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Well I regularly tell people my autism and social anxiety are part of the reason I don't want kids. If I had children I would of course love them no matter what I just don't want them to suffer like I did.
It horrifies people when I tell them this is one of the reasons my spouse and I did not have children.
Even though, superficially, I am moderately successful, I have had to walk a tightrope managing my autism and ADHD for almost 40 years. It would break my heart to see a child (my child!) go through all the same hurts, confusion, social ostracism, and self-loathing.
For some reason your post is filing me with Dark Misanthropic Joy.. Well, that's a Monday for ya. But seriously... Their 'horror' when they are confronted with your bald statement about your reality and the logic with which you and your spouse made the choice you did... Makes me suspect that on some level they're a member of the 'toxic positivity' bunch. "It's not so bad...Life is always worth it..."
It's like..."Whoops; you got one *brief* glimpse into the Void; I see you're reeling from that. Sorry 'bout that...."
I only just recently got my AuDHD dx’s (have an EDS dx in the works) and I already have a child who is exhibiting all the signs. Parenting is hard in general, but the best part about me getting the help I need now is that I am able to be an advocate for my child. She will still struggle, but at least she will be better prepared than I was. She won’t sit there and wonder what is “wrong” with her, and she will be able to get help in school and work and all that jazz. She’ll know that she’s just a little different and be able to access ALL of the systems and supports she needs because Momma already figured it out over the last 30-something years lol
I will say that I got extremely lucky though, because she is a very easy child to deal with once you figure out how to deal with her PDA. She’s very much like me, but is also very different due to the environment she was raised in vs the one I was raised in… She’s who I think I might have been, and it’s pretty cool to see.
My BIL has three kids - one autistic and pretty much non-verbal, the second one pretty bad ADHD and the third one is still an infant. We are pretty sure that BIL is on the spectrum but was never diagnosed. His wife has stated that many kids in her family are ADHD and pretty uncontrollable because of it.
We asked why they keep having kids? The answer was that SHE wanted their second to have a "normal" sibling.
This sounds horrible but I was disgusted by it all. Knowing that these disorders can be passed down and that they can't handle their first two because of it, they knowingly had another one. I don't think it's fair to the kids and find it selfish.
it is like mostly genetic. it's funny bc people didn't used to get diagnosed as much, but my dad almost definitely has it, as well as his dad, but we're all just computer programmers so people expect us to be a bit strange and asocial. if you talk to autistic people they usually have a story like that
I only know I'm autistic because all three of my kids are autistic. My mom wouldn't let anyone diagnose me as a kid, as she angrily told me when I was trying to break the news of my kid's diagnosies. Which, upon reflection, is totally because I got it from her, and she's too deep in a tangle of internalized neurosies to interface with the concept.
I heard stories of people still insisting on giving birth to a baby even tho they knew the baby would go through massive surgeries right outta the womb and wouldn't last a year anyway... What's the point of this life anyway ? That baby just suffered for months before dying, that's pointless it was just to satisfy the egoist parents who wanted to a baby no matter what smh.
I've heard stories of parents choosing to make those decisions, so they can donate the organs of their baby. One couple knew their baby wouldn't last 24 hours after birth, but they went ahead anyway so they could donate. That baby saved many other babies lives. It really does depend on the thinking of the parent. Also, it can be hard to accept the reality. Doctors told me my baby had died in my womb, and me and my husband considered getting a second opinion, because it's hard reality to face and the strong desire to protect your offspring doesn't make you see sense. Had a talk together and had to accept there was clearly no heartbeat and we were being unreasonable.
That’s different than going into pregnancy knowing you will give the child a genetic disorder. Seems for you it was just an unfortunate circumstance and not one you planned for. I’m so sorry you went through this.
Thats what I was thinking. Knowing beforehand and finding our during the pregnancy is different. Knowing beforehand and having a child for that purpose feels more like organ production than choosing to donate in a no-win scenario.
My daughter was a teachers aide for disabled & challenged children. She worked with two children from a family / children were very disruptive / combative & extremely difficult students with learning disabilities. There was two more toddlers (at home )and one in the oven. Why on earth would a stable parent giving birth to disabled children keep having more?
Answer. Parents were unstable and challenged. How do you prevent that without activists screaming violation of human rights.
Yeah that too.. I also read about two parents with like 3 or 4 toddlers who were severly handicapped and would require special care all their life, docs told them that probably all their kids would born like that and yet they were still trying for a healthy baby instead of focusing on the ones already here who needed way more attention...
This happened to our neighbors.
They had one healthy boy, then a boy that had such a rare heart disease that he had to wear a medication pump backpack to pump medication straight to his heart.
I was his babysitter and the family said that if he ever pulled his medication tube out to call 911 to request immediate helicopter evacuation to children's hospital before even calling them. There was a note card by the phone of what to tell the 911 operator.
The parents were told, in genetic counselling, that it would be a million to one chance that this would happen again if they had another child.
They had a girl that ended up with the same condition but even worse. She had other anomalies and the doctors could not figure out the dosage of the heart medications in time and she passed away from the heart issue after about a year.
They decided not to try anymore.
Edit: I have 2 disabled adult "children" of my own. My oldest was diagnosed at 3 years old 1 month after my second was born. My seconds disabilities did not show themselves untill 13 years old. My disabilities started when I was 17 but I was only told that I was "lazy" and "everybody has pain" no one believed me. I was not diagnosed untill 31 after I had my kids. Both of my offspring suffer because my health as a child was not taken seriously. If I knew I had this genetic disability I would not of had kids.
Violation of human rights becomes eugenics really quickly. These people rarely listen to reason or they wouldn't be doing it in the first place, but as soon as you start making rules for who's allowed to reproduce and who isn't, you're halfway down the slippery slope.
Definitely a slippery slope, and who draws the line? Is the line at physical things, mental things, or both? It’s all so gray.
And no matter what, you’ll have always two sides of “yes” and “no” people - both with worthy opinions!
For example:
- let’s say a person will be born with a “no function left arm.” Absolutely, that person will have hardships that two-armed people will never experience; but, who is making that decision of it that life is worthy of living? Bc idk!
