this is how you end up with morlocks instead of atomic supermen.

Deaf demand right to designer deaf children

Deaf parents should be allowed to screen their embryos so they can pick a deaf child over one that has all its senses intact, according to the chief executive of the Royal National Institute for Deaf and Hard of Hearing People (RNID).

Ballard's stance is likely to be welcomed by other deaf organisations, including the British Deaf Association (BDA), which is campaigning to amend government legislation to allow the creation of babies with disabilities.

A clause in the Human Tissue and Embryos Bill, which is passing through the House of Lords, would make it illegal for parents undergoing embryo screening to choose an embryo with an abnormality if healthy embryos exist. [...] Disability charities say this makes the proposed legislation discriminatory, because it gives parents the right to create "designer babies" free from genetic conditions while banning couples from deliberately creating a baby with a disability.

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61 Responses:

  1. nyankolove says:

    Someday having a disability is going to be trendy, because your parents would have had to specifically choose an abnormal embryo. The more disabling your affliction the more you'll be prized. Down's Syndrome will be for poseurs.

    • I can see that. You can have Down's Syndrome and still have normal intelligence, so it would be a way of making the child different, but not disabled. Hard core people would go for phocomelia, amyotrophic lateral sclerosis, conjoined twins, etc. People who want to make a more subtle statement would choose whatever makes whatever causes only half of the brain to develop.

  2. crasch says:

    While I don't see many benefits to making a deaf child, I can certainly imagine other circumstances where where one might trade off a disability in one area for a benefit in another. For example, would you engineer your child to have a 20 point gain in IQ, if it meant a 5% increased risk in schizophrenia? How about a guaranteed 6'4"+ height at a cost of a 10% reduction in probable lifespan?

    • skreidle says:

      Respeccing will cost you 5 gold.

    • pozorvlak says:

      solarbird explains the benefits below: some deaf people want their children to be deaf so they grow up as part of the deaf subculture. Yeah, I don't understand it either.

      • What if being gay does turn out to be genetic. Should it be considered a defect? Should gay parents be prevented from choosing a gay child?

        Deaf people have formed at tight-knit community out of necessity (they were treated as merely burdens on hearing society). Hearing children (CODAs) are less likely to stay in that community and are therefore a threat to it. I find the concept disturbing and have a hard time reconciling my world view with it, but, then again, I can hear.

    • This could lead to scariness. Completely unsourced, but I remember reading a poll where if given the choice, what conditions or diseases would parents abort a child for. The clear winner was obesity. Apparently Huntington's and fragile x are ok, but we don't want no fat kids.

  3. jabber says:

    And what of the poor and under-privileged deaf people who can't afford such medical intervention? Do they get to stick ice-picks in their hearing-enabled children's ears to make them more like mommy and daddy?

    • gwillen says:

      Have you said this before somewhere else, or is it just a popular image? Because I've definitely seen "icepicks" mentioned before.

      Mind you I think the idea of designer disabled babies is about the stupidest thing I've heard in my life.

    • dr_pipe says:

      while an extreme image, your point is right on; why should we be able to select for traits pre-birth that we would not allow anyone to recreate post-birth? Doesn't have to be ice-picks; a nice clean surgery could destroy hearing. But who would condone that?

      I personally think that any particular modification is equally moral, be it pre-birth or post birth. If it's abhorent post-birth, so it is pre-birth.

      However, I'm an oddball and I don't particularly object to it in either case, in theory. It's a matter of context. If there is a society of all deaf people, then in that context it would be quite reasonable to create deaf children, be it genetically or surgically. In our society of mostly hearing people, the idea is not a good fit and unlikely to be made legal. I frequently disagree with such laws, but they do serve as a fairly good way for a society to define what is a good fit in its own context. We don't approve, we won't make it legal. It may still work out in some other context...

      I also expect to see babies designed with artistic goals - blue skin, scales, whatever the parents think is pleasing. In the future, I mean. Some society somewhere will probably decide that is acceptable. In other societies, it may be done underground. Where the technology exists, it will be used, somewhere, somehow. Morality has little to do with it; we as a society can have a moral stance, but we as a species will do everything it is possible for us to do, though some things may only be done by a very few people in secret.

      • jabber says:

        If pre-birth selection is acceptable, and by extension post-birth "correction" is as well, what about the most extreme form of this - abortion? If we blur the line drawn at the moment of birth, or wherever it is drawn, aren't we obliged to extend the degree of "selection" to the extreme as well?

