‘self-directed eugenics’?

by Grace aka costofcollege

What If Tinder Showed Your IQ?
A report from a future where genetic engineering has sabotaged society.

As genetic science becomes more precise, the potential for editing your unborn child’s genes to select for higher intelligence is growing. With that, however, will come a cultural shift in how we value intelligence—and how attractive it is when seeking out a potential partner. Parents will have to grapple with not just their unborn child’s chances of being smart, excelling in school, and getting a job, but also with their chances of getting a date.
We imagine a future where dating apps like Tinder don’t just let users judge others based on pictures of themselves, but on their intelligence scores, too.

Although this article is about an imaginary future, it’s possible to imagine the serious downsides of reprogenetics.

But there was a catch. There was always a catch. The science of reprogenetics—self-chosen, self-directed eugenics—had come far over the years, but it still could not escape the reality of evolutionary tradeoffs, such as the increased likelihood of disease when one maximized on a particular trait, ignoring the others. Or the social tradeoffs—the high-risk, high-reward economy for reprogenetic individuals, where a few IQ points could make all the difference between success or failure, or where stretching genetic potential to achieve those cognitive heights might lead to a collapse in non-cognitive skills, such as impulse control or empathy.

Against this backdrop, the embryo predicted to have the higher IQ also had an eight-fold greater chance of being severely myopic to the point of uncorrectable blindness—every parent’s worst nightmare….

The early proponents of reprogenetics failed to take into account the basic genetic force of pleiotropy: that the same genes have not one phenotypic effect, but multiple ones. Greater genetic potential for height also meant a higher risk score for cardiovascular disease. Cancer risk and Alzheimer’s probability were inversely proportionate—and not only because if one killed you, you were probably spared the other, but because a good ability to regenerate cells (read: neurons) also meant that one’s cells were more poised to reproduce out of control (read: cancer).3 As generations of poets and painters could have attested, the genome score for creativity was highly correlated with that for major depression.

But nowhere was the correlation among predictive scores more powerful—and perhaps in hindsight none should have been more obvious—than the strong relationship between IQ and Asperger’s risk….

Do you care about this?  What is your prediction about how this will go?  Mostly positive, or ruinously negative?  And for both today and tomorrow, how do you feel about your offspring marrying someone with a much lower or higher IQ?  Does it matter?

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107 thoughts on “‘self-directed eugenics’?

  1. I would worry about my kids marrying someone with either a much higher or much lower IQ. I suspect that one partner would get very bored if there was a large mismatch in IQs.

  2. To the extent that competitive college admissions – and thus social grouping in 20-somethings who are selecting spouses – is a proxy for higher IQ, this is already happening. There are some researchers who think it is at least a partial explanation for rising Asperger’s diagnoses IRL.

    Comparable IQ would be one of many factors I hope my kids consider in selecting spouses. I would much rather they select a spouse with a 30 point lower IQ than a sociopath or really self-centered person with the same IQ, though.

  3. “What is your prediction about how this will go?”

    Basically, like this: http://www.wired.com/2014/05/victorian-postcards-predict-future

    Agree with Murphy. But I’d expand it beyond IQ: I’d worry about my kids marrying someone that was too far on the other end of the spectrum from them on any major issue personality trait/characteristic, whether that is IQ, or introvert/extrovert, or ambition/lazy, or neat-freak/slob, etc. Opposites may attract (and create good sitcom fodder), but it can get exhausting after a while.

    For ex., DH and I tend to make decisions based on “who cares the most.” This works because we are mostly aligned, and when we differ, one of us usually cares much more about it than the other. I cannot imagine trying to navigate life if we were on opposite ends of the spectrum on something like how often should we go out, and we both cared passionately about the answer — I think just the daily friction, and the inability to make your partner happy on a daily basis without giving up a big part of yourself, would be misery-making.

  4. I read somewhere that online dating has placed a new premium on grammar since more communication on line is written. People who feel they cannot discriminate feel the can discriminate for any other reason feel ok with only dating people with similar writing. I see grammar as another proxy for IQ (possibly the most readily apparent component of IQ?).

  5. Fascinating article!

    If I’m understanding him correctly parents would go in and have 12 eggs fertilized and then you’d sit down with a counselor and you’d get a phenotype report on each one and you’d then chose which you you wanted to bring to term. That sounds plausible.

