yes, i’ll take the embryo on the left, please…

June 26, 2010

Since yesterday I was on Skeptically Speaking, talking about the practical side of transhumanism with George Dvorsky (which was apparently such a fun show, we’re being invited back), I thought it would be fitting to take on a topic currently being covered on George’s blog and straight of Bill McKibben’s darkest fears; creating a custom baby through the latest and greatest technology that biologists and doctors can offer. Now, while you will probably never design your own custom child from the organs up and setting his ratios of IQ vs. social skills and athleticism vs. dedication to academic pursuits because this is simply not scientifically plausible to begin with, the decisions parents can already make today and would almost certainly continue making in the future could have a major impact on their children and their lives. And us our technology keeps advancing and we could make more and more of a drastic impact on a future child, the consequences will become more dire and the stakes will constantly rise, especially if the parents are behaving unreasonably, or even dangerously…

Of course just because you can do something doesn’t necessarily mean you should, and any ability to alter a developing embryo should be wielded wisely and with long term planning in mind. Humans are sill evolving, contrary to the popular pseudoscience we often hear, and when we decide to try and take evolution’s reins in an unpredictable world, we’re essentially betting that our choice for the future is the right one. And there’s a rather disturbing, but very real possibility of abuse in the future. Eugenicists didn’t just disappear after the end of the Nazis. They’re still out there, and their last major attempt to engineer “better humans” ended in 1999, an uncomfortably recent time period. What’s to say that more throwbacks to the 19th century pseudoscience that was cooked up by Francis Galton to justify racism and snobbism of the British upper class of the time, won’t decide to use the technology in question to try again? And in trying to somehow improve ourselves according to varying and often superficial standards could very well reduce our genetic diversity and make us vulnerable to new diseases, environmental changes, and even place us at a greater risk for extinction. We’re not in total control of the world around us and betting against the world is not something many would recommend.

Bioethicist Stephen Wilkinson, who wrote a book on the subject, thinks that these concerns are legitimate but not enough to necessarily forbid any particular method of customizing future children. He even goes to bat for a couple who decided they wanted their child to be born deaf because they have the same disability, doing everything possible to make it happen. And what he offers in their defense is a leap of mental gymnastics that is very difficult to follow and raises more question that Wilkinson seems willing to answer…

The strongest argument [McCullough and Duchesneau] would have to face would in all likelihood have to do with the welfare of the child created thereby: that deafness is welfare-reducing, and that it is wrong deliberately to created a child with lower welfare than it might otherwise have enjoyed. Yet, says Wilkinson, even this claim is weak. Partly this has to do with a skepticism about whether choosing for a disability is necessarily the same as choosing for a lower quality of life; partly it has to do with a claim that, even if disabled, people overwhelmingly have a life worth living… partly it is because the ‘Same Number Quality Claim’ does not reliably tell us that all examples of selecting for disability are wrong, and so, even at its strongest, will not tell us that this particular instance of choosing disability is de facto wrong.

So with the same logic we could say that if both parents are blind, they should be able to make a blind child at their pleasure and that we can’t possibly tell them otherwise since any life is better than no life at all. This not only has a strong tinge of anti-choice activists’ problematic arguments, but seems to reject the simple fact that if McCullough and Duchesneau deafened their child after he was born, they would’ve swiftly went to prison for child abuse. Quality of life claims do reliably tell us that we should choose to make sure people can enjoy life to the fullest and dictate that we should make whatever accommodations or inventions the disabled will need to do as many of the things the able-bodied do on a daily basis as possible. And when you go out of your way to make sure the future child will not even have a chance to grow up with the benefits the able-bodied take for granted because you want him or her to have the same disabilities as you, you’re being both selfish and cruel. It’s one thing to decide to give a child you know will have Down Syndrome a chance at life and prepare for this difficult task financially and mentally, but it’s completely another to seek those affected by this genetic disorder to ensure that the child will be born with the syndrome. The former is selflessness, the latter is cruelty.

Quite honestly, I’m surprised that an ethicist would actually defend a form of child abuse through technology a skilled doctor could use to fix potential health problems, arguing that we should allow people to do whatever they want to their progeny, and that quality of life is a vacuous notion, although it’s anything but that. If all life is so great, even a life of pain, misery, and frustration, there would be no concept of euthanasia, which allows an incredibly sick or debilitated person on the verge of death to pass on with dignity and end his suffering. I’m all for the transhumanists’ desire to improve the human condition through science and technology, and when we consider their platform, I seriously doubt that any transhumanist would actually support abusing technology to ensure that someone is born deaf, or blind, or mute, or with a certain ailment at the parents’ whim. Society will not allow parents to injure their children after they’re born. Why would it ever allow intentional embryonic abuse to satisfy selfish desires? And why would any ethicist argue against the qualify of life postulate?

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  • Pierce R. Butler

    “Eugenics” is a slippery term. IIRC, what Galton had in mind was selective mating to produce better children; the “eliminate the inferior” impetus came later, and from elsewhere.

