TOTD 2018-06-08: An End to Downs Syndrome?

I understand the concern about the increase in abortion of Downs Syndrome fetuses. That clearly has all kinds of ethical problems, and opens a giant can of worms – what genetic abnormalities get the axe?  That’s not what I am talking about here.  This is about something different.

What if a medical breakthrough occurred and we could almost guarantee that even an older woman would not have the chromosome duplication error that leads to children with Downs syndrome?  In other words, we could completely prevent Downs syndrome and other genetic disorders.   This removes the abortion element from the equation.

Would it be a good idea to prevent Downs Syndrome and other genetic disorders, if we had the technology?  If not, why not?  I’ve heard people saying good things about people with Downs, is that just being nice about a disability, or do we actually need to have people with this syndrome?

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14 thoughts on “TOTD 2018-06-08: An End to Downs Syndrome?”

  1. It makes me wonder at what stage of the gestation a procedure would work and second will it be soon enough? Modern researchers have so many ethics issues in their lives, don’t they?

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  2. OmegaPaladin:
    Would it be a good idea to prevent Downs Syndrome and other genetic disorders, if we had the technology?

    Yes, of course.  One little-known aspect (outside the medical profession and those who have personal experience of it in their families) of Down syndrome is that those with it have a much elevated likelihood of developing early-onset Alzheimer’s syndrome (or an equivalent dementia with the same symptoms).  According to the Alzheimer’s Association, by age 40, essentially all Down’s patients have the plaques and tangles in the brain which indicate the onset of Alzheimer’s.  By age 60, 50 to 70 percent will have developed full symptoms of Alzheimer’s.  So, in addition to the mental and physical challenges comes a short life and a difficult end.

    The most obvious intervention would be screening of sperm and eggs before in-vitro fertilisation, but I don’t know if this would catch the problem or whether it can only be detected after fertilisation.  I’m aware some people have religious and ethical objections to this, but if possible it’s far less invasive than aborting a developing fetus.

    In the future, there may be a genetic intervention which could actually fix the chromosome 21 trisomy in the fertilised egg before it began to divide.  If you don’t object to in-vitro fertilisation, I doubt you’d have an objection to this.

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  3. I do object to in vitro. So it’s interesting to think a day might come when an injection or extraction can be administered without removal, such as via nanobots or acute surgery.

    Ethically, is there much difference between this and an exchange of parts via organ transplants or prosthetics? Again, challenges are less apparent following materialist assumptions. Catholics and other religious hold that humanity is essentially both body and mind, rather than mind alone. So for us perhaps it is more similar to psychiatric treatments of mental and mood disorders.

    I’ll have to think about it, but it seems an acceptable prudential judgment.

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  4. OmegaPaladin:
    Would it be a good idea to prevent Downs Syndrome and other genetic disorders, if we had the technology? If not, why not? I’ve heard people saying good things about people with Downs, is that just being nice about a disability, or do we actually need to have people with this syndrome?

    Most of the comments so far (only one exception) do not address the question as I interpret it and as I think it was intended. In the minds of some, the alternative to preventing Down Syndrome is to allow it to flourish for the same reasons as advocates for deaf culture object to cochlear implants. There are close parallels and, in my opinion, both are nuts.

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  5. drlorentz:

    OmegaPaladin:
    Would it be a good idea to prevent Downs Syndrome and other genetic disorders, if we had the technology? If not, why not? I’ve heard people saying good things about people with Downs, is that just being nice about a disability, or do we actually need to have people with this syndrome?

    Most of the comments so far (only one exception) do not address the question as I interpret it and as I think it was intended. In the minds of some, the alternative to preventing Down Syndrome is to allow it to flourish for the same reasons as advocates for deaf culture object to cochlear implants. There are close parallels and, in my opinion, both are nuts.

    I am missing the connection.

    Who are these minds? What are they doing wrong that is causing Downs to flourish?

    It is easy to say A is parallel to B then state clearly B is wrong in a specific example therefore A is nuts too.

    I agree that it is nuts not to get a cochlear implant to hear like it would be nuts not to wear glasses to see. Are women who don’t wear eye glasses for beauty reasons also parallel in thinking?

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  6. 10 Cents:
    Who are these minds? What are they doing wrong that is causing Downs to flourish?

    We are living in Heinlein’s Crazy Years.

    There are people who conflate their opposition to abortion with celebrating what is a malfunction in the human reproduction process which dramatically reduces the potential of those who are its victims.  Here is an example from the Washington Post (you’ll have to click through some subscription bait and privacy warnings—democracy dies in failed business models and bureaucracy).  Now, this article is talking exclusively about abortion, but make a few edits and it could be used to oppose any intervention which corrected the cause of the syndrome.  Note:

    Parents sadly believe that a family member with a disability or Down syndrome translates into an unfulfilled or bad life.

    Note that a person with Down syndrome will usually require supportive care throughout their short life, and that this can become a difficult problem once their parents are no longer able to provide it.  What about the quality of life of the parents, siblings, or others who provide the care or pay for it?  Again, I’m not talking about killing these people before birth but fixing the problem before or immediately after conception.

    I guarantee you that if and when such a treatment should emerge, it will be opposed.

    Now, if you want to turn this into a 300 comment thread, consider a slightly different case.  Some, perhaps a majority, of homosexual advocates argue that homosexuality is innate, which essentially means genetic—“you’re born that way”.  But once we develop the technology that allows us to fix Down syndrome in the fertilised egg, if we’ve identified the “gay gene” or (more likely, genes), we’ll be able to fix them as well.  What are the ethical considerations in parents doing this?  Should gay couples be able to cause their surrogate-parent children to be gay?  (If people want to debate this, it should probably be in another post, rather than diverting this one.)  I would put the probability, if homosexuality is indeed genetic, of being able to select for or against it in the embryo sometime in the Roaring Twenties in excess of 90%.