        But you're right. As time and technology advance, the means to do more and more significant things become more and more common. Eventually, "the common man" will have the means to do the most extreme things, and you're right, morality is irrelevant. It's just a social construct - a method of control of the many by the few - that we flex and set aside when it is convenient to do so.

        • dr_pipe says:

          abortion is an interesting case that I can't believe I wasn't thinking of when I said that! However, I do think there's a difference between a selection/modification/correction, ie something the child will then have to live with for the next 80 years or so, and an abortion/infanticide. With modifications, the moral issue is that we are creating a sentient being which will have to exist in the form we are deciding to inflict upon them. In that sense, if we are good parents we will have the benifits and disadvantages of that form *for them* in mind when making the decision, and I don't think it makes much difference whether it's pre- or post- birth.

          With abortion, however, the child having to live with the form we inflice is not an issue. The question is at what stage in development does it become murder? 2 yrs old? birth? 2nd trimester? etc.

        • [morality is] a method of control of the many by the few

          Hmm, I always saw morality as a method for the many to control the few; peer pressure writ large. Morals are as important as shibboleths and other cultural trappings in the formation and continuation of a community. If we were all individuals without attachments morality would have no meaning, but, of course, "no man is an island" as Donne observed so long ago.

          • jabber says:

            Fair point. I think we can agree that morality is the definition of social norm and that it is subjective. To a point, I agree with you in that morality is determined by the "treat others as you would be treated" attitude - people see as wrong something they would consider to be wrong if it were to be done to them - a communal survival skill-set if you will.

            On the other hand we have authority figures defining what is and is not morally acceptable. Gay marriage, for example. I have yet to see convincing evidence that gay marriage in any way harms straight people. Same with various "deviant" sexual practices by consenting adults. Yet, these are proclaimed, to High Heaven no less, to be immoral. Here, I see morality as a control mechanism of the few upon the many through the imposition of guilt and definition of which pleasures are acceptable and which are not. In situations like these, I think the majority that couldn't care less either way tends to side with what is defined for them as "moral" because approving of the "immoral" is by definition "wrong". Right?

      • solarbird says:

        If there is a society of all deaf people, then in that context it would be quite reasonable to create deaf children
        There is an actual deaf culture, or, arguably, subculture - linguistic separation (in this case imposed by deafness) from a dominant spoken culture combined with a common language tends to create that sort of thing. I don't know anyone of it firsthand - friends of friends and all that; I just know it exists.

        So this doesn't surprise me so much, nor is it even really the first case of something like this, in that I know of cases with deaf adults specifically seeking out deaf partners (or in one case I can think of, deaf sperm donors) to maximise the possibility of a deaf child. And it's all about having a child who will stay a member of the same culture as the parents, as a result.

        • jabber says:

          Quite right. This Deaf Culture can frequently be adamant about NOT providing their children with cochlear implants - which have been shown to significantly improve quality of life vis-a-vis the Hearing World. The frequently stated reason is that their children should be "like them" and that they do not want "deaf culture" to disappear.

          I have a hard time seeing either of these arguments as valid, but I suppose it is just my selfishness that believes children should be given all possible opportunity rather than held back by the limitations of their parents.

          Imagine, for example, working class parents expressly preventing their children from going to college - or poor parents expressly sabotaging their children's chances of making good money - because their children should be like them and "poor culture" is threatened by the possibility of children excelling beyond the means of their parents.

          I guess it comes down to whether or not one sees disability - or a disadvantage of any sort - as either an impediment or as a "lifestyle choice".

          • solarbird says:

            (Thanks, LJ, for eating my comment. Let's try again.)

            All perfectly valid. And you don't have to imagine the "working-class" version of that; it's a very real phenomenon in many if not all classes. (C.f. "class traitor." That's a cultural tag, really.)

            The problem is that cultural identity is very specifically transrational, and as such, not so easily handwaved away via analogy. As a member of a vanishingly small culture, emotionally, I understand what they're thinking very well. Rationally, I wouldn't go where they do with it - but then, most people don't think rationally (and I use that term in the strict sense, not in the loose/popular sense of "not crazy") and, for that matter, aren't very good at it when they try. So emotional thought can't be ignored here.

            And like I said, emotionally, I see how they get there, so you'd have to address that, if you wanted to talk to them about it. That's mostly not what's happening in these replies, though; mostly I see emotional processes driving most of the replies, too.

      • We don't approve, we won't make it legal.

        It isn't a matter of making it legal, it is a matter of not making it illegal. There currently is no law against it. The House of Lords is currently looking at a bill to make it illegal.

        but we as a species will do everything it is possible for us to do

        This is part of natural selection. Current social mores may one day be are detrimental to survival of the species.

