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See, it's stories like this one that make me really question just how ethical it is to completely eliminate Down's from the gene pool. I understand it's the cor
by ghurtado 1y ago
See, it's stories like this one that make me really question just how ethical it is to completely eliminate Down's from the gene pool. I understand it's the correct medical and scientific thing to do, it's just that it sometimes feels a little bit like eugenics for me.
- shadowgovt 1y agoFWIW, since Down's is caused by (we're pretty sure) mitotic error, it can't be completely eliminated from the gene pool. 99% of cases did not occur on hereditary lines. With or without the existence of the treatment, Down's cases would continue to surface. So it's in the category of "treatments parents could choose to apply to their offspring," and generally parents get pretty broad leeway there in choice of the kind of offspring they're aiming for (starting with dating the guy with pretty eyes or the girl with the cute hair thing). ... Whether society is mature enough to recognize that in the presence of that treatment, Down's people will still be born and they have every bit the same dignity-of-human-life as the rest of us is a very important question.
- vtbassmatt 1y agoAs the parent of a child with Down syndrome, I really appreciate the way you and the parent comment approached this topic. Thank you. Tiny nit, in the US it’s “Down syndrome”, not “Down’s”. Apparently we name conditions with a possessive if named for someone with it (“Lou Gehrig’s”) and without the possessive if named for, say, the person who first described the condition in a medical journal.
- suslik 1y agoI don’t think this is true. Two counterexamples: Huntington didn’t have Huntington’s; Wilson didn’t have Wilson’s.
- vtbassmatt 1y agoI had to look both of those up, and you’re right. The rule is inconsistently applied for sure. This got me curious about where the so-called rule came from. Wikipedia says: > Auto-eponyms may use either the possessive or non-possessive form, with the preference to use the non-possessive form for a disease named for a physician or health care professional who first described it and the possessive form in cases of a disease named for a patient (commonly, but not always, the first patient) in whom the particular disease was identified. https://en.wikipedia.org/wiki/List_of_eponymous_diseases#Autoeponym https://en.wikipedia.org/wiki/List_of_eponymous_diseases#Aut... This is sourced by a link to the American Association of Medical Transcriptionists, which is not a body I’d heard of but I guess have some skin in the game when it comes to the intersection of medicine and grammar. https://www.mtstars.com/word-For-eponyms-AAMT-advocates-dropping-the-possessive-form--7011.html https://www.mtstars.com/word-For-eponyms-AAMT-advocates-drop...
- shadowgovt 1y agoThank you! I will keep that in mind.
- ksenzee 1y agoI never knew why the possessive wasn't used, thank you!
- twixfel 1y agoIn the UK for example we don’t go for this performative anti-apostropheism that Americans are so fond of. So it really depends on where you’re from.
- vtbassmatt 1y ago“Performative” feels a bit judgmental, given that America/UK differences in orthography are common. But yeah, y’all spell it differently than we do. I think you might also capitalize the “s” in syndrome?
- allthedatas 1y ago[dead]
- typewithrhythm 1y agoSeeing a minute fraction of their existence is a rubbish way to make a judgement. Most of they bring to the world is random rage, unspeakable fluids, and unpleasant interactions. But I guess driving past safari style is fine.
- smeej 1y agoWhat? Are you talking about real, live people with Down Syndrome? Surveys have consistently shown that they and those who live with them (which is no safari) are happier than everyone else. That wouldn't make much sense if "most" of what they bring to the world is "unpleasant interactions."
- lurk2 1y ago> Surveys have consistently shown that they and those who live with them (which is no safari) are happier than everyone else. Can you point to any that you have read?
- smeej 1y agoHere are a couple: - Parents: https://pmc.ncbi.nlm.nih.gov/articles/PMC3353148/pdf/nihms374764.pdf https://pmc.ncbi.nlm.nih.gov/articles/PMC3353148/pdf/nihms37... - People who have DS: https://pmc.ncbi.nlm.nih.gov/articles/PMC3740159/pdf/nihms374763.pdf https://pmc.ncbi.nlm.nih.gov/articles/PMC3740159/pdf/nihms37... - Siblings of people with DS: https://doi.org/10.1002/ajmg.c.30101 https://doi.org/10.1002/ajmg.c.30101
- lurk2 1y agoThank you. I hadn’t seen any of the literature on this.
- pseudo0 1y ago> A valid and reliable survey instrument was mailed to 4,924 households on the mailing lists of six non-profit Down syndrome organizations. Definitely no sampling bias here... And given that the vast majority of people who do prenatal screening decide not to have a child with Down Syndrome, I don't think the people who choose to have a Down Syndrome child are really representative of prospective parents as a whole. The revealed preference is clear, particularly in places like Iceland where prenatal screening is ubiquitous. They have effectively eradicated Down Syndrome going forward.
