I'm 100% behind women in Iceland. If my wife had received good prenatal testing, she may have decided to abort her third pregnancy. While I am happy living the life we have, in my darkest moments, I don't wish our son's condition on anyone.
P.S.
For anyone who is curious, he has a condition called Lennox-Gastaut Syndrome. It's a rare form of drug resistant epilepsy with none/some underlying conditions. He happened to win the special needs lottery so his form is about as severe as it can be.
https://www.ninds.nih.gov/health-information/disorders/lennox-gastaut-syndrome#:~:text=What%20is%20Lennox%2DGastaut%20syndrome,seizures%20that%20vary%20among%20individuals.
Here is a link for more information.
So do we, I try not to think about it too much. We have guidelines in place in case we both die early. His older siblings say they will keep him out of a care facility as long as is reasonable. I hope they never have to make the sacrifices in their lives that my wife and I have.
Some people keep healthy to enjoy their golden years. I just want to outlive him.
Almost every care facility in the US that would be capable of taking him has been shut down due to neglect and abuse. The few good ones that exist have wait lists decades long. Being a care giver is a calling. it's really hard work and is largely thankless. I know I'm not cut out to care for others that aren't mine. The caregivers and nurses we have are living saints and I would have lost it without them.
I feel this comment in my soul. My son has lissencephaly and severe autism. He's non verbal, can't walk and I don't think he'll ever be more than around 2 years old in functioning ability. I love him so much that even though my life is extremely hard I make those sacrifices for him. But I am terrified of what will happen to him when I'm gone. Multiple times a week I have the recurring thought that I just hope I outlive him so at least I will know he was loved and well cared for until the end.
I suppose I would do the same, but have never been tested in that way. Your comment reminded me yesterday of how fortunate I am to have healthy, happy children and a partner that carries much of the load at home. It gives me even more fuel to do my best in this role. Thanks.
My daughter is 8. Autism. Trashes the house daily. Floods bathrooms. Shrieks with the volume of a KISS concert, and it can last just as long. Started getting better about 3 months ago. For 8 years, I've wondered what the child would say if she could speak. She spoke yesterday. It turns out the answer is, "What the fuck?" Wasn't what I expected her to say, but I'll take it.
My boyfriend has damaged hearing and has gotten become concussed a few times from his brother's screaming and hitting. It's a very hard thing to raise someone on the lower functioning end of the spectrum.
Read about it after this comment. Good god, that wasn't something I would wish on anyone that isn't invading a nation in Europe right now. I hope you have managed to live with the situation, sir.
By parents' choice, not by government force.
What we're actually finding out here is that Iceland has good preventative healthcare with testing and checkups, and also good women's reproductive healthcare to accommodate for free will of the patient.
Oh yeah. I've read studies that showed this over and over. If it happens to them, THEN it's suddenly somehow morally justified. But for anyone else, no.
Which is wild, if you believe in an absolute God with unending infallible punishment why would you pretend to be good but behind close doors be a monster?
Because somehow them "being a monster" isn't actually them being a monster, it's justified in some way, shape, or form
They're such a good Christian, after all
There are “religious” people and those convicted by their faith. The first group usually do not actually represent the latter but it is what society sees. One truly convicted by their faith believes what happens has purpose.
Exactly. These are not government mandated slaughter but individual cases of caring parents who don't want their children to go through hell in life, especially after they're gone.
If anyone has a problem with it, watch The Miracle Worker, a 1962 movie about a girl who was born blind, deaf, and mute, and then tell me that you'd intentionally subject yourself and a person like that to a life of clueless suffering rather than do the right thing and nip it in the bud. Especially since the test is performed in the first trimester, when it's just a bunch of dividing cells without a heart, brain, or functional nervous system.
Helen Keller was not born deaf and blind. She lost her sight and hearing after a bout of serious illness. It is the fact that she originally was able to see and hear that may have contributed either wholly or partially to her eventually learning language.
Sorry, it's been quite a while since I saw that movie but you're right. She lost her senses when she was an infant, not an embryo. The larger point stands, though.
Except it doesn’t, because there are numerous persons with Downs who have gone on to have incredibly impactful and fulfilling lives, as did Helen Keller? Why are you bringing up a person who unquestionably made the world a better place and infamously fought tooth and nail to live… as an example for why these pregnancies should be terminated?
“My life is worth living.” - Frank Stephens
Which is absolutely her right, and is the crux of what makes OP’s comment so bothersome to me. For every stalwart in the Downs community, such as Frank Stephens, who tirelessly campaigned in the 2010s to plead with communities to not encourage blanket recommendations on termination upon positive prenatal testing; there are two people who live absolutely hellish lives full of suffering.
The point is that the people who should be making these decisions are parents who have done their own research and listened to their medical health professionals on the risks and options available. The people making these statements and offering their opinions on the larger debate should be persons with downs syndrome like Frank and caretakers for people with significant and debilitating health conditions. Redditors like OP who watched a completely unrelated documentary 20 years ago to fuel their asspulls, can keep their advice to themselves.
Take it easy, bud. Last time I saw the film was two decades ago so my memory may be a little bit fuzzy, but this tidbit has nothing to do with the point of the post. Which is, if it were a perfectly diagnosable embryonic condition, who in their right mind would still proceed with it, given a choice and after watching the movie? And even if they did, would it really be the more ethical choice?
They didn't make you learn about Helen Keller in school? And I don't know if the miracle worker is really the movie to bring up here. Helen Keller led a very full life.
Sorry, little to be Paddlakanuta. You get to have a boring name.
Edit to flesh out this comment a bit. Some 20-ish years ago, there was a bit of a controversy in Sweden about a couple who were trying to name their daughter Paddlakanuta. They were canoe enthusiasts, and the name literally means Paddlecanoea (the a added to the end to make it a girl's name). They were denied to name their child this, and there was a media rampage to kick up outrage about government overreach. Most people thought it was dumb and that the name sucked.
There was one funny case from New Zealand as well:
"in a 2008 decision, a New Zealand court ordered the parents of a young girl, "Talula Does the Hula From Hawaii," to legally change her name. Justice Robert Murfitt explained that unusual name "makes a fool of the child and sets her up with a social disability and handicap," according to The Telegraph."
I’m waiting on an amnio in a few weeks after cfDNA came back inconclusive and have had a lot of time to research and reflect on raising a kid with a chromosomal abnormality. If it was just about developmental delays, that would be one thing, but people with Down syndrome also have incredibly high rates of kidney, cardiac, and thyroid disease that can frequently require multiple surgeries. There isn’t really a way to know for sure what degree of health complication a baby with a CA will have before birth and I have a hard time with the idea of continuing a pregnancy knowing there’s a high risk that I’m committing that child to a lifetime of surgeries, medications, associated illness and discomfort/pain.
Also, remember that the examples of people living well are the high-functioning examples.
There are many, many, MANY more who are at the opposite end of that spectrum.
Also have a great support system in place willing to care for them and keep them happy. There’s plenty that get dumped off in assisted living facilities or live in poverty for their entire lives because they weren’t lucky enough to be born in families with enough wealth and care.
There are also those who are high functioning for most of their life, but develop issues like Dementia later on (but not at an elderly age). I've seen one of those cases in the last year and it was super sad.
Early dementia is actually extremely common in people with Down Syndrome. Common enough that there is research going on between possible genetic links between Trisomy-21 and Alzheimers. If you have a child with Down Syndrome, you may well (unfortunately, or maybe not) outlive that child.
About half of Down’s patients who live long enough develop Alzheimer’s by 60. Some studies put it as high as 60-80%. Many will start showing symptoms as early as 40.
This is not discussed enough. My sister has Down syndrome and is non-verbal and very low functioning, but we see the stories of higher functioning folks and it can be misleading.
I support the choice and I support women who choose to learn about it and act, but the idea of me having the ability to know and decide before my daughter was born is terrifying. My daughter is level 2 ASD and when we first learned of her diagnosis, I was so depressed. If I had known when my wife was pregnant, I think we would've considered abortion. But now, that's the last thing I would want because the diagnosis has no bearing on how functional my daughter is. Now I can't imagine living without her.
I know down syndrome is different, but where will we draw the line?
Also please consider if you have other children the effect it would have on them. I know a lot of parents who don't take into consideration that once they pass on, their other children become responsible or they expect them to become responsible for the other child. It is patently unfair.
There's so many variables. It is not an easy choice.
Whatever you decide though, I wish you peace.