    I guess the primary flaw in his argument is his assumption (He holds Ph.D.s in sociology (1996) and in biology (2014)) that most parents would chose IQ/academic ability as the primary sort criteria. I think the reality is there would be a lot more variety in sort criteria.

  6. “I see grammar as another proxy for IQ” – Oh I am very guilty of judging people based on grammar – although in general I think it probably is a good indicator of at least a proper education.

    I don’t like messing with nature too much. Too many variables. Too many unforeseen ways in which it can go awry.

  7. Rhett, I think you are right – People could prioritize health, strength, beauty, temperament, and so forth.

    We are a long way from being able to do that, though.

  8. Is there a gene for hilarious – that’s an important one here oh and a gene for keeping the house the proper temperature?

  9. I agree other criteria, like looks and athletic ability, would be considered. I have some friends who have complained that their kids’ girlfriend was not very pretty (too fat) or had poor grammar. They’ve made similar comments about other mismatched young relatives. While I may silently think those thoughts, I would never share that with friends.

    I’m not familiar with the science, but I think we can already select for certain characteristics, like eye and hair color and stature. when selecting donors.

  10. “I think the reality is there would be a lot more variety in sort criteria.”

    Jep. Specifically, people would choose their own strengths, because that tends to be what we value and know and are used to. Smart people would prioritize IQ; athletes would prioritize athletic ability; artists/musicians would prioritize creativity; etc. etc. etc. The question is where does that get you? More specialization? Higher achievement? And then what do you do with the outliers? Just because a kid is smart doesn’t mean he doesn’t love basketball or music; just because a kid is naturally athletic doesn’t mean she loves sports; etc. It strikes me that even if you achieve what is scientifically possible, and get to this kind of earlier and earlier specialization and training represented in the article, it doesn’t make for a happier human race — it just makes the square-peg-round-hole issue even worse for those whose interests don’t align perfectly with their genes.

  11. If Tinder showed your IQ there would be plenty of rejections based on too-high IQ — “I’m looking for a hot date, not a graduate seminar” — but still not so many based on too-good-looking.

  12. LfB,

    I think you might be focusing too much on the high end. What about the low end? Out of the twelve embryos the ugly, stupid, lazy one with major depression and a high susceptibility to substance abuse isn’t going to picked.

  13. This topic makes me want to watch Gattaca again. Young Jude Law!!!

    Our reproductive endocrinologist does PGD, but IIRC one of the things they refuse to screen for is sex selection absent other criteria: so they might consider it for people with 4 boys who want a girl next, but not for people who are just looking to have the one or the other.

  14. I’ve thought about this topic a lot. I think (hope) that the outcome of selection will be mostly to reduce/eliminate genetic diseases associated with a particular gene error.

    The most interesting conversation on this I’ve had recently came the day after I discovered I was pregnant with Baby WCE and the Chinese-American MGH postdoc accompanied me to the grocery store in Boston. His lab helped develop the currently-used fetal DNA screening tests which have cut false positive screenings by a couple orders of magnitude, which is a good thing. False positives are a huge problem in medical screening, IMHO, in prenatal screening, breast cancer screening etc. He asked me why I didn’t just have an abortion and was the only person who asked me that out loud. (Doubtless many other people thought it and kept quiet.) It was apparent in our conversation that he was the sort of person who would use preimplantation selection as described in this article. I suspect there would be strong cultural/socioeconomic factors regarding who would choose IVF/PIGD for conceiving their children.

    IQ is a very narrow variable that is most useful on a population basis, like many statistical factors. Being tall can be advantageous for men but it can also be associated with Marfan’s syndrome. In previous discussions, my dominant thought about those of you who are opposed to the use of IQ is, “How many sub-90 IQ people have you tried to teach?”

    Also, I think epigenetics is coming into its own. One of the reasons I went through considerably effort to breastfeed my twins is that my perinatologist (and my own subsequent research) mentioned research showing differences in grey/white brain matter based on breastfeeding vs. formula feeding for late term preemie boys. The technology for observing myelination is still evolving but suggests similar differences. I think proper fatty acid availability during brain development probably makes the most difference not for IQ or even adult function but for decline in old age. Formula improves so quickly that research on elderly adults isn’t necessarily relevant. (Examples include much better heart disease statistics for infants in 1920’s Sweden breastfed for at least a year and possibly better lifelong cholesterol levels for breastfed infants, since formula and breastmilk differ dramatically in cholerestol levels.)

