Using PGD to design deafness in child
newscientist.com
newscientist.com
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.
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.
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 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?
1) 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.
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.
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?
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.
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.
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?
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?