  4. jarodrussell says:

    Deaf people wanting deaf babies? Incredible! Next thing you know, Christians will want to screen for heterosexuality.

    • jackbrinks says:

      We're all born hetero, just ask Christians. Homosexuality can be cured.

      • jarodrussell says:

        I can cure your dibilitating ability to walk too, just give me a chainsaw. :)

        • jabber says:

          Yep And I'm sure there are just as many gays who wish they were straight as their are deaf people who with they could hear. Freaks! They should just embrace the Crosses God gave them and be happy with who they are. So should all those with the gift of terminal cancer - it just means God can't wait to see them in person!

      • solarbird says:

        The core of that branch of the party line is that there is no such thing as homosexuality per se'. Actual lesbian, etc. people don't exist. There are only heterosexual people acting badly, usually due to psychological dysfunction caused by either sexual abuse or "bad choices," which can occur even in infancy, and can usually be blamed on the mother, as is typical for all social ills within this subculture. This in turn relates to the asserted inability of homosexual people to actually have "real" relationships or feel "real" love, which all goes back to the same broken early-50s psychology ideas about GBLT people.

    • editer says:

      I read a book some time ago (I think the title was The Gumshoe, the Witch and the Virtual Corpse) in which a gay gene had been discovered, and many parents aborted fetuses that were found to have it. Catholics did not do this, so after a couple of decades crucifixes and other Catholic images became the equivalent of pink triangles. (This wasn't the point of the book, but it figured in the plot. Not a bad read if you can find it.)

    • jonquil says:

      Yo, speaking as a Christian, we aren't all homophobe assholes. The right-wing Christians claim they speak for all Christianity. They don't.

      • jarodrussell says:

        Speaking as a Christian, I only meant to imply that screening to ensure children were born deaf was aabout as stupid as those bad apples.

  5. unwoman says:

    when they're teenagers and their hearing peers are getting really into music. Though unfortunately a really public minority of deaf people want a society in which everyone's deaf, or maybe they just think deaf people are superior, I think this is more a right that they're demanding rather than something they'll really use. I hope.

  6. buz says:

    Seems like grounds for some type of assault charge against the parents.

    • If statistics show that blonds really do have more fun, is it assault to not pick the blond child out of the available embryos?

      Statistics do show that tall, handsome men make the most money . Is it assault to not choose the male child with the best chance of being both tall and handsome?

    • prog says:

      If I'm reading the article correctly, they don't make the kid deaf; they just make sure the embryo exhibiting deafness genes (?? talking out of my ass here) gets born instead of the ones that appear to be hearing-enabled.

    • johnny_blog says:

      I don't see how this could be considered assault while abortion is not. The parents aren't causing the child's deafness, merely selecting which fetus they'll carry to term: the doctor gives the parents the joyful news that they have a healthy child on the way, and the proud parents step next door to have the child aborted so that they can try again hoping for better luck next time. Legally, it seems no different than the commonly accepted case of parents aborting a child who carries the potential for Down's syndrome.

      • buz says:

        If I found out that I was deaf because my parents designed me to be that way - the LEAST I would do is sue.

        If I was aborted, my options would be severely limited.

        • johnny_blog says:

          I don't understand what legal recourse you would have in a case like this though. If your parents found themselves in a position where they could either bring you to term, knowing and even planning for you to be born deaf, or aborting you, I can't see where they'd have done anything illegal. Ill-advised and self-centered, certainly, but not legally actionable.

          But of course, IANAL.

  7. kencf0618 says:

    Speaking as a severely deaf person who has never been part of (profoundly) deaf culture, I consider this to be entitlement run amok.

  8. artlung says:

    somewhere in britain, a lawyer is conspiring to bring to term and be hired by the un-chosen. once born, they can sue their genetic parents for neglect.

  9. korgmeister says:

    You know, there's some people who, through the situations by which they want to bring a kid into the world, basically openly declare themselves child abusers.

    The sad thing is, they aren't even aware that's what they're doing.

  10. bifrosty2k says:

    This reminds me of the vegan baby parents...

    • Parents who want to have a child made out of cruelty-free foodstuffs? I would think an A.I. would be the best bet.

      • I assume Mr/Mrs/Little Miss bifrosty2k was referring to the briefly-famous event where a couple of crazy* vegan parents refused to give animal products** of any kind to their baby, and it died.