This is an unfortunate reality. My partner's very estranged father who did not raise them is now incredibly ill. They have another adult child who can not function on their own. Suddenly, they are expecting us to take care of their child when they've passed. Despite having no real relationship or skill set to handle their very specialized needs. It's leading to a lot of stress and emotional turmoil for my partner.
I’m sorry you’re dealing with this. My brother and bil both have high support needs and cannot live independently. Both my parents and my husbands want us to take care of them both in the future, but they don’t want them to live together.
Thinking about it stresses me out! I can’t wrap my mind around it logistically. They are bigger than both of us and can get aggressive. What if they outlive us or we get too frail to care for them. Will our children be responsible for their care one day? I don’t want that for them. I love my brother and brother in law but there are not a lot of supports in our country for people with high needs.
My husband and I have agreed that if there were issues with the baby I'm carrying we would have aborted. We don't have the financial means to take care of a high needs child though we can provide a very comfortable life for a typical kid.
We also will not think twice if our kid ends up needing to be institutionalised either. I've seen what a kid who was on the extremely violent end of autistic can do to people around him. I'm not going to let innocent people be hurt because of my choices.
My cousin has Down syndrome and has been in chronic pain for most of his life. It’s really heartbreaking, especially when you consider that the nature of Down’s syndrome often causes their pain to go unrecognized/under recognized. His cognitive age is supposedly about 7 or 8. Somebody posted above about not having met an unhappy person with Down Syndrome and I just cringe at that. Just because someone appears happy doesn’t mean that they are.
I think people say that because most of the time when people see people with Down’s syndrome say, cleaning tables at Burger King, they’re relatively high functioning. (And like you say, they don’t know their day to day life)
I went to daycare with a girl with Downs Syndrome when I was a kid. She was almost completely non verbal. She constantly threw temper tantrums (probably because that’s the only way she could communicate) and grinded her teeth. I knew that girl for years and I don’t think I ever saw her smile. She seemed constantly miserable and whenever she got sick and was gone for a day or two, like… everyone just felt relief for the day. It’s really sad. In retrospect I wonder if she had autism or something too, I guess it’s not entirely unusual to have both. But when people talk about how people with Down’s syndrome just seem so happy, all I can think about is her.
My coworker has a 17 year old with Downs who also has autism, it is fairly common. We were actually talking about it just yesterday because he seems to be getting worse on the autism side of things for some reason. The kid has all the support and therapy he can get, so they aren't sure if this is just how things are going to progress or what is going on.
I've worked with special needs adults all my professional working life. Trust me, the proportion of happy people with Down Syndrome is about the same as the proportion of happy people without Down Syndrome. You can't generalize about a specific group of people.
I was in high school when a boy dropped dead in the middle of class. The PE teacher knew CPR and had an AED on site and had it inside a minute.
He died on the field, before paramedics arrived, and other students saw. Luckily wasn't my class period.
Cardiac issues can mean short lives, and tragic ends.
That's fucking horrible, cardiac issues are terrifying.
My ex boyfriend was reddish purple after getting out of the shower one night. We'd had some uhhh... bedroom fun right before. 😂 He has hypertrophic cardiomyopathy, but tbh I had no idea what that meant when he told me at the beginning of our relationship.
He kept insisting he felt fine, but I was panicking. At most, he had a headache and wanted to lay down and go to bed. I called 911 anyways, saying I think my bf is having a heart attack or something and described what he looked like. They were there in minutes along with police and firefighters (idk why they all came lol).
We were just standing there chatting while they did my ex bf's BP, they were basically just asking me what we'd been doing before this (kinda embarrassing but I told the truth) As soon as that number popped up, every single one of them collectively said "holy fuck" at the same time and jumped into action. 234/220! When my ex bf smoked some pot earlier with his friend, plus the sex and steaming hot shower too... I guess his heart tried to go into overdrive. He could have passed in his sleep and I wouldn't have known anything was wrong until I got home from work the next day, as he usually slept earlier than me and usually still sleeping when I'd leave for work.
To answer your question about why they all came - when you told them you thought something was wrong with his heart, sending every available unit is the normal emergency response. Which is totally fine. It’s done to save lives. And looks like in your BF’s case, he needed that help.
I worked at special needs care throughout college and with a personal family friend with DS for years prior. The real truth is that most of these folks will be discarded due to the struggles the family endures at some point in their life and put on some kind of government care or assistance to give parents a break. Your life changes in an absolutely negative way after having a child with severe DS. Some families can handle it, many cannot, and I don't blame them. Personally if I was having a child and it was detected early that they were DS, I would choose to terminate.
I’m a pediatric nurse and although I haven’t worked closely with a lot of children with DS, I’ve worked with my fair share of children with truly awful genetic conditions. They are all individuals with intrinsic value. But there are so many factors that have to be considered, such as you mentioned. I’m not sure what I would want to do if I were pregnant and a concerning genetic condition like DS was detected. However, for the sake of my family and my own sanity, I would most likely choose to terminate the pregnancy.
To be honest, is pains me enough as it is to know I passed adhd to my kid and that she is at risk of developing a couple other chronic conditions (diagnosed in me after I had her) that may significantly affect her quality of life down the road. I can’t imagine knowingly bringing a child with more severe conditions into the world. I absolutely do not fault any parent who does - it’s a complicated issue. But as a mom and a nurse, it would just be too much for me to handle in good conscience.
It also commits the family to becoming full time care givers and causes the rest of the family to sacrifice their own lives and personal growth and happiness. My friend loves his sister but he had to give up his teen years and it set him back socially and emotionally.
I would be more concerned about the ethics involved in other countries where prenatal care is limited and women's health rights are driven by religious "morals".
I’m thinking that “bioethics experts” should be more concerned about countries where there is a lack of testing and prenatal care, and some women don’t have a choice, like many states in the United States.
I'm doing genetic carrier screening right now with a genetic counselor. It's not in any way covered by insurance. Carrier screening can be so incredibly important before a pregnancy to know what to be concerned about.
Are you doing this before you get pregnant? My daughter is 21 and one of these years she will have a baby. I would like to let her know what kind of screening her and her potential husband should have done before trying to have a baby.
Yup! We're planning to have kids in a few years. It's a genetic testing option. There is a registry of genetic counselors [indageneticcounselor.nsgc.org](https://findageneticcounselor.nsgc.org) where she can find someone. Insurance doesn't typically cover it, I think I paid $250 for the counseling session and $100 something for the test. It takes about 2 weeks for the results.
Typically one partner (the woman) does it and if she is positive for anything, then her partner does it. The genetic counselor can talk about what the results mean and a few things actually show up as health concerns if you're just a carrier. I mostly learned about it from an episode of a podcast about the fertility industry (how genetic testing is not a substitute for family history). She did a [part 1](https://open.spotify.com/episode/4fax5auepCcukzPc4pXyze?si=gORQtovKQ1amHAin9daWnw), [part 2](https://open.spotify.com/episode/7DrjkgWBl23hgLhvaXiiKs?si=BqHBQU2DSxSMSm-4OuVawA) and [part 3](https://open.spotify.com/episode/1F49pDGcwhJDyhMJs0XGUp?si=-3qNY_YIT7uTmpjKNKAqaw) walking through her experience of getting genetic testing done (not specifically carrier screening but broad genetic testing).
My counselor walked through my family history with me (I was asking about carrier screening and cancer screening). Discussing family history of different illnesses and miscarriage (which can indicate fetal abnormalities). Even though there's lots of cancer in my family, it's not the kind that is typically genetically, so we decided not to do a cancer panel at this time. My husband and I don't have any significant overlapping regional heritage and neither of us have significant issues in our families commonly related to genetic illnesses nor a known significant family history of miscarriages. Which is all good stuff. So I actually feel really chill waiting for my results. If I am a carrier for something, my counselor will talk through what that means bit typically it doesn't mean anything if my husband doesn't carry the same thing, only that there's a 50/50 chance my kid is also a carrier.
I'm 1 week in to my 2 week wait for results after mailing in my spot in a tube.
Edit: that doesn't mean I wouldn't carry a pregnancy to term that has an abnormality. I'd want to know what to look out for and what my chances of everything are. If I could know that my kid could be healthier vs not, I want to do everything I can. Informed consent saves lives.
Wow! Thank you so much for this information. It’s a wealth of knowledge. I will listen to the podcasts you linked.
Wishing you happiness with your someday baby!
I know someone who adopted a down syndrome baby because they’re against abortion. They are now 79 and 80, the child is in her late 40’s. I’m not kidding, they tracked down the birth mother and asked if she would like to have her back.
