Like most ethics questions, I'd consider this area a matter of degrees. We probably have an easier time saying that ensuring your child's health and integrity is an ethical endeavor. Maximizing your child's stats on the other hand is probably questionable, not only because this has been associated with evil in the past, but also because we're not really all that good at judging consequences.
With this, somewhat tenuous, idea of the upper end of the ethical spectrum in mind, it's easier to see that intentionally hurting your child is bad. Again, at the most extreme end, the bottom is made up of people who commit a willful physical act to rob their child of health and happiness. This is quite common post birth, but now it's also increasingly feasible to do in the womb. I'd say removing a child's hearing is in the same league as, say, removing a child's genitals (which is also common in large parts of the world). It's a malevolent act designed to rob your child of some aspect of its humanity, and the motives are also similar ("I want my child to be the same as me!", "I think it's better that way").
Slightly towards the gray area of the spectrum, but still by far on the negative side, are in my opinion people who willingly and intentionally pass on catastrophic genes to their children. It's really not all that different, except I'd compare it more to shooting a person with a weapon at a distance, where the former examples are more like pulling a knife and butchering someone with your own hands (in some cases literally).
Now, your second question is the most interesting in my opinion. Is creating a child ethical at all because its suffering and eventual premature death seems predestined anyway? I'd argue that life - even at our current, very limited tech level - is indeed worth living and all things considered a positive thing. As badly designed as we are by nature, we're still a comparatively nice and diverse organism with amazing capabilities. And for a child born today, I hope that senescence will become a solvable problem within its lifetime.
A bit confused by your referencing senescence, since that's just growing old. I digress ...
As to #2 there's a huge difference between conditions that cause death. Some cause very early and painful deaths. I have Cystic Fibrosis, and I should be able to make it into my 60's (probably far beyond, but I'm assuming today's science).
As my wife and I are considering children #2 is a very real question (let's say you don't die young, but have a lower health quality compared to most, and have tens of thousands of health costs every year with all the financial instability that comes with - would this be unethical to force on someone?)
A bit confused by your referencing senescence, since that's just growing old.
Everyone is born with a fatal disease: mortality. The first and second questions asked in the grandparent's post can therefore be seen as similar, which, from a purely logical standpoint, should have similar answers. However, most people would say that it is not ethical to pass a specific fatal disease to your child, but that it is ethical to have a child at all, even knowing that it will die eventually.
Its a bit like the situation over abortion. The parents are allowed to act selfishly until a number of weeks into pregnancy. At which point the parents are required by law to act in the best interest of the child, which undoubtedly wants to survive. This is only ethically challenging is you believe that parents should act in a wholly unselfish manner, which is an unreasonable expectation. Doctors should do what is in the best interest of the parents, until such a point that the interest of the child is legally identified.
In the end I think it is up to the parent to decide how their children turn out, even if I disagree with that decision. When someone chooses their mate they are doing the same thing, if only in a more crude way, and certainly we've all disagreed with someones mate choice in the past. This is really no different.
If I want to have a child, and the only way I'd be willing to have one is if it completely designed, I would want my child to be tall and intelligent. Some of the variants may be seen as detrimental to some people (HEXA), but I wouldn't want society deciding on that.
What if the predominant traits in our population were supra olfactory capability (smelling) that helped us recognize people instantly, or avoid poisons, or perhaps infra-vision (ability to see at night), etc...
What would it be like to be unable to recognize without the use of smell? How would we avoid some subtle poisons without smelling them? And wouldn't we be basically helpless in the dark, for 25% of the day, requiring artificial aids just to keep a car on the road? Walk down a path?
Would deliberately having a child to be like, well, us, be cruel?
I wonder if deaf parents basically are looking at it like this. They are fine with the way they are, they don't consider being deaf to be a particularly profound disability, and they want to have children that are like them; not a particularly unusual instinct.
The difference is we live in a culture and a world that has been built around the senses "normal" people do have, so you would be depriving them of a large part of that world.
So should two parents who only have one arm be allowed to cut off their babies arm in order to make them like they are? After all, only having one arm isn't a debilitating injury in today's world. Even moreso with prosthetics it could be considered an advantage...
