Patterico's Pontifications

12/5/2006

Parents Choose Genetic Defects for Their Children

Filed under: General — Patterico @ 10:12 pm



AMac sends along the link to an essay in the New York Times titled Wanting Babies Like Themselves, Some Parents Choose Genetic Defects:

Wanting to have children who follow in one’s footsteps is an understandable desire. But a coming article in the journal Fertility and Sterility offers a fascinating glimpse into how far some parents may go to ensure that their children stay in their world — by intentionally choosing malfunctioning genes that produce disabilities like deafness or dwarfism.

I’m just left shaking my head. I simply can’t fathom how parents could deliberately choose to inflict a disability like deafness on their children. This strikes me as the height of selfishness, which is the antithesis of what good parenting should be about.

Am I being too judgmental? I don’t think so — but if anyone does, I’m sure they’ll let me know in the comments.

36 Responses to “Parents Choose Genetic Defects for Their Children”

  1. It goes hand in hand with the inability of the multi-culti relativists to pronounce anything better or worse — only different.

    It’s like deaf activists opposing cochlear implants for children, because to give them the gift of hearing implies that being deaf is in some way a handicap.

    Well, read my lips: Duh.

    Can you imagine denying your child the opportunity to hear music? To thrill to Kenneth Branagh’s St Crispin’s Day speech from Henry V?

    Not yet being a parent, I’ll defer to Patterico’s expertise, but I’d like to think that I’d want my children to be better than me, to enjoy more opportunities, and therefore, I’d never do anything to ensure that they’d have some disabilities that would make life more difficult for them.

    And, yeah, I said “disabilities,” ’cause midgets and the deaf and blind aren’t “differently abled,” they’re at a significant disadvantage when compared to those without handicaps.

    Mike Lief (e6260e)

  2. Unfortunately, life in America is just too darn safe these days… way too many idiots actually live long enough to procreate. Natural selection will eventually catch up to them, though.

    Good parents want their children to be better than they are; my dad was always the most proud of me when I finally did something better than he could. It’s a shame some parents just want kids that are the same. They obviously don’t get the point.

    Justin (747191)

  3. Because I don’t believe that “human life begins at conception,” I support a woman’s right to choose an early-term abortion. (Stated for context, not to spark an off-topic discussion.) While I’m repulsed by the choices of these parents, can I logically condemn them?

    Yes.

    Prospective parents who entertain these choices for their unborn children fall somewhere on a scale that has immoral selfishness at one pole and mental illness at the other.

    The pre-implantation manipulations described in the essay are actions that seek to cripple fetuses, that will be babies, who will be autonomous individuals–citizens.

    Two thought experiments: a deaf mother intentionally ruptures the eardrums of her infant to make him deaf as well. A deaf father infects his child with mumps and refuses to have her treated, for the same reason. Parental choice or child abuse?

    But it’s hardly news that some evil and nutty people want to have kids like themselves. The novelty is that this application of genetics requires the active cooperation of health care professionals. Is that ethical?

    Another thought experiment: a paraplegic mother-to-be presents at the hospital, and demands that a prenatal surgeon sever her fetus’ spinal cord at the thoracic level. Is it ethical for the surgeon to comply, or to refer the patient to another surgeon?

    On reflection, that’s the most troubling aspect of the essay: while some of the human-genetics practitioners would not perform the procedures themselves, they believed that it was appropirate professional practice to refer these prospective parents to a doctor who was willing to do so.

    AMac (b6037f)

  4. Not to go all AOL “D00D ME 2” on the subject, but as a fairly-new father myself (of the most precious 11-month-old girl EVAR) I must second AMac’s armchair diagnosis. These pre-child abusers should be referred to mental health officials, not enablers.

    PCachu (e072b7)

  5. I was so appalled by the article that I missed the point made by AMac; he’s right, of course.

    Godwin’s Law must be violated.

    Sixty years ago, this kind of experimentation on children took place under the supervision of Josef Mengele — and most certainly against the will of the parents, if they were still alive.

    The world was horrified to hear that physicians had violated their oaths to “do no harm” in the service of a monstrous ideology.

