This is a horrible idea that needs to be outlawed. Strangely, the opponents of eugenics are cheering on this abomination.
Once this practice becomes widespread, it will be easy to deny healthcare to people born normally on the basis that it’s their parents’ fault for not engineering away any possible illness pre-birth.
That people even consider such a possibility shows how badly their brains have been eaten by hubris and consumerism. Banning every mishap and unpleasantness from life is impossible. Attempts to do so, to reverse the very nature of human experience will have terrible consequence.
Clarissa's Blog 
\ This is a horrible idea that needs to be outlawed.
Why? For instance, if one of parents has epilepsy or this horrible gene making women amputate their breasts to avoid dying from cancer at the age of 40, how is it moral to deny people the possibility to avoid transmitting those horrible diseases to their children?
Most people won’t go to IVF clinics for no good reason anyway, only single mothers and couples with genetic issues they’re aware of.
\ it will be easy to deny healthcare to people born normally on the basis that
It will be easy for no reason at all anyway, if the current neoliberal trends continue.
Fighting this danger is a separate issue imo.
\ Attempts to do so, to reverse the very nature of human experience will have terrible consequence.
I am unsure where exactly you put the line between beneficial scientific medical advances and ‘brains eaten by hubris.’ Wouldn’t our current medicine seem miraculous to medieval people?
Btw, what is your definition of eugenics and why must it be 100% bad? I know about the popular association of this term with racism and Nazism, yet studied at one university course that the original ideas were somewhat more complex.
Social Darwinism distorted ideas of Darwin about nature, yet we do not deny evolution because of those mistaken people.
The entire field of modern genetics is about eugenics, the way I understand this term. Should this science be forbidden like in FSU because of ‘racism’?
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We are all going to get sick. We are all going to die. We are all going to suffer from terrible diseases. This cannot be avoided. It’s the nature of the human condition. Trying to engineer human nature out of human beings will lead to very bad consequences. This whole way of thinking is anti-human and abnormal.
The existence of medicine itself comes out of the recognition that illness is normal. It’s part of every life. People who are ill are not defective. Medicine dies the moment we depart from our understanding of the human body as one that will get sick.
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The idea that we can and should be in control of these things, that a genetic disorder or disability makes for a life *not worth living* and that out of compassion these things should be eliminated… it very quickly leads to some very nasty things:
I recently attended the funeral of my niece. She was one such person: severely disabled from birth, despite a great deal of therapy, effort, love, help… was never able to talk, walk, or achieve any kind of independence. It would be very easy for an outsider to write her off as a burden on humanity, a waste of resources, pointless suffering, etc. We’ve all heard the litany. Doctors predicted she couldn’t possibly live past 4, 5, 8, 12, 20, 25 (she lived to just over 30). We loved her. Every caregiver who’d ever helped her bathe or pushed her chair onto the bus was there at the funeral. You wouldn’t think a person who couldn’t talk would make such a huge impression, but if you’d known her it’d be no surprise. I lived with their family for a time. She didn’t talk, but she did communicate broadly. She was always the first person in the room to get the joke and laugh. She liked some people more than others. She had keen preferences in music, books, movies… She obviously *enjoyed life* and people enjoyed being around her, as she was a very cheerful person.
What is a life like that worth?
We are privileged to live in a place and time where she could be supported and nurtured– given the best life her family could give her, knowing it would be short– and I’m honored to have known her. Would we all be better off if she had never been born? I don’t think so. She was a gift to the family. I’m 100x in favor of the sort of research that might help people like her in the future– that might’ve enabled her to communicate better, or move around independently, or helped with the seizures (to this day, epilepsy is a very poorly understood disorder with few and dismal treatment options: and yet I know several people with the disorder and wouldn’t write off any of them as not worth their feed).
Let’s not stumble blindly down that road, chasing perfection and discarding anything that doesn’t measure up. There’s no backstop for how trivial an imperfection warrants elimination from the gene pool.
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Because this topic raises my hackles *so much*, let me also add:
I have a genetic disorder. It’s (most likely) a single-gene mutation, I’m part of the fifth generation of it in my family, and my eldest child is the sixth. It causes diabetes. For all of us with the mutation, our kids have a 50/50 chance of inheriting it, and it’s autosomal dominant: if you have the gene, you have the diabetes. It is *exactly* the type of disorder this sort of program targets.