- stickfigure 1y agoDon't worry, you can still add alcohol to the fetal growth stage to get Epsilons. No need to leave it to chance.
- vicnov 1y ago> just how ethical it is to completely eliminate Down's from the gene pool wait.. what?
- 6502nerdface 1y agoWait what's wrong with voluntary eugenics? Perhaps the fact that something both "feels like eugenics" and is understood as the "correct medical and scientific thing to do" should cause one to reassess any unexamined, knee-jerk, blanket revulsion to the concept of eugenics that one may have.
- lincon127 1y agoIt is eugenics, I just don't see how that's a problem. Eugenics isn't inherently bad, you're just thinking of bad eugenics.
- SilasX 1y agoRight, there’s eueugenics and dyseugenics.
- deleted 1y ago[deleted]
- RamblingCTO 1y agono slippery slope here, nope.
- ben_w 1y agoSlippery slopes abound everywhere. The fact that you'd be crushed at a depth of (IDK, 2km or so?) underwater doesn't make "swimming" unhealthy. My concern with eugenics is that it's a thing which various groups of extremely narrow-minded bigots push for to promote mutually exclusive ideals, ideals which often have much the same level of biological awareness as an untrained idiot picking up a scuba kit and trying to walk from London to New York along the sea floor. If we go slowly and carefully, if these treatments are optional and not mandatory, we might be able to build a better world without such self-righteous bigots. But this is definitely a case where we want to be slow, spreading this over multiple generations if we can, because we don't know the limits of our own ignorance.
- RamblingCTO 1y ago> because we don't know the limits of our own ignorance oh boy, would we fare better with a lot of stuff if we'd consider this before releasing shit into the wild (asbestos, ptfe, plastics, AI and so on).
- trhway 1y agoWell, the test is simple - would you like to get Dawn chromosome yourself? Or may be have your children get it? I’m sure the answer is No.
- jjj123 1y agoThat is not a simple test. Ask any straight person if they’d want to turn gay, the vast majority would say no. My guess is they’d say no if you asked the same question about their children. But I’m gay, and while there are pros and cons to it, I wouldn’t trade it for anything in the world. And I don’t think just because someone else doesn’t want to be me is a reasonable bar for eradication. To be clear, I’m not saying the two are equivalent, just pointing out that you need a better argument than “you don’t want this for yourself or your children, right?”.
- pseudo0 1y agoWould you want your children to be gay? As a straight person, given the choice I would want my children to be straight, so they could have biological children with their partner and a dating pool of ~48% of the population rather than ~2%. Those are pretty clear objective advantages, even putting aside the issue of societal acceptance. It's completely understandable to have an attachment to one's own identity, but at a certain point trying to impose that identity on one's children becomes ethically questionable. A good example is the deaf community - would it be appropriate for a deaf couple to withhold medical treatment from their child that would allow them to hear? I would argue no, but some people disagree.
- landl0rd 1y agoIf you marry someone to whom you’re attracted, check she’s mentally stable, reasonably healthy, aka reproductively fit, then you’re engaging in eugenics. Eradicating downs is eugenic. It’s also a good thing.
- b3lvedere 1y agoIsn't all life just trying to survive, adapt and overcome?
- iLoveOncall 1y agoI don't see how it is ethical AT ALL to let new children have Down syndrome when we have the ability to eliminate the gene. If Nazis hadn't practiced eugenics it wouldn't have been shuned as it is today. There's nothing wrong with eugenics in itself, just with how it's applied.
- HPsquared 1y agoIt's one thing for the parents to decide, quite another for a bunch of politicians to decide who gets to be born.
- iLoveOncall 1y agoThis research is about removing the extra chromosome, so having the same child be born without the disease, not about aborting the child...
- pfortuny 1y agoSo there is a moral imperative to abort fetuses with Down's syndrome? Wow, that is certainly difficult to explain. Now abortion has become a moral imperative in some cases...
- iLoveOncall 1y agoThe article is literally about removing the extra chromosome and not aborting the fetuses... But yes, I do actually think there is a moral imperative to abort fetuses with diseases that will extremely negatively impact the life of the person and of the people who will have to care for them. That doesn't mean we shouldn't care for them if they happen to be born, not at all, but I don't really understand how it can be controversial otherwise.
- user____name 1y agoThe social effects at scale are what bothers me. Just wait a century until employers put "no genetic defects" in their job applications. Or parents who decide to have old fashioned non-designer babies have trouble getting their kids insured. Or homophobia will become normalized again because "they should have fixed it in the womb". Is this a sufficient reason to not prevent genetic defects? Who can say.