Sounds like pearl-clutching to me. The outrage is not over the ethics of what he did, which is a scant drop in the bucket compared to real-world concerns (e.g. Ughyrs). To claim the parental waiver being insufficient was the heart of the issue is disingenuous.
Still, nice to remind us the technology is here, would love to hear how the kid is doing.
> a scant drop in the bucket compared to real-world concerns
Objectifying human beings in such a radical way and arrogantly putting the human germline at risk isn't a real-world concern? You have a very strange grasp of real-world concerns.
The ethical concerns were not just the parental waiver; but rather a number of issues. Such as implicit coercion (i.e. forcing subjects to pay exorbitant fines for backing out of the research; seeking out patients who may have no other options for IVF than this trial), inadequate communication of the risks that Gene Editing may have, and improper communication of the actual predicted effect of the trial (i.e. "your baby will be immune to HIV", rather than having a potential increased resistance to HIV).
As for the ethics of gene editing itself, the risks of gene editing are poorly understood. Not in that we are ignorant of the risks, but rather that science does not have an understanding of what techniques of gene editing are effective. What therapies are effective. What therapies have side-effects, the intensity and fatalities of these side-effects.
It would be one thing if the dimensions to these risks could be ballparked (e.g. with how HRT for gender affirmation, the risks of therapy vs abstinence are decently understood and communicated to a patient before starting due to the current understanding of the human endocrine system, and the track record of patients in the past). But since the current answers to these questions range from theoretical to mostly unknown, it is difficult to properly convey the risk. And caveat emptor is an irresponsible perspective to have of the risk, as one can not truly consent to a complete unknown; especially on the fetus and future person who has not yet been conceived.
That said, I am in the opinion that in the case a person who understands the risk of no therapy is severe (i.e. a patient with a severely debilitating or fatal disorder or disease) or has a proper understanding of the lack of knowledge and risk of therapy (e.g. a geneticist who reads journals about these particular issues) then one can adequately consent. But the parents in this experiment were neither.
Why should we allow self appointed "biomedical ethicists" to dictate what interventions we can use?
If someone says they should have the right to refuse a intervention, even if those "ethicists" otherwise approve of it, those ethicists give a smug nod of approval.
But if someone says they should have the right to use an intervention that those self appointed "ethicists" don't approve of, they will stamp their feet like toddlers and use every force of the state available to try and stop you.
If we allow parents to destroy embryos, why is it so controversial to allow them to modify them?
I dislike biomedical ethicists as much as most people here, but the anger here seems way out of proportion to their actual influence. They don't "dictate" anything; for the most part they're a bunch of noisy busybodies who make statements which get quoted by journalists but otherwise influence nothing. For the most part, market demand dictates interventions and bioethicists are essentially an irrelevant speed bump in this process. If you don't like them, you can just ignore them.
At least one point of those ethicists is to stop people who are naive from doing things with permanent consequences without first checking to see what those consequences would be.
I would say that in the area of reproductive science, you need to be exceptionally cautious about what's permitted as you are permanently modifying the germline, and society has very strong opinions about that. At this stage of the science you're more likely to cause harm than cure disease (except in a limited number of Mendelian diseases) while also baking that harm into a person's genome so that if they do survive, their children may also inherit that.
(I worked towards germline modification for several decades and concluded, well before He Jianku shat the bed, that we're not ready to do it, and there do need to be some guardrails preventing rogue scientists finding naive parents and getting them to sign inadequate consent forms).
No. There are lots of interventions available for possible gender dysphoria, and we have some nice options available like puberty blockers which are relatively safe.
If you change your mind, you can stop taking the puberty blockers. This is easy. You can make a reversible decision first and take whatever time you need to make the less reversible decisions later, or never.
That’s not how gene editing works—once you edit genes, it is hard to un-edit them.
> At least one point of those ethicists is to stop people who are naive from doing things with permanent consequences without first checking to see what those consequences would be.
Are the consequences really that permanent? It's pretty easy (in China) to monitor a handful of test subjects with heritable mutations and make sure they don't reproduce.
> At this stage of the science you're more likely to cause harm than cure disease
The potential upside of developing the science is huge, which is essentially what He is doing.
