• Endymion_Mallorn@kbin.melroy.org
    1792·
    2 months 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.

    • ricecake@sh.itjust.worksEnglish
      352·
      2 months 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.deEnglish
        13·
        2 months 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.

          • andros_rex@lemmy.worldEnglish
            7·
            2 months 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.

    • MrPistachios@lemmy.todayEnglish
      76·
      2 months 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

    • jsomae@lemmy.mlEnglish
      2·
      2 months 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.

      • Endymion_Mallorn@kbin.melroy.org
        2·
        2 months ago

        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.

  • Djinn_Indigo@lemm.eeEnglish
    13·
    2 months ago

    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@lemmy.mlEnglish
      2·
      2 months 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.

  • KayLeadfoot@fedia.io
    134·
    2 months ago

    I know him!!! He featured heavily in that one Walter Isaacson biography, The Codebreaker. About Dr. Doudna of course.

    Did he get his PHD? Well, good on him. I see China has a better anti-recidivism program than the USA has. Last I heard, he was doing hard time in Chinese prison for mad scientist stuff.

  • DaddleDew@lemmy.worldEnglish
    12·
    2 months ago

    Better build a research base on Mars where legal and ethical limitations don’t exist. And IDK, start researching teleportation or something.

    • fckreddit@lemmy.mlEnglish
      51·
      2 months ago

      Preferably just die because he opened a portal to hell or something.

  • SplashJackson@lemmy.caEnglish
    131·
    2 months ago

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

  • DrownedRats@lemmy.worldEnglish
    242·
    2 months 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.

    • jsomae@lemmy.mlEnglish
      21·
      2 months ago

      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.

      • DrownedRats@lemmy.worldEnglish
        3·
        2 months ago

        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?

      • nintendiator@feddit.clEnglish
        1·
        2 months ago

        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.

          • nintendiator@feddit.clEnglish
            1·
            2 months ago

            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.

              • nintendiator@feddit.clEnglish
                1·
                2 months ago

                If you were so sure you are special, and by some divine grace it happened that you were actually right, you are actually that special a driver, then if/when you still run someone over that goes into the field of something like superheroics logistics / insurances or “natural disaster” insurance I guess.

                The problem there becomes, to turn back the analogy to the real case being discussed, how do you compensate someone for being born.

  • Etterra@discuss.onlineEnglish
    1594·
    2 months ago

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

    • collinrs@lemmy.worldEnglish
      1016·
      2 months 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.

      • argarath@lemmy.worldEnglish
        33·
        2 months 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.

      • liv@lemmy.nzEnglish
        1·
        2 months ago

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

      • Retropunk64@lemm.eeEnglish
        4·
        2 months 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.

    • Melvin_Ferd@lemmy.worldEnglish
      12·
      2 months 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.

    • Tartas1995@discuss.tchncs.deEnglish
      10·
      2 months 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?

        • bane_killgrind@slrpnk.netEnglish
          101·
          2 months 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.worldEnglish
          241·
          2 months 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.

            • andros_rex@lemmy.worldEnglish
              4·
              2 months ago

              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.