Watch Star Trek
I think the only thing that deserves clarification is if he broke ethics to do biomedical research. It sure seems he did. There’s ethics approval in any study for a good reason.
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 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.
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.
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.
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.
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.
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.
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?
Ooof…
“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.
Average CCP party member
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
Be careful, you might get banned from lemmy dot ml for hatespeech against dictatorships.
It’s literal misinformation, so it probably should be removed, yes.
I’ve blocked that instance, but if they need more material to ban me I have it.
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?
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.
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
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.
It was a joke… You don’t get to jail for experimenting with slaves in China.
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.
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.
Dang, you can really just pull shit straight out of your ass and people will believe it.
lemmy dot ml
Yes, .ml users do indeed tend to be more concerned with fact-checking and saying things that are actually true as compared to flat.world, thank you for pointing that out.
Asking out of curiosity what does that “ml” mean?
Supposed to mean
“machine-learning”Mali, but the developers of Lemmy (whose instance it is) are using it to mean “Marxism-Leninism”, which is a misnomer invented by Stalin. While ml has some non-tankie leftists, that instance is infamous because of them.Supposed to mean “machine-learning”
No, it officially stands for Mali. Why do you think it stands for machine leaning?
Great question! The truth is that the CCP and Russian Federation are basically spiritual successors of Marx himself. Here’s a list of bullet points explaining…
It’s actually the TLD for Mali, not explicitly related to machine learning, or leftism. That’s mainly what it’s used for though, outside of Mali.
Marxism leninism, it’s a political ideology, subset of communism. Basically the communists that love USSR, China, Cuba, etc. They love running propaganda about how these authoritarian governments did nothing wrong and how all criticism of them is just negative propaganda by the West.
Thank you kind stranger. Now I get the .ml hate
And China executed a shitload of people for political dissent…
And in what context medical experiments should be allowed on babies ?
A lot of contexts? Like the development depending on formula vs mother’s milk? Experimenting doesn’t need to mean vivisection or injecting unregulated drugs, but if you need to do the experiments illegally, I’m not sure it was something “safe”
Not babies, embyros
Wasn’t he the guy who was trying to find a way for HIV-positive couples to have HIV-negative babies?
Antiretroviral therapy for pregnant women already is a safe and effective way to avoid HIV transmission to the baby. It’s part of standard treatment guidelines https://www.sciencedirect.com/science/article/abs/pii/S1701216324003748
So the guy has genetically engineered babies as a potentially risky and certainlycontroversial solution for a problem that already has a safe and non-controversia solution.
wait he’s not a fucking parody account?? i thought he was like. larping as an umbrella corp researcher
Nah, I’m pretty sure that’s the dude that used crispr on some babies years ago in an attempt to make them immune to HIV or something.
I was very surprised to hear that China arrested him for it in the first place
Dw, he’s out now and back at it! 😱
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.
Best I can do is generalization
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.
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.
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.
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 people like him tend to be shit at getting useful data.
Also the motivation of such research is usually not purely scientific, if at all, so the data gathered is often useless.
Holy shit, this guy managed to have 3 of the first 10 papers listed on google scholar about his shenanigans.
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.
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
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.
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
Having the testee measure their own penis is prone to error.
To be fair, testicles aren’t designed for that task.
Not all erections are sexual-- can’t they just measure the non sexy ones?
deleted by creator
if only we had some sort of medication specifically designed to cause an erection
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.
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.
Do you want BioShock? Cuz this is how you get BioShock
Or Vault 4.
Eros in the Expanse.
That shit still makes me angry and it’s fiction
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.
This one was making a child with an HIV-positive parent resistant to HIV, so it’s a bit better than 731 torture.
“People die if you kill them”
“we weren’t sure, but now we know for a fact”
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.
The potential value to the Americans of Japanese-provided data, encompassing human research subjects, delivery system theories, and successful field trials, was immense. However, historian Sheldon H. Harris concluded that the Japanese data failed to meet American standards, suggesting instead that the findings from the unit were of minor importance at best. Harris characterized the research results from the Japanese camp as disappointing, concurring with the assessment of Murray Sanders, who characterized the experiments as “crude” and “ineffective.”
https://en.m.wikipedia.org/wiki/Unit_731
To back up your point that the research gained by unit 731 was useless.
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.