Forced sterilization only ceased in the United States in 1981, I'm sure the CCP has enough authoritarian power to forcibly sterilize genetically altered humans if they chose to do so.
I disagree with forced sterilization, just to be clear.
The article is FUD of course, but one thing worth noting is how it assumes a dropping pregnancies are because of forced sterilization and not just improving life quality - which is how it works everywhere else.
yeah, forced sterilization was common in China with their one-child policy that was only recently rescinded. There are plenty of stories and even documentaries on it.
Social workers are proposing forced sterilization for disabled people in parts of Western Europe. They have, of course, chosen to change the term to "forced anticonception".
Their case is that the attitude of one woman and one couple are causing too much stress, but really costs, on the social sector.
The woman is a prostitute that would allegedly offers sex with a visibly pregnant woman to increase her revenue. She has declared in court she doesn't mind if the child is taken away, in fact she wants that.
The other are a couple, both have Down syndrome. A very important detail is that Down syndrome, despite being a genetic problem, IS NOT hereditary, so their kids are healthy. Well, not 100%, but they certainly don't have Down syndrome. Now for this couple this is actually a problem, since these kids rapidly grow smarter than their parents ... at age 6-7-8, at which point they completely control their parents and the situation has "exploded" more than once, in fact more than a hundred times.
The couple have declared, in court, that "they will keep trying until they get to keep one".
This brings a number of weird consequences. For example, if you're worried about the future offspring then you should probably allow Down syndrome children to procreate, and in fact allow this at lower ages than 18 (because they have reduced lifespan, if you want them to have good odds of seeing their kids graduate, they must have kids before the age of 26 or so, and at 26 only half will be seeing their kids' high school graduation from their deathbed in a hospital, the other half will not see it).
On the other hand, if effects on offspring are your worry, you should probably forcibly abort babies in healthy women merely because they drink alcohol (or take drugs) during pregnancy. Fetal alcohol syndrome is real and does not just affect 1 generation. And it's the timing that matters, not so much the amount of alcohol. One sip in month 1-4 will be worse than a bigger amount after the 8th month. And whatever else you think about Cannabis, it is most certainly not safe during pregnancy, although the usual argument does apply: not nearly as bad as alcohol or drugs. But still very, very bad. Are you prepared to forcibly abort a baby because a mother had one sip of alcohol? Plus how would you ever know?
Fantastic article (fully accessible if you disable javascript) summarizing the political situation across .nl .be and even .fr a little bit:
Right now there are calls to forcibly abort and then forcibly sterilize women who get drunk during pregnancy.
The consequences of that are much worse, I might add, than the ones observed in this experiment. They are also permanent and will be passed on for generations. "Fetal alcohol syndrome".
In practice I think the chance of this actually happening to those women is, for the moment, zero. The above changes are effectively proposed as a way to save money for social services, and I do hope we, as a species, are above using forced sterilization to save a buck. Additionally I hope that any doctor that is asked to do this will refuse to do it.
Sorry Person275, you were approved as a test subject so you are bared from partaking in life.
But don't worry, they haven't had success passing laws legalizing your organ harvesting so you'll probably get to live a full life even after we're done testing you.
Yes, these consequences are permanent. What He did was permanently modify the cells that make up a tiny embryo. The germline cells- those that go on to make sperm and eggs in the developing person- are thus permanently modified, causing those changes to be passed on to the children.
Note that the specific change he made was intended to make these subjects more robust to resisting HIV infection. HIV infection in China is extremely rare, so it's an odd choice to pick- most doctors would instead focus on a well-understood, testable condition that is caused by a mendelian gene change. And, He's change likely didn't really have the outcome he predicted (common problem with genetics- the mutation you make almost never has the phenotype you desire). So there was a lack of need for this risky work and it also wasn't the right work. And, those changes will be passed on to the children of the affected children.
Now, I need to point out if your attitude is that these are "test subjects", and that you are going to keep them from reproducing, I can assure you that politicians, lawyers, doctors, scientists, and parents are going to stop talking to you and you're not going to be able to make a career out of this. This is an area that is closely tied to people's strongest beliefs and a single misstep (He made multiple missteps) can ensure you never work in this field again. m Learnign to speak the jargon so that people think you're a well intentioned doctor, not Doctor Frankenstein, is absolutely critical to being able to work in this field.