  15. ATM – Are people still buying it for the pictures now, when you can just Google whatever you want?

  16. Milo – I guess I am wondering who does still buy it? Will not having nude pics increase its customer base or save costs? No idea.

    (Clearly I am avoiding doing really boring work. And can I add, wow, am I impressed with what WCE read while pregnant. I for one had pregnancy brain and read pure chick lit/junk.)

  17. ATM, I spent a month on my side in the hospital with no prep during the worst weather of our past decade, so a couple weeks Mr WCE only made it down to the hospital once. Fortunately, I had a laptop and internet.

  18. ATM – I don’t know who still buys it. One or two guys on the boat would supply the JO bathroom with that, or harder core stuff, until the CO discovered it and asked them to stop bringing it onboard because he thought it was inappropriate, etc. So then they would paste a few of the pictures here and there inside the back issues of the New Yorker that I always contributed to the reading stash.

  19. So then they would paste a few of the pictures here and there inside the back issues of the New Yorker

    Aahahahahahahahah!

  20. So then they would paste a few of the pictures here and there inside the back issues of the New Yorker
    ….(too funny LOL)
    How Totebaggy of them.

  21. Interesting topic, and a bit like playing God. I agree with others that finding a mate with a similar IQ is probably best. That being said, there is a place in the world for all levels of IQ from the very low to the very high. Yes, probably eliminating psychopath serial murders from contention might be a good thing, but there are so many benefits to society for individuals that are less than perfect. My eldest’s karotype would most likely fall into the category of nondesirable (and indeed, many pregnancies are terminated when testing reveals the risk), but it turns out she survived to full term and has few issues, plus our family, and society as a whole, has the benefit of her amazing personality and caring heart. Also, I can’t imagine how annoying it would be if everyone (or just the wealthy who can afford it) was beyond genius and constantly competing for being the best. ugh.

  22. “I think we can already select for certain characteristics, like eye and hair color and stature. when selecting donors.”

    Donors.. sometimes aka spouses.

  23. “a bit like playing God”

    Tying back to the TV thread from last week, which got me to rewatch (again) an Ally McBeal episode, which had this great line, in answer to the question of if there is a God:

    “Of course there is.” (pause) “Who do you think these doctors walk around pretending to be, Moses?”

  24. I think you might be focusing too much on the high end. What about the low end? Out of the twelve embryos the ugly, stupid, lazy one with major depression and a high susceptibility to substance abuse isn’t going to picked.

    This was the basis for the movie Twins. At the high end was Arnold and at the low end was Danny DeVito.

  25. “What about the low end? Out of the twelve embryos the ugly, stupid, lazy one with major depression and a high susceptibility to substance abuse isn’t going to picked.”

    But isn’t your argument that most of these characteristics are innate? Meaning that those who have the funds to choose IVF (and thereby avoid having kids that are ugly, stupid, lazy, with major depression, and a high susceptibility to substance abuse) are those who are least likely to have kids with those traits in the first place. And conversely, those who do have those traits (and are thus most likely to pass them on) would be part of the permanent underclass because of those traits, and thus couldn’t afford the IVF that would allow their kids to avoid a similar fate.

    Voluntary eugenics doesn’t eliminate the permanent underclass. In fact, if you believe it is nature over nurture, then voluntary eugenics is more likely to cement those class distinctions, by giving the ability to minimize genetic risks only to those who are already genetically blessed.

  26. I am very suspicious of this whole supposed link between IQ and Asperger’s. I think the diagnosis is being thrown around liberally and may no longer mean all that much. In particular, I know a few kids the same age as mine who are diagnosed as Aspergers for reasons I cannot fathom. They are smart, quirky kids. I suspect that higher IQ can make a kid prone to being more quirky, since that kid may see through some of our social conventions more easily. But is that really Asperger’s? I can remember having college students with Asperger’s back when I was first teaching. Those students were profoundly unable to relate in a normal way, had all the classic behaviors like hand flapping, and could be quite disruptive in a class. The kids I see now who are diagnosed, not so much. They seem quite normal to me.