No, they’re not really the greatest people. They are Canadian so there’s lots of support and she will be taken care of. They were just trying to make a point
They don’t have someone in their church that would want this 40yr? I thought that’s what church people chimed about. All day everyday. God will take care of them.
Well, here is the adult kid. Time for the church people to step up.
Crickets.
This is one of my beefs with a lot of conservative Christians (I'm a more liberal leaning one in a conservative church, it's great fun!!). Easy to say Don't Abort, but I don't see too many stepping up to be foster parents, kudos to those few that I know that have.
I remember that this subject came up some years ago here on Reddit, and it was downright scary to see how many commenters were bitterly raging against the idea of Icelandic women being given the *choice* to avoid giving birth to children with Down's syndrome, by yelling about eugenics (when Down's is a random chromosomal error, AFAIK, and will thus never go away) or how all people with Down's *they* know are great so it's monstrous to abort them (while they never see all of those lower functioning people with Down's who destroy families due to their extreme care demands and being small children in strong adult bodies with no impulse control or ability to understand they can't get physical when they don't get what they want).
As a person with a disability from birth... I'm ok with this. It takes so much effort and time and for what? A guaranteed crappy life? 0.00000001% chance of being somewhat normal?
I feel similarly. I have (now in remission!) disabilities/chronic illnesses, which manifested in severe chronic pain and entire years of being bedridden. If I had a child with the same illnesses, of course I’d support them and show them how to thrive!
But never in a million years would I wish the pain I’ve had to endure, and the many negative effects on decades of my life and my youth, on my worst enemy. So of course I’m not going to wish it on a baby I’d love more than anyone! And of course I’m going to want to give future children the best life possible.
I did genetic testing when pregnant. Baby was thankfully the “lowest risk”, but I’d have followed up with more testing and then aborted if risks had been higher.
Carrier screening is still not covered by most insurance and not significantly talked about. I'm getting it done now before planning to conceive in a few years.
My mom had fetal alcohol syndrome because her mom didn't want kids so much that she tried to get drunk to abort. When she had my mom she made them give her a hysterectomy. We later found out she was lesbian but it was the 40s and her husband was abusive... to both his wives and all his kids. And then he drove drunk off a bridge. So yeah a lot of alllll the shit I have going on could have been prevented if my grandma had been allowed to just be a happy tiny lesbian.
If you make no decision, that is also a decision. Is choosing to do nothing in that situation, and allow things outside of your control to progress to their conclusion, free of bioethics considerations?
I feel that this is where lot of bioethics gets fuzzy, and that aspect is often overlooked. We seem to give moral priority to inaction, but at the end of the day, when you have that choice, any decision is an active decision. Choosing inaction, and thus it's consequences, is as much of a choice as taking action. Neither is a neutral choice. With that in mind, I have a very hard time saying that there is something truly unethical going on here.
If they wanted to go for low hanging fruit they should have gone after people that will abort based on gender. This thing is basically a nothing burger. If you don't like it then don't do it. But keep out of the decisions other people make.
As the parent of a child with Down syndrome, I completely agree.
Abortion is basic healthcare and healthcare is a human right. No one should decide for anyone else what to do with their own body.
The only issue that I could possibly see is if there is a cultural bias against people that have Down syndrome. If that’s the case, then people should be educated on that but no one should be forced to have any baby they don’t want for whatever reason.
I am going to have to take care of my disabled, mentally challenged , autistic niece in a few years. To be honest I am bitter about it.
I could only anonymously say that here. My family would be aghast. I’m afraid if I said this to a counselor they would think I was a monster.
I’m crying just thinking about it. She was born to two meth addicts. They were making meth in a 15ft trailer in Alaska. I don’t know that the meth had anything to do with how she was born, but it didn’t help.
You do not have to. Her guardians will need to come up with a different plan. You will be pressured to care for her, but you can, and should, say No, firmly and with compassion.
Some bioethics experts also think its a moral imperative to abort these pregnancies. Why is this article fearmongering instead of asking more countries to follow Icelands lead?
I'm not seeing a problem here. Is it a touchy issue? For sure, but if the parents don't want to bring a disabled child into the world, it should be their right to choose not to. Its not easy raising a mentally disabled child, and the parents that do are amazing, but it's a life long commitment that not everyone wants to (or even has the ability to) sign up for. I'd rather have an aborted pile of cells than a mentally disabled child that isn't getting the proper care they need.
I don’t really think its a bad thing as long as they were given an informed choice and not coerced into it.
Like it or not, its very hard to care for a disabled kid that has only a slim chance to be independent. Its time and money consuming, its hard on the siblings who will likely not get as much attention and expected to care for the DS individual once the parents get too old, its hard on the parents who will either have to care for them for life or send them to live under relatives or in a group home. Its hard for the DS individual themselves if/when they realize they will never get the same opportunities and privileges healthy people in their age group have.
It’s not fair but thats the way it is.
I have a family member with Down syndrome as well as a very close friend whose sister has it. They are wonderful, sweet, loving people. That said, raising and caring for them was a life-changing and difficult commitment for their families. Whatever beauty it may come with, I don't think anybody should be obligated into taking it on unwillingly.
Exactly, it's easy to tell someone what they "must" do when they're faced with a choice like this, when you're in a position where you take zero responsibility for the end result and never have to think about it again after your advice. Generally applies to elective abortion but especially in the case of diagnosed severe disabilities.
Like 99.99% of Redditors in this thread with very strong opinions but no actual experience other than “a friend’s daughter’s boyfriend knows a lady that once knew someone with a child with Down Syndrome”?
While I fully agree with this practice of screening and abortion of people with disabilities like this, the "bioethics expert" quoted in the article is a left wing professor who specializes in things like "feminist theory". I doubt she's the right wing religious American you're thinking of.
This is the one debate where I somehow wind up on the same side as unethical Chinese scientists bc the “bioethics experts” always seem like one bad day from demanding cochlear implants and overly expensive prosthetic hands be banned
It could be, but in this case it’s not. This is an absolutely great article on bioethics and presents a variety of takes on the subject.
Here’s an interesting quote that makes you think on the ethics of the situation:
> He stresses that people with Down syndrome overwhelmingly consider themselves to have great lives, especially as health care, early intervention and support services have improved over the past few decades.
Opinions from those with a syndrome of primarily mental deficiency, and well-known to make the person gullible and suggestible. Maybe those that respond are mentally capable of doing so and, presuming were not coached to respond that way; like autism, it's biased towards the high-functioning, and neglecting to include the vast swaths on the lower end of the spectrum that literally need to be hand-fed and have their asses wiped due to their profound inability to self-care. Objectively, terrible lives.
And there's no test that is going to tell the parents if their disabled child is going to grow up to be Dan Akyroyd Tier, Temple Grandin tier, or that 30 year old "kid" that [punches holes in the walls](https://www.youtube.com/watch?v=j4PTf7LgsIE) with permanent caretaker parents driven to an early grave.
And their families, if not rich already, are taken from their own lives to take care of the child more intensively and even the other siblings have to take on responsibilities that no child should have to. The modern world is also hell TO most of us with disabilities. When the world is too much for us the rest of the world views us as a problem. If I was having kids I wouldn't subject that child to this life, let alone a life with downs syndrome.
My friend's sister is profoundly handicapped by her downs syndrome and he loves that she has irrepressible golden retreiver energy. But at the same time after his dad got sick it fell to him to keep her safe as she got too big for their mom to handle when he was a teen. He didn't get a childhood because his sibling was an all hands on deck job. Its not just about the person with downs.
If you're fortunate enough to have relatively mild symptoms, sure, prognosis is pretty good these days. Most aren't so lucky, and the ethics of taking answers to such a question from a more representative sampling of people with Down's are questionable at best.
The person you quoted isn't a bioethicist and is cherrypicking.
It’s quite common here in Australia too.
Yea it’s a bit of eugenics, but it hopefully means any life that becomes conscious has the best chance at a fair and long life - without prejudice, and health/cost issues.
It's not eugenics - eugenics is coordinated, often coercive programs to create a specific population! Eugenics is bad because it's an excuse to kill people and deny people their right to reproduce (or not reproduce). This is parents deciding not to have a baby that they can't raise - just a totally normal abortion. The people who are against this are nutbags.
A few years ago my brother studied dance in Ireland (we’re American) and shared his pictures with me of a therapeutic dance group he led for kids and teens with Downs Syndrome. I mindlessly commented “oh wow I can’t remember the last time I saw so many people with Down syndrome in one place.”