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  7. 10 Cents:
    What are they doing wrong that is causing Downs to flourish?

    Sorry if it was not clear. The thesis is that Down Syndrome is a good thing, a separate culture worthy of propagating. Advocates of this view would oppose any effort to ameliorate the condition. The parallel with cochlear implants is apt.

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  8. drlorentz:

    10 Cents:
    What are they doing wrong that is causing Downs to flourish?

    Sorry if it was not clear. The thesis is that Down Syndrome is a good thing, a separate culture worthy of propagating. Advocates of this view would oppose any effort to ameliorate the condition. The parallel with cochlear implants is apt.

    Very apt. Interesting.

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  9. drlorentz:

    10 Cents:
    What are they doing wrong that is causing Downs to flourish?

    Sorry if it was not clear. The thesis is that Down Syndrome is a good thing, a separate culture worthy of propagating. Advocates of this view would oppose any effort to ameliorate the condition. The parallel with cochlear implants is apt.

    Thanks, that makes sense.

    I am not in favor of Downs but I think my life was richer for knowing a boy who had it. I hope a cure or prevention can be found.

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  10. The difference from the cochlear implant is that Down syndrome more directly and obviously changes personality. Many physical repairs or augmentations would affect personality by altering a person’s capabilities and interactions with the world. But undoing mental retardation — and a characteristically joyful disposition — is like flipping a switch to something else entirely.

    How many great artists and minds of history have suffered from chronic depression or similar maladies? If we turned off the genetic predisposition to depression during infancy, would they produce equal works? And how would we know? I refer not only to their value to society, but also to the roles they adopt for themselves.

    As someone with lifelong depression myself, I doubt many positive aspects of my personality would be as pronounced without that tribulation. The good of a personality is not a mere combination of delightful abilities and disciplines.

    It is tempting for the intelligent to pity the dumb for the countless opportunities and control enabled by intelligence. But a living being’s value is not a mere consequence of use or ability. As a smart person can love a dumb dog, a mighty God can love a dumb man. Who is to say that the happiness so commonly witnessed in Down syndrome is necessarily and universally inferior to an average life?

    As I said, I am open to the idea. But the answers are not so obvious as the decision to repair a broken vehicle.

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  11. John Walker:

    10 Cents:
    Who are these minds? What are they doing wrong that is causing Downs to flourish?

    We are living in Heinlein’s Crazy Years.

    There are people who conflate their opposition to abortion with celebrating what is a malfunction in the human reproduction process which dramatically reduces the potential of those who are its victims.  Here is an example from the Washington Post (you’ll have to click through some subscription bait and privacy warnings—democracy dies in failed business models and bureaucracy).  Now, this article is talking exclusively about abortion, but make a few edits and it could be used to oppose any intervention which corrected the cause of the syndrome.  Note:

    Parents sadly believe that a family member with a disability or Down syndrome translates into an unfulfilled or bad life.

    Note that a person with Down syndrome will usually require supportive care throughout their short life, and that this can become a difficult problem once their parents are no longer able to provide it.  What about the quality of life of the parents, siblings, or others who provide the care or pay for it?  Again, I’m not talking about killing these people before birth but fixing the problem before or immediately after conception.

    I guarantee you that if and when such a treatment should emerge, it will be opposed.

    Now, if you want to turn this into a 300 comment thread, consider a slightly different case.  Some, perhaps a majority, of homosexual advocates argue that homosexuality is innate, which essentially means genetic—“you’re born that way”.  But once we develop the technology that allows us to fix Down syndrome in the fertilised egg, if we’ve identified the “gay gene” or (more likely, genes), we’ll be able to fix them as well.  What are the ethical considerations in parents doing this?  Should gay couples be able to cause their surrogate-parent children to be gay?  (If people want to debate this, it should probably be in another post, rather than diverting this one.)  I would put the probability, if homosexuality is indeed genetic, of being able to select for or against it in the embryo sometime in the Roaring Twenties in excess of 90%.

    I worry about unintended consequences. If you change one thing it will affect something else. I worry about designer babies.

    It is a tough question and I don’t know how to really answer it at times, but when does life begin in the sense that it should be legally protected?

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  12. Aaron Miller:
    The difference from the cochlear implant is that Down syndrome more directly and obviously changes personality. Many physical repairs or augmentations would affect personality by altering a person’s capabilities and interactions with the world. But undoing mental retardation — and a characteristically joyful disposition — is like flipping a switch to something else entirely.

    How many great artists and minds of history have suffered from chronic depression or similar maladies? If we turned off the genetic predisposition to depression during infancy, would they produce equal works? And how would we know? I refer not only to their value to society, but also to the roles they adopt for themselves.

    As someone with lifelong depression myself, I doubt many positive aspects of my personality would be as pronounced without that tribulation. The good of a personality is not a mere combination of delightful abilities and disciplines.

    It is tempting for the intelligent to pity the dumb for the countless opportunities and control enabled by intelligence. But a living being’s value is not a mere consequence of use or ability. As a smart person can love a dumb dog, a mighty God can love a dumb man. Who is to say that the happiness so commonly witnessed in Down syndrome is necessarily and universally inferior to an average life?

    As I said, I am open to the idea. But the answers are not so obvious as the decision to repair a broken vehicle.

    Did you see comment #8?

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  13. This conversation reminds me a bit of where Gattaca delved into. There is a fine line between treating illness and eugenics, and I’m not sanguine there would not be a rush to the latter.

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