Furthermore, since it isn't genetic, their child retains the options to choose whether their children will be one armed or not, unlike in this case where a gene might always be carried or carried a very high % of the time.
It would be unethical to maintain a harmful allele of a gene, assuming that the particular allele is unequivocally harmful.
But that is not always the case. The textbook example is sickle cell anemia: although it is very harmful in homozygous individuals, it confers resistance to malaria without negative side effects in heterozygous individuals, which is beneficial.
There's the possibility that a harmful gene today becomes beneficial in the indeterminate future, for a reason that we cannot predict. That is the logic behind genetic diversity in a species, which allows it to cope with new and unpredictable environments by essentially allowing alleles to compete in the "natural marketplace."
If we're going to take control of our genomes and select for ourselves which alleles are harmful or beneficial, we must at least be prepared to preserve genetic diversity, if not in living individuals, then in gene banks or genomic databases.
Nothing throws this into a grey area as much as deafness. Deaf culture is truly profound. Entire vibrant deaf communities exist within 'normal' communities and can interact with others on an equal basis.
On the flip side, it can be seen as offensive to others when medical options become available to restore hearing. People will sometimes forgo treatment to 'stay in the clique'. This strong desire to not see deafness as a disability and an independent thriving culture is what might influence the choice to have a deaf child.
And while I'm being all stereotypical, if you ever have a Final Cut Pro question and you have a choice between asking a deaf or a hearing person, choose the deaf person....
Nothing throws this into a grey area as much as deafness. Deaf culture is truly profound. Entire vibrant deaf communities exist within 'normal' communities and can interact with others on an equal basis.
I'm genuinely curious: would curing deafness destroy those communities?
Every human attribute could be redefined as "cultural" or individualistic and therefore under the scope of individual or group choice.
But to claim that the state gives up all responsibility for these choices is absurd since there is there are very real costs for those choices and their consequences.
For example, increasingly and controversially European state welfare systems are bearing the cost of IVF treatments, even for the oldest of couples and unusual parent systems (e.g. 3-parents). But there are clear trends in those societies for decreasing birth rates which cannot be entirely filled by immigration. The state has to act if it wants to continue to exist and thrive (as Japan will probably discover in 50 years time!).
In the extreme, at one end there is Gattaca. At the other end, all members of society and their children are being required to support choices that would otherwise never naturally exist, or only exist from enormous harm, but provide no objective benefit. In both cases, the long run damage to the human race or individual societies is unknown.
Perhaps the only solution is the minimum one. When it comes to procreation, allow only choices that permit any viable life and absolutely no more?
Perhaps one day, in combination with AI, there will be an internationally ratified and strongly enforced Minimum Viable Person Treaty - a sort of NPT for Sentient Life?
For those that see this as depriving a child of music, sound, etc - remember that for this particular potential child, it's deafness or never existing at all. It's not as if that particular child has a chance of hearing.
Those that argue that a different "hearing" embryo should be deliberately selected instead are guilty of the exact same thing they're protesting against.
I think the only consistent ways to argue against this are to either argue against the entire practice of embryo selection for any reason, or to argue that deafness is a sufficient reason to prevent any embryo from coming to term.
Anyway, I see this practice as being wildly different than that of choosing an embryo of a hearing being, and then causing it to be deaf.
Put yourself in the child's position. You'd grow up and discover that your deafness is not due to some random genetic mutation, or even just inheritance - but your parents selected you to be deaf - just so that you could be exactly like them.
I'd be outraged. Wouldn't you be?
And I'm not saying that we should abort deaf children, nor am I saying that we should deliberately select "hearing" embryos instead.
The point tunesmith is making is that if the parents hadn't selected the child to be deaf, that particular child simply wouldn't exist. The parent's child would be a different combination of genetics. The child themselves really couldn't be outraged, because if the parents had made a different choice they would have never developed into anyone.