My brother replied, “Well yeah, people elect to terminate for Downs in the States and you couldn’t get an abortion in Ireland until recently.”
I support terminating for any reason but this fact was sobering. Sadly, with abortion bans, the US is likely to see the population of kids with Down syndrome rise again, but Conservatives have slashed so many education and healthcare benefits for struggling families Idk how they’ll get by with a kid who has special needs.
There is no such thing as not acting in Bioethics. Not acting is a way of acting because human life is finite and thus not acting implies there is a consequence for doing so as time doesn't stop running until people find a optimal ethical solution.
Eugenics had a ton of nutjobs in the early 20th century and it got a bad name. So no one wants to use the term anymore. But if over 90% of fetuses at high risk or proven to have significant chromosome abnormality are aborted, then yes, this is eugenics. Doesn't mean it is inherently bad.
My line of work puts me in close contact with many severely disabled school age kids. What I see is amazing dedication by these student's instructors, the effort required is in the region of 20-1 vs a neurotypical student. Most of our alternative education program kids are 1-1 or 2-1 for instruction and to be completely frank, it looks exhausting. I would not for a moment question a potential parent's decision to "try again" the alternative is dedicating oneself to lifetime care for a child, who may never become independent, and will not have anyone to care for them when their parents inevitably pass.
Its a tough topic. Click bait headline.
Those children need a lot of extra care. That extra care costs a lot of money and time over a 60 year or longer lifespan. That type of care is not cheap.
A very small percentage of t21 are able to live a life entirely independent of care or assistance.
I get why those in that community and who work with T21 folks would be horrified and concerned by that. Those are the "some experts" that are voicing concern.
Given a lot of the economics and time commitments of our more developed world today, any child for many people, is not really an option for many folks who lack support or ability to provide the things it needs and the parents need.
Eugenics has a horrible backstory, but I wouldn't want my child to be born with that handicap in this world. I spent many years in my youth working with these very folks. Many develop dementia as they age (and that can be dangerous if the person is strong) yet have minds that function similar to children and IQ's in the 40 to 50 range, far below normal.
I think that choice, like many should be an informed one for the parents and their medical providers alone and not up for public debate. Just like Iceland and some other countries currently have as mentioned in the article.
That’s when you give your child with down syndrome to those bioethics experts for them to raise. Problem solved. Women don’t have to explain why they want an abortion.
why? it's a personal choice between two adults and they're saving that offspring a lifetime of personal developmental disabilities, there's also no telling what other comorbidities may affect them. it's the responsible choice.
It wasn’t that long ago that half of the children born were dead before adulthood. Nature used to do a lot more weeding out of humans than what is going on in Iceland.
Good for them. It's cruel to knowingly bring a child into the world that is going to have a poor quality of life. And if the child outlives the parents, their child ends up in a group home or is a burden to their siblings who didn't ask for that life. But some people have a savior complex and want the praise and attention that comes with having a disabled child.
Being able to prevent people from being born with a disease is literally ethical. The whole point of medical technology progressing is to treat and prevent diseases. I could never live with myself if I knowingly caused someone to exist with a condition that will cause a lifetime of struggle and suffering.
It is a disability, and, if the parents and that fetus can be spared all the stress and heartache before the fetus is even conscious, then I support them.
Concerned about what, exactly. If we, as a species, can know in advance when something is not going right with a birth, and can try again... where exactly is the problem. Those women have the right to a healthy baby. More power to them.
Why, because it’s more “ethical” to bring a child into the world that you know for certain will lead a life beset by chronic medical challenges and diminished of opportunity and acceptance than it is to save both yourself and the child the trouble of having to live through that?
Some fucking “ethics” there.
I have autism. High-enough functioning and am good enough at masking that you probably wouldn’t ever know unless I told you, but it fucking sucks. I’m 26 and still living at home because every traditional office job I’ve had has ended badly, either being laid off or fired largely for reasons outside my control but that were exacerbated by my impairments. I really, really struggle to make new friends. I struggle with self-worth so badly that I’ve never seriously pursued finding a relationship despite desperately wanting a partner, because I’m convinced I have nothing to offer besides hyperfixations. Hell, even Forrest fucking Gump found love and had a kid.
And I got *lucky*. According to my parents there was an extremely high chance I’d have been born with Down Syndrome, but the cosmic dice rolled my way in that sense.
I would *never* want to put a child through something like that if it was in my power to avoid it.
If people are honest this is a debate for which there's no "correct" answer. It mixes cultural norms, the definition of, "quality of life," and perhaps most contentiously the possibilities enabled by legalized abortion. "Bioethics experts are concerned," but TBH they're bystanders in this experiment in civilization. I can't help but wonder how this situation might be viewed by decedents 100 years in the future. Will Trisomy 21 still exist (I think so)? Or might there be genetic manipulation possible after conception, during pregnancy? And if that manipulation comes with a risk of death, where's the line between intervention and nature?
Almost 10 years ago now I lived in Iceland with my then Icelandic boyfriend and he made a joke about this and why you never see people with Down syndrome in Iceland.
Iceland isn't even a huge outlier; in Europe as a whole, including some very Catholic countries, the rate was 92%.
https://pubmed.ncbi.nlm.nih.gov/10521836/
>specify that autism can also be prevented.
They don't even know for sure what causes autism, pretty hard to prevent something without knowing how it happens.
Autism isn’t a single ailment. The causes of these complex deficits are not known. There are similarities between some individuals, but there is not an emerging pattern. No two cases are alike. ✌️❤️🌵
What a lot of people don't seem to remember is that Iceland has about the same population as Tacoma, WA. This limits the services and care that people can get without moving to Europe mainland.
Those "experts" should try to raise their own kid with such a diagnose. I bet most of them are unmarried and childless. I wouldn't be able to and hat off to everyone with strength to do so
I support this.. before I finished nursing I worked as a cna in a mental facility. I would never be able to raise a child with autism. That is my personal choice. I would even bring the child into this world at all..
I'm 100% behind women in Iceland. If my wife had received good prenatal testing, she may have decided to abort her third pregnancy. While I am happy living the life we have, in my darkest moments, I don't wish our son's condition on anyone. P.S. For anyone who is curious, he has a condition called Lennox-Gastaut Syndrome. It's a rare form of drug resistant epilepsy with none/some underlying conditions. He happened to win the special needs lottery so his form is about as severe as it can be. https://www.ninds.nih.gov/health-information/disorders/lennox-gastaut-syndrome#:~:text=What%20is%20Lennox%2DGastaut%20syndrome,seizures%20that%20vary%20among%20individuals. Here is a link for more information.
I worry about care of after the parents pass. A very vulnerable population
So do we, I try not to think about it too much. We have guidelines in place in case we both die early. His older siblings say they will keep him out of a care facility as long as is reasonable. I hope they never have to make the sacrifices in their lives that my wife and I have. Some people keep healthy to enjoy their golden years. I just want to outlive him.
Totally get that. I worked in a retirement home a bit. Institutional care I’m very wary of.
Almost every care facility in the US that would be capable of taking him has been shut down due to neglect and abuse. The few good ones that exist have wait lists decades long. Being a care giver is a calling. it's really hard work and is largely thankless. I know I'm not cut out to care for others that aren't mine. The caregivers and nurses we have are living saints and I would have lost it without them.
Unfortunately not all. Yanking 90 year old out of bed for seven. If I was ever lucky enough to live that long. I’m sleeping in
The men were treated worse. Chemically handcuffed with any slight out burst
I'm sorry you had those experiences. I hope you have been able to heal from them.
Honestly the best thing I ever did. When your young you don’t ever think about palliative care
I feel this comment in my soul. My son has lissencephaly and severe autism. He's non verbal, can't walk and I don't think he'll ever be more than around 2 years old in functioning ability. I love him so much that even though my life is extremely hard I make those sacrifices for him. But I am terrified of what will happen to him when I'm gone. Multiple times a week I have the recurring thought that I just hope I outlive him so at least I will know he was loved and well cared for until the end.
Yes, 100% yes. I hope I can be enough long enough.
I have nothing to add here, other than your dedication to providing the best for your kid brought me to tears.
You are a brave motherfucker, a real fuckin’ hero in my book. I salute you and your wife for carrying that load.
Thank you for that, I've always just seen it as part of the job of being a parent. I'm stubborn and won't give up till it kills me. 😉
I suppose I would do the same, but have never been tested in that way. Your comment reminded me yesterday of how fortunate I am to have healthy, happy children and a partner that carries much of the load at home. It gives me even more fuel to do my best in this role. Thanks.