> It's pretty easy to monitor a handful of test subjects with heritable mutations and make sure they don't reproduce
So just to be clear, what we're talking about here is a protocol for performing eugenics on humans that were bred as part of an experiment, right? And ethically, that isn't a hang-up for you?
> what we're talking about here is a protocol for performing eugenics...
No. What we're talking about is if it's ethical to essentially create a race of monster-people by altering their DNA.
GP is saying, no way it's ethical, because if they have offspring it would be unethical. I'm saying maybe it's as ethical as current medical science, as long as you sterilize them.
You're the only one talking about eugenics.
> ethically that isn't a hang-up for you
Look, ethics is in its core, a public affair. Ethicists are primarily concerned whether general people will find XYZ acceptable, and why or why not.
For me personally, I'm not concerned with academics. I'm concerned with whether I feel it's right or wrong in my personal view. Is genetically altering humans ethical in my personal view? No.
> I'm saying maybe it's as ethical as current medical science, as long as you sterilize them
This is eugenics. You are the one that brought it up saying maybe it's relatively ethical. I'm rejecting that point and saying that it categorically is not ethical.
Your criticism is difficult to follow. There's a big difference between refusing an intervention and making use of one. I can licitly refuse treatment for a disease (the distinction between ordinary and extraordinary care), but I cannot licitly make use of immoral means to treat a disease.
> If we allow parents to destroy embryos, why is it so controversial to allow them to modify them?
Genetic modification as such, in the abstract, when therapeutic (fixing some genetic defect that causes a disease) may be licit in principle, but in practice,
1. our ignorance of genetics and non-trivial hereditary effects suggests we should be cautious, not only for the sake of the person whose genes are being edited, but because the change is not localized; that modification may not be transmitted to descendants
2. that embryos are subjects of modification introduces the standard moral problems of IVF (such as the objectification of human beings).
If modification is not therapeutic, then the usual moral problems surrounding designer babies apply in addition to those that apply to IVF. Killing embryonic human beings is intrinsically worse, though the secondary genetic risks are obviously absent.
To your last question, destroyed embryos can't suffer. Neither can genetically modified embryos that are destroyed or never get implanted. That's a pretty big difference!
How would you feel about performing untested gene therapies on healthy babies?
Do you think invasive therapies should be tested on healthy people who can't give consent? Because not doing that is sort of the base principle of modern research ethics.
(it might be one thing if this was an attempt to correct a genetic disease in an embryo, but it wasn't. It was on perfectly healthy embryos.)
Why should we allow self appointed "biomedical ethicists" to dictate what interventions we can use?
The medical industry seems to be largely divided into two camps: Camp A would happily sell allergy medication that triples your risk of diabetes, and Camp B would rather ten thousand terminal patients die in agony than kill a hundred of them with medication that cured the rest.
It's simply the momentum of the world we live in. It's perfectly legal for a 45 year old woman to get pregnant by an elderly man, then chainsmoke, take caffeine pills, and get shitfaced every day of her pregnancy and create a profoundly disadvantaged baby whose life will be full of hardship. They can even do it on purpose if they want. The powers-that-be don't give a damn about human happiness or suffering; they just want to make sure it isn't them who gets blamed.
I would suggest that 'the medical world' has fringes like that you describe but that the overwhelming, vast majority would take a significantly more nuanced view.
Honestly even that description is massively underselling how much more comprehensive the ethical views of 100% of the medical profession has here. The fringes like that are a tiny rounding error.
There probably exist examples of both the extremes you describe, but in such small numbers as to probably be irrelevant. On the whole the industry is conservative but changes fairly quickly.
> Why should we allow self appointed "biomedical ethicists" to dictate what interventions we can use?
…We don’t? Nobody does? Ethicists aren’t cops. Nobody gets arrested by the ethics police or thrown into ethics jail. They have opinions which are then either ignored or supported by somebody in a political or managerial position.
Why would we give cover to the people that actually make decisions about laws by pretending that some stuffy academics are omnipotent?
edit:
> If we allow parents to destroy embryos, why is it so controversial to allow them to modify them?
There’s an entire profession of people that get hired to debate questions like that, they’re called… ethicists.