It is an interesting ethical question. It isn't nearly as simple as the circumcision debate, or the "remove an extra finger" issue discussed elsewhere. In both those cases, the parents make a choice to modify an existing child. The child grows up knowing that had their parents made a different choice, they would have a foreskin/extra finger etc. The deafness debate is profoundly different, because the child simply wouldn't exist had the parents made a different choice.
If the choice for me was between being selected to be deaf and not being selected at all, I'd choose the former.
Considering the countless potential never-borns is a terrible game. If the children who could be born get a full say in the matter, then all women everywhere should always be pregnant, so that the maximum potential number of children can be born. Worse: we should really be inducing labor prematurely at 7 or 8 months, once survival is nearly guaranteed with current technology, so that the mothers can become pregnant as soon as possible, giving even more potential children the chance to be born. Simply matching up every egg with a sperm does not give every potential child the chance the exist: we need to clone every egg and every sperm a trillion times over, and match up every possible combination. Half our population must be constantly pregnant, and the other half tending the endless fields of frozen embryos waiting their turn, if every potential child is to be given their day in the sun.
There are just too many potential children to go down this road. Every action we take closes the door on an infinite number of potential children while opening the door an a different infinite set. Getting pregnant closes the door on the infinite number of children you can't have while pregnant with the one actual child.
I completely agree with you in broader terms, but that wasn't really what my comment was about. The poster I replied to suggested that they'd be outraged if they discovered that their parents had made a concious choice to select a deaf embryo. My point, and the reason that it isn't a black and white debate, was that if the parents hadn't made that choice, the deaf-but-outraged child wouldn't exist.
On a larger, societal level, I think that purposefully selecting deaf children is wrong. On a personal level, if I was that deaf child, I don't know if I could be outraged at my parents choice because if they hadn't made it I simply wouldn't exist. You'd have to be fairly certain in your beliefs to be outraged at acts that resulted in your being.
In that case, your parents did not select you to be deaf. They simply selected you. They did not select you, and then cause you to be deaf. You were deaf by definition. Your alternative was not existing at all. In a sense, they saved your life. The outrage, from the perspective of the people who disagree, is that the parents didn't select an entirely different child.
Just to be on the same page. The child is not "created" and then "implanted" with the disability. The embryo with the disability is picked to be born. So it is not unethical to the child (the other option for him/her was to not be born).
True, but the result is the same whether the child was "picked" from an embryo with a disability or if he was born fine and then the parents injured him in a way that gave him the disability, which would be considered totally despicable and illegal.
The result is a sentient being with a disability. It doesn't matter if a mutation caused it or you physically injured the child, the consequences are the same.
When I was young, I was browsing one of my dad's medical dictionaries and I came across the term 'Polydactyly' -- essentially being born with an extra finger, typically removed shortly after birth. In most cases it's not usable but there are many cases where the extra digit functions just fine. It blew my mind that the accepted reaction was to just cut it off. Perhaps there are advantages to having an extra finger.. what if 4 fingers was the norm and the 5th finger was cut off?
I think that any kind of tampering to 'take away' any part of a person without their informed consent is unethical (unless the removed component is likely to be problematic in some way, as in the case of unusable extra fingers that may be cause pain or cramping of the other fingers).
But at the same time I acknowledge that some practices I disagree with are so ingrained in cultures that they're not even questioned. For those of you who are male and circumcised, think about this: If you hadn't been, would you choose to have it done now? Are you glad it was done at birth? I (like I assume most men) absolutely would NOT be able to bring myself to go through with it now, but at the same time, since there's good evidence to suggest it's a largely unnecessary procedure with very limited benefit, and a measurable downside as well, my own opinion is that it shouldn't really be performed at all (someone else mentioned genital mutilation -- this is a form of it). Deaf parents who want to rob their child of its sense of hearing so he or she will be more like them are probably not so different from my Jewish parents. When framed this way I'm sure it's likely to divide a lot more people though.
That is what happens when you push for political correctness. Sure it's not a handicap, it's a "difference", wait it's a "culture", a "community". Keep bashing this over and over, pass laws to force companies to feed that kool aid to their employees, and sure enough you end up with this kind of situation.
In the same vein, you'll see people arguing for neuro-diversity to defend autism as a perfectly desirable condition.