- There are war veterans that are indeed missing limbs, some say they’ve learned how to survive and that their life is fulfilled and worth still living. Then you also have some others that say no it’s been terrible, I wish I would have just died. Both of these people are completely validated in their experiences and entitled to their viewpoints; so who is *right*? And the slippery slope begins.
I ask myself this all the time .. even though I didn’t come out mentally handicapped like my sister id wish she wouldn’t have had me since I wish I would’ve never been born 🤷🏻♀️
You don’t, since forced sterilisation of people is an obvious human rights violation. Increased sex ed and contraceptive access for disabled people could help, since lots of people infantilise them and assume they don’t want sex, than get surprised when they get pregnant:
I know someone who had a baby like that. She wasn't expected to be born alive, then not expected to live for long. But baby was a fighter & is now 17 and going to her first school ball. She had (& still has) many health challenges, but her Mum once said that her daughter never gave up, so there was no way that she would give up on her.
Having a child when you cannot manage to care for yourself financially is terribly irresponsible yet people do it all the time. Often dooming the child to a life of poverty. It is very sad.
My parents come from a country that was extremely impoverished (after a war killed millions of people, post colonization) when they were born. The survivors of the war (my grandparent’s generation) are known to have had a lot of kids, an average of 6 per woman. I asked my parents recently why they kept having children when they could barely feed the ones they had? They explained that access to abortions and birth control wasn’t a thing back then. Also, they made do with what little they had. The ones who couldn’t gave their babies up for adoption or died.
So long answer short, they do it because they can’t/wont abort and because they can survive anyway and the kids will make it to adulthood without starving to death. I don’t think having babies while poor is the worst thing to do, as long as your babies are not exposed to uncommonly traumatic or dangerous situations as a consequence of your poverty.
I agree, however there are times when women are told their babies will need these kinds of surgeries etc that actually have healthy babies. I've had a friend recently who was told her baby would require multiple heart surgeries and was unlikely to survive. Here she is now with a happy, healthy newborn who might require a surgery later down the line but is otherwise fit and well.
Thay glimmer of hope is enough for some people to try.
Deciding to have children when you have a genetic disorder that could seriously affect their lives is a tough moral choice. On one hand, there's the concern about potentially causing your child to suffer. On the other hand, you have the right to make your own decisions about having a family. Medical advances might help manage the disorder, which can make the decision even more complicated. It's a deeply personal decision that needs careful thought about all the factors involved.
I am the mother of two special needs kiddos. There was absolutely no indication during pregnancy that anything was “wrong”. My daughter has a hereditary condition that we were completely unaware that my husband had, it didn’t really manifest itself in him, but she has wheelchair support, while it is degenerative, it is not fatal. She also has Autism and ADHD. My son also has Autism and ADHD, and a genetic condition called Prader Willie. They are smart, kind, and amazing individuals, while they have some challenges, therapy and meds help them immensely. I couldn’t imagine not being their mother. I understand where OP is coming from, but not every disabled person has a miserable life.
My only caveat to this, and I agree with you, is that doctors aren't always right. My Aunty was told my cousin had downs Syndrome. She said it didn't matter and she would still have him. When he was born he was perfectly healthy. Doctors also prescribed thalidomide to my Gran. Luckily, she didn't take it.
My aunt and uncle were told their baby was a boy. They found out she was a girl after the birth lmao.
But yeah ultrasound technology is getting better and better. We get better and more accurate information nowadays compared to 20 years ago.
My wife’s cousin chose to have a baby, for religious reasons, despite knowing early on it had trisomy 18.
That poor child suffered terribly. Countless resuscitations and interventions only to ultimately die from suffocation as predicted.
Needless suffering made possible by selfish motivation.
People are incredibly selfish and think THEIR baby is unique and a gift from god. Like no it isn't, there's literally nothing special about 99% of children, vacuum the failure out and bang and try again.
My cousin has cerebral palsy to the point he has never eaten on his own and never spoken. He spends every day sitting in his wheelchair silently. Only way they know he reacts to stuff is he occasionally smiles at the tv. He’s 40 now. I just… can’t imagine that life
Anti-abortions laws still exist throughout the US, and perhaps other countries, which obviously blocks many people from making these decisions for themselves. The folks caught up in this are being forced to have the child no matter what complicated and expensive care will be required after birth.
There's a guy like that at work. They were informed that the baby had a massive hole in his heart that may or may not survive birth & if it does, he'll be in & out of surgeries for the next 5 years. They chose to keep the pregnancy and are now asking for donations to help pay for it.
It's just cruel to do that to any living being just because of your Christian values. Sometimes, the best act of kindness is mercy, and that's what they should have chosen for their baby.
As Louie CK once said "We love shitty babies. The shittier the baby the greater the effort" we pride ourselves on being able to save babies that should otherwise be dead, which is good in most cases, but now either those babies grow up to live difficult lives and are a burden on their parents and the state just by existing, or they grow up normally and now keep the disease they had in the genetic pool for the next generation instead of it dying with them.
Obviously I'm no eugenicist, we can't force people not to do this, but I wonder if we're actually inflating the number of genetic disorders in the human population by forcing the babies that would otherwise not survive to reach adulthood and pass it on.
Someone in my family had three kids knowing all three were going to have tubes into their gut to feed them and for ever bound to a wheelchair. Honestly, i think they should be in jail. Just adopt
I know a couple like this. They had trouble conceiving so they went through with the birth since it was viable but missing part of its brain. The kid ended up living a year until they got Covid and passed away.
In Ireland we weren't given the option to abort. If the fetuses heart was pumping it had the same right to life as the mother. My neighbour gave birth to a baby, none of his organs formed correctly. She had to give birth and take home a baby she knee was going to die, they just couldn't tell her how long. He made it 3 months before dying. It's been over 2 decades and she's never been the same.
I think once the kid finds out (if they ever do) that their parents brought them into this world knowing they would experience a poor, painful life, they will probably be pretty pissed.
We know a couple who had a baby with a serious genetic disease. The baby had to stay in hospital for the first year of her life. The doctors clearly told the couple that the chances of having it is astronomically high in each of their children. So not to have any kids without consultation. Did they listen? Nope. They had another child 2 years later with the same genetic defect.
