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