    Now, avuncular doctors chuckle kindly and pat would-be parents on the knee as they discuss inducing genetic defects by using eugenics, not to create a Master Race, but to satisfy the vanity — or neurosis — of the manifestly unfit couples by harming their children.

    The medical profession is a reflection of Western culture, and I can’t help but wonder if thirty years of legalized abortion — and the remarkable acceptance of physician-chosen infanticide in Europe, without input from the parents — is part of the process we’re seeing here.

    Mike Lief (e6260e)

  6. I don’t know if its similar with dwarfism, but its pretty well know that the deaf ‘community’ can be pretty damn defense/insular. There have been several cases of deaf schools where sex abuse has been not reported/ignored to prevent damaging the ‘deaf community’ (I really should dig up the links for this…). So while this doesn’t surprise me in the least, I am still completely disgusted by it, and think any parent that willingly inflicts deafness on thier child should be arrested for child abuse (Along with the doctor that helped them do it).

    Ryan Frank (83c643)

  7. It sounds like these parents are still defensive about their own limitations, and have not accepted them for what they are. Their choice to intentionally inflict the limitation on another human will validate their idea (oh please!let it be true!) that it’s not a “limitation” at all, but merely “different” the way that brown hair is different from red hair.

    I know that’s what the self-esteem experts tell you to tell yourself, but it’s doctor-encouraged lunacy. Being deaf is a limitation. It doesn’t mean you’re a worse person than others (unless you seek to likewise cripple them without their consent; in that case, yes, yes you are a worse person).

    jinnmabe (719cc0)

  8. PGD for Genetic Defects…

    As a parent, I know how futile it is to try to make my child something he’s not. And that extends to his genetic make-up. The burgeoning field of preimplantation genetic diagnosis (PGD), however, makes it possible for parents to exert a determin…

    Genetics and Health (3a1d25)

  9. What will these parents tell their children when asked, “Why did you do this to me? Why did you choose to have me be deaf? Why did you decide I should be a small person?”

    Keeping in mind that the procedure doesn’t actually cause the mutations, just selects for them -that “person” was always destined to be that way if allowed to survive.

    BTW, can I opt to not have any of my tax dollars go towards assisting these parents with the extra costs involved in the raising of their children? I have no problem with, for example, public schools using extra resources to help those with special needs. But if those special needs were the parents’ choice…

    John Taznar (bfa3c4)

  10. As someone who struggles with the ethical ramifications of having a child at all (I remember as a kid hating my parents sometimes for dragging yet another human life into this cold, cruel world) I think this could be a slippery slope.

    If you condemn parents for chosing a disability for their child, do you condemn parents who choose to have children when they know their children will very likely have a disability? For example, say the parents who chose deaf DNA for their kids were instead told that they had a 75 percent chance of conceiving a deaf child. Would they be unethical to have a child anyway?

    Once you’ve pondered that, what about parents who are both merely very short – under 4’10. Or parents who both have serious vision problems. I remember seeing a family at six flags amusement park a while back — mom and dad had thick glasses that made their eyes look huge — and every one of their kids wore glasses too. Shouldn’t they have known they were going to pass on their poor vision to their kids? Was it irresponsible to have kids they were probably dooming to a life of blurred vision or clunky glasses or thick contacts?

    Finally, to take it almost all the way down the slope — say you’ve got a young couple both of whom have a slightly below-average IQ, no savings, no skills to speak of, no post-secondary education. In today’s America, their kids are effectively disabled — low economic status, parents without the ability to teach them the skills they would need to better themselves beyond a high-school education, and probably a below-average IQ. Is it really responsible to bring a child like that into the world?

    Once I get to the bottom of the slope, I’m back where I started . . . I really wonder if it’s ethical to have kids at all. I won’t say it’s not ethical to have kids, EVER — but I feel like I can’t find an objective spot to draw the line as to where you SHOULD have kids, and where you shouldn’t.