My daughter is 8. Autism. Trashes the house daily. Floods bathrooms. Shrieks with the volume of a KISS concert, and it can last just as long. Started getting better about 3 months ago. For 8 years, I've wondered what the child would say if she could speak. She spoke yesterday. It turns out the answer is, "What the fuck?" Wasn't what I expected her to say, but I'll take it.
My boyfriend has damaged hearing and has gotten become concussed a few times from his brother's screaming and hitting. It's a very hard thing to raise someone on the lower functioning end of the spectrum.
Read about it after this comment. Good god, that wasn't something I would wish on anyone that isn't invading a nation in Europe right now. I hope you have managed to live with the situation, sir.
By parents' choice, not by government force. What we're actually finding out here is that Iceland has good preventative healthcare with testing and checkups, and also good women's reproductive healthcare to accommodate for free will of the patient.
And doesn’t have a religious society that guilts people into burdensome lives with the threat of hell.
Religious people tend to be huge hypocrites though
Oh yeah. I've read studies that showed this over and over. If it happens to them, THEN it's suddenly somehow morally justified. But for anyone else, no.
Seen it multiple times in relatives of mine.
https://joycearthur.com/abortion/the-only-moral-abortion-is-my-abortion/
I read that right before I started medical school. I always think of it whenever I see religious protestors outside a planned parenthood
The only moral abortion, is my abortion
Which is wild, if you believe in an absolute God with unending infallible punishment why would you pretend to be good but behind close doors be a monster?
Because somehow them "being a monster" isn't actually them being a monster, it's justified in some way, shape, or form They're such a good Christian, after all
There are “religious” people and those convicted by their faith. The first group usually do not actually represent the latter but it is what society sees. One truly convicted by their faith believes what happens has purpose.
Exactly. Threaten people with something that isn’t even real. All in the name of what?
Social control. It's extremely important if you want someone to go along with being economically controlled and exploited.
It’s only a threat if you believe in it.
Which Icelanders by and large don’t.
And a mostly well-educated society even though to be fair, it's a small country.
Exactly. These are not government mandated slaughter but individual cases of caring parents who don't want their children to go through hell in life, especially after they're gone. If anyone has a problem with it, watch The Miracle Worker, a 1962 movie about a girl who was born blind, deaf, and mute, and then tell me that you'd intentionally subject yourself and a person like that to a life of clueless suffering rather than do the right thing and nip it in the bud. Especially since the test is performed in the first trimester, when it's just a bunch of dividing cells without a heart, brain, or functional nervous system.
Helen Keller was not born deaf and blind. She lost her sight and hearing after a bout of serious illness. It is the fact that she originally was able to see and hear that may have contributed either wholly or partially to her eventually learning language.
Sorry, it's been quite a while since I saw that movie but you're right. She lost her senses when she was an infant, not an embryo. The larger point stands, though.
Except it doesn’t, because there are numerous persons with Downs who have gone on to have incredibly impactful and fulfilling lives, as did Helen Keller? Why are you bringing up a person who unquestionably made the world a better place and infamously fought tooth and nail to live… as an example for why these pregnancies should be terminated? “My life is worth living.” - Frank Stephens
Her remarkable struggle and triumph also led her to support eugenics later in life.
Which is absolutely her right, and is the crux of what makes OP’s comment so bothersome to me. For every stalwart in the Downs community, such as Frank Stephens, who tirelessly campaigned in the 2010s to plead with communities to not encourage blanket recommendations on termination upon positive prenatal testing; there are two people who live absolutely hellish lives full of suffering. The point is that the people who should be making these decisions are parents who have done their own research and listened to their medical health professionals on the risks and options available. The people making these statements and offering their opinions on the larger debate should be persons with downs syndrome like Frank and caretakers for people with significant and debilitating health conditions. Redditors like OP who watched a completely unrelated documentary 20 years ago to fuel their asspulls, can keep their advice to themselves.
The test is usually performed after 10 weeks and before 20 weeks.
This is a very poor example, since Helen Keller went to college and became an activist. She led a more productive life than most people.
Okay, Helen Keller was not BORN that way. And she was not mute. Read a goddamn book.
Helen Keller: a life by Dorothy Herrmann is EXCELLENT! Truly!
Take it easy, bud. Last time I saw the film was two decades ago so my memory may be a little bit fuzzy, but this tidbit has nothing to do with the point of the post. Which is, if it were a perfectly diagnosable embryonic condition, who in their right mind would still proceed with it, given a choice and after watching the movie? And even if they did, would it really be the more ethical choice?
They didn't make you learn about Helen Keller in school? And I don't know if the miracle worker is really the movie to bring up here. Helen Keller led a very full life.
Calm down
Go bathe a cat.
Ooh I love that as a comeback. I have to remember that one.
Their Government won't let you give your child a stupid name.
Sorry, little to be Paddlakanuta. You get to have a boring name. Edit to flesh out this comment a bit. Some 20-ish years ago, there was a bit of a controversy in Sweden about a couple who were trying to name their daughter Paddlakanuta. They were canoe enthusiasts, and the name literally means Paddlecanoea (the a added to the end to make it a girl's name). They were denied to name their child this, and there was a media rampage to kick up outrage about government overreach. Most people thought it was dumb and that the name sucked.
There was one funny case from New Zealand as well: "in a 2008 decision, a New Zealand court ordered the parents of a young girl, "Talula Does the Hula From Hawaii," to legally change her name. Justice Robert Murfitt explained that unusual name "makes a fool of the child and sets her up with a social disability and handicap," according to The Telegraph."
I’m waiting on an amnio in a few weeks after cfDNA came back inconclusive and have had a lot of time to research and reflect on raising a kid with a chromosomal abnormality. If it was just about developmental delays, that would be one thing, but people with Down syndrome also have incredibly high rates of kidney, cardiac, and thyroid disease that can frequently require multiple surgeries. There isn’t really a way to know for sure what degree of health complication a baby with a CA will have before birth and I have a hard time with the idea of continuing a pregnancy knowing there’s a high risk that I’m committing that child to a lifetime of surgeries, medications, associated illness and discomfort/pain.
Also, remember that the examples of people living well are the high-functioning examples. There are many, many, MANY more who are at the opposite end of that spectrum.
Also have a great support system in place willing to care for them and keep them happy. There’s plenty that get dumped off in assisted living facilities or live in poverty for their entire lives because they weren’t lucky enough to be born in families with enough wealth and care.
There are also those who are high functioning for most of their life, but develop issues like Dementia later on (but not at an elderly age). I've seen one of those cases in the last year and it was super sad.
This 👆 development delays are likely neurological and can be progressive
Early dementia is actually extremely common in people with Down Syndrome. Common enough that there is research going on between possible genetic links between Trisomy-21 and Alzheimers. If you have a child with Down Syndrome, you may well (unfortunately, or maybe not) outlive that child.
About half of Down’s patients who live long enough develop Alzheimer’s by 60. Some studies put it as high as 60-80%. Many will start showing symptoms as early as 40.
This is not discussed enough. My sister has Down syndrome and is non-verbal and very low functioning, but we see the stories of higher functioning folks and it can be misleading.
I support the choice and I support women who choose to learn about it and act, but the idea of me having the ability to know and decide before my daughter was born is terrifying. My daughter is level 2 ASD and when we first learned of her diagnosis, I was so depressed. If I had known when my wife was pregnant, I think we would've considered abortion. But now, that's the last thing I would want because the diagnosis has no bearing on how functional my daughter is. Now I can't imagine living without her. I know down syndrome is different, but where will we draw the line?
Also please consider if you have other children the effect it would have on them. I know a lot of parents who don't take into consideration that once they pass on, their other children become responsible or they expect them to become responsible for the other child. It is patently unfair. There's so many variables. It is not an easy choice. Whatever you decide though, I wish you peace.
This is an unfortunate reality. My partner's very estranged father who did not raise them is now incredibly ill. They have another adult child who can not function on their own. Suddenly, they are expecting us to take care of their child when they've passed. Despite having no real relationship or skill set to handle their very specialized needs. It's leading to a lot of stress and emotional turmoil for my partner.
I’m sorry you’re dealing with this. My brother and bil both have high support needs and cannot live independently. Both my parents and my husbands want us to take care of them both in the future, but they don’t want them to live together. Thinking about it stresses me out! I can’t wrap my mind around it logistically. They are bigger than both of us and can get aggressive. What if they outlive us or we get too frail to care for them. Will our children be responsible for their care one day? I don’t want that for them. I love my brother and brother in law but there are not a lot of supports in our country for people with high needs.
