It would be unethical to maintain a harmful allele of a gene, assuming that the particular allele is unequivocally harmful.<p>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.<p>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."<p>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.
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?<p>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).<p>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 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...<p>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?<p>Would deliberately having a child to be like, well, us, be cruel?<p>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.
Every human attribute could be redefined as "cultural" or individualistic and therefore under the scope of individual or group choice.<p>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.<p>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!).<p>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.<p>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?<p>Perhaps one day, in combination with AI, there will be an internationally ratified and strongly enforced <i>Minimum Viable Person Treaty</i> - a sort of NPT for Sentient Life?
My first knee jerk reaction is that this is awful and unethical, but there are similar questions with possibly different answer:<p>1) Is it ethical for two deaf persons to give birth to a child without screening for their genetic disease?<p>2) Is it ethical to create a child with disease, that guarantees his death? (Senescence)
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.<p>Those that argue that a different "hearing" embryo should be deliberately selected instead are guilty of the exact same thing they're protesting against.<p>I think the only consistent ways to argue against this are to either argue against the entire practice of embryo selection for <i>any</i> reason, or to argue that deafness is a sufficient reason to prevent any embryo from coming to term.<p>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.
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.<p>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.<p>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....
In a similar vein, there was a documentary called "Sound and Fury" on the controversy of cochlear implants in the deaf community: <a href="http://www.pbs.org/wnet/soundandfury/index.html" rel="nofollow">http://www.pbs.org/wnet/soundandfury/index.html</a>
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).
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.<p>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.
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.<p>In the same vein, you'll see people arguing for neuro-diversity to defend autism as a perfectly desirable condition.