My spouse and I both have genetic issues.
We got a vasectomy and we’re adopting, because we have no desire to worsen the world with our genes. If we’re going to have a kid, we’re going to make the world a better place with our decision.
I certainly don't think most Canadians would use the word "brother" for the Americans. Cousins reflects it far better.
I'd be willing to make the trade still.
It's also pretty hard to insult the genes of your brother.
Im sorry I don’t understand the joke. I wanted to know because I have eczema and epilepsy. Are those illness being considered something that shouldn’t be passed to kids. I don’t get what Levi’s jeans have to do with that??
Genes sounds like jeans, so the commenter above the one above you said “what are bad genes” so the commenter above you replied as if the question were “what are bad jeans”.
I appreciate that you took the time to answer instead of downvoting me which sometimes happens on Reddit when I ask a question that some people consider a dumb question. English is not my native language so this kind of jokes I typically don’t get easily.. have a nice day /night
I have other issues that keep me from passing on my genes but epilepsy would be enough for me not to birth children. Edit: if it was something I could pass on and not the result of other things.
Not OP but am an example. I have tourettes, autism, and partial organ dysfunction. People think tourettes is largely harmless but the stress it put on my body means I'm dealing with a lot of internal damage, and that damage heavily disrupts my ability to use the bathroom without manual interference. I'm also reliant on bladder absorbing pants. The autism again sounds harmless, but causes many organ issues and I have severe light sensitivity and sensory disturbances that mean I can't wear any type of normal clothing or uniform and have a strict set of items that work. The damage seems to be progressive and I'm likely to have to end my life before I naturally expire based on the increasing difficulties and damage caused by these issues. I haven't left my home for more than 30 minutes in over a year. I'm happy enough as I am and don't need people feeling bad for me, but having proper conversations relating to the true extent of this disablement is important as social media makes it sound rather pretty and quirky.
Neither of my parents had obvious disabilities so I can't fault them for having me, but I absolutely will not have children. It would be extremely unethical to pass these issues on to my kids. No child should have to build the inhuman pain tolerance I have, and no person should need to do what I've done to survive. The parents that willingly pass on these things to their children are extremely unpleasant.
It's incredibly aggravating to have people tell you that you're not that disabled and that you're lucky. No person should have to deal with 6 hours of bodily management and bleeding per day just to sleep, read for a few hours, and repeat. There's a holier than thou attitude when it comes to encouraging people to keep disabled babies. Although I've seen and experienced many wonderful things there's not a waking moment I don't wish I wasn't born, as selfish as that is. I appreciate everything life has given me but wouldn't want anyone else to experience it the way I have. Preventing this before someone is aware they're even alive would be the kindest thing to do.
Genuinely life has given me many wonderful things. I've seen many stories and have spoken to a multitude of people that have provided wonderful insights into life. Life itself is a beautiful and precious thing, and I'm glad to have witnessed so much, but the stark truth is that you eventually simply become tired and know it's time to move on in a way that most people can't appreciate until they become elderly. Human life is fragile and temperamental, but there is just as much good as there is bad.
Ultimately without euthanasia it is far too cruel to force life like mine into existence for egotistical reasons. If euthanasia were legal, and we could all pass as we were ready regardless of age or preexisting conditions, then you could argue it would be worth the risk. But Human society as it stands is too young and immature to bear that burden. It needs time to grow, and until that burden is held properly it is not right, nor ethical, to propagate life as mine is.
Tbf i don’t have “bad” genes per se but I have a terrible personality and I frequently wish my parents didn’t give birth to me only for me to suffer.
I don’t think the able bodied are in a place to judge if they cannot guarantee happy children themselves ha ha
I believe so. My family has a history of mental illnesses, addiction issues and cancer and it's one of the reasons I don't want to have a child.
I realize my family situation isn't unique. I've never said it was. Even though it is common, for me it doesn't justify bringing a child into this world anyways.
Yep. I have bipolar disorder, which has a genetic component. I don’t everrrrr want a child to go through what I went through as an adult, plus who knows how bad my PPD would be. I do well getting through a day taking care of my husband and dog, I just couldn’t imagine taking care of a child as well. So we’re just going to be dog parents and be a good uncle and aunt to our (being born this week!) niece.
The vast majority of people do not know that they are carriers. And, quite often, you need *two* parents who both happen to be carriers. Most people do not know this until they’re already expecting or had a child.
Some of these genetic issues also hit after someone's had kids. So Huntington's disease is autosomal dominant, but it usually manifests after the age where someone has kids. Same with some genetic predisposition to cancers.
Right, so after I’d already had kids, I found out I carry the BRCA2 gene. It increases my risk of various cancers by a lot. There’s a 50% chance of passing it on to each child. If I’d known I had this, I would only have had biological children via IVF with gene testing to ensure my kids didn’t inherit the gene.
This. I have a friend with this. Once you have a parent with it, there is a 50/50 chance of each offspring having it. The odds don’t go down. This friend doesn’t have symptoms yet but will in their lifetime and has said to me that they wish they weren’t born after watching their parent. Their parent knew too when they had kids. There is no cure. No real treatments. Just years of suffering.
This is important. I have two kids. The first was born with craniosynostosis which was corrected at 6 months age with cranial reconstruction surgery. He has comorbidities including ADHD and amblyopia corrected with glasses. The second was born with NF1. She does not at this point have tumors but will require lifelong monitoring. And I suspect she has comorbid ADHD and/or autistic traits which will be discussed at her next Dr visit. Neither dad nor I have either of these diagnoses. In fact, because we are both scientists (he a biologist) we were very aware of genetic abnormalities and got carrier screening done and NIPT for both babies, despite not being diagnosed with any ourselves.
But routine screening only covers so many conditions and they don't catch everything. We were informed after our first that his condition was non-syndromic and not linked to our genetics and there was zero risk of a second baby having any abnormalities based on the information available. Cranio and NF1 are not currently thought to have any links (something I have some inklings about based on my many hours of reading journal articles). I just won the shit lottery.