He have a son that will 3 when this baby is born and he was a preemie. We definitely aren’t open to a medically complex baby if we have a choice.
My husband and I have agreed that if there were issues with the baby I'm carrying we would have aborted. We don't have the financial means to take care of a high needs child though we can provide a very comfortable life for a typical kid. We also will not think twice if our kid ends up needing to be institutionalised either. I've seen what a kid who was on the extremely violent end of autistic can do to people around him. I'm not going to let innocent people be hurt because of my choices.
My cousin has Down syndrome and has been in chronic pain for most of his life. It’s really heartbreaking, especially when you consider that the nature of Down’s syndrome often causes their pain to go unrecognized/under recognized. His cognitive age is supposedly about 7 or 8. Somebody posted above about not having met an unhappy person with Down Syndrome and I just cringe at that. Just because someone appears happy doesn’t mean that they are.
I think people say that because most of the time when people see people with Down’s syndrome say, cleaning tables at Burger King, they’re relatively high functioning. (And like you say, they don’t know their day to day life) I went to daycare with a girl with Downs Syndrome when I was a kid. She was almost completely non verbal. She constantly threw temper tantrums (probably because that’s the only way she could communicate) and grinded her teeth. I knew that girl for years and I don’t think I ever saw her smile. She seemed constantly miserable and whenever she got sick and was gone for a day or two, like… everyone just felt relief for the day. It’s really sad. In retrospect I wonder if she had autism or something too, I guess it’s not entirely unusual to have both. But when people talk about how people with Down’s syndrome just seem so happy, all I can think about is her.
My coworker has a 17 year old with Downs who also has autism, it is fairly common. We were actually talking about it just yesterday because he seems to be getting worse on the autism side of things for some reason. The kid has all the support and therapy he can get, so they aren't sure if this is just how things are going to progress or what is going on.
I've worked with special needs adults all my professional working life. Trust me, the proportion of happy people with Down Syndrome is about the same as the proportion of happy people without Down Syndrome. You can't generalize about a specific group of people.
Some aspects sound similar to a student I worked with who suffered from severe angelmans syndrome. I still think about that girl decades later.
I was in high school when a boy dropped dead in the middle of class. The PE teacher knew CPR and had an AED on site and had it inside a minute. He died on the field, before paramedics arrived, and other students saw. Luckily wasn't my class period. Cardiac issues can mean short lives, and tragic ends.
That's fucking horrible, cardiac issues are terrifying. My ex boyfriend was reddish purple after getting out of the shower one night. We'd had some uhhh... bedroom fun right before. 😂 He has hypertrophic cardiomyopathy, but tbh I had no idea what that meant when he told me at the beginning of our relationship. He kept insisting he felt fine, but I was panicking. At most, he had a headache and wanted to lay down and go to bed. I called 911 anyways, saying I think my bf is having a heart attack or something and described what he looked like. They were there in minutes along with police and firefighters (idk why they all came lol). We were just standing there chatting while they did my ex bf's BP, they were basically just asking me what we'd been doing before this (kinda embarrassing but I told the truth) As soon as that number popped up, every single one of them collectively said "holy fuck" at the same time and jumped into action. 234/220! When my ex bf smoked some pot earlier with his friend, plus the sex and steaming hot shower too... I guess his heart tried to go into overdrive. He could have passed in his sleep and I wouldn't have known anything was wrong until I got home from work the next day, as he usually slept earlier than me and usually still sleeping when I'd leave for work.
Omg you saved your ex bf's life that night. I hope you always follow your intuition after that 💕
To answer your question about why they all came - when you told them you thought something was wrong with his heart, sending every available unit is the normal emergency response. Which is totally fine. It’s done to save lives. And looks like in your BF’s case, he needed that help.
I worked at special needs care throughout college and with a personal family friend with DS for years prior. The real truth is that most of these folks will be discarded due to the struggles the family endures at some point in their life and put on some kind of government care or assistance to give parents a break. Your life changes in an absolutely negative way after having a child with severe DS. Some families can handle it, many cannot, and I don't blame them. Personally if I was having a child and it was detected early that they were DS, I would choose to terminate.
I’m a pediatric nurse and although I haven’t worked closely with a lot of children with DS, I’ve worked with my fair share of children with truly awful genetic conditions. They are all individuals with intrinsic value. But there are so many factors that have to be considered, such as you mentioned. I’m not sure what I would want to do if I were pregnant and a concerning genetic condition like DS was detected. However, for the sake of my family and my own sanity, I would most likely choose to terminate the pregnancy. To be honest, is pains me enough as it is to know I passed adhd to my kid and that she is at risk of developing a couple other chronic conditions (diagnosed in me after I had her) that may significantly affect her quality of life down the road. I can’t imagine knowingly bringing a child with more severe conditions into the world. I absolutely do not fault any parent who does - it’s a complicated issue. But as a mom and a nurse, it would just be too much for me to handle in good conscience.
Those people are too dumb to realize that many people with Down's simply cannot properly express their pain like you and I can.
Carrying a baby with Down syndrome also increases the risks of complications to the mother.
It also commits the family to becoming full time care givers and causes the rest of the family to sacrifice their own lives and personal growth and happiness. My friend loves his sister but he had to give up his teen years and it set him back socially and emotionally.
I would be more concerned about the ethics involved in other countries where prenatal care is limited and women's health rights are driven by religious "morals".
I’m thinking that “bioethics experts” should be more concerned about countries where there is a lack of testing and prenatal care, and some women don’t have a choice, like many states in the United States.
I'm doing genetic carrier screening right now with a genetic counselor. It's not in any way covered by insurance. Carrier screening can be so incredibly important before a pregnancy to know what to be concerned about.
Are you doing this before you get pregnant? My daughter is 21 and one of these years she will have a baby. I would like to let her know what kind of screening her and her potential husband should have done before trying to have a baby.
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Thank you for this information.
Yup! We're planning to have kids in a few years. It's a genetic testing option. There is a registry of genetic counselors [indageneticcounselor.nsgc.org](https://findageneticcounselor.nsgc.org) where she can find someone. Insurance doesn't typically cover it, I think I paid $250 for the counseling session and $100 something for the test. It takes about 2 weeks for the results. Typically one partner (the woman) does it and if she is positive for anything, then her partner does it. The genetic counselor can talk about what the results mean and a few things actually show up as health concerns if you're just a carrier. I mostly learned about it from an episode of a podcast about the fertility industry (how genetic testing is not a substitute for family history). She did a [part 1](https://open.spotify.com/episode/4fax5auepCcukzPc4pXyze?si=gORQtovKQ1amHAin9daWnw), [part 2](https://open.spotify.com/episode/7DrjkgWBl23hgLhvaXiiKs?si=BqHBQU2DSxSMSm-4OuVawA) and [part 3](https://open.spotify.com/episode/1F49pDGcwhJDyhMJs0XGUp?si=-3qNY_YIT7uTmpjKNKAqaw) walking through her experience of getting genetic testing done (not specifically carrier screening but broad genetic testing). My counselor walked through my family history with me (I was asking about carrier screening and cancer screening). Discussing family history of different illnesses and miscarriage (which can indicate fetal abnormalities). Even though there's lots of cancer in my family, it's not the kind that is typically genetically, so we decided not to do a cancer panel at this time. My husband and I don't have any significant overlapping regional heritage and neither of us have significant issues in our families commonly related to genetic illnesses nor a known significant family history of miscarriages. Which is all good stuff. So I actually feel really chill waiting for my results. If I am a carrier for something, my counselor will talk through what that means bit typically it doesn't mean anything if my husband doesn't carry the same thing, only that there's a 50/50 chance my kid is also a carrier. I'm 1 week in to my 2 week wait for results after mailing in my spot in a tube. Edit: that doesn't mean I wouldn't carry a pregnancy to term that has an abnormality. I'd want to know what to look out for and what my chances of everything are. If I could know that my kid could be healthier vs not, I want to do everything I can. Informed consent saves lives.
Wow! Thank you so much for this information. It’s a wealth of knowledge. I will listen to the podcasts you linked. Wishing you happiness with your someday baby!
I know someone who adopted a down syndrome baby because they’re against abortion. They are now 79 and 80, the child is in her late 40’s. I’m not kidding, they tracked down the birth mother and asked if she would like to have her back.