In my view, the greatest indictment possible of many of these so-called "ethicists" is that even as they obsess over non-issues, they make not a word of protest against murdering babies.
Like people who don't understand that creating new genetic diseases might be worse than the ones that we already have? That they might cause even more complex issues that we can't foresee?
I don’t think this is an area in which pure first principles reasoning leads to good outcomes.
People are resistant to any sort of genetic restrictions on procreation for a couple reasons. First, the historical precedent of eugenics is so monstrously abusive that any step in that direction is viewed as dangerous. Second, how would you enforce a ban on procreation of people with genetic defects? Put the parents in jail? Forcefully abort the fetus? What if they don’t know about their genetic condition?
With genetic engineering, it’s a bit more clear. It’s much easier to just not start doing germline editing than to roll back the (unknown) consequences. The harm in not doing that is of course that some people get sick and die, but we can mitigate that with normal medicine. Also the particularities of the case matter here. The scientist chose a questionably effective approach to preventing HIV, a disease that has good treatments. Also he did a shit job informing the parents about the risks. Just bad choices all around.
Doing secret, shady genetic engineering on children is not the same thing as letting people with genetic conditions have children.
"we can mitigate that with normal medicine" -- for some illnesses. For many, it's an abbreviated lifetime, curtailed options, and some measure of ongoing suffering.
I don't really care about historical precedents. They can best be used as a measure of how not to do something, rather than a suggestion that it not be done at all.
Germline editing has the chance to relieve the suffering of real people. My entire life would likely to be quite different and much better, were it available back then. And yet a lot of people are just ... counted as part of the cost. Sorry you will die soon, and painfully, but at least we're not the Nazis.
I honestly don't think there's any way to stop people with bad genetics from having children than isn't an ethical nightmare, but I have always found it curious that the right to have children is always considered to be incomparably more important than preventing children from living a lifetime of suffering from debilitating illnesses or deformities.
In general, it seems as though our civilization views children as little more than property of their parents.
Putting people in jail is exactly what nearly every Western country in the world currently does to prevent the birth of genetically-defective children:
> Susan and Patrick were a young German couple in love. But, the German state never allowed Susan and Patrick to get married. Shockingly, Patrick was imprisoned for years because of his sexual relationship with Susan. Despite these obstacles, over the course of their relationship, Susan and Patrick had four children. Three of their children—Eric, Sarah, and Nancy—had severe problems: epilepsy, cognitive disabilities, and a congenital heart defect that required a transplant. The German state took away these children and placed them with foster families. Why did Germany do all these terrible things to Susan and Patrick?
> Eugenics. No, this story didn’t happen in Nazi Germany, it happened over the course of the last 20 years. But why haven’t you heard this story before? Because Patrick and Susan are siblings.
"Progress" is something that emerges only in hindsight, and is a value judgement that embeds a perspective from which it is made. What we have in the present are choices, and possibilities, and estimations of their outcomes.
You could oppose this because you think it's unlikely to work at all, and so is a dead end and wasted effort. You could oppose it because you think it will work, but that the changes are not likely to be improvements.
Is a procedure that creates a new form of smarter, healthier, longer lived human progress? For them it certainly is. If they deny me that technology for my descendants, is it progress for them?
It is simply not going to break down so easily into "this is progress and progress is good." It will have consequences, some of them negative, many of them unexpected. It will be better for some people some of the time and worse for some people some of the time, like almost all changes are. Resisting change simply to slow it down and better understand and predict the effects is a valid stance as well. None of these things are inherently unethical.
Would you volunteer your child for experimental gene therapy to make them HIV resistant, a therapy that has never been proven to work and has an unknown risk of permanent side effects?
No, because the chance of my child getting HIV is ridiculously low.
If you shift it to make my child really smart or really pretty, the answer might be different - especially if the parents aren’t especially smart or good looking themselves.
Imagine laws that sanction mandatory "improvements" on the future subjects. To me, in that context, this "it's grossly unethical to stand in the way if that progress" is where the true (as in hardcore) politics begins. (Compare to that, the current politics, which deals in easy amendable decisions, feels like child play.) Then there is this dynamic we can all see in software development, with haste of feature addition and not much regard for other lesser aspects (in the marketable sense), that may cross into gene development. There are many more interesting angles that will pop up if you give it a thought...