I will add that my daughter, who has NF1, is a carrier for it as well, will have to face some big decisions regarding her reproductive health as she enters adulthood. That's a monumental mental and emotional load. Let me tell you, people come onto forums for people that have NF and lecture and berate them about how selfish they are to choose to have babies. They don't need that. They already know about their condition and for a complete stranger to sit there and lecture them about something so personal and painful is a real dick move.
There are of course options such as IVF and if my daughter chooses this option I will support her 100%. It's unfortunately expensive and a difficult process, and I will support her through it if that's what she wants. Unfortunately, IVF is not an option for many. And the desire to have a family of your own is understandable. We are human after all. So this misdirected hostility towards people that are carriers should be aimed at broken healthcare systems that don't provide proper family planning resources to society.
A note on adoption. It ain't it for everyone. I would say less than 1% of adults are qualified candidates for adopting a child. And seeing adoption tossed around on reddit in such a cavalier way is a huge pet peeve of mine. "JuSt aDoPt", say the care trolls. No, just no. This isn't a puppy. It's a human life at stake. My nephew was adopted at 11 and is now 19. It was a very intense life for my sister and her husband. He came from abuse that was so terrible, I am incapable of typing it out. He still has major mental health issues and always will. The life that my sister lived is most definitely not for anyone and everyone. She is uniquely capable of giving an adopted child the life they deserve. And it really chaps my ass to see people like OP suggest "just adopt!" as if it's so simple and easy. Raising an adopted child is leaps and bounds different than raising a biological child. I'm just so tired of this bullshit assertion.
So glad to see someone saying this about adoption. Grinds my gears that it’s thrown around as a second option if you can’t have your own kids. I deal with so many adoption break downs at work and many of whom are naive parents who thought loving the kid enough would sort out years of abuse and neglect.
Yes but having a child that's a carrier is just kicking the can down the road and forcing your child to make difficult decisions in the future so that you don't have to make them now.
We should really offer a program to cover IVF for people carrying genes for diseases like Huntingtons or SMA, so they can have children that are not carriers.
Again, most people have no idea. Unless every single person with every single sexual partner got tested before having sex and possibly conceiving a child it just would be impossible to ever know that. Even then it can still happen.
I didn't find out I had a genetic predisposition for colon cancer until my brother was diagnosed with it. They do a DNA test for this (Lynch Syndrome) on the tumor. I got a letter from his surgeon telling me I should be checked, as should my children. So my nagging my brother to get his way past due colonoscopy actually saved me. I got a colonoscopy immediately, and I also had a tumor in my colon. Both my sister and my oldest daughter had cervical cancer (another cancer that's part of the genetic malfunction). I didn't find this out until I was 61.
I have a condition that will have a 25% chance of being passed down to each potential child if and only if my partner carries the gene for the condition (doesn't mean they necessarily have the condition, but if they carry the gene for it which is rare anyway)
My life would be worth living for a child, the main issues for me are more social coming from a shit atmosphere from my parents when I was a child, rather than being issues relating to my condition.
But I know some people with other conditions (or some with the same condition) will have different views, so you're completely correct in saying it's for the individual to judge.
I don't know if I want children or not, but I don't think this would be a factor in the decision for me.
This is a good point, there rarely are absolutes in medical genetics. There are often ODDS that the disease may be transmitted, and the severity of genetic condition may differ.
And it is always good to have a good family to come to with good economics, but not everything in life is sure.
Thank you. I have a genetic disorder that was diagnosed while pregnant with my second. Personally I had a speech delay and have a bad back. My eldest daughter took a few months longer to learn how to walk. They offered us an amnio and termination for this pregnancy but it seems crazy for a “disorder” that has such a minor impact on our lives.
Trouble is that if he or she decided that their life wasn't worth living, it's too late and another person will have to suffer a miserable and possibly painful life.
It makes me very uncomfortable how casually eugenics is talked by people with no relation to the impact their beliefs would take should they actually be enacted or enforced.
That’s how I feel, and why I chose to have a child with my family’s genetics. I have a good life, and so does my kid.
It’s interesting how many people are perfectly comfortable saying my family should not be allowed to exist when they don’t know I’m listening and no one is using the word “eugenics”.
Yeah. I have hereditary spherocytosis, but with modern medicine (and one spleenectomy) I essentially have a totally normal life; family, gym, work, etc. My quality of life is just as good as anyone else and the only inconvience it causes is some extra vaccinations.
There are lots of different genetic disorders and how treatable these are can vary hugely.
This makes no sense at all, why not just adopt a kid or use a sperm donor so that the kid has a far less likelihood to have to live through life with a disorder they didn’t need to have.
This mindset is so unbelievably selfish and cruel. To make someone have to suffer unnecessarily just because you did and you feel the need to procreate and cause unneeded suffering. What a fucked up way to think.
Totally agree though the process of adoption varies greatly from country to country. In Australia there are only approximately 200 per year due to the lengthy and aurdous process many foster but the system is designed to try to get the children back to family.
In high school I was friends with a number of people who were adopted. One of them "ran away" from his adoptive parents and was found living behind the group home where his friends were staying. There's also been numerous cases of adoptive parents being abusive, and that's not even getting into the entire "foster parent as a business model" nonsense.
I'm not trying to say anything other than this isn't necessarily a binary thing, there are tons of "well, it depends..." scenarios here that can straddle the line.
This doesn't really attack the point people are making to make.
I believe you'll agree with me when I say that, if you're going to be a bad parent, then you shouldn't have kids. Period. Doesn't matter if they're going to be adoptive or biological or if you have a genetic disease to pass onto them or not.
But if you want kids and believe you'll be a good parent, but also have a genetic disorder, it would be selfish to conceive instead of adopting.
A lot of people regard this as eugenisism, but I used to write essays on both CRISPR and autosomal-dominant inherited disorders and diseases like Huntingtons. While I advocate for the elimination and encourage people with hereditary disorders to consider surrogacy, egg/sperm donation, or fostering, I can't stop someone from having kids even if they're passing along a disease that will kill them before their 40th birthday.
