• barnaclebutt@lemmy.world
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    55 minutes ago

    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.

  • stopforgettingit@lemmy.dbzer0.com
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    3 hours ago

    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.

    • JacksonLamb@lemmy.world
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      29 minutes ago

      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.

    • Nangijala@feddit.dk
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      2 hours ago

      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.

    • CrackedLinuxISO@lemmy.dbzer0.com
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      5 hours ago

      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.

      • AltheaHunter@lemmy.blahaj.zone
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        5 hours ago

        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.

      • stopforgettingit@lemmy.dbzer0.com
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        4 hours ago

        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.

        • Robust Mirror@aussie.zone
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          3 hours ago

          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.

          • stopforgettingit@lemmy.dbzer0.com
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            2 hours ago

            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.

      • arrow74@lemm.ee
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        4 hours ago

        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.

  • DrownedRats@lemmy.world
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    10 hours ago

    “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.

  • 小莱卡@lemmygrad.ml
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    9 hours ago

    I think he does it ironically tbh, his posts are all over the place, from making fun of Europe for regulating everything to then saying that gene editing should be regulated by international laws to then saying ethics are holding back humanity, then just saying he loves austin texas, then stating that he will not develop bio weapons lmao.

    Stanford cup and CPC flag, he does have a sense of humour tbh.

  • Etterra@discuss.online
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    15 hours ago

    Ethics are supposed to throttle human activity. That’s their fucking job. That guy is a goddamn sociopath.

    • melpomenesclevage@lemmy.dbzer0.com
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      6 hours ago

      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.

    • Tartas1995@discuss.tchncs.de
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      10 hours ago

      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?

    • Melvin_Ferd@lemmy.world
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      4 hours ago

      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.

      • easily3667@lemmus.org
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        10 hours ago

        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.

        • bane_killgrind@slrpnk.net
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          6 hours ago

          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.

        • andros_rex@lemmy.world
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          9 hours ago

          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.

    • collinrs@lemmy.world
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      11 hours ago

      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.

      • liv@lemmy.nz
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        37 minutes ago

        He didn’t give them that though. He just claimed he did.

      • Retropunk64@lemm.ee
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        4 hours ago

        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.

      • argarath@lemmy.world
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        9 hours ago

        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.

  • SplashJackson@lemmy.ca
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    11 hours ago

    Wasn’t he the guy who was trying to find a way for HIV-positive couples to have HIV-negative babies?

  • Railcar8095@lemm.ee
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    16 hours ago

    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.

    • Jhex@lemmy.world
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      12 hours ago

      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

    • Revan343@lemmy.ca
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      10 hours ago

      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

    • comfy@lemmy.ml
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      15 hours ago

      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.

      • ghost_of_faso3@lemmygrad.ml
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        13 hours ago

        Oh shit someone tell the fascist scum liberal toads that its actually blue on blue, this guy was working for a honky kong universty!!!

      • alcoholicorn@lemmy.ml
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        13 hours ago

        Lemmitors downvoting you because actually learning about the case conflicts with their “cHiNa BaD” circlejerk.

      • Railcar8095@lemm.ee
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        6 hours ago

        It was a joke… You don’t get to jail for experimenting with slaves in China.

      • drislands@lemmy.world
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        12 hours ago

        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.

    • ZILtoid1991@lemmy.world
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      15 hours ago

      Be careful, you might get banned from lemmy dot ml for hatespeech against dictatorships.

      • ghost_of_faso3@lemmygrad.ml
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        13 hours ago

        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.

      • Railcar8095@lemm.ee
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        6 hours ago

        I’ve blocked that instance, but if they need more material to ban me I have it.

        • ZILtoid1991@lemmy.world
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          14 hours ago

          I wrote that on my phone’s touch keyboard, and I didn’t want to use \. to escape the dot character to avoid autohotlinking.

        • SuperNovaStar@lemmy.blahaj.zone
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          14 hours ago

          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.

          • alcoholicorn@lemmy.ml
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            13 hours ago

            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.

          • LeninsOvaries@lemmy.cafe
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            14 hours ago

            I read it in Das Kapital, by Joseph Stalin. Don’t you liberal anarkiddies read theory?

    • nope@jlai.lu
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      11 hours ago

      And in what context medical experiments should be allowed on babies ?

      • Railcar8095@lemm.ee
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        6 hours ago

        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”

    • OBJECTION!@lemmy.ml
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      16 hours ago

      Dang, you can really just pull shit straight out of your ass and people will believe it.

        • OBJECTION!@lemmy.ml
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          8 hours ago

          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.

          • ZILtoid1991@lemmy.world
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            14 hours ago

            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.

            • 3x7x37@lemmy.dbzer0.com
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              14 hours ago

              Supposed to mean “machine-learning”

              No, it officially stands for Mali. Why do you think it stands for machine leaning?

            • camr_on@lemmy.world
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              14 hours ago

              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.

          • NIB@lemmy.world
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            14 hours ago

            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.

            • Kras Mazov@lemmygrad.ml
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              5 hours ago

              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.

  • Endymion_Mallorn@kbin.melroy.org
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    23 hours ago

    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.

    • NeatoBuilds@lemmy.today
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      20 hours ago

      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

    • ricecake@sh.itjust.works
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      20 hours ago

      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.

      • KubeRoot@discuss.tchncs.de
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        15 hours ago

        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.

        • Nursery2787@lemmy.ml
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          10 hours ago

          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.

          • andros_rex@lemmy.world
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            9 hours ago

            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.

  • Hikuro-93@lemmy.ca
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    23 hours ago

    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.

    • drosophila@lemmy.blahaj.zone
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      15 hours ago

      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.

      • guldukat@lemmy.world
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        13 hours ago

        From what I read, a tiny bit of radiation and frostbite research was useful. Huge cost, of course, but minimally useful.

      • Hikuro-93@lemmy.ca
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        12 hours ago

        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.

    • angrystego@lemmy.world
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      17 hours ago

      Also the motivation of such research is usually not purely scientific, if at all, so the data gathered is often useless.

    • Dengalicious@lemmygrad.ml
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      20 hours ago

      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?

      • comfy@lemmy.ml
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        12 hours ago

        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.

        • Dengalicious@lemmygrad.ml
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          9 hours ago

          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.

  • frezik@midwest.social
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    23 hours ago

    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.

    • Grimy@lemmy.world
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      20 hours ago

      A quick trip on Google scholar turns up a lot of studies on the size of male erections.

      https://static1.squarespace.com/static/553598c1e4b0a7f854584291/t/55ee4a5ee4b025d99f73150e/1441679966732/Penis+Size+Study+-+Veale+et+al+2015+BJUI.pdf

      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

        • Grimy@lemmy.world
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          5 hours ago

          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.

      • kameecoding@lemmy.world
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        15 hours ago

        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

    • Honytawk@lemmy.zip
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      22 hours ago

      a researcher can’t be in the presence of a sexually aroused erect penis

      Is this some puritan rule? Plenty don’t care to flap their erect penis in the faces of some researchers if they asked nicely. What got ethics to do with it when there is consent?

      • Umbrias@beehaw.org
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        8 hours ago

        It’s not a strict rule, sex science is a thing that can be done with ethical review same as other medical research. the commenter im not sure is giving an accurate picture of this topic.

    • peoplebeproblems@midwest.social
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      22 hours ago

      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

      • psmgx@lemmy.world
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        22 hours ago

        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

      • ShinkanTrain@lemmy.ml
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        20 hours ago

        Switch from a siphonic toilet bowl to a wash down bowl. You’ll get more skid marks, but less dips, splashes and clogging.