        * also stupid
        ** so, wait, does that mean that mom didn't consent to breast feeding, or that they thought that any consumption of animal products was evil? Either mom's astoundingly selfish/spiteful, or they're unclear on the concept. Either way, the mind boggles.

        • Yeah, but it is more fun to misunderstand him/her/it and start thinking about "vegan babies" the same way you think about "vegan chicken patties".

  11. lifelike001 says:

    hey, its the same argument used to allow circumcision. the parent/child relationship is the only one where society not only allows but recommends gross abuse - why should the unborn get off easy?

    what i dont get is how people can breed without having first decided how they will reply the day their child turns to them and says they wish they were never born.

    • "You think you have it bad? Imagine still being in womb after thirteen years!", is the best I can do one short notice. If the kid is a little brighter and says "I wish I was never conceived!" I recommend one of the following

      • So do I son, so do I.
      • Well, there is something you can do about that.
      • Do I have to sell you to a sweat shop you little clique spouting...
      • Yeah, I haven't been pleased with the ROI either.
      • What a fascinating paradox, let's diagram the sentence...
      • lifelike001 says:

        hahaha given the same short notice, id probably grab the dear lady wife (or dandy gentleman husband as the case may be) and launch into an inappropriately amusing yet graphically detailed re-enactment of just how said situation originally arose, along the lines of "and then i was all like BONE! BONE! BONE! and she was all like OOH BIG DADDY I CAN FEEL YOU IN ME!!"

        should i ever reproduce, child protective services will probably be on my households speeddial.

  12. taniwha_nz says:

    I'm fairly sure being Deaf is not a disability.

    • lifelike001 says:

      and im fairly sure i saw elvis riding barbaro into the 7-11, but i dont let reality bother me. :P

    • 7ghent says:

      I guess you're an idiot, then.

    • A few definitions of disabled are

      • markedly unable to function as a consequence of injury or illness
      • a disability is a condition or function judged to be significantly impaired relative to the usual standard of an individual or their group
      • unable to function at normal capacity

      The standard against which people are judged is the norm of the human race. The ability to hear is part of that norm. By that norm, being Deaf is a disability. It may not be as severe a disability as it once was, but it is still a disability. My nearsightedness is a disability, but it can be mitigated through the use of glasses, contact lenses, or various surgeries. What I don't understand about radical Deaf culture is the strong desire to not be able to hear. I even understand not wanted to use some technologies to mitigate the disability; I wear glasses because I hate contact lenses and the surgeries do not seem wise to me unless there is some other reason to have one.

      If you are saying that disabilities don't make a person a useless drain on society, well, welcome to the 21st century. We have had that argument. The general answer seems to be that many disabilities can be mitigated to the extent that they don't exist for most purposes and some changes can be made to processes and things that make some of those disabilities that exist even after mitigation relatively unimportant (and these changes often have unexpected benefits: OXO kitchen utensils made for people with arthritis are easier to use even for people without arthritis, accessibility standards in web page design can aid in computer interpretation of the content, etc.). But I don't think building disabilities into your children is a particularly good idea. Oh course, I don't think genetic screen is a very good idea either.

      That said, I don't believe it should be any more illegal to select a deaf embryo over a hearing one than to choose a redhead over a blond.

    • kencf0618 says:

      You are mistaken.

    • herbie says:

      If I'm not mistaken (and I easily could be), isn't big-D Deaf supposedly a separate-though-related concept to little-d deaf? I thought you could be one without being the other. If so, then being Deaf has absolutely nothing to do with this conversation.

    • jabber says:

      Lacking one of the senses is as much a disability as lacking one of the limbs, or an equally significant fraction of "normal" intelligence.

      If you are unable to hear the door bell, the ringing phone, the horn or a bus speeding your way, or the instructions of a gun-waving cop, you're worse off that "normal" and being "worse off than normal" is the same as being disabled. Eh?

      Or would you also say that anorexia, diabetes and losing one's legs in a war are all "lifestyle choices"?

    • ilcylic says:

      No, that's being "def".

  13. prof_null says:

    This nuts - Isn't it a bit academic, we can't really select for any genetic property such as deafness in a human embryo and assume it will work out, right? This is not proven technology is it?

  14. luserspaz says:

    My sister-in-law is deaf, and my wife (who is only a year younger than her) was able to sign before she could speak. My wife maintains that Deaf culture is pretty screwed up, but she still believes that this legislation is wrong.

    Personally, I think it's a slippery slope towards mandating certain genetic choices, which I find somewhat offensive. Also, I'd like to select my transhumanist qualities myself, not have them foisted upon me by someone else.