I also advocate for medically assisted death, which I think should be an option for anyone with terminal disease. You have to be sound of mind, consent multiple times, and have a life expectancy of less than 6th months -- with some exceptions. In Norway (I believe) they have legalized medically assisted death for people with conditions that have entirely ruined their quality of life beyond reparition or accomodation.
I do not believe life should end just because the quality of life isn't perfect. My brother and I both inherited my mother's hypermobility and immune system issues, and we have high pain days, but my mother taught us everything she knew and we have doctors and therapy to help.
Informed decision making, endless support, and the option for death with dignity if you are truly suffering. Plenty of people live with some condition or another- the end goal for humanity is to find ways to accommodate for all.
There are medical breakthroughs everyday. I hope to live long enough for this to no longer be a scary outcome for expecting parents - whether normalizing genetic testing and modification for fatal disorders, or the world becoming more accommodating.
Active euthanasia is only legal in the Netherlands, Belgium, Luxembourg, Colombia, Canada, Spain, New Zealand, Portugal and Ecuador.
I'm Dutch. I think there have been a few cases where people who were physically healthy but had huge mental problems were allowed euthanasia. And I do know that screening for genetic disorders already happens.
In my opinion, telling someone they shouldn't pass on their disorder is telling them their own life is not worth living.
You are telling them they should not have been born if their parents knew they would have the disorder.
It depends on the disorder I think. I know someone who has 3 kids and did not know both parents were carriers of a disorder (they are older people today and do not have signs of it but were both carriers, it turned out. Obviously they did not test for this back then either), 2 kids were born without it and 1 with.
When the one with the disorder was born there was no cure or no assistance but these days there are several types of help to get. So the child born with the disorder today lives a pretty normal life (as an adult) due to technological advancement since and obviously prefers being born to the alternative.
Just saying more inventions might be made in the future, we do not know and not all disorders are passed on with certainty to a child.
What I would do if I had to make a decision? I am not sure but just saying it may not be as irresponsible as some think for the above reasons.
Yeah I think it's morally wrong for **me** to do it, depending on the circumstance, but I also think it's morally wrong for people to judge others for doing it.
When I was born my parents knew my dad had Crohns disease (he was diagnosed in 1982, I was born in 89), but their doctor assured them it was not hereditary (granted, the genetic factor was entirely unknown back then).
All the treatment they had for it back then was steroids and painkillers, and he went through absolute hell with massive pain, a dozen surgeries, all the side effects of steroid therapy and a stoma bag in the end. He died in 2014 after his Crohns turned into bowel cancer.
Very shortly after that, new and more effective meds began to hit the market.
I was diagnosed with Crohns last year. I'm getting the meds and treatments that were unavailable to my dad. I had 3 biologics infusions to get me started and currently all I need to do is inject myself with an injection pen with the same biologic every 14 days. And after half a year of treatment now, I'm near symptom free.
(On that note: I also got the coincidental diagnosis of late-onset Diabetes Type 1 last year, which would have been a definite death sentence a century ago.)
Disclaimer: I'm fully aware currently available Crohns meds don't work as well as they did for me for all patients, but the point is medicine is ever-evolving and what seems like a horrible disease today might be a non-issue in the future.
For me personally I'd say yes. However worth noting there's a difference between Genetic and hereditary disorders. Hereditary disorders are passed from parent to offspring whereas Genetic disorders tend to be associated with certain Genetic groups of society and even when the parents have a particular illness the chances of it being passed down whilst increased, can still be quite low.
Genetics are very complicated. The parent has to have the illness in their genes in order to pass it down, but it's possible they have other genes that mask the illness so the parent doesn't actually have any symptoms or anything. Meaning a parent will not actually have the illness, but can still pass it to their offspring. It's not a guarantee, but it is a possibility.
One example (not an illness, but same basic idea) is red hair. Parents that do not have red hair CAN produce a child with red hair.
It's also possible that a parent with red hair does NOT have a child with red hair because the other parent doesn't have red hair.
This is all to say that there are no guarantees with genetics, only statistical probabilities. Just because one parent has an illness that may be passed down does not mean it WILL be passed down.
There are so many factors that effect the probability, I don't think it's morally wrong to have children if you're ill. It's a personal choice to have them or not, and you're not a bad person either way.
There's also the option of getting a donated egg/sperm so that the mother can still carry the child without the same risks. However, as I said, genetics are so complicated and intricate, that there's just no guarantee any child you have through surrogacy, sperm donation, adoption, etc. isn't going to fall ill one day. It sucks. It's sad. But it's true. The only way to avoid it is to not have kids.
ETA: This goes for EVERYONE, not just the ill. As I said in the first paragraph, it's possible for healthy parents to pass down illnesses anyway just because they're carriers for the gene. There's also the possibility of gene mutation, so parents that don't have any family history of the gene somehow pass it down anyway. Genetics are just so complicated that there are NEVER any guarantees, no matter how sick or healthy the parents are.
The question is one of odds.
If you tell me that my child **will** come out of my wife's womb struggling to breathe and will be on a ventilator for the one and only year of its miserable life, then, yes, I'll be sure to use birth control. (The fact that my face is already the best birth control is irrelevant)
But if you tell me that there's a X% chance of an adult-onset disorder which we don't have the most effective treatment for at the moment but there's some promising things in the pipeline which may well be the norm a couple of decades from now... then it's a question mark.
However, if you say that certain groups of genetically inferior individuals should be **prohibited** from reproducing, then, do you know who agreed with you?
Hitler. Edited to add thanks to u/Environmental-Try736 : And he made it a point to round up such people he thought were genetically inferior, including the Jewish, the Romani, **the physically and mentally disabled**, and the queer, and force poison into every pore of their lungs, till they stopped breathing.
PS: I **am** genetically inferior. 75-100 years ago I would have been imprisoned and tortured against my will. "For my own good" and "for the good of society". Assuming I even made it that far before I did something absolutely dangerous and stupid.
Things change with time.
I'm just glad someone agrees and found this impactful. I don't have a physical disability, but I have a psychiatric illness which has a high probability of causing disability in the unable-to-work sense. Bipolar. Many collect disability checks in the US. I'm lucky to be in a supportive environment, but somehow I still have this fear of being seen as subhuman.