Diabetes is pretty awful generally, but… a lot of people have it these days, and in most cases it *isn’t* genetic. Or it’s a mix of “risk factor” type genes. Our version is a mixed bag: it’s mostly not as severe as ordinary T1 or T2. It’s controllable with diet, if you’re careful and ignore most standard dietary advice. Modern medicine has made it quite easy to live to a respectable old age with the disorder, even if you’re not that self-disciplined. But… we’re born with it. We don’t suddenly “come down with it” in our fifties like most diabetics. Sometimes takes until forty to get diagnosed, but it’s there all along.
It’s a single gene (probably). It’s highly amenable to this sort of test-and-eliminate strategy. If this tech had been available to me, I almost certainly would have been pressured to use it. Let’s get rid of this family scourge and all. rah rah.
And yet, that would mean we, and later the world, would not have my son. He inherited the thing. We’re not talking about eliminating mutations, we’re talking about eliminating people here. He’s also brilliant. That’s not just me talking– for administrative reasons we put the kids through a round of grade-level standardized tests. My son broke the test. He tested so far above grade level that the test couldn’t give us any useful/legible academic information. As long as we can instill some basic humanity in him by adulthood, I reckon the world will be better off with him, than without. He’s got a lot to offer.
But looking through the narrow, stupid little drinking-straw of genetics… he’s just another problem that we could make the world a better place by eliminating. Better he’d never been born, right?
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I get triggered by this, too. In many and probably most countries, the healthcare system wouldn’t have supported my decision to have a child at 39 with my history and my bouquet of pathologies. I’m not just high risk. I’m high high risk. Almost everywhere, I’d either openly be told to abort or deprived of the healthcare I needed to carry to term. Thankfully, I never saw on the faces of any of the many doctors who assisted me a shadow of a doubt that I was doing the right thing. Everybody acted like this pregnancy was the most wonderful thing ever and the only normal thing to do was to help carry it to term. (It was a Catholic hospital).
So I’m one of the very imperfect people who decided to give birth. I don’t want one of the few places in the world where this is possible to adopt the utilitarian mentality where only perfect babies are acceptable.
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That’s before you even get to the whole commodification of children, which is creepy as hell.
Why roll the dice and trust God to give you the children you need for your salvation? Why not just pick out traits from a catalog, coordinate everything like a posh home dec project…
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The problem is that you are not really avoiding the transmission of the disease to your children, you are creating new human beings (your children), test them for a disease while in a very early stage of their development and then kill them when they have it. This is not a preventative measure – it is equivalent to abortion or euthanasia. If you allow for this to be OK, a natural extension of this is infanticide.
Having a particular disease does not make the person’s life worthless. Also, no genetic test can tell you all the gifts and abilities that a particular person possesses. Genetic testing with the goal to eliminate a person, no matter how small, is short-sighted and abominable.
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Klara’s first pediatrician read my medical history and said, looking at my week-old baby with disgust, “don’t you understand that she’s guaranteed to develop obesity and diabetes?”
I walked out immediately but yes, it’s exactly this mentality that you talk about. An imperfect baby of an imperfect mother. Why do we even need to exist if we can create perfect people? Or better yet, machines.
This is a road to literal extinction. And for what? To exterminate suffering? That’s not going to happen anyway.
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Also, I understand infertility and have enormous compassion. But sacrificing the natural act of conceiving a child not because you can’t conceive otherwise but because you want to medicalize the child’s existence from the get go? It’s ridiculous.
I remember the day when I conceived my daughter with great clarity. Every detail is stamped on my mind forever. It is such a wonderful, wonderful memory, and it doesn’t include a doctor’s office.
Again, this is not a criticism of people struggling with infertility. It’s a criticism of people who don’t and still medicalize conception.
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“road to literal extinction. And for what? To exterminate suffering?”
That (eliminating suffering) is the entire justification of the “antinatalist” (ie pro human extinction) movement… if no one is born then no one suffers.