That's really sad- I'm sure they are desperate to find care for their child before they die.
No, they’re not really the greatest people. They are Canadian so there’s lots of support and she will be taken care of. They were just trying to make a point
They don’t have someone in their church that would want this 40yr? I thought that’s what church people chimed about. All day everyday. God will take care of them. Well, here is the adult kid. Time for the church people to step up. Crickets.
This is one of my beefs with a lot of conservative Christians (I'm a more liberal leaning one in a conservative church, it's great fun!!). Easy to say Don't Abort, but I don't see too many stepping up to be foster parents, kudos to those few that I know that have.
At least they more or less put their money where their mouth was, until recently.
I remember that this subject came up some years ago here on Reddit, and it was downright scary to see how many commenters were bitterly raging against the idea of Icelandic women being given the *choice* to avoid giving birth to children with Down's syndrome, by yelling about eugenics (when Down's is a random chromosomal error, AFAIK, and will thus never go away) or how all people with Down's *they* know are great so it's monstrous to abort them (while they never see all of those lower functioning people with Down's who destroy families due to their extreme care demands and being small children in strong adult bodies with no impulse control or ability to understand they can't get physical when they don't get what they want).
As a person with a disability from birth... I'm ok with this. It takes so much effort and time and for what? A guaranteed crappy life? 0.00000001% chance of being somewhat normal?
I feel similarly. I have (now in remission!) disabilities/chronic illnesses, which manifested in severe chronic pain and entire years of being bedridden. If I had a child with the same illnesses, of course I’d support them and show them how to thrive! But never in a million years would I wish the pain I’ve had to endure, and the many negative effects on decades of my life and my youth, on my worst enemy. So of course I’m not going to wish it on a baby I’d love more than anyone! And of course I’m going to want to give future children the best life possible. I did genetic testing when pregnant. Baby was thankfully the “lowest risk”, but I’d have followed up with more testing and then aborted if risks had been higher.
You're a ballsy mother fucker. Glad you're here.
“ballsy move fucker” <—best compliment ever
Serious question, do you somewhat resent your parents for it?
No. They didn't know they carried the gene.
Carrier screening is still not covered by most insurance and not significantly talked about. I'm getting it done now before planning to conceive in a few years.
My mom had fetal alcohol syndrome because her mom didn't want kids so much that she tried to get drunk to abort. When she had my mom she made them give her a hysterectomy. We later found out she was lesbian but it was the 40s and her husband was abusive... to both his wives and all his kids. And then he drove drunk off a bridge. So yeah a lot of alllll the shit I have going on could have been prevented if my grandma had been allowed to just be a happy tiny lesbian.
If you make no decision, that is also a decision. Is choosing to do nothing in that situation, and allow things outside of your control to progress to their conclusion, free of bioethics considerations? I feel that this is where lot of bioethics gets fuzzy, and that aspect is often overlooked. We seem to give moral priority to inaction, but at the end of the day, when you have that choice, any decision is an active decision. Choosing inaction, and thus it's consequences, is as much of a choice as taking action. Neither is a neutral choice. With that in mind, I have a very hard time saying that there is something truly unethical going on here.
If they wanted to go for low hanging fruit they should have gone after people that will abort based on gender. This thing is basically a nothing burger. If you don't like it then don't do it. But keep out of the decisions other people make.
As the parent of a child with Down syndrome, I completely agree. Abortion is basic healthcare and healthcare is a human right. No one should decide for anyone else what to do with their own body. The only issue that I could possibly see is if there is a cultural bias against people that have Down syndrome. If that’s the case, then people should be educated on that but no one should be forced to have any baby they don’t want for whatever reason.
Even if their is a religious belief against, its still their personal business
At the end of the day, it's nobody's choice but the pregnant women's.
100% in support of Iceland in this respect.
I am going to have to take care of my disabled, mentally challenged , autistic niece in a few years. To be honest I am bitter about it. I could only anonymously say that here. My family would be aghast. I’m afraid if I said this to a counselor they would think I was a monster. I’m crying just thinking about it. She was born to two meth addicts. They were making meth in a 15ft trailer in Alaska. I don’t know that the meth had anything to do with how she was born, but it didn’t help.
You do not have to. Her guardians will need to come up with a different plan. You will be pressured to care for her, but you can, and should, say No, firmly and with compassion.
Some bioethics experts also think its a moral imperative to abort these pregnancies. Why is this article fearmongering instead of asking more countries to follow Icelands lead?
These are religious nuts masquerading as bioethics experts.
That's what even I think.
Damn, even you?
Who gets to decide how disabled a fetus needs to be before abortion is pushed as the only correct action?
I'm not seeing a problem here. Is it a touchy issue? For sure, but if the parents don't want to bring a disabled child into the world, it should be their right to choose not to. Its not easy raising a mentally disabled child, and the parents that do are amazing, but it's a life long commitment that not everyone wants to (or even has the ability to) sign up for. I'd rather have an aborted pile of cells than a mentally disabled child that isn't getting the proper care they need.
Iceland is one of the most advanced countries in the world.
Isn’t this the point of prenatal testing??
I don’t really think its a bad thing as long as they were given an informed choice and not coerced into it. Like it or not, its very hard to care for a disabled kid that has only a slim chance to be independent. Its time and money consuming, its hard on the siblings who will likely not get as much attention and expected to care for the DS individual once the parents get too old, its hard on the parents who will either have to care for them for life or send them to live under relatives or in a group home. Its hard for the DS individual themselves if/when they realize they will never get the same opportunities and privileges healthy people in their age group have. It’s not fair but thats the way it is.
I have a family member with Down syndrome as well as a very close friend whose sister has it. They are wonderful, sweet, loving people. That said, raising and caring for them was a life-changing and difficult commitment for their families. Whatever beauty it may come with, I don't think anybody should be obligated into taking it on unwillingly.
"Bioethics Experts" in this context usually means funded by religious nutbags.
Or people who don’t have to put in the effort to raise these kids but by gum they have opinions on it.
Raising kids is hard, though, while just holding an opinion is easy. I choose easy.
I tapped out on the topic in my twenties. No interest in passing along my defects to another generation.
Exactly, it's easy to tell someone what they "must" do when they're faced with a choice like this, when you're in a position where you take zero responsibility for the end result and never have to think about it again after your advice. Generally applies to elective abortion but especially in the case of diagnosed severe disabilities.
Like 99.99% of Redditors in this thread with very strong opinions but no actual experience other than “a friend’s daughter’s boyfriend knows a lady that once knew someone with a child with Down Syndrome”?
While I fully agree with this practice of screening and abortion of people with disabilities like this, the "bioethics expert" quoted in the article is a left wing professor who specializes in things like "feminist theory". I doubt she's the right wing religious American you're thinking of.
This is the one debate where I somehow wind up on the same side as unethical Chinese scientists bc the “bioethics experts” always seem like one bad day from demanding cochlear implants and overly expensive prosthetic hands be banned
Or advocacy groups for Down Syndrome who claim "erasure" and a "genocide" of "their kind". And I'm not making these up unfortunately.
It could be, but in this case it’s not. This is an absolutely great article on bioethics and presents a variety of takes on the subject. Here’s an interesting quote that makes you think on the ethics of the situation: > He stresses that people with Down syndrome overwhelmingly consider themselves to have great lives, especially as health care, early intervention and support services have improved over the past few decades.
Opinions from those with a syndrome of primarily mental deficiency, and well-known to make the person gullible and suggestible. Maybe those that respond are mentally capable of doing so and, presuming were not coached to respond that way; like autism, it's biased towards the high-functioning, and neglecting to include the vast swaths on the lower end of the spectrum that literally need to be hand-fed and have their asses wiped due to their profound inability to self-care. Objectively, terrible lives. And there's no test that is going to tell the parents if their disabled child is going to grow up to be Dan Akyroyd Tier, Temple Grandin tier, or that 30 year old "kid" that [punches holes in the walls](https://www.youtube.com/watch?v=j4PTf7LgsIE) with permanent caretaker parents driven to an early grave.
And their families, if not rich already, are taken from their own lives to take care of the child more intensively and even the other siblings have to take on responsibilities that no child should have to. The modern world is also hell TO most of us with disabilities. When the world is too much for us the rest of the world views us as a problem. If I was having kids I wouldn't subject that child to this life, let alone a life with downs syndrome.
People with Down syndrome who are sufficiently high functioning to express an opinion. Survivor bias at work.