    Phil (88ab5b)

  11. And i’ll bet some parents even want their kids to grow up to be creationists!

    actus (bb04e2)

  12. Some people, I’m thinking, shouldn’t be parents.

    I’ve tried a couple of times to say a great deal more, but can’t express it well without profanity, so I’ll stop.

    htom (412a17)

  13. actus, just out of curiosity, do you envision you & your partner adopting a child ?

    Desert Rat (ee9fe2)

  14. No, you are exactly right. The ultimate triumph of identity politics over common sense. And to inflict something like this on a child???

    The states need to get busy and legislate that this is the exact legal equivilance of child abuse–in the case of the deafness gene, of lopping off your’s offspring’s ear.

    Daniel (a90377)

  15. It’s interesting that the child wouldn’t really have much cause for complaint; the child never had any chance of being born without the disability. Only a *different* embryo could have done that.

    Patterico (de0616)

  16. Off topic — Patterico, i’ve been unable to comment all day; every comment I post gets swallowed up. I can trigger the “you’ve posted too many times in too short a time” error, but nothing ever appears as a comment to a story or in the new comment sidebar.

    aphrael (9e8ccd)

  17. actus, just out of curiosity, do you envision you & your partner adopting a child ?

    If we’re infertile, and I wanted children, I would argue for it.

    actus (bb04e2)

  18. Phil, do you not see the difference between (a) parents realizing and accepting the possibility that their child might have a disability, and (b) parents deliberately hoping and/or choosing for their child to have a disability?

    aunursa (40d6e0)

  19. Phil #10,

    The slippery slope you describe is thought-provoking. Aunursa’s comment is a partial answer. Right now, I don’t have a better one.

    But your thought experiments don’t require the active professional participation of clinicians (though they might…). The affirmative conception of medical ethics as allowing or demanding participation with these malign applications of PGD is an interesting problem in its own right.

    AMac (008c73)

  20. I think there is a significant difference between a parent who hopes his child has a disability and a parent who hopes his child has a disability like his. Presumably the parent believes the child could handle and might even benefit from the disability. As the child of a disabled parent and as the parent of 2 disabled children – all of whom apparently have the same genetic flaw – I assure you that families who share specific disorders learn how to cope and bond in a special way.

    In candor, I would not chose a disability for my child if I could avoid it but I am wary of designer genetic alterations. Perfection may not be as simple as adding this gene or deleting that one. Our genetic make-up may be a complex interrelationship where if changing one gene wil affect others, much like tipping one domino in a chain of dominoes. So, in theory, I wouldn’t want to pass on genetic flaws. In practice, I might be willing to take the problems I know I can deal with.

    DRJ (a41dd4)

  21. Thanks DRJ, you write about particularly relevant personal experiences. Your point about the complexity of genetic (and gene/environment, too) interactions is assuredly true. Yet the Brave New World that futurists have been yammering about for some time is now really in sight, when it comes to the prospects of technically feasible designer genes (I just heard a talk about this sort of strategy as a therapeutic approach for a cancer of the brain–not germline modification, but some of the DNA manipulations are the same).

    The great range of potential “flaws” that a parent might want to choose for their offspring is part of what makes broad statements on the subject difficult.

    Earlier I mentioned, “make my child paraplegic, like me.” The NYT essay discusses “make sure my child is deaf” and “make sure my child has dwarfism.”

    What about Phil’s “like me’s” of coke-bottle glasses, not real smart, kinda ugly?

    Milder still, not-blonde, personality of a loner rather than gregarious, slightly shorter than average?

    There’s a gradient from “defects” to “traits.”

    AMac (008c73)

  22. Best for your child, or best for you?…

    Patterico highlights this story of an ugly twist to “designer children”In other words, some parents had the painful and expensive fertility procedure for the express purpose of having children with a defective gene. It turns out that some mothers and…

    Darleen's Place (1650a7)

  23. AMac,

    This is a difficult subject but fortunately (as you note) it’s one that science is solving as we speak. I agree there are gradations from defect to trait. I also think there is a difference between selecting an embryo that already has certain defects or traits and modifying an embryo to add those features. My comment was directed at those instances where parents might be tempted to alter or remove a defective gene from an existing embryo. I can’t imagine asking medicine to add a defect to an embryo that doesn’t have it.