Rich people will find a way to use and experiment with this. They'll do it on a private island if they have to.
Then dictators will be tempted to "build" better workers and soldiers to get an edge on "those pesky democracies". If they succeed and become a threat to other nations, those nations will feel obligated to follow suit. The cat's out of the bag. (I'll pre-order a second wanker.)
If nukes don't get you, AI will. If AI doesn't get you, genetically modified monsters will. If genetically modified monsters[1] don't get you, then rioters paranoid over the first 3 will get you. Enjoy every day like it's your last.
[1] Could be altered humans, altered viruses, altered bears, altered mash-ups of all 3, etc.
Rich people (and not only them) already do much more than this. We all select the best mates we can get our hands on.
The gain from this kind of gene editing is likely much smaller than simply having a bunch of kids with a very genetically fit individual, and that is exactly what rich people do.
I also recall reading that some countries had strategies to foster interaction between very genetically fit individuals, beyond what would naturally happen by the general tendency of people to be attracted to others like them.
The funny thing is is that the AI singularity will likely come before the gene editing singularity, nullifying the advantage of being able to genetically engineer super smart babies on account of the de-facto dominant species on the planet becoming the collective cloud hyperintelligence
Unless we genetically engineer babies to interface with the collective cloud hyper intelligence better.
In all seriousness, all advancements in AI have been around benefiting the individuals utilizing it to better perform. Raising the baseline of what an individual can accomplish by themselves will likely increase what they can do with AI help too.
Why do the ethical concerns of gene editing matter, ethically, when there are billions of people starving?
Instead of spending time and money on ethics of a few, why not spend that time and money on helping others who actually would love to have the opportunity to make an ethical choice by surviving?
I mean seriously, bioethics is just a way for the upper-middle classes to feel better about their choices. But in real life the rich don't really care about that sort of shit; ethics really is a way for the rich to deny the almost rich the same privileges and opportunities.
This is inevitable, ethics won't stop most of the world from this research.
The advantages are too great for a nation state as well, from recent polls India is extremely pro designer babies.
Once one country opens this pandora's box, they all will.
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[ 3.9 ms ] story [ 96.7 ms ] threadStill, nice to remind us the technology is here, would love to hear how the kid is doing.
You mean advantages, surly?
/s
The article doesn’t claim that was the heart of the issue. It lists that as one of a multitude of issues.
Because someone is not outraged by what you are is not evidence of disingenuousness.
Objectifying human beings in such a radical way and arrogantly putting the human germline at risk isn't a real-world concern? You have a very strange grasp of real-world concerns.
As for the ethics of gene editing itself, the risks of gene editing are poorly understood. Not in that we are ignorant of the risks, but rather that science does not have an understanding of what techniques of gene editing are effective. What therapies are effective. What therapies have side-effects, the intensity and fatalities of these side-effects.
It would be one thing if the dimensions to these risks could be ballparked (e.g. with how HRT for gender affirmation, the risks of therapy vs abstinence are decently understood and communicated to a patient before starting due to the current understanding of the human endocrine system, and the track record of patients in the past). But since the current answers to these questions range from theoretical to mostly unknown, it is difficult to properly convey the risk. And caveat emptor is an irresponsible perspective to have of the risk, as one can not truly consent to a complete unknown; especially on the fetus and future person who has not yet been conceived.
That said, I am in the opinion that in the case a person who understands the risk of no therapy is severe (i.e. a patient with a severely debilitating or fatal disorder or disease) or has a proper understanding of the lack of knowledge and risk of therapy (e.g. a geneticist who reads journals about these particular issues) then one can adequately consent. But the parents in this experiment were neither.
If someone says they should have the right to refuse a intervention, even if those "ethicists" otherwise approve of it, those ethicists give a smug nod of approval.
But if someone says they should have the right to use an intervention that those self appointed "ethicists" don't approve of, they will stamp their feet like toddlers and use every force of the state available to try and stop you.
If we allow parents to destroy embryos, why is it so controversial to allow them to modify them?