And this kind of comment is what happens when people lack respect for those whose experience of life is different from their own. Do you believe that their experience is less valid? What are your objective criteria for deciding this? Differences are just that - they confer advantages and disadvantages against the population average. The weight of balance may fall either way, who are you to declare that without experiencing it?
I find the point about autism especially rich, given that it must be understood at a spectrum, and in a forum such as this, most of us likely sit waaay closer to the end you deride that the population average.
As a musician who, like his ancestors, will slowly but surely go deaf during his lifetime (and has noticed the process starting already), I can respect deaf people but not the desire to propagate deafness. Do you understand?
I do, as a hearing person who greatly enjoys music, I would not choose to be deaf.
But would I choose never having experienced music aurally (and people do experience it through touch, for example), over the bond and understanding with my parents and their friends? Or over the increase in other senses which lacking acuity in one is documented to often bring? Well, then I have no idea - I'm not in a position to speculate given my lack of experience.
But the important point is that in this case we're not talking about removing one of someone's senses, we're talking about choosing to raise someone who never had one. Would you agree that your viewpoint is one informed by the pain of loss rather than the experience of lack?
I can't agree with that. In a similar vein, my roommate and a couple other close friends are red-green colorblind, a common genetic deficiency which commonly afflicts men. The pain and suffering they experience in their day-to-day lives, while arguably minor compared to many other more serious problems, is still pretty debilitating at times.
I find the point about autism especially rich, given that it must be understood at a spectrum, and in a forum such as this, most of us likely sit waaay closer to the end you deride than the population average.
Self-criticism being a high and praiseworthy art, at least where I come from. The general sentiment that one shouldn't be permitted to study and improve oneself is much more offensive.
I'd like to understand this comment, but I'm afraid I can't fathom its relation to what you quoted.
I meant to convey that the highly analytical mindset is lauded as a great strength here. The popularity of social skill self-help type articles on here also demonstrates that it is a strength with trade-offs. Y'know, like almost all differences in people's make ups.
Autism (along with all sorts of other things) isn't just 'a highly analytical mindset.' As you say, it has downsides. Which can be very unpleasant (and not just for other people, either).
The idea that we should all just learn to except everybody for who they are, which in my experience is often coupled with the idea that wanting to change yourself is bad, is an idea that I am not a fan of, to put it lightly. I've heard it directed at myself to often for that.
Fair enough. I've never had a serious encounter with the opinion that one shouldn't want to improve oneself. The idea that wishing for a change which cannot be achieved might be harmful (to happiness at least) - but not the idea that someone shouldn't try to grow towards a better self.
By respecting someone else's differing experience, I mean supporting rather than dictating their efforts. Who else could know who you want to become?
That's a wonderful sentiment, but I really have to wonder, how far does it go? I've heard the same thing from other people who went on to protest scientific studies of sexuality or research on cochlear implants or a dozen other similar things, all on the grounds that such things were 'offensive' and 'destructive towards culture'.
Maybe you don't believe these things. I have little enough reason to think you do. But once you actually have to choose between this group 'curing' themselves and that group 'protecting their culture', who do you have the most sympathy for?
43 comments
[ 3.4 ms ] story [ 94.0 ms ] thread1) Is it ethical for two deaf persons to give birth to a child without screening for their genetic disease?
2) Is it ethical to create a child with disease, that guarantees his death? (Senescence)
With this, somewhat tenuous, idea of the upper end of the ethical spectrum in mind, it's easier to see that intentionally hurting your child is bad. Again, at the most extreme end, the bottom is made up of people who commit a willful physical act to rob their child of health and happiness. This is quite common post birth, but now it's also increasingly feasible to do in the womb. I'd say removing a child's hearing is in the same league as, say, removing a child's genitals (which is also common in large parts of the world). It's a malevolent act designed to rob your child of some aspect of its humanity, and the motives are also similar ("I want my child to be the same as me!", "I think it's better that way").