    In the case of an embryo that has a defect that we can successfully alter (or we think we can), I would elect to alter the genetic defect or trait if I viewed it as a significant defect. I would choose otherwise if I view the defect as not significant enough to risk the therapy. Reasonable parents can vary on how much risk they are willing to assume, apart from the religious aspects of this decision.

    Like you, I know we are at the cusp of designer genes. In fact, we’re there already. Our children are NHGRI patients who will participate in gene therapy during their lives, perhaps in the next 3-5 years. That doesn’t make my views on this subject correct but it does explain why I am more ambivalent than the typical commenter.

    DRJ (a41dd4)

  24. Phil,

    Since you seem to be struggling with ethical questions let me help you out. You are trying to make Rubik’s cube puzzles out of some very simple choices.

    To answer your questions one at a time.

    No, it is not unethical to have children. Regardless of what PETA has to say, the elimination of the human race over the next couple of generations is not an admirable goal. Try to think things through a little.

    It is ethical for short people to have children. Try not to take Randy Newman’s songs literally. They weren’t meant that way.

    It is ethical for people who need glasses to have children. This one cracks me up. You notice an entire family sporting thick glasses and question the ethics of the parents granting their children life. In addition, you at times have hated your parents for bringing you into this cold, cruel world.

    Maybe you should quit hanging out at Disneyland, the worlds’s happiest place. Those long lines can make anyone grouchy.

    Below average IQ’s. This is interesting. By definition, half the population is below average. Think that one through, if only the above average have children, the goal of eliminating the entire human population will still be achieved, but it will take a few generations longer. By the way, have you seriously checked out which side of the IQ divide you inhabit?

    The only serious ethical question is the case of the family with a 75% chance of having a deaf child. Although everyone has to decide for themselves you should think seriously about questioning the ethics of two people who decide to take such a risk whith the full knowledge that they will try their level best to raise a happy child whatever struggles he may face.

    The only reason this is a news story is the fact that choice to intentionally inflict a disability on a child is such a wildly unethical decision that 99.9999 of the public finds it repulsive. A jounalistic sure thing. It is sort of like discussing the ethics of cannabalism. No wait, maybe you shouldn’t go there.

    Pepster (8ba53c)

  25. Pepster, I admire your sense of ethical certianty.

    I do disagree with you on one point in your post(although maybe I just can’t grasp your logic). Not allowing people with below average IQs to have kids would not eliminate or even reduce the population, as long as people with above average IQs had an average of four or more kids per couple.

    You would reproduce the population size every generation, and ensure that the dumber half doesn’t reproduce. That would maintain a balanced population size, and over time would probably raise the IQ of the population, at least for a while (who knows what the long-term effects would be in terms of other problems getting passed on).

    As for your other ethical conclusions, they’re just that — conclusions. Unless you explain your reasoning, I can’t tell whether I agree with you or not. I know that I’m not convinced of your conclusions, but I can’t say you’re wrong.

    Phil (9638ab)

  26. But Phil, by definition, half the population would always be the dumber half. Your solution would raise the midpoint but it wouldn’t eliminate the bottom half. And while it’s good to increase the intellect of the population as a whole, it’s also good to enhance other personal qualities. Presumably a truly diverse population (including people who wear thick glasses, hearing aids, or even suffer with more debilitating conditions) could produce diverse qualities that might not be produced if everyone focused on being smart.

    DRJ (a41dd4)

  27. Phil,

    Thanks for correcting my math. Although with current demographic trends getting many “upper half” types to have four children will be a real challenge.

    As for your ethical questions. Are you really struggling with whether the continuance of the human race is ethical? Whether short people or people with glasses should entertain the notion of foregoing families? Even the people who embraced the eugenics movement in the early part of the 20th century never went this far. You are putting yourself in with some real evil types if you really think these are reasonable discussions to have. It is just a short step from declaring something unethical to passing a law oultlawing that behavior. Back up for a minute and examine your frame of reference. This is like having a discussion about whether rape or murder is unethical. Just look at the example of the most recent culture to fully embrace the view of creating a superior genetic society.