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In my son’s case, there is an argument to be made that the disease is a net positive. We ran his numbers about a year ago and he flunked the GTT. I was afraid it was going to be a massive struggle and we’d have to banish rice and potatoes from our house forever (we already don’t have sweets) and always have to be on the lookout for trying to sneak illicit foods that’d sabotage his health.
I’ve been… amazed at how much that didn’t happen. He learned to use a glucometer, he listened when I gave him the Blood Sugar 101 information, and with very few detours, adapted quickly and well. He gets it. He’s experimented and figured out how many carbs he can handle without driving his numbers high and feeling like garbage, he’s learned to recognize the symptoms of both high and low glucose and deal with them appropriately, and he made the connection between the numbers and how he feels very very quickly. He prefers to feel good, and he makes good decisions about it. I’m proud of him, and I think it’s been a very salutary exercise in self-discipline and in fact character building. In some ways, it seems good for him to have some obvious limitations to respect.
Hooray for cheap home glucometers. It was a lot harder before that.
As a side note, while there are some pretty gnarly downsides: the gestational diabetes is beastly, and if not well-controlled, we will certainly end our days in a dementia ward. On the other side of the balance, it seems to be protective against alcoholism. I always thought that branch of the family were just teetotaling righteous Baptists for religious reasons. Turns out if you have our mutation, alcohol’s just not much fun. Also we have superbly muscular legs 😉
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The “anti-eugenics” lefties also support abortion, is it surprising? This is just the same kind of prenatal screening+culling that’s already perfectly legal (indeed, frequently constitutionally protected), just done earlier in the process.
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If you can love your baby only if it’s guaranteed she won’t have epilepsy, that’s really not love.
I’ve known two people with epilepsy, one very severe. They weren’t wasted lives. Both of them married. They have hobbies, one of them has a job. I also know people born with diabetes or deaf. A close friend was born with a congenital heart defect. And these are all good people. I had a neighbor who was cognitively challenged. He had a job and lived with an old grandma. These are not defective people. They are simply people.
Woe be onto all of us the moment we start seeing epilepsy, arthritis, diabetes, deafness or anything else as something that makes people defective.
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Imagine the bland uniform mush we could have, instead of humanity! Like Children of the Corn…
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”We are all going to get sick. We are all going to die. We are all going to suffer from terrible diseases. This cannot be avoided. It’s the nature of the human condition.”
I’m sorry, but that’s bullshit. My grandmother was healthy, active, and of sound mind until she died suddenly of a stroke at 87. My mother who will be 70 in two months has no chronic diseases.
There is a lot of variety in humans.
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Great!
Most of my older relatives died in their 70s with dementia, unable to recognize their own kids.
But they did a helluva lot with their shorter-than-average healthy years.
Death happens to all of us. Some sooner some later. Illness and infirmity happen to quite a lot of us. None of that is an indication of our worthiness to live.
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OK, your family will always be healthy and will live forever. The rest of us will get sick and eventually die.
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There is a difference between the insane reaction of “don’t you understand that she’s guaranteed to develop obesity and diabetes?” (*)
And from 2007 (iirc)
This is a NIFT check that I had paid for to receive in Israel. Here only the invasive procedure of putting a needle inside a womb (forgot the name in English) is free after the age of 35.
I know things can go wrong even after all checks, yet one can try at least to prevent tragedies.
The story of meth’s niece… I understand the emotional reaction, yet if many parents loved their babies with Down and other most severe conditions, does it mean Denmark’s screening policy is harmful? I disagree and do not think
(*) Btw, I do not think it is true. My maternal grandmother has severe obesity, yet both her daughters do not have this genetic inclination in the same degree and her only granddaughter (me) is naturally thin because of my father’s side of the family.
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Yes, they’ve practically eliminated Downs in Iceland. Meaning they now kill them all before they take a breath. Not all of us see mass murder of inconvenient people as a societal good.
Have you ever *met* any Downs people?
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Cuba has record low infant mortality. This great-sounding stat is achieved by making all even slightly at risk mothers abort. Over the age of 35? Have gestational hypertension? Diabetes? Arrhythmia? Abort, abort, abort.
Cubans feel justified in this because they are preventing the tragedy of infant mortality. Only perfect babies of perfectly healthy mothers are allowed to be born.
I think this is Orwellian horror but many people praise this system.
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