Slightly towards the gray area of the spectrum, but still by far on the negative side, are in my opinion people who willingly and intentionally pass on catastrophic genes to their children. It's really not all that different, except I'd compare it more to shooting a person with a weapon at a distance, where the former examples are more like pulling a knife and butchering someone with your own hands (in some cases literally).
Now, your second question is the most interesting in my opinion. Is creating a child ethical at all because its suffering and eventual premature death seems predestined anyway? I'd argue that life - even at our current, very limited tech level - is indeed worth living and all things considered a positive thing. As badly designed as we are by nature, we're still a comparatively nice and diverse organism with amazing capabilities. And for a child born today, I hope that senescence will become a solvable problem within its lifetime.
As to #2 there's a huge difference between conditions that cause death. Some cause very early and painful deaths. I have Cystic Fibrosis, and I should be able to make it into my 60's (probably far beyond, but I'm assuming today's science).
As my wife and I are considering children #2 is a very real question (let's say you don't die young, but have a lower health quality compared to most, and have tens of thousands of health costs every year with all the financial instability that comes with - would this be unethical to force on someone?)
Everyone is born with a fatal disease: mortality. The first and second questions asked in the grandparent's post can therefore be seen as similar, which, from a purely logical standpoint, should have similar answers. However, most people would say that it is not ethical to pass a specific fatal disease to your child, but that it is ethical to have a child at all, even knowing that it will die eventually.
If I want to have a child, and the only way I'd be willing to have one is if it completely designed, I would want my child to be tall and intelligent. Some of the variants may be seen as detrimental to some people (HEXA), but I wouldn't want society deciding on that.
What would it be like to be unable to recognize without the use of smell? How would we avoid some subtle poisons without smelling them? And wouldn't we be basically helpless in the dark, for 25% of the day, requiring artificial aids just to keep a car on the road? Walk down a path?
Would deliberately having a child to be like, well, us, be cruel?
I wonder if deaf parents basically are looking at it like this. They are fine with the way they are, they don't consider being deaf to be a particularly profound disability, and they want to have children that are like them; not a particularly unusual instinct.
Though if you are happy, then so be it.
Furthermore, since it isn't genetic, their child retains the options to choose whether their children will be one armed or not, unlike in this case where a gene might always be carried or carried a very high % of the time.
But that is not always the case. The textbook example is sickle cell anemia: although it is very harmful in homozygous individuals, it confers resistance to malaria without negative side effects in heterozygous individuals, which is beneficial.
There's the possibility that a harmful gene today becomes beneficial in the indeterminate future, for a reason that we cannot predict. That is the logic behind genetic diversity in a species, which allows it to cope with new and unpredictable environments by essentially allowing alleles to compete in the "natural marketplace."
If we're going to take control of our genomes and select for ourselves which alleles are harmful or beneficial, we must at least be prepared to preserve genetic diversity, if not in living individuals, then in gene banks or genomic databases.
On the flip side, it can be seen as offensive to others when medical options become available to restore hearing. People will sometimes forgo treatment to 'stay in the clique'. This strong desire to not see deafness as a disability and an independent thriving culture is what might influence the choice to have a deaf child.
And while I'm being all stereotypical, if you ever have a Final Cut Pro question and you have a choice between asking a deaf or a hearing person, choose the deaf person....
I'm genuinely curious: would curing deafness destroy those communities?
But to claim that the state gives up all responsibility for these choices is absurd since there is there are very real costs for those choices and their consequences.
For example, increasingly and controversially European state welfare systems are bearing the cost of IVF treatments, even for the oldest of couples and unusual parent systems (e.g. 3-parents). But there are clear trends in those societies for decreasing birth rates which cannot be entirely filled by immigration. The state has to act if it wants to continue to exist and thrive (as Japan will probably discover in 50 years time!).
In the extreme, at one end there is Gattaca. At the other end, all members of society and their children are being required to support choices that would otherwise never naturally exist, or only exist from enormous harm, but provide no objective benefit. In both cases, the long run damage to the human race or individual societies is unknown.
Perhaps the only solution is the minimum one. When it comes to procreation, allow only choices that permit any viable life and absolutely no more?