  27. LfB,

    The article mentioned that the sequencing and counseling would be available to all. I think under such a system a significant system of carrots and sticks would be needed to ensure everyone was on reversible birth control until such time as they wanted to have children.

  28. Mooshi, your post reminds me of my sister’s analytical chemist friend whose toddler was referred for Asperger’s evaluation. The Dad’s PhD analytical chemist colleagues expressed concern and the Dad showed them the checklist. The PhD analytical chemist group looked at the checklist and responded, “Wow, this describes everyone in our group.”

  29. They seem quite normal to me.

    I think a lot of that would hinge on your definition of normal. If you’re looking at the set of all software developers at Oracle then that’s one definition. If you compare them against all employees: sales, HR, marketing, management, etc. Then you’re going to get a different definition of normal.

  30. I have mixed feelings about genetic testing of any kind. I’ve participated in classes, or counseling about genetic testing before I had genetic testing done for a few different reasons when I was pregnant.

    I am just starting to participate in a study that will provide me with genetic information, and it is the first time I doing testing that is not pregnancy related. The other time that I participated in genetic testing was to determine if it was possible for my unborn child to have Tay Sachs or other related diseases. I am not sure how it works in other parts of the country, but as soon as the OB finds out that you are Jewish and pregnant in NY metro, they ask a series of questions. They will usually recommend genetic testing if they find out that both parties are Jewish, and of Ashkenzai descent.
    I had additional genetic testing as my pregnancy progressed. It was an enormous relief to get the results, but that’s because I have always received good news.

    The science behind all of this is amazing, but the results can lead to some intense decisions whether it is related to an embryo, or adult.

  31. “They seem quite normal to me.”
    “Wow, this describes everyone in our group.”

    Normal is a relative term.

  32. “To the extent that competitive college admissions – and thus social grouping in 20-somethings who are selecting spouses – is a proxy for higher IQ, this is already happening.”

    Another thing to consider if my kids get accepted to a highly selective school.

  33. I wouldn’t expect your kids to give you much say in their spouse selection, Finn.

  34. “Only when like marries like can there be any happiness.”
    Gerald O’Hara, Gone With the Wind

  35. Mooshi,

    There is a lot more early intervention these days which as far as I know can be quite helpful. So, maybe you just don’t see such extreme cases anymore.

  36. These are kids that I have known since they were toddlers. They are quirky, but normal. To me, stuff like not liking tags in your clothes, or having to have food not touching is not the same as Asperger’s, at least the way it used to be dx’ed. Asperger’s used to mean autism + very high intelligence. Now it just seems to mean smart + not very social.

  37. To me, stuff like not liking tags in your clothes, or having to have food not touching

    That’s sensory integration disorder.

  38. Yeah, my son has a friend who seems like a smart kid with some odd tics, and his diagnosis is autism rather than Asperger’s. Maybe there’s been diagnosis inflation.

  39. To me, stuff like not liking tags in your clothes, or having to have food not touching

    That’s sensory integration disorder.

    Or else it’s cheaper materials being used in tags — I swear they have gotten much more itchy and is that fishing line they’ve started using to sew them in?

  40. One concern I have with prenatal diagnostics is that research dollars will go to preventing people with genetic diseases in question from being born, rather than cures, treatments, and support for those living with the conditions in question. As someone who has a rare genetic condition that can be screened for with IVF, this bothers me on a personal level as well as the theoretical.

  41. “stuff like not liking tags in your clothes”

    If that’s so odd, would Hanes build an entire advertising campaign around it?

    I’ve noticed it is getting increasingly common for shirts to not have tags, and instead have the information that used to be on tags printed on the inside of the shirts.

  42. Autism + high intelligence

    Was that the diagnostic basis, or you’re interpretation? We’ve been more familiar than we want with this for almost 10 years, and the checklist seemed to include a lot of sensory issues, some coordination issues, narrow focus, inability to shift gears, etc. I don’t recall intelligence being on the checklist.

  43. When I was a little kid, those stirrup pants were popular, and I made my mother cut them all out of my pants because I did not like the feel when I had shoes on. I would not consider myself to have “sensory integration disorder”. I just didn’t like the feel of those pants.

