Let me fix that for you
Colour-blindness, autism, and deviance versus normativity in ...
Colour-blindness affects somewhere around ten percent of those people who have had the unfortunate luck of being born with a y-chromosome. And, courtesy of gene therapy, it can be cured. Well. Theoretically.
It can be cured in monkeys, which is a good first step, and the curative mechanism, which amounts to creating a "gives you coloured vision" virus, is not particularly simian, which suggests that it might work for humans as well. Beyond offering a potential answer to the "Saturday at 3 AM, stoned off your ass" question of "does everyone see blue the same way I do?" though, this to me seems to offer up an intriguing dilemma for medical science. Namely: what is its role?
For pathogen-focused fields of study, we imagine the answer to be comparatively simple — the role of medical science is in discovering cures to fatal diseases. Similarly, we can imagine that a world without genetic conditions like trisome-21 would be a better one. But at some point, there exists a fuzzier line, and it's not clear where exactly that is.
Deaf people, for instance, are famous for having a deaf community; they have their own language (American sign language, in case you were wondering, is an agglutinative, tenseless, reduplication-heavy language with SOV word order and is thus not really related to English at all) and their own culture. For many, attempts to "cure" them — or their children — face at best an uphill battle and, commonly, outright rejection. This shouldn't come as a surprise; being told that something is "wrong" with them is an implicit insult to that language and culture, as though it was something second-rate that could be cast off when the welcoming arms of medicine allow them to become real people again.
A similar issue affects some people with, among other things, ADHD or high-functioning autism. The notion that there could be a "cure" for these, for them, is as silly as the notion that there could be a "cure" for brown hair. Without delving too deep into E-mail-forward-style language about how much better it used to be when we didn't dope all our kids up on Ritalin, the link between creativity and mental illness is somewhat suggestive. We wouldn't want to compel anyone to suffer, but ours would be a very different world without Kafka.
I'm not aware of whether or not colour-blind people have a similar sense of community, but colour-blindness is not intrinsically harmful; if it were, there's little reason to believe it would affect so many people. Indeed, while colour vision itself is thought to have helped our primate ancestors in finding brightly-coloured delicious fruits, colour-blind individuals have greater visual acuity and can more easily detect variances in texture; thus while colour-blindness is contraindicated in pilots, it is eminently useful in detecting camouflage.
I don't necessarily want to get into evolutionary biology as an explanation for everything; it's not always well-suited to the task, and at times — like trying to figure out where gay people come from — it seems singularly unfit for the task. But then, homosexuality is not an entirely un-apt comparison. On the face of it, it does not improve reproductive fitness (again, various rationalisations offered by evolutionary bio to the contrary), but has persisted regardless. Could it be corrected with gene therapy? Quite possibly.
Should it? That's another question entirely.
It seems to me that the power of medical science crosses a line when it is, essentially, yoked to reinforce normative concepts of humanity or biological completeness. If we can use viruses to "treat" deafness or colourblindness, aren't we essentially genetically defining a human "ideal"? Is a pathological view of human variation really appropriate? Is this the right path to be heading down? Was Aldous Huxley prescient — and, more importantly: was he right?
It can be cured in monkeys, which is a good first step, and the curative mechanism, which amounts to creating a "gives you coloured vision" virus, is not particularly simian, which suggests that it might work for humans as well. Beyond offering a potential answer to the "Saturday at 3 AM, stoned off your ass" question of "does everyone see blue the same way I do?" though, this to me seems to offer up an intriguing dilemma for medical science. Namely: what is its role?
For pathogen-focused fields of study, we imagine the answer to be comparatively simple — the role of medical science is in discovering cures to fatal diseases. Similarly, we can imagine that a world without genetic conditions like trisome-21 would be a better one. But at some point, there exists a fuzzier line, and it's not clear where exactly that is.
Deaf people, for instance, are famous for having a deaf community; they have their own language (American sign language, in case you were wondering, is an agglutinative, tenseless, reduplication-heavy language with SOV word order and is thus not really related to English at all) and their own culture. For many, attempts to "cure" them — or their children — face at best an uphill battle and, commonly, outright rejection. This shouldn't come as a surprise; being told that something is "wrong" with them is an implicit insult to that language and culture, as though it was something second-rate that could be cast off when the welcoming arms of medicine allow them to become real people again.
A similar issue affects some people with, among other things, ADHD or high-functioning autism. The notion that there could be a "cure" for these, for them, is as silly as the notion that there could be a "cure" for brown hair. Without delving too deep into E-mail-forward-style language about how much better it used to be when we didn't dope all our kids up on Ritalin, the link between creativity and mental illness is somewhat suggestive. We wouldn't want to compel anyone to suffer, but ours would be a very different world without Kafka.