    Pepster (8ba53c)

  28. Pepster: “Are you really struggling with whether the continuance of the human race is ethical?”

    That’s not what I’m saying, and I feel like I’m being straw-manned here. I don’t see how making more people is justified merely by the fact that you’re making more people.

    Are you really convinced, on an abstract level, that a simple reproduction of the entire human race as a whole, in the state it’s in right now is necessarily a good thing?

    My first instinct was that you were religious — but then I remembered that many religions generally believe that humankind is a bunch of doomed sinners who either deserve eternal damnation or, at the very least, require divine intervention in order to get them back on track from the horrible fate they’d suffer if left to their own devices.

    So I really have no idea where you get your shining, certain belief that, in planning for the next generation, simply reproducing more of the current generation is a good thing. Unless you’re catholic . . . but the logic there isn’t that more people are better *as they are* but just an optimism about people’s eventual chances of getting better with divine help.

    I do fully agree with you about anyone who actually tries to legislate a better race of human beings through genetics. Yes, I agree Hitler was Bad — you’re not catching me in that sneaky trap! I’m not saying I know how to make human beings better, or which human characteristics are necessarily desireable and undesireable. The idea of some other mere human mucking about claiming he knows how to make us better scares me a lot.

    However, I certainly don’t see anything unethical about somebody looking around at the state of human affairs and saying “geeze, as I see it, I really won’t be helping the situation here by just up and creating more people.”

    Phil (88ab5b)

  29. DRJ, you wrote in #23:

    I can’t imagine asking medicine to add a defect to an embryo that doesn’t have it.

    But that’s awfully close to what the parents in the essay are doing: they are seeking children who share their phenotype.

    Today, they can use instruct physicians to use PGD to select the embryo with the desired defect (deafness, dwarfism). Tomorrow, it will be possible to instruct gene-therapists to add the desired defect to any embryo. The technology isn’t here quite yet, but the moral questions faced by the prospective parents and by the physicians are about the same.

    Brave New World.

    The parents profiled in the essay have put down their markers, “of course we have the right to demand children who are as deaf/short as we are!”

    I’m resigned to living in a world full of people who are only restrained by the letter of the law. These parents and I don’t share much common ethical ground.

    I’m reflecting on the professional conduct of the physicians who think it’s a good thing to help people like this on their designer-defective child quest. (The naked word “good” is often dressed in the fine clothes of “non-judgmental” in the helping professions; I don’t see much difference in effect here.)

    Slippery slope question. If, in the name of satisfying prospective parents, it’s okay to insert a gene to create children who are deaf or suffer from dwarfism, is it therefore okay to insert a gene that causes paraplegia? How about one that causes the child to die at age two, because babies are cute but toddlers are annoying?

    If the parents’ wishes are paramount, these scenarios are equivalent. If parents’ wishes aren’t paramount, then what are they to be balanced against? And are the physicians using PGD to select defective embryos for the parents in the NYT essay engaged in that balancing–or are they untroubled by any qualms as they ‘follow instructions’?

    AMac (008c73)

  30. AMac,

    First, I think that the law would ultimately opt for a balancing approach on this issue because that is the default position for most privacy issues in American law. However, I don’t think current laws take a balancing approach to abortion decisions, and I submit that abortion is a markedly similar legal issue to the issue you raise. Therefore, in the foreseeable future, we might well see an all-or-nothing approach to this issue where it would either be allowed without limits or denied entirely.

    As long as we have abortion on demand (and basically we have that now), I think that the parents’ desires will be similarly conclusive in this area, subject only to the physician’s ethical constraints. In other words, parents will be free to find a physician who will carry out their wishes. Free will is king when it comes to baby-making in today’s world. If, on the other hand, Americans adopt more fetus-friendly legal limits on abortion (e.g., balancing the fetus’ right to live with the mother’s right to choose), I think those limits would apply to your hypotheticals as well.

    Second, I don’t agree it’s a slippery slope between parents who instruct physicians to select an existing embryo with the desired defect and parents who instruct gene-therapists to add the desired defect. I think there is a clear distinction between these two cases. In the first case, the defective embryo exists independent of any genetic modification. The second case requires genetic modification of the embryo to create the defect.