  44. Mooshi,

    I think the key phrase is:

    Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

    https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

    In other news:

    Impairment of the ability to change communication to match context or the needs of the listener, such as speaking differently in a classroom than on the playground, talking differently to a child than to an adult, and avoiding use of overly formal language.

    I totally had that and to a degree still do.

  45. “One concern I have with prenatal diagnostics is that research dollars will go to preventing people with genetic diseases in question from being born”

    Rio – I know a lot of people refuse this kind of testing because they are happy with the child they get, no matter what, so why bother. Others get the testing in order to be prepared. We fell into this latter category. But also, we did have an idea in mind that if the testing revealed X, we would reduce/terminate and if it showed Y or nothing we wouldn’t. Very difficult. We were fortunate and, aside from one twin having a hole in his heart, the tests came back OK.

  46. I would not consider myself to have “sensory integration disorder”.

    I think the key would be that these feelings or sensations would need reach the level where they were impairing your ability to function.

  47. Rhett, I was just going to add that phrase. “Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.”. That is the key thing. I am seeing kids who are not significantly impaired getting the diagnosis. In any case, the dx has gone away for new cases (see my above posting)

  48. “M]y dominant thought about those of you who are opposed to the use of IQ is, “How many sub-90 IQ people have you tried to teach?”’

    Wow, WCE. I suspect you didn’t mean it that way, but that is a bit offensive. Anyway, my answer is “one”, and I’m working on homework with him right now. Teaching is a challenge– it would also be with a super intelligent kid like so many of you are doing– but I wouldn’t trade my kid or the experience for the world.

  49. “To me, stuff like not liking tags in your clothes, or having to have food not touching is not the same as Asperger’s”

    If this is Asperger’s, then my whole family is Asperger’s. I am the freaking princess and the pea when the stupid line on the sock toe rotates underneath my foot, or when the tag rubs against the back of my next. DD is exactly the same.

    My totally untrained opinion is it goes along with ADHD more than Asperger’s. The best description I ever heard of ADHD is that you don’t have a mental “filter” that allows you to tune out the humming of the air conditioner when you know you need to listen to the teacher. So is it that we don’t have the right filter? Or is it that we just have more/more sensitive nerve endings that make those inputs overwhelming and un-ignorable — sounds that much louder (DD was terrified of the ocean), lights sooooo much brighter, flavors overpoweringly strong (hello, supertaster here), tags that much itchier, etc. etc. etc.?

  50. Anon at 4:08

    I apologize for coming across as insensitive.
    My mom was a reading specialist who taught lots of kids in the 70-90 IQ range. She thought IQ was a very helpful metric. My general impression of reading this blog is that many people don’t want to admit that the number of repetitions people need to learn new information and how frequently they require repetition in order to retain this information vary dramatically. When I say that IQ matters, it is this concept that I am trying to convey.

    Maybe we need another term than “IQ” to convey that concept, but we need some term to express it. People are not all the same.

  51. That is the key thing. I am seeing kids who are not significantly impaired getting the diagnosis.

    How would you define significantly impaired? Being a computer science professor what you might consider significant social impairment and what the median parent might consider significant might be considerably different.

  52. Rhett’s comment combined with my insensitivity reminds me that it didn’t bother me when my kid shared my pregnancy weight with his class at school. I’m beginning to realize that my view of numbers that describe people may not be the normal social view.

  53. Is there a flaw in my belief that it’s a slippery slope between aborting a fetus with Down’s syndrome and wanting to add a few extra points to your future baby’s IQ or an extra inch to his height? When and if it becomes available, I think the vast majority of people will take advantage of self-directed eugenics. It’ll start with a little tinkering around the edge, and then develop from there.

  54. CoC, I can’t decide if you’re right or not. I wonder if the people choosing eugenic options will also be opposed to GMO food.

  55. I did all of the standard prenatal tests for my kids. Always good news, so I didn’t have to make any decisions or really think about what to do with the information.

    As for the IQ of the people my children will marry, I suspect that SES will likely be more similar than IQ. My husband has a much higher IQ than I do. We are happily married. I have good executive function skills that aren’t IQ-based that make for a more organized home life.