I'm not aware of whether or not colour-blind people have a similar sense of community, but colour-blindness is not intrinsically harmful; if it were, there's little reason to believe it would affect so many people. Indeed, while colour vision itself is thought to have helped our primate ancestors in finding brightly-coloured delicious fruits, colour-blind individuals have greater visual acuity and can more easily detect variances in texture; thus while colour-blindness is contraindicated in pilots, it is eminently useful in detecting camouflage.
I don't necessarily want to get into evolutionary biology as an explanation for everything; it's not always well-suited to the task, and at times — like trying to figure out where gay people come from — it seems singularly unfit for the task. But then, homosexuality is not an entirely un-apt comparison. On the face of it, it does not improve reproductive fitness (again, various rationalisations offered by evolutionary bio to the contrary), but has persisted regardless. Could it be corrected with gene therapy? Quite possibly.
Should it? That's another question entirely.
It seems to me that the power of medical science crosses a line when it is, essentially, yoked to reinforce normative concepts of humanity or biological completeness. If we can use viruses to "treat" deafness or colourblindness, aren't we essentially genetically defining a human "ideal"? Is a pathological view of human variation really appropriate? Is this the right path to be heading down? Was Aldous Huxley prescient — and, more importantly: was he right?
| Vulpecula 19.04.2010 - 3h43 |
I hadn't considered things like modern medicine and gene therapy in the light of eugenics before, but that's essentially what you're describing. Just instead of killing of those with undesirable traits or preventing them from having children, we're "curing" them of their ills. I agree that things like genetic diseases that unquestionably hinder and degrade someone's quality and/or length of life, it is fairly unobjectionable to want to rid our gene pool of those defects. But even here it's still essentially eugenics, just of a much less controversial sort. But traits that make us different but which do not kill us or degrade our ability to enjoy life? Who picks what is "normal" and what is not? Who decides which deviations need to be "cured" and which don't? Color blindness, deafness, autism, homosexuality, intersex conditions... The list of (at least potentially) genetic "conditions" that at least some people don't like is not short. Though I think in the end there is also an obvious answer to this issue. There certainly are some color blind people, or deaf people, or autistics out there who do desire to rid themselves of these traits. If medical science can provide for them what they want, then go for it. But such "cures" should not be forced onto those who do not want it. Of course, the "simple" answer gets complicated when you ask whether the people want to be cured for purely personal reasons or because society looks down upon them for having those traits? In other words, is the best answer really to "cure" those conditions, or to "cure" society of its prejudices against them? |
| Comrade Alex 19.04.2010 - 4h43 |
I would argue there are two primary complications to your answer. The first argues against letting people choose, or suggests in favour of compelling them. Deviance is useful in society, to a point, but it requires us to acknowledge that certain patterns or behaviours are deviant. This is a perennial issue in, for instance, fat politics: does "fat acceptance" suggest making something unhealthy acceptable, and if so, should that be approved of? In a related concern, ADA compliance costs companies money, in the sense that if there were no blind people, they would not have to print everything in braille; if there were no disabled people, they wouldn't have to add wheelchair ramps, etc. Anything that requires some additional treatment, in all likelihood, affects more than you specifically: it also affects, for instance, the other people in your insurance group. Should they be compelled to pay for your refusal to be "treated" for something? Is that a necessary sacrifice to preserve personal liberty? A secondary problem: it's well and good to suggest that colour-blind individuals or people with autism might choose not to be "cured". Indeed, I think most non-totalitarian answers would hew to this. But what about their children? Is it right for them to make that same decision for their children? This is a huge issue for deaf parents. Here, for instance, is a case of deaf parents seeking fertility treatment in a country where IVF is not allowed to proceed with deaf embryos. Is this appropriate? For that matter, is the more radical approach appropriate? In a future world with easily-accessible gene therapy, should a deaf parent be able to choose to make their child deaf? If we accept that deaf people are equal to non-deaf people, and that the deaf culture and language is equally valuable, telling them otherwise would seem to be much the same as when we forcibly assimilated American Indian children into mainstream American culture. I do not know that there is a clear way out. As a libertarian my inclination is to say that people should not be compelled to treat themselves or their children, but at the end of the day this personal belief is just so — personal. Ethically, it would seem to me that parents ought to do what they can to raise their children with the greatest opportunity possible, but I cannot imagine being the person who is asked to decide what that is. +ca |