Perhaps one day, in combination with AI, there will be an internationally ratified and strongly enforced Minimum Viable Person Treaty - a sort of NPT for Sentient Life?
Those that argue that a different "hearing" embryo should be deliberately selected instead are guilty of the exact same thing they're protesting against.
I think the only consistent ways to argue against this are to either argue against the entire practice of embryo selection for any reason, or to argue that deafness is a sufficient reason to prevent any embryo from coming to term.
Anyway, I see this practice as being wildly different than that of choosing an embryo of a hearing being, and then causing it to be deaf.
I'd be outraged. Wouldn't you be?
And I'm not saying that we should abort deaf children, nor am I saying that we should deliberately select "hearing" embryos instead.
It is an interesting ethical question. It isn't nearly as simple as the circumcision debate, or the "remove an extra finger" issue discussed elsewhere. In both those cases, the parents make a choice to modify an existing child. The child grows up knowing that had their parents made a different choice, they would have a foreskin/extra finger etc. The deafness debate is profoundly different, because the child simply wouldn't exist had the parents made a different choice.
If the choice for me was between being selected to be deaf and not being selected at all, I'd choose the former.
There are just too many potential children to go down this road. Every action we take closes the door on an infinite number of potential children while opening the door an a different infinite set. Getting pregnant closes the door on the infinite number of children you can't have while pregnant with the one actual child.
On a larger, societal level, I think that purposefully selecting deaf children is wrong. On a personal level, if I was that deaf child, I don't know if I could be outraged at my parents choice because if they hadn't made it I simply wouldn't exist. You'd have to be fairly certain in your beliefs to be outraged at acts that resulted in your being.
I think that any kind of tampering to 'take away' any part of a person without their informed consent is unethical (unless the removed component is likely to be problematic in some way, as in the case of unusable extra fingers that may be cause pain or cramping of the other fingers).
But at the same time I acknowledge that some practices I disagree with are so ingrained in cultures that they're not even questioned. For those of you who are male and circumcised, think about this: If you hadn't been, would you choose to have it done now? Are you glad it was done at birth? I (like I assume most men) absolutely would NOT be able to bring myself to go through with it now, but at the same time, since there's good evidence to suggest it's a largely unnecessary procedure with very limited benefit, and a measurable downside as well, my own opinion is that it shouldn't really be performed at all (someone else mentioned genital mutilation -- this is a form of it). Deaf parents who want to rob their child of its sense of hearing so he or she will be more like them are probably not so different from my Jewish parents. When framed this way I'm sure it's likely to divide a lot more people though.
In the same vein, you'll see people arguing for neuro-diversity to defend autism as a perfectly desirable condition.
I find the point about autism especially rich, given that it must be understood at a spectrum, and in a forum such as this, most of us likely sit waaay closer to the end you deride that the population average.
But would I choose never having experienced music aurally (and people do experience it through touch, for example), over the bond and understanding with my parents and their friends? Or over the increase in other senses which lacking acuity in one is documented to often bring? Well, then I have no idea - I'm not in a position to speculate given my lack of experience.
But the important point is that in this case we're not talking about removing one of someone's senses, we're talking about choosing to raise someone who never had one. Would you agree that your viewpoint is one informed by the pain of loss rather than the experience of lack?
Self-criticism being a high and praiseworthy art, at least where I come from. The general sentiment that one shouldn't be permitted to study and improve oneself is much more offensive.
I meant to convey that the highly analytical mindset is lauded as a great strength here. The popularity of social skill self-help type articles on here also demonstrates that it is a strength with trade-offs. Y'know, like almost all differences in people's make ups.
Sorry if we're talking at cross purposes.
The idea that we should all just learn to except everybody for who they are, which in my experience is often coupled with the idea that wanting to change yourself is bad, is an idea that I am not a fan of, to put it lightly. I've heard it directed at myself to often for that.
By respecting someone else's differing experience, I mean supporting rather than dictating their efforts. Who else could know who you want to become?
Maybe you don't believe these things. I have little enough reason to think you do. But once you actually have to choose between this group 'curing' themselves and that group 'protecting their culture', who do you have the most sympathy for?