulu nana, but watch him carefully so no zombie apocalypse.
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
Why is that surprising?
Dw, he’s out now and back at it! 😱
“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.
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?
yeah, but, consider: I really want to get to point B. like, so badly. and I’m pretty sure I’m a good driver.
Everyone wants to get to their point B, ad they are all statistically pretty sure you are not as good a driver as you think you are.
okay but what if I’m, like, really sure I’m good? or I just want it so so so so so so bad?
you want it so so so so so bad that you don’t care if other people die in the process?
We have terms for when one goes on with that, such as “crime”, and it’s penalized.
okay but no, because: what if im special so it’s fine?
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
you have my upvote
and my axe
Mengele vibes right there.
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.
That borders on Holocaust denial to even try and compare the two
Plesse elaborate.