    From an ethical standpoint, the result in the second case is offensive because it requires an affirmative act – the act of modifying the genetic make-up of the embryo to add a defect. If you view selection as an affirmative act, then you would probably view the first case as equally offensive. I view selection as a choice rather than an independent affirmative act, and the most I think society should do is require the parents receive counseling to ascertain whether they are ready to take on a special needs child with that defect.

    DRJ (a41dd4)

  31. DRJ,

    Thanks for your response, you’ve made (or emphasized, in some cases) good points.

    What I’m reflecting on is perhaps represented by your term, “the desired defects.” The parents in the essay would contest that vocabulary. To them, dwarfism and deafness are attributes. I don’t think they would find much of a distinction between selecting and adding a crucial attribute to produce the child they wanted.

    If so, that leaves the physicians. Do they see a large moral difference between selecting a trait and adding it? I hope so, just in the sense that the practical damage to be via selection is much less. My most horrible example stays hypothetical if the PGD practitioners’ code of ethics follows your path.

    AMac (008c73)

  32. I agree with your point about terminology. If I could re-write my comments, I would use the term “trait” rather than “defect.”

    As for physicians, I think most would see an ethical dilemma and would act according to their personal moral compass. However, I don’t think it would take many willing physicians (especially if they decided to advertise their services) to dash your hopes if you think physicians will stem this tide, absent action by the government or the AMA. The real hope is that parents who choose “traits” like this will be few and far between.

    There is a related hypothetical that I find interesting: What if a parent wanted to select an embryo (or add to an embryo) that had Disease/Condition X? The reason given was that there is evidence that people who have Disease/Condition X are less likely to get Disease/Condition Y. For example, what if the parents wanted a child with the sickle cell gene because there is evidence it could protect the child from malaria and they plan on living in an area where malaria is widespread. What do you do?

    DRJ (a41dd4)

  33. There’s an example where a “defect” really is a “trait”! And you’re right, there are probably quite a few of these.

    I agree, too, that with a large number of physicians in the country, parents aspiring to most any plausible selection or alteration will find somebody willing to assist them.

    It’s both chilling and remarkable to see this moving from idle parlour chatter to (in a few more years) a real and vexing issue.

    AMac (008c73)

  34. I agree. Undoubtedly medicine will give us a reason to revisit this discussion in a year or two, if not sooner.

    DRJ (a41dd4)

  35. Phil,

    Thanks for your reply. I guess it comes down to an individual decision. I see nothing wrong with an individual deciding for him (or her) self to forgo having children. If you don’t feel having children will add to to human condition then you shouldn’t procreate. Where we disagree is the notion that it is (or might possibly be) unethical to have children in general. The Shakers were of that belief. The logical extension of that is the eventual end of the human race. With all its problems I still don’t see that as an admirable goal.

    Further, I have seen no justification or rationalization to base the decision to procreate on whether the offspring are likely to need glasses or turn out short of stature. Where does this come from? I do find human life exceptional and of special value. No, I am not Catholic or particularly religious. Our culture, laws and customs are widely based on this belief. Societies that don’t hold this belief are typically nasty places to live.

    “geeze, as I see it, I really won’t be helping the situation here by just up and creating more people.”

    I can agree with that sentiment. It doesn’t help the situation to merely bring more people into it. Raising decent human beings, however, is the goal. Anyone who doesn’t take that obligation seriously certainly has an ethical problem, in my opinion.

    I am aware there is lot of evil in this world. But if you have come to the conclusion that the human condition is so horrible you consider hating the people who brought you into it maybe you should try associating with a new group of friends. A change of perspective might do you good. Hanging around Six Flags wondering why the four-eyed parents could possibly bring four-eyed children into this horrible world is kinda out there. Hop on the roller coaster fling your hands in the air and try to have some fun. I betcha that was what the kids with coke bottle glasses were doing.

    Pepster (8ba53c)

  36. This sounds just like the inabbilty of our elected politicians to be able to remember their promises they make

    krazy kagu (5e1710)


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