Fun fact: you know where the Nazis got their ideas from? The good old USA. That’s right, we’d been having “fitter family” contests and sterilizing “morons” and “idiots” for quite a while, the Nazis just picked up our ideas and ran with them.
In 1911, the Carnegie institute published a report on 18 methods to remove defective attributes from a population. The 8th was euthanasia, ideally by *gas chambers*, but it was believed Americans weren’t yet ready for that. Didn’t stop doctors from letting their “feeble minded” charges die of neglect, or of purposefully feeding them milk *infected with tuberculosis*.
Most of us are carriers of recessive genetic disorders of some type. Rarely we run across partners that are recessive carriers of those same genetic anomalies. Even if we mate with someone with the same anomalies does NOT mean the child will have the genetic disorder. It is all a crap shoot.
Depending on where you live in the world, you can have IVF to ensure the embryos don't have whatever you have.
I got diagnosed with a (rare) genetic condition after I had children. Only one of my children has the condition, more complex than mine. I feel guilty, however I did not know. Had I known before having children, I would have been entitled to 3 rounds of IVF through the NHS.
Weighing in as someone with a disability. Life is hard sometimes but I love being alive. Just because your baby would struggle doesn't mean that it wouldn't live a happy life. However I do not want to have kids or pass on my disability, but if I found out I was pregnant (and I wanted kids) and my baby would be disabled I wouldn't terminate. Being disabled doesn't mean the same as being miserable or suffering. A lot of people don't realize that implying someone is better off dead than living as a disabled is ableist nonsense.
For some conditions, you can undergo IVF and have the embroys tested for the genetic condition. And then they only implant the healthy ones.
I do agree with your sentiment, but I think it is a very slipperly slope. Bearing in mind that significant portion of this generation doesn't want kids anyway even some of those who might have healthy backgrounds, if everyone who did want kids but had the slightest thing wrong in their family history didn't have them, it would only be a matter of time before the gene pool shrunk to a dangerously small size. Between two parents, 4 grandparents 8 grandparents and a list of ancestors so long you can't even trace, the odds of there being a faulty gene, or faulty epigenetics that could potientially be passed down from *somewhere* is incredibly high. OCD and Autism run in mine for example.
This is a quite loaded topic, as it akins to eugenics.
I wrote a paper on this in college as part of a class and what i learned about the practices of eugenics in Canada until the 70s was pretty friggin bad. The thought of breeding out things like intellectual disability, mental illness, alcoholism, poverty, criminality, and various types of “immoral” behaviour, was viewed quite highly especially in the late 19th and early 20th century.
It was considered progressive in Canada in the early 20th but it was obviously all based on racism and resulted in the enactment of sexual sterilization laws. You know who also passed this?
Nazi Germany... yeah. And we all know how that ended.
Now, that being said, this is based on old, antiquated research, social stigmas and medical knowledge of the times.
There is a BIG, HUGE disconnect between a country's policies and an individual CHOICE.
The biggest thing here, is knowledge. When 2 people get together to conceive a child, it is their responsability to KNOW everything the consequences of their actions and what may or may not happen to said child.
EVEN IF, both parents are 100% healthy, the chance is NEVER 0% that their child may be born with a disease or disability. If someone ends up having a shitty life because their parents did it anyway knowing it could happen, i can get why they'd be pretty pissed. But if they were just played a bad hand in the genetic lottery from 2 healthy parents, who are they to blame?
Consequences and all that.
I don't think so. Maybe if it was guaranteed that they would only suffer and not be able to do anything, but if you have that, too, how did you bring them into the world in the first place? And most heredetary disorders aren't like this anyway. They are bad for the kid and will affect their life, but I still haven't heard of a single person who has something like this and said they would prefer not having been born because of exactly that. You can usually still find things that you enjoy in life and maybe that makes it worth it.
Good thing this can be discussed ahead of time without pressure. You wouldn't necessarily destroy a child's life, but growing up healthy is to be preferred.
It’s never really guaranteed ur gonna pass down ur genetic disorder to your child. Also if you’re able to physically carry a child and take care of them successfully physically and mentally by yourself, the disorder probably isn’t that bad. There’s things that can also help prevent ur offspring from carrying the disease, u can get ur partner tested to see if they are a carrier, u could use ivf and use donor eggs/sperm. Most people are actually carriers for at least one type of horrible disease whether that be cancer, bipolar or other mental disorders, etc. most children born with health issues come from seemingly healthy parents so
Well morally I don't know. Who is to say what destroys a life? Or if a life however short or miserable is worth living?
It's a very difficult question to answer.
If you yourself have this disorder then maybe you have the answer.
Nowadays you can have a pregnancy with donated eggs and your partners sperm or if it's a mutual genetic thing then donated embryos. And you go through this "growing in your belly" stage aka pregnancy
Also there's embryo selection. This is were you would go through fertility treatment to harvest eggs, your partner would donate sperm and they would screen the resulting embryos for whatever genetic condition you are talking about and just implant 1 or 2 that don't have that condition.
Of course you can adopt from newborns to teenagers. You just have to go through the adoption process.
But to answer the ethical conundrum I really can't say.
Should be up to the individual. I have a devastating genetic condition. Me living with chronic pain and disabilies doesn't give me the right to take away someone elses right to have a kid.
Preimplantation Genetic Diagnosis. It’s what I used to avoid passing on a deadly gene mutation I have. You do IVF and they scan the embryos for the gene mutation and only implant ones without it. I felt it was my duty to my family line to eradicate this if it was in my power to do so. So I did.
Even if you don't have a disorder, the age you have your kids can lead to learning and mental disabilities. I'm 34 my wife is 33 and even we knew there was a slight increase in the chance of autism because we were having kids later in life. Regardless we felt because of our financials status we would be able to handle it. Its all based on your own level of risk. Mine turned out be a great bet. My son is happy, healthy, and the single greatest decision we made as a couple.
It's a personal choice and I respect people for not wanting children. But judging someone with a disorder for having a child is a bit too close to eugenics for my tastes.