My friend's sister is profoundly handicapped by her downs syndrome and he loves that she has irrepressible golden retreiver energy. But at the same time after his dad got sick it fell to him to keep her safe as she got too big for their mom to handle when he was a teen. He didn't get a childhood because his sibling was an all hands on deck job. Its not just about the person with downs.
If you're fortunate enough to have relatively mild symptoms, sure, prognosis is pretty good these days. Most aren't so lucky, and the ethics of taking answers to such a question from a more representative sampling of people with Down's are questionable at best. The person you quoted isn't a bioethicist and is cherrypicking.
It’s quite common here in Australia too. Yea it’s a bit of eugenics, but it hopefully means any life that becomes conscious has the best chance at a fair and long life - without prejudice, and health/cost issues.
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It's not eugenics - eugenics is coordinated, often coercive programs to create a specific population! Eugenics is bad because it's an excuse to kill people and deny people their right to reproduce (or not reproduce). This is parents deciding not to have a baby that they can't raise - just a totally normal abortion. The people who are against this are nutbags.
A few years ago my brother studied dance in Ireland (we’re American) and shared his pictures with me of a therapeutic dance group he led for kids and teens with Downs Syndrome. I mindlessly commented “oh wow I can’t remember the last time I saw so many people with Down syndrome in one place.” My brother replied, “Well yeah, people elect to terminate for Downs in the States and you couldn’t get an abortion in Ireland until recently.” I support terminating for any reason but this fact was sobering. Sadly, with abortion bans, the US is likely to see the population of kids with Down syndrome rise again, but Conservatives have slashed so many education and healthcare benefits for struggling families Idk how they’ll get by with a kid who has special needs.
There is no such thing as not acting in Bioethics. Not acting is a way of acting because human life is finite and thus not acting implies there is a consequence for doing so as time doesn't stop running until people find a optimal ethical solution. Eugenics had a ton of nutjobs in the early 20th century and it got a bad name. So no one wants to use the term anymore. But if over 90% of fetuses at high risk or proven to have significant chromosome abnormality are aborted, then yes, this is eugenics. Doesn't mean it is inherently bad.
My line of work puts me in close contact with many severely disabled school age kids. What I see is amazing dedication by these student's instructors, the effort required is in the region of 20-1 vs a neurotypical student. Most of our alternative education program kids are 1-1 or 2-1 for instruction and to be completely frank, it looks exhausting. I would not for a moment question a potential parent's decision to "try again" the alternative is dedicating oneself to lifetime care for a child, who may never become independent, and will not have anyone to care for them when their parents inevitably pass.
Its a tough topic. Click bait headline. Those children need a lot of extra care. That extra care costs a lot of money and time over a 60 year or longer lifespan. That type of care is not cheap. A very small percentage of t21 are able to live a life entirely independent of care or assistance. I get why those in that community and who work with T21 folks would be horrified and concerned by that. Those are the "some experts" that are voicing concern. Given a lot of the economics and time commitments of our more developed world today, any child for many people, is not really an option for many folks who lack support or ability to provide the things it needs and the parents need. Eugenics has a horrible backstory, but I wouldn't want my child to be born with that handicap in this world. I spent many years in my youth working with these very folks. Many develop dementia as they age (and that can be dangerous if the person is strong) yet have minds that function similar to children and IQ's in the 40 to 50 range, far below normal. I think that choice, like many should be an informed one for the parents and their medical providers alone and not up for public debate. Just like Iceland and some other countries currently have as mentioned in the article.
That’s when you give your child with down syndrome to those bioethics experts for them to raise. Problem solved. Women don’t have to explain why they want an abortion.
why? it's a personal choice between two adults and they're saving that offspring a lifetime of personal developmental disabilities, there's also no telling what other comorbidities may affect them. it's the responsible choice.
It wasn’t that long ago that half of the children born were dead before adulthood. Nature used to do a lot more weeding out of humans than what is going on in Iceland.
Good for them. It's cruel to knowingly bring a child into the world that is going to have a poor quality of life. And if the child outlives the parents, their child ends up in a group home or is a burden to their siblings who didn't ask for that life. But some people have a savior complex and want the praise and attention that comes with having a disabled child.
No one is pure enough to be the morality police.
Bioethics experts need a reality check for how brutal and unforgiving life actually is. Why would you willingly start someone off so disadvantaged?
Of course why bring someone into this world at a known disadvantage already. Seems like a no brainer.
Being able to prevent people from being born with a disease is literally ethical. The whole point of medical technology progressing is to treat and prevent diseases. I could never live with myself if I knowingly caused someone to exist with a condition that will cause a lifetime of struggle and suffering.
Well, those bioethicists can make their own decisions if they ever decide to be parents.
nah fuck this “pro life” shit
"elect to have pre-natal testing " read the article. choice is choice. freedom = choice. Xchoice=Xfreedom.
It is a disability, and, if the parents and that fetus can be spared all the stress and heartache before the fetus is even conscious, then I support them.
Concerned about what, exactly. If we, as a species, can know in advance when something is not going right with a birth, and can try again... where exactly is the problem. Those women have the right to a healthy baby. More power to them.
This is how it should be free will of the parents! I think it’s brilliant!!!
Should orthodox Jewish couples stop testing themselves for Tay-Sachs and embrace the miracle of dying at the average age of 3?
Why, because it’s more “ethical” to bring a child into the world that you know for certain will lead a life beset by chronic medical challenges and diminished of opportunity and acceptance than it is to save both yourself and the child the trouble of having to live through that? Some fucking “ethics” there. I have autism. High-enough functioning and am good enough at masking that you probably wouldn’t ever know unless I told you, but it fucking sucks. I’m 26 and still living at home because every traditional office job I’ve had has ended badly, either being laid off or fired largely for reasons outside my control but that were exacerbated by my impairments. I really, really struggle to make new friends. I struggle with self-worth so badly that I’ve never seriously pursued finding a relationship despite desperately wanting a partner, because I’m convinced I have nothing to offer besides hyperfixations. Hell, even Forrest fucking Gump found love and had a kid. And I got *lucky*. According to my parents there was an extremely high chance I’d have been born with Down Syndrome, but the cosmic dice rolled my way in that sense. I would *never* want to put a child through something like that if it was in my power to avoid it.
Bioethics sounds like those pro-birth people. It's shit enough for them to have to abort now they want to guilt them and others?
If people are honest this is a debate for which there's no "correct" answer. It mixes cultural norms, the definition of, "quality of life," and perhaps most contentiously the possibilities enabled by legalized abortion. "Bioethics experts are concerned," but TBH they're bystanders in this experiment in civilization. I can't help but wonder how this situation might be viewed by decedents 100 years in the future. Will Trisomy 21 still exist (I think so)? Or might there be genetic manipulation possible after conception, during pregnancy? And if that manipulation comes with a risk of death, where's the line between intervention and nature?
What’s so hard about being pro choice? Eugenics isn’t even that bad in some circumstances
would the bioethics like to raise them instead?
Almost 10 years ago now I lived in Iceland with my then Icelandic boyfriend and he made a joke about this and why you never see people with Down syndrome in Iceland.
Some bioethics experts can fuck off an' all.
The same should happen with Huntington’s disease. It’s a terrible disease that could be eliminated with genetic testing and IVF.
Iceland isn't even a huge outlier; in Europe as a whole, including some very Catholic countries, the rate was 92%. https://pubmed.ncbi.nlm.nih.gov/10521836/
Isn’t that the point of screening? I’m in NZ and it’s one of the things they check for in the 12 week scan. It’s so you can make informed decisions.
Fuck some bioethics experts.
OP not getting the reaction they expected.
It's reddit I don't give a shit And i support this anyway
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>specify that autism can also be prevented. They don't even know for sure what causes autism, pretty hard to prevent something without knowing how it happens.
Autism isn’t a single ailment. The causes of these complex deficits are not known. There are similarities between some individuals, but there is not an emerging pattern. No two cases are alike. ✌️❤️🌵
As long as it's available to ALL potential parents, and not just the ones that can afford the screenings.
What a lot of people don't seem to remember is that Iceland has about the same population as Tacoma, WA. This limits the services and care that people can get without moving to Europe mainland.
Those "experts" should try to raise their own kid with such a diagnose. I bet most of them are unmarried and childless. I wouldn't be able to and hat off to everyone with strength to do so
Why in the fuck would anyone want downs in the world?
I support this.. before I finished nursing I worked as a cna in a mental facility. I would never be able to raise a child with autism. That is my personal choice. I would even bring the child into this world at all..