• 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.

      • 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.

    • 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.

  • 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

    • 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.

    •  jsomae   ( @jsomae@lemmy.ml ) 
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      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.

        •  jsomae   ( @jsomae@lemmy.ml ) 
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          22 days ago

          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.

      • Unfortunately, research on prisoners and concentration camp victims did produce new valuable medical information.

        Most of the field of gynecology is based on experiments done on women slaves, where the “doctors” decided their victims conveniently didn’t have nerve endings.

        Ethics throttles research.

        But I am aghast at the thought that we should permit unethical research in the pursuit of, at the end of the day, greed.

        And I say this as a professional scientist.

        I can’t believe this conversation is even necessary.

      • This is obvious though — currently, you might test a drug on mice, then on primates, and finally on humans (as an example). It would be faster to skip the early bits and go straight to human testing.

        …but that is very, very, very wrong. Science of course doesn’t care about right and wrong, nor does it care if you “believe” in it, which is the beautiful thing about science — so a scientifically sound experiment is a scientifically sound experiment regardless of ethical considerations. (Which does not mean we should be doing it of course!)

        Now, taking a step back, maybe you’re right that, in the long run, throwing ethics out the window would actually slow things down, as it would (rightfully) cause backlash. But that’s getting into a whole “sociology of science” discussion.

      •  jsomae   ( @jsomae@lemmy.ml ) 
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        Many kinds of early-in-life medical interventions can have permanent negative effects if they go bad, but nonetheless our ethical standards don’t preclude them. This is a field where the ethical standards are suffocatingly high without good reason. As an aside, we should consider euthanizing newborns who suffer debilitatingly severe negative side effects due to any kind of failed medical intervention (with parental consent, of course). This will directly improve quality-of-life standards and also allow us to lower ethical standards on experimental treatments too.

      •  easily3667   ( @easily3667@lemmus.org ) 
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        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.

  • 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.

    •  jsomae   ( @jsomae@lemmy.ml ) 
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      22 days ago

      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.

    •  jsomae   ( @jsomae@lemmy.ml ) 
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      “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.

    • 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

  • 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.

    •  jsomae   ( @jsomae@lemmy.ml ) 
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      12 days ago

      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.

  •  Hikuro-93   ( @hikuro93@lemmy.ca ) 
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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.

      •  Hikuro-93   ( @hikuro93@lemmy.ca ) 
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        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.

  • 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.