    Me, I got my vasectomy long ago – but if I were interesting in actually making babies, as compared to going through the motions, I’d be sussing out all potential candidates for their reproductive potential (and, no doubt, vice versa). That’s eugenics on a retail level, no less than a farmer setting aside the seed from an especially disease-resistant plant for next year’s planting. Only the craziest wannabe social engineer would try to move such decisions into the hands of government (or church, or corporation [oops: too late for agricultural domains], or whatever).

    The new problems in this area arise from the supposed craving of elites to create “designer babies”, or of future dictators to produce supersoldiers, perfect peasants, or other Brave New World post-humans. Even here we run into gray areas: do we really want to deny, say, parents with hereditary health problems the right to filter out spermatozoa carrying specific identifiable genetic flaws?

    This is another one of those areas where even the best-case scenarios will involve a lot of moral ambiguity, high-decibel debates, and trial-&-error.

  • Bob Mendel

    You’re right! I cannot wait for the day when the state has the final word on the genetics my children must contain. Once we can detect genetic variation from the norm, the state must intervene to make sure everybody produces babies that do not vary from the current view on what is genetically desirable. We shouldn’t have the right to reproduce in a way we see fit, the state should dictate to us how we must reproduce. People get building permits to build a house, and then an inspector (a representative of the state) will determine whether or not it has been constructed to the satisfaction of the local bylaws, and force it to be changed if it isn’t. People should get reproduction licenses too. A state reproduction inspector can later determine whether the embryo genetics meets the necessary local reproduction bylaws, and have it changed if it doesn’t. Since no law has force without penalization for non-compliance, people who try to have children without state approval need to be fined and/or jailed. This is the only effective way to get people to reproduce in the way the rest of society wants them to.

  • Greg Fish

    You’re right! I cannot wait for the day when the state has the final word on the genes my children must contain.

    This reply brought to you by Hyperbole Brand® arguments. When you think over the top snark which takes whatever’s written in directions it’s simply not meant to go for no identifiable reason, think Hyperbole!

    On a serious note though, I doubt that people in the developed world are saying that we should allow governments to control the genetic profile of a future child because it’s comic book science fiction at best, and an invitation for a repeat of Nazi Germany and its reproductive policies at worst. However, when parents try to deliberately hurt their children in the womb to ensure that they’ll be disabled when they’re born, what should we call it but abuse?

    Or are you saying that no one should interfere when parents go out of their way to try and injure their children for selfish purposes because that’s the precursor to a state official with a clipboard going to doctors’ appointments and checking every fetus for genetic compliance? If so, recall that this fallacy is called reductio ad absurdum

  • The argument falls down a bit when you compare deaf and blind people. Whether or not you agree with it, Deaf culture does exist, with its own language, literature, and history, and for many Deaf people, being able to share in that culture is far more important a consideration than whether or not they can hear. (“Deaf” is traditionally capitalized when referring to people who belong to the culture, as opposed to “deaf” which denotes anyone in the wider community.)

    Your viewpoint on “cruelty” does not take this very important cultural aspect into consideration. Hearing people do usually take the pathological view of deafness that it is simply the absence of a sense, just like blindness, and anything that can be done to mitigate that loss is good and necessary. But there are very palpable benefits to kids who grow up Deaf in a Deaf household, who tend to develop better language skills and improved self-confidence. There is something completely natural about wanting a child of your own culture that people who dismiss or are ignorant of Deaf culture often cannot comprehend.

    Look at it this way: from a hearing perspective it would be like a blind couple poking out their child’s eyes at birth. From a Deaf perspective it would be like a black couple who wanted their baby to be born black. Again, you may not agree with this perspective, but it cannot be ignored when discussing the ethics of the situation.

  • Greg Fish

    There is something completely natural about wanting a child of your own culture that people who dismiss or are ignorant of Deaf culture often cannot comprehend.

    I’m not sure I understand the argument here. Is it that we should overlook this issue for those who are deaf because they have a certain culture? Is it that being deaf has benefits those who have hearing can’t understand and one of these benefits is better language skills, hence we should look the other way on this?

    Being unable to hear is a disadvantage and no amount of saying that those who are deaf have their own culture diminishes that spoken languages, music, and all those loud noises we use to instantly identify incoming danger, are out of their reach. And it really doesn’t seem natural to want to take away a child’s innate abilities so he would be more like you, and identify a lack of hearing the same way people identify as being Jewish, or Irish, or Arabic.

    So if it’s perfectly natural to want a deaf child because someone is deaf, would it be ok to deafen a child after birth to integrate him/her into the culture? What about every other inability? Are they allowed to claim their own culture and should we also try our best to present their lack of vision, or ability to speak, or genetic disorders in the very best possible light, saying that it’s perfectly natural for them to insist on their children having the same limitations because they’re just trying to raise them in their culture, a culture which is totally impenetrable to outsiders?