    Re: asperger’s, autism, SPD, etc, I do worry that we make behaviors that are in the normal range pathological. I am certain that I could get a diagnosis for my oldest son if I asked. He has a high IQ but some sensory issues according to those who have tested him. Time will tell if these will affect him much, but I worry about pushing a diagnosis on him for seemingly mild things.

  56. PTM, I was pretty sure it was, but I also realized it probably represents lots of lurkers who view the world less numerically. When I’m a jerk, it’s an accident.

  57. FWIW I actually opted in on prenatal testing, but to prepare myself and have access to top medical care if something did come up, rather than to terminate. I agree with CostofCollege about the slippery slope. There was a 60 Minutes segment not too long ago that suggested couples will soon have thousands of “virtual” babies before going through IVF in order to “optimize” their child. It was like something straight out of GATTACA. I know my Catholic pro-life views are in the minority, but I wonder what the incentive is for society to avoid that path outside of religious or philosophical objections. Most people use devastating conditions like Tay Sachs to defend genetic engineering and medical terminations, but I’ve read that it is not uncommon for people to have abortions over things like dwarfism, club foot, etc. Few would probably talk about it in public, but privately those are the decisions that are being made. I’m willing to be that if PGD becomes available for obesity, a lot of people would go down that road.

  58. I strongly doubt that most people will prefer to conceive their children via IVF/PIGD. Refer to the Playboy/New Yorker tangent…

  59. My thought, WCE, in context, was that you were suggesting that people might choose to terminate their pregnancies if testing revealed that their fetus’s IQs were below 90, or at least resist teaching them. I don’t believe I was mistaken. If I was, I apologize for having taken offense.

    Generally, I think IQ is more permanent than pregnancy weight gain, but certainly not always.

  60. “I strongly doubt that most people will prefer to conceive their children via IVF/PIGD. Refer to the Playboy/New Yorker tangent…”

    Well, think of soon to come driver-less cars. We will use them to get from point a to point b efficiently and easily, but we may still enjoy driving for fun.

  61. I could easily see IVF becoming an upper-middle class norm. Sex and procreation have already been decoupled in the minds of the vast majority of people. As far as cost, if you can greatly increase the odds of NMF-level test results, it would easily pay for itself on average. Even moreso if you can make sure the kids are tall (especially boys) and physically attractive.

  62. PTM, I think it’s well known that people DO choose to terminate pregnancies for lower IQ- consider termination rates for Down Syndrome (which usually involves only mild to moderate intellectual disability) for instance. I think that is a grave injustice and says something very sad about our society, but the statistics are pretty clear that it happens, and not at all rarely.

  63. PTM, I really was referring to other discussions where I’ve gotten in trouble on this blog because I find the statistical evidence on IQ to be compelling and other people have strongly disagreed.

    I unfortunately agree with you that a segment of the population would terminate for known low cognitive ability.

  64. WCE,

    I totally agree with Rio. Sex is something you do for fun while making a baby is something that should only happen in a lab. Way too much is at stake to leave it up to chance. While be the way it’s done if they perfect the technology.

  65. In the home country where people tend to marry within their groups – children of “mixed marriages” (outside one’s own group) were considered to bring a different set of genes into the pool and inherit the best of both groups.
    Selection of optimal partners with an eye to producing the “best” kids is very common in arranged marriages, so a form of selection has been going on for centuries.

  66. Rio,

    I have a philosophical question. If I went back in time and snatched that sperm, just as it was about to fertilize your mother’s egg, either another sperm would have fertilized it or your parents would have conceived on a different night. In either case someone else would exist and you wouldn’t. Why is your right to exist greater than theirs?

  67. I believe personhood begins at conception. Once I existed, I don’t think anyone had the right to end my life. Of course there are billions of ways that any of us could have never come into existence. But we did.

  68. I certainly cannot speak for those who terminate when faced with a baby who has Down syndrome, but at least in my friend’s case, she didn’t do it because of a fear of having a child with a low IQ. It was because the statistical likelihood that her child would live to its first birthday was low (if it didn’t die in utero, which happens a lot to babies with DS). The baby had a heart condition (something that a large % of people with DS have) and the doctors were advising that because of that combined with some other issues, the likelihood of survival to one year was less than half.