I would say that in the area of reproductive science, you need to be exceptionally cautious about what's permitted as you are permanently modifying the germline, and society has very strong opinions about that. At this stage of the science you're more likely to cause harm than cure disease (except in a limited number of Mendelian diseases) while also baking that harm into a person's genome so that if they do survive, their children may also inherit that.
(I worked towards germline modification for several decades and concluded, well before He Jianku shat the bed, that we're not ready to do it, and there do need to be some guardrails preventing rogue scientists finding naive parents and getting them to sign inadequate consent forms).
If you change your mind, you can stop taking the puberty blockers. This is easy. You can make a reversible decision first and take whatever time you need to make the less reversible decisions later, or never.
That’s not how gene editing works—once you edit genes, it is hard to un-edit them.
Are the consequences really that permanent? It's pretty easy (in China) to monitor a handful of test subjects with heritable mutations and make sure they don't reproduce.
> At this stage of the science you're more likely to cause harm than cure disease
The potential upside of developing the science is huge, which is essentially what He is doing.
Forced sterilization only ceased in the United States in 1981, I'm sure the CCP has enough authoritarian power to forcibly sterilize genetically altered humans if they chose to do so.
I disagree with forced sterilization, just to be clear.
I’m not sure if there are any cases against Han Chinese people, probably the one child policy was effective enough.
https://en.m.wikipedia.org/wiki/Compulsory_sterilization
Their case is that the attitude of one woman and one couple are causing too much stress, but really costs, on the social sector.
The woman is a prostitute that would allegedly offers sex with a visibly pregnant woman to increase her revenue. She has declared in court she doesn't mind if the child is taken away, in fact she wants that.
The other are a couple, both have Down syndrome. A very important detail is that Down syndrome, despite being a genetic problem, IS NOT hereditary, so their kids are healthy. Well, not 100%, but they certainly don't have Down syndrome. Now for this couple this is actually a problem, since these kids rapidly grow smarter than their parents ... at age 6-7-8, at which point they completely control their parents and the situation has "exploded" more than once, in fact more than a hundred times.
The couple have declared, in court, that "they will keep trying until they get to keep one".
This brings a number of weird consequences. For example, if you're worried about the future offspring then you should probably allow Down syndrome children to procreate, and in fact allow this at lower ages than 18 (because they have reduced lifespan, if you want them to have good odds of seeing their kids graduate, they must have kids before the age of 26 or so, and at 26 only half will be seeing their kids' high school graduation from their deathbed in a hospital, the other half will not see it).
On the other hand, if effects on offspring are your worry, you should probably forcibly abort babies in healthy women merely because they drink alcohol (or take drugs) during pregnancy. Fetal alcohol syndrome is real and does not just affect 1 generation. And it's the timing that matters, not so much the amount of alcohol. One sip in month 1-4 will be worse than a bigger amount after the 8th month. And whatever else you think about Cannabis, it is most certainly not safe during pregnancy, although the usual argument does apply: not nearly as bad as alcohol or drugs. But still very, very bad. Are you prepared to forcibly abort a baby because a mother had one sip of alcohol? Plus how would you ever know?
Fantastic article (fully accessible if you disable javascript) summarizing the political situation across .nl .be and even .fr a little bit:
https://www.demorgen.be/nieuws/streng-verboden-een-kind-te-k...
The consequences of that are much worse, I might add, than the ones observed in this experiment. They are also permanent and will be passed on for generations. "Fetal alcohol syndrome".
In practice I think the chance of this actually happening to those women is, for the moment, zero. The above changes are effectively proposed as a way to save money for social services, and I do hope we, as a species, are above using forced sterilization to save a buck. Additionally I hope that any doctor that is asked to do this will refuse to do it.
Who exactly is calling for that?
e.g. https://www.demorgen.be/nieuws/streng-verboden-een-kind-te-k...
They're saying the chances of making this happen are slim, but they're still calling for it.
Feels like we've proved the importance of ethicists in genetic medicine in two replies here.
But don't worry, they haven't had success passing laws legalizing your organ harvesting so you'll probably get to live a full life even after we're done testing you.
Note that the specific change he made was intended to make these subjects more robust to resisting HIV infection. HIV infection in China is extremely rare, so it's an odd choice to pick- most doctors would instead focus on a well-understood, testable condition that is caused by a mendelian gene change. And, He's change likely didn't really have the outcome he predicted (common problem with genetics- the mutation you make almost never has the phenotype you desire). So there was a lack of need for this risky work and it also wasn't the right work. And, those changes will be passed on to the children of the affected children.