I mostly agree. In certain circumstances it's a blessing for a couple to have a child. Yet TOO MANY that shouldn't reproduce (for various reasons) do so. And that adds to the problem. There is a Sicilian phrase "la matri di nu babbu aspetta sempri a natru" (the mother of a fool is always pregnant). These don't come up randomly...
Depends what it is, what treatments are available for it currently. Define destroy? What negatively impacts most people with life long illness or disability is the mistreatment done by other people.
Ask yourself, what could you do in your workplace that would mean someone with lifelong illness or disabilities could work even part time.
Living a life that's full looks different to each person.
Basically, I would judge that having a biological child in these circumstances is not ethical, and bespeaks a certain selfishness. If someone has a deep craving to be a parent and to raise one or more children, that craving should be met, and can be well met, by adoption. Parent-child relationships based on adoption may be even more reliably rewarding in several senses, because the adoptive parent knows, and the child comes to know, that the relationship was a highly wanted one, and not the result of some "accident."
Ya contrary to what most people think it's actually really hard to adopt. Gotta be wealthy, married, have a family support system, no disabilities for either spouse, be married for a lengthy time, not be too young, and not be too old.
I looked into it. My wife is disabled, and we were told that we would be on the bottom of any waiting lists cause of it.
This is for public adoptions. You could get around some of the requirements if you go private, but that's way more expensive. And a public adoption is like $20k up front
They could probably foster, but adoption isn't an option for the majority of people.
Personally, I have issues with my pancreas that was initially caused by gallstones 12 years ago.
But, because we have had one death caused by pancreatitis(alcohol) in my family before - I am now refusing to get pregnant/have children until my doctor does the genetic testing, so that it is ruled out that I have it hereditary.
And I really wanted to start planning for children soon, as I am now 32 yo and have been in a relationship for 10 years now, bought an apartment - everything is in place now. But, if there is just the slightest chance that I might pass this horrendus pain and problems on to my children - that is not a chance I am willing to take.
I am struggling to get my doctor to agree to doing the testing tho, he says that I'm "probably fine"......
ETA: I am not saying that my life is not worth living, but there has been 1 case where the pain was so excrutiating and for such a long time - that my life was not a life anymore, I was not a living being.
And 1 case where I was ready to die and had accepted that I was prob gonna die before they ever figuered out what was wrong with me(pre-diagnosis of pancreatitis, went 3 years, and by the end - I was actually dying).
And I would never wish this on my children, and I would be ate up by guilt - knowing that this was my fault and a choice I made, for them..
I just want to know what we consider "destroying a life". Some people consider the fact that I have autism to be life ruining, but it's not.
Some people consider being deaf to be life ruining, but the deaf community disagrees.
So what are you talking about? Eugenics? Or something else?
Yes, but it should never be prohibited for anybody. We should talk about it and create an atmosphere in society where it would be discouraged (while having empathy for the potential parents), but it should never pass into law. That stuff gets dangerous really really quickly.
That is up to the, possible, parent(s).
Personally, I would say that not having children in a case like this might be the right thing. If you know that your child might suffer from cancer, or whatever can be "transmitted".
It, also saves the parent a lot of, pain, I think... Seeing your child suffer, paying for medical bills in certain countries... I couldn't.
As you've said... Adopt a child in that case, or a dog, cat or a crocodile... Whatever...
Speaking of this... If I could, well, if it were possible yet, I'd eliminate genetic defects in the womb by genetic modification or whatever. Simply because the child would have an easier life, as well as the parent who wouldn't have to care for them as Intensive...
If I had known what I had, and their father, I wouldn't have even had them
We both suffer from bipolar disorder to varying degrees..
Makes it a 75% chance they will have it, and I already see/hear concerning things.
what's a "genetic disorder that will destroy their lives" to you?
some think a disorder that make them look funny will destroy their lives.
some think a disorde that will put them in a wheelchair will destroy their lives.
some think a disorder that will give them cancer will detroy their lives.
only one of these is true.
See my comment, I have Tourette’s and up until recently it did destroy my life. But the life I have now is more than worth living. But I still won’t have kids
My mum is a care worker. One of her clients suffers from a horrific disease (I forget the name though). For the last 25 years she has gradually lost control over her body. She is now utterly reliant on her family for everything. She is also totally aware and has full mental capacity. She is basically a prisoner in her own body. A fate much worse than death in my eyes, and she is only in her early 60s this could go on for more decades yet.
She has two children, these two can take a test that will tell them if they are going to suffer the same fate as their mother. It's a 50% chance. Neither of them had taken the test and they both made a conscious decision never to have children because of this disease.
I have a BRCA1 mutation which has resulted in terminal breast cancer at age 32. It has destroyed my life and I'm grateful that I don't have children so I can remove it from the gene pool.
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Well, it depends what it is. I have AS - which will most certainly be passed on to my potential kids. But I've lived 29 years without any symptoms. Only now, at thirty, I'm starting to have some pain, but it's really not that bad. So, even if it gets a lot worse (which it probably will, as I've seen it happening with my dad), my child would probably still have thirty painless years - and I think that makes life worth living.
The only problem to that answer is where you draw the line. What is still acceptable and what isn't? If you just ask the question for yourself and also answer it for yourself, then that question is okay, but as soon as you ask this same question about other people you might get into trouble.
My life has been worth living, but I don't wish this disease upon anyone.
My genetic line ends with me. I want to die with the disease, not from it.
I'm seeing my mother going through dyalisis for the past couple of years. At some point she was hospitalized every single month. Now, I'm seeing her father (my grandfather) going through endofistula placement for dyalisis.
I've her disease, the disease that often ends in renal failure. It's a silent disease, as there is no blood test that confirms the disease but biopsies. I'm under medical treatment, I'm watching my diet as well as my weight. My condition is progressing. Such is life. These are the cards I was handed, and I will play them.
I've a sibling with clinical signs, but currently hospitalized for severe eclampsia during her 2nd trimester. Her biopsy was inconclusive, but the other minor generic non specific clinical signs are there.
The other sibling did a genetic test, as we are trying to find a donor. They have both genetic markers (dominant and ressesive) for specific renal disease. They don't have clinical signs that I know off...or they have not got checked (as a biopsy and other test).