  69. It’s more than not liking tags. It’s being so distracted by sensory issues that you can’t even focus. My mom had this temporarily when she had a brain tumor that had not been diagnosed. She said she couldn’t even listen to a conversation because this feeling of her clothes on her skin was so distracting That was what we found with my son, he could not focus on anything long enough to learn at school because clothes were so distracting to him. When we discovered the sensory kid uniform of under armor shirts and crocs shoes, everything got better

  70. ^Cases like your friend’s are not the norm, though. In general the heart conditions (and other issues common with DS ) have an excellent prognosis with modern surgical techniques. (A friend has a child with this condition, so I’ve learned a decent amount about it through her.) The abortion rate estimated as high as 90% suggests that most people are terminating for reasons other than low survival, because the vast majority of kids with Down Syndrome have very treatable health issues, if any. It’s very different from something like Trisomy 18 where survival is rare.

  71. I personally did not have any prenatal testing (there wasn’t much available back in the 70s, it wasn’t indicated in my case and I would never have terminated unless the doc said a known lethal defect would endanger my health). Extended family members have made other choices, although the abortions I know about (25 to 65 years ago) were not for medical reasons. It was difficult to wait out the test results when my DIL was expecting. Her mother had two disabled siblings (not genetic issues), so she was highly sensitive to the difficulties that disabilities bring to family life.

    It is possible to make a slippery slope argument about almost any area of human behavioral choice. If the technology exists to diagnose and/or cure genetic defects in a petri dish embryo or in the womb, those with money and access may make use of it to create designer babies. I highly doubt most US parents would try to design a child with genius level intelligence or creativity. They would actually want smart enough, very good looking, athletic/graceful, personable. The risk that a government of ours would ever require or encourage genetic testing of adolescents leading to sterilization of those with problematic genetic material or prenatal testing and termination of babies with defects or limitations is beyond remote.

    Rhett, have you ever read Brave New World by Aldous Huxley. I haven’t gone back to it since I first read it at 12 or so, and I assume it will be very dated, but I have never forgotten that the test tube citizens were preprogrammed for their future station from alpha to epsilon. Epsilon minuses were bred to be satisfied to do repetitive tasks that did not require much mental capacity, such as elevator operator. (Dystopian fiction, back then and even now, differs from true science fiction in its lack of technical imagination of future progress.)

  72. Rhett, since when do hypothetical zygotes have a right to exist?

    It isn’t their right to exist, it’s why their right exceedes that of any other possible entity.

  73. “They would actually want smart enough, very good looking, athletic/graceful, personable.”

    Yes, I’ve been wondering about being able to select for niceness and compassion.

  74. Of course, your perfectly designed child might rebel, and decide to do exactly the opposite of what you bred him or her to do, just to spite you.

    And even if you breed a kid with strong NMSF potential, that child is just one car accident away from having profound special needs.

    I guess I feel like no matter how much we think we can control what happens in life…we really can’t. There will always be stuff that we have to deal with that we just never saw coming.

    Sorry if this is a bit of a downer post. Today marks exactly one year since my mother died, and I’m feeling melancholy.

  75. Totally agree, NoB. The biggest takeaway from the scares I’ve been through with this pregnancy has been how completely out of my hands so much of life is. It’s a scary realization. I had all these visions of things I was going to micromanage in parenting, and now I just want a healthy baby. And despite following all these crazy “rules” about what pregnant women should and shouldn’t do, it’s mostly luck/fate/whatever.

  76. “ I highly doubt most US parents would try to design a child with genius level intelligence or creativity.”

    I agree, and my slippery slope argument did not assume that people would go to the extreme of aiming for genius, just a little extra boost that could prompt others to do the same.

    “The risk that a government of ours would ever require or encourage genetic testing of adolescents leading to sterilization of those with problematic genetic material or prenatal testing and termination of babies with defects or limitations is beyond remote.”

    Yet we have seen this type of action in recent history. (Buck v. Bell) I’m not suggesting that we would see a return to our previous laws requiring compulsory sterilization or similar government action, but as was mentioned above I would not rule out some method of incentivizing eugenics in our future.

  77. NoB — I’m sorry about your sad anniversary, and I sympathize with your feelings. This time of year as the holidays approach I think of how difficult it can be to celebrate without loved ones who have recently passed.