Now, I need to point out if your attitude is that these are "test subjects", and that you are going to keep them from reproducing, I can assure you that politicians, lawyers, doctors, scientists, and parents are going to stop talking to you and you're not going to be able to make a career out of this. This is an area that is closely tied to people's strongest beliefs and a single misstep (He made multiple missteps) can ensure you never work in this field again. m Learnign to speak the jargon so that people think you're a well intentioned doctor, not Doctor Frankenstein, is absolutely critical to being able to work in this field.
So just to be clear, what we're talking about here is a protocol for performing eugenics on humans that were bred as part of an experiment, right? And ethically, that isn't a hang-up for you?
No. What we're talking about is if it's ethical to essentially create a race of monster-people by altering their DNA.
GP is saying, no way it's ethical, because if they have offspring it would be unethical. I'm saying maybe it's as ethical as current medical science, as long as you sterilize them.
You're the only one talking about eugenics.
> ethically that isn't a hang-up for you
Look, ethics is in its core, a public affair. Ethicists are primarily concerned whether general people will find XYZ acceptable, and why or why not.
For me personally, I'm not concerned with academics. I'm concerned with whether I feel it's right or wrong in my personal view. Is genetically altering humans ethical in my personal view? No.
This is eugenics. You are the one that brought it up saying maybe it's relatively ethical. I'm rejecting that point and saying that it categorically is not ethical.
> If we allow parents to destroy embryos, why is it so controversial to allow them to modify them?
Genetic modification as such, in the abstract, when therapeutic (fixing some genetic defect that causes a disease) may be licit in principle, but in practice,
1. our ignorance of genetics and non-trivial hereditary effects suggests we should be cautious, not only for the sake of the person whose genes are being edited, but because the change is not localized; that modification may not be transmitted to descendants
2. that embryos are subjects of modification introduces the standard moral problems of IVF (such as the objectification of human beings).
If modification is not therapeutic, then the usual moral problems surrounding designer babies apply in addition to those that apply to IVF. Killing embryonic human beings is intrinsically worse, though the secondary genetic risks are obviously absent.
How would you feel about performing untested gene therapies on healthy babies?
(it might be one thing if this was an attempt to correct a genetic disease in an embryo, but it wasn't. It was on perfectly healthy embryos.)
The medical industry seems to be largely divided into two camps: Camp A would happily sell allergy medication that triples your risk of diabetes, and Camp B would rather ten thousand terminal patients die in agony than kill a hundred of them with medication that cured the rest.
It's simply the momentum of the world we live in. It's perfectly legal for a 45 year old woman to get pregnant by an elderly man, then chainsmoke, take caffeine pills, and get shitfaced every day of her pregnancy and create a profoundly disadvantaged baby whose life will be full of hardship. They can even do it on purpose if they want. The powers-that-be don't give a damn about human happiness or suffering; they just want to make sure it isn't them who gets blamed.
Honestly even that description is massively underselling how much more comprehensive the ethical views of 100% of the medical profession has here. The fringes like that are a tiny rounding error.
There probably exist examples of both the extremes you describe, but in such small numbers as to probably be irrelevant. On the whole the industry is conservative but changes fairly quickly.
…We don’t? Nobody does? Ethicists aren’t cops. Nobody gets arrested by the ethics police or thrown into ethics jail. They have opinions which are then either ignored or supported by somebody in a political or managerial position.
Why would we give cover to the people that actually make decisions about laws by pretending that some stuffy academics are omnipotent?
edit:
> If we allow parents to destroy embryos, why is it so controversial to allow them to modify them?
There’s an entire profession of people that get hired to debate questions like that, they’re called… ethicists.
In my view, the greatest indictment possible of many of these so-called "ethicists" is that even as they obsess over non-issues, they make not a word of protest against murdering babies.
https://education.blogs.archives.gov/2017/05/02/buck-v-bell/
People are resistant to any sort of genetic restrictions on procreation for a couple reasons. First, the historical precedent of eugenics is so monstrously abusive that any step in that direction is viewed as dangerous. Second, how would you enforce a ban on procreation of people with genetic defects? Put the parents in jail? Forcefully abort the fetus? What if they don’t know about their genetic condition?