  • It’s going to be hard to discuss this for two reasons. One, with all due respect, your words reflect your ignorance of deafness in general as well as Deaf culture. Saying that spoken languages, music, and loud noises are out of deaf people’s reach is just plain wrong. Being deaf does not mean a world of complete silence. Most deaf people and in fact many Deaf people have various degrees of hearing (and every single d/Deaf person I know loves music). And yes, Deaf culture is as valid in its existence as Jewish culture. Two books I highly recommend to begin with are “Seeing Voices” by Oliver Sacks, and “A Journey Into the Deaf-World” by Lane et al.

    In addition, you seem hostile to my suggestion that culture should be considered here. From your response, my position appears impenetrable to you, yet I stated it quite simply in my last sentence: “You may not agree with this perspective, but it cannot be ignored when discussing the ethics of the situation.” I’m taken aback by the leaps you make from considering culture to “looking the other way” on the subject, or it being okay to abuse a hearing child until it became deaf. I won’t deny that there are extremists in Deaf culture (as there are in just about any), and to some of them genetic engineering or eugenics or whatever it takes is fair game in order to have a Deaf child. Just because some people believe that, is that the only logical conclusion from my comment?

    In addition, please compare my words:

    “There is something completely natural about wanting a child of your own culture”

    with yours:

    “…it’s perfectly natural for them to insist on their children having the same limitations”

    There is quite a difference between wanting and insisting. A Deaf couple who is glad their child was born deaf is not the same as a Deaf couple who make active attempts to create a deaf child. It would be easier if we could talk about the same thing.

    My point is that able-bodied (or whatever term you prefer) people who see deafness as the lack of hearing the exact same way that blindness is the lack of sight, are missing an entire world of considerations. I don’t see the need to follow those considerations to absurd extremes, but simply to display a modicum of awareness about a culture whose existence belongs in these discussions.

  • Greg Fish

    Being deaf does not mean a world of complete silence.

    I know there are varying degrees of deafness, but I was trying to stay with the facts of the example in the post. The couple in question is completely deaf and wanted their son to be as well, doing everything possible to ensure it will happen. This is who we are talking about and their actions. Like I said, if their child was born deaf and it was just fine by them, terrific. But the problem is that they deliberately sought to ensure a child’s inability to hear from birth because they were deaf too.

    “… you seem hostile to my suggestion that culture should be considered here.”

    Hostile? I may disagree, but disagreement doesn’t equal hostility. Usually when we talk about raising children to be of a certain culture, we’re talking about historical and religious heritage of their families, not customizing their physical abilities to a certain degree because people with these limits developed their own forms of languages. I can understand cultural considerations, but not when it involves potential harm that’s being justified simply by invoking this culture.

    I simply don’t think that it’s fair to deny a child the ability to hear, just like I wouldn’t let my own nearsightedness get in the way of making sure that my children would have the chance at growing up with normal eyesight.

  • Paul

    “Like I said, if their child was born deaf and it was just fine by them, terrific. But the problem is that they deliberately sought to ensure a child’s inability to hear from birth because they were deaf too.”

    Hmmm, playing devil’s advocate… Something that didn’t occur to me when this issue was first publicised, but did during your article…

    Part of the reason a (naturally) deaf child would be “fine by them” is that they wouldn’t have the stress of trying to raise a child with an ability they lack. The deaf child would be “Normal”, by their experience. That is, they’d feel equipped to raise a healthy deaf child, but not equipped to healthily raise a hearing child.

    From the standards of the deaf community, a deaf child raised by deaf parents would be socially and psychologically normal (all things being equal), but by the standards of the hearing community, a hearing child raised by deaf parents would be significantly developmentally behind.

    This fear may not be valid, the deaf community may not be as closed as they like to believe, and kids are ridiculously adaptable, but you can understand the parents and their supporters believing this to be true. That a hearing child would actually be harmed by being raised by deaf parents.

    Re: Eugenics in general.

    Sigh, I must be evil. Part of me wishes I was rich enough to pay volunteer breeders to create a variety of eugenics programs to see how far you can selectively breed humans. Not out of any racial purity notions, blah, I don’t care what colour they turn out (*), just curiosity driven. Just how intelligent can you breed humans (by whatever criteria you want)? Or how small-but-perfectly-formed? Can you combine weird and rare genetic mutations to produce a new species (or at least a new “race”.) Homo Canis? Homo Aquatica?

    (*Unless it was some really weird colour. Or stripes. That’d be cool.)

    What if you created a community where every single member had a specific rare disability or trait, say a town of unmedicated severe bipolar sufferers, or a town of synesthetes? Would a distinct culture develop over three or five or ten generations?

    If China’s One-Child-Policy had instead been a David Brin-esque uplift red/yellow/green/white card breeders-rights policy, just what would have been the effect on the population. Would it have any noticeable effect? Would culture differentiate individuals more than genetics, making trait-selection worthless?

    We have over 6 billion people on Earth. Can’t you spare me a few hundred million for my experiments? Pretty please?