    I don’t believe for a second that any amount of increased control will entirely overcome the randomness of life.

  78. I will be a little more positive and say that we must make time to enjoy and help our family and others who require us, when the going is good for us. That way we can say we did our best and have no regrets later.

  79. Rio – Thank you for sharing with us during this hard time. I feel hamstrung by the anonymity of our interactions – the site-appropriate expressions of concern feel about as deep as Facebook birthday clicks.

    I have always wondered how people with generally smooth lives actually become complete. Of course, even the most externally smooth existence has internal struggles and private challenges. I don’t think there is a genetic recipe for the sort of grit that comes from the school of hard knocks or the compassion that comes from brushes with misfortune – you realize that you are generally luckier rather than “better” than someone whose life is rockier than yours.

  80. I think of my friends (both brilliant) whose teenage daughter is extra-brilliant…and suicidally depressed. I would take an emotionally resilient kid over a brilliant one any day.

    I’m sorry for the sad anniversary, NoB.

    And you’re right, Louise. I didn’t always live up to my own ideals in dealing with my mom, but I made sure she was as safe and comfortable as possible in her final years, and I always have that knowledge when things seem futile.

  81. I have always wondered how people with generally smooth lives actually become complete.

    Complete in what way?

  82. BTW, I thought The Martian was an inspiring movie highlighting the power of cheerful resilience and teamwork. I liked the science, except for the ending that I found hard to accept.

  83. “And even if you breed a kid with strong NMSF potential, that child is just one car accident away from having profound special needs.”

    Sorry about your sad anniversary, NOB. Your sentence here (indeed, your whole post) reminds me of that line in that song whose title and artist I can’t recall: “I guess we’re all one phone call from our knees.”

    To Meme’s point, if we haven’t received the phone call, or the rebellious words from a kid, or whatever other similar thing might knock us down, it’s because we’re luckier than, not better than, those who have.

    I appreciate your sobering reminder.

  84. The melancholy posts continue. A young girl in my daughter’s school passed away this week in a tragic accident. Reading her obit this morning brought me to tears and reminded me how a happy family with all the right things going for them can be torn apart in a heartbeat. No matter how much we may try to manage our lives to be ideal, we will all face death, disability, or both at some point.

  85. My extended family has been fortunate financially but there are two family members affected by mental illness. For all of their childhoods, they were the best kids a parent could possibly wish for, quiet and calm, excellent students who topped their chosen subjects. Then came their early 20s and while in college, the illness struck and their lives were changed forever. I am actually grateful that my kids are not quiet, calm or brilliant. That to me would be a disaster waiting to happen.

  86. The most profound impact on others from our first son dying at birth is that I am a MUCH more tolerant, understanding person. The ability to look at things from others’ point(s) of view aka “walk a mile in their moccasins.”

    I think what really changed me the most was shortly after that my 2nd level boss who was perceived as kind of a prick (my kind of person at the time) came into my office, closed the door and said the same thing had happened to his wife and him twice, so he understood, welcome to a club to which no one wants to belong, and he and his wife would like to get together with us just to talk/offer support when we felt the time was right. Wow!

    Although I/we are very good at many things, I do say “better lucky than good” pretty frequently.

  87. I will add that my family was very afraid that I would be struck by the illness in my 20s, so though they don’t say it, my mother once let slip that she was worried about me.

  88. DS1 missed the fall term of his freshman year and the spring term of his sophomore year to illness. I get a deep satisfaction in dropping him off at school every morning and watching him walk through the doors. It literally makes my day. Every day.

  89. Wow, Houston – I had no idea. I can totally see how watching him step inside the school would be all you’d need. I’m glad he’s well enough for that now.

  90. Rio – thank you for sharing. I’ve been thinking of you lately. I pray that you have strength and peace.
    NoB – the biggest virtual hug I can give.

    I’m glad I missed this topic – I have strong feelings about IVF, genetic testing, right to life, etc, that don’t jive with my religion (Catholicism), my family, or even my husband at times. My feelings and convictions were solidified during my pregnancy. I mourned quite a bit during those last 15 weeks and prayed even more. And now I feel ridiculously guilty for getting so angry and frustrated at DS who screamed and cried for 2 hours straight in the middle of last night for no apparent reason.

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