With genetic engineering, it’s a bit more clear. It’s much easier to just not start doing germline editing than to roll back the (unknown) consequences. The harm in not doing that is of course that some people get sick and die, but we can mitigate that with normal medicine. Also the particularities of the case matter here. The scientist chose a questionably effective approach to preventing HIV, a disease that has good treatments. Also he did a shit job informing the parents about the risks. Just bad choices all around.
Doing secret, shady genetic engineering on children is not the same thing as letting people with genetic conditions have children.
"we can mitigate that with normal medicine" -- for some illnesses. For many, it's an abbreviated lifetime, curtailed options, and some measure of ongoing suffering.
I don't really care about historical precedents. They can best be used as a measure of how not to do something, rather than a suggestion that it not be done at all.
Germline editing has the chance to relieve the suffering of real people. My entire life would likely to be quite different and much better, were it available back then. And yet a lot of people are just ... counted as part of the cost. Sorry you will die soon, and painfully, but at least we're not the Nazis.
In general, it seems as though our civilization views children as little more than property of their parents.
> Susan and Patrick were a young German couple in love. But, the German state never allowed Susan and Patrick to get married. Shockingly, Patrick was imprisoned for years because of his sexual relationship with Susan. Despite these obstacles, over the course of their relationship, Susan and Patrick had four children. Three of their children—Eric, Sarah, and Nancy—had severe problems: epilepsy, cognitive disabilities, and a congenital heart defect that required a transplant. The German state took away these children and placed them with foster families. Why did Germany do all these terrible things to Susan and Patrick?
> Eugenics. No, this story didn’t happen in Nazi Germany, it happened over the course of the last 20 years. But why haven’t you heard this story before? Because Patrick and Susan are siblings.
https://dissentient.substack.com/p/eugenicist
Convince me I'm wrong.
You could oppose this because you think it's unlikely to work at all, and so is a dead end and wasted effort. You could oppose it because you think it will work, but that the changes are not likely to be improvements.
Is a procedure that creates a new form of smarter, healthier, longer lived human progress? For them it certainly is. If they deny me that technology for my descendants, is it progress for them?
It is simply not going to break down so easily into "this is progress and progress is good." It will have consequences, some of them negative, many of them unexpected. It will be better for some people some of the time and worse for some people some of the time, like almost all changes are. Resisting change simply to slow it down and better understand and predict the effects is a valid stance as well. None of these things are inherently unethical.
If you shift it to make my child really smart or really pretty, the answer might be different - especially if the parents aren’t especially smart or good looking themselves.
Then dictators will be tempted to "build" better workers and soldiers to get an edge on "those pesky democracies". If they succeed and become a threat to other nations, those nations will feel obligated to follow suit. The cat's out of the bag. (I'll pre-order a second wanker.)
If nukes don't get you, AI will. If AI doesn't get you, genetically modified monsters will. If genetically modified monsters[1] don't get you, then rioters paranoid over the first 3 will get you. Enjoy every day like it's your last.
[1] Could be altered humans, altered viruses, altered bears, altered mash-ups of all 3, etc.
The gain from this kind of gene editing is likely much smaller than simply having a bunch of kids with a very genetically fit individual, and that is exactly what rich people do.
I also recall reading that some countries had strategies to foster interaction between very genetically fit individuals, beyond what would naturally happen by the general tendency of people to be attracted to others like them.
In all seriousness, all advancements in AI have been around benefiting the individuals utilizing it to better perform. Raising the baseline of what an individual can accomplish by themselves will likely increase what they can do with AI help too.
Why do the ethical concerns of gene editing matter, ethically, when there are billions of people starving?
Instead of spending time and money on ethics of a few, why not spend that time and money on helping others who actually would love to have the opportunity to make an ethical choice by surviving?
I mean seriously, bioethics is just a way for the upper-middle classes to feel better about their choices. But in real life the rich don't really care about that sort of shit; ethics really is a way for the rich to deny the almost rich the same privileges and opportunities.
Once one country opens this pandora's box, they all will.