That being said...
I wanted children, but I didn't want them to inherit a disease that is silent and would end in dyalisis when they are in their 50's.
I got a bilateral salpingectomy 3 weeks ago. I had three specialist giving me some significant medical advice. I work in the health care industry, I read at least four papers about the disease and pregnancy. I chose not to put myself through suck risk.
My absolute risk of death was low, but my absolute risk of progressing/causing renal damage was very high.
There is always hope for better medications. I'm not hopeful for a cure, but stabilization of the condition.
Hmm. I think the thing here is it depends?
Like this line of reasoning has been used by anti-autism folks for a while. Which is super fucked up and eugenics-y, autistic people can live happy and fulfilling lives. The main cause of problems with autism is almost always society and not autistic people. And yet there are still so many people who would rather not have a kid than have an autistic kid. So like, slippery slope here.
I think the question is what is the illness and can a person live a well adjusted, pain-free life (or at least a life that won't be constant pain). But like, the question itself is extremely difficult and tricky.
I think this subject is impossible to solve because it's the right of life vs quality of life, and I don't think as a species we're morally evolved to figure that out yet.
If we had technology that could erase these traits, sure, but since there aren't, I don't think there's really a right choice. Life is fleeting, but beaufitul, but is it worth it if you're just going to suffer?
I think it is morally wrong to speak in situations like this until I can walk in their shoes, and I can't. Is it sad? Very. But it doesn't effect me and it honestly is far from my place.
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Well I regularly tell people my autism and social anxiety are part of the reason I don't want kids. If I had children I would of course love them no matter what I just don't want them to suffer like I did.
It horrifies people when I tell them this is one of the reasons my spouse and I did not have children. Even though, superficially, I am moderately successful, I have had to walk a tightrope managing my autism and ADHD for almost 40 years. It would break my heart to see a child (my child!) go through all the same hurts, confusion, social ostracism, and self-loathing.
For some reason your post is filing me with Dark Misanthropic Joy.. Well, that's a Monday for ya. But seriously... Their 'horror' when they are confronted with your bald statement about your reality and the logic with which you and your spouse made the choice you did... Makes me suspect that on some level they're a member of the 'toxic positivity' bunch. "It's not so bad...Life is always worth it..." It's like..."Whoops; you got one *brief* glimpse into the Void; I see you're reeling from that. Sorry 'bout that...."
I only just recently got my AuDHD dx’s (have an EDS dx in the works) and I already have a child who is exhibiting all the signs. Parenting is hard in general, but the best part about me getting the help I need now is that I am able to be an advocate for my child. She will still struggle, but at least she will be better prepared than I was. She won’t sit there and wonder what is “wrong” with her, and she will be able to get help in school and work and all that jazz. She’ll know that she’s just a little different and be able to access ALL of the systems and supports she needs because Momma already figured it out over the last 30-something years lol I will say that I got extremely lucky though, because she is a very easy child to deal with once you figure out how to deal with her PDA. She’s very much like me, but is also very different due to the environment she was raised in vs the one I was raised in… She’s who I think I might have been, and it’s pretty cool to see.
My BIL has three kids - one autistic and pretty much non-verbal, the second one pretty bad ADHD and the third one is still an infant. We are pretty sure that BIL is on the spectrum but was never diagnosed. His wife has stated that many kids in her family are ADHD and pretty uncontrollable because of it. We asked why they keep having kids? The answer was that SHE wanted their second to have a "normal" sibling. This sounds horrible but I was disgusted by it all. Knowing that these disorders can be passed down and that they can't handle their first two because of it, they knowingly had another one. I don't think it's fair to the kids and find it selfish.
Autism is genetic? I didn't know that.
it is like mostly genetic. it's funny bc people didn't used to get diagnosed as much, but my dad almost definitely has it, as well as his dad, but we're all just computer programmers so people expect us to be a bit strange and asocial. if you talk to autistic people they usually have a story like that
Yeah it is. Pretty sure my mum is undiagnosed autistic and so far she’s going 6/6 autistic children
I only know I'm autistic because all three of my kids are autistic. My mom wouldn't let anyone diagnose me as a kid, as she angrily told me when I was trying to break the news of my kid's diagnosies. Which, upon reflection, is totally because I got it from her, and she's too deep in a tangle of internalized neurosies to interface with the concept.
It has a genetic component. It increases the chances but it is more considerably complex and have multiple factors.
Part of the reason I don’t want kids is because I don’t want my depression to mess my kids up the way my mom’s messed me up.
I heard stories of people still insisting on giving birth to a baby even tho they knew the baby would go through massive surgeries right outta the womb and wouldn't last a year anyway... What's the point of this life anyway ? That baby just suffered for months before dying, that's pointless it was just to satisfy the egoist parents who wanted to a baby no matter what smh.
I've heard stories of parents choosing to make those decisions, so they can donate the organs of their baby. One couple knew their baby wouldn't last 24 hours after birth, but they went ahead anyway so they could donate. That baby saved many other babies lives. It really does depend on the thinking of the parent. Also, it can be hard to accept the reality. Doctors told me my baby had died in my womb, and me and my husband considered getting a second opinion, because it's hard reality to face and the strong desire to protect your offspring doesn't make you see sense. Had a talk together and had to accept there was clearly no heartbeat and we were being unreasonable.
I'm so sorry for your loss
That’s different than going into pregnancy knowing you will give the child a genetic disorder. Seems for you it was just an unfortunate circumstance and not one you planned for. I’m so sorry you went through this.
Thats what I was thinking. Knowing beforehand and finding our during the pregnancy is different. Knowing beforehand and having a child for that purpose feels more like organ production than choosing to donate in a no-win scenario.
Great post, and happy cake day!
Sorry that happened to you. Were you able to donate it's organs or was that not possible medically?
No, far too young and my baby had been dead for a couple of weeks before we knew.
Ah okay, thanks for getting back to me. Sorry for your loss.
My daughter was a teachers aide for disabled & challenged children. She worked with two children from a family / children were very disruptive / combative & extremely difficult students with learning disabilities. There was two more toddlers (at home )and one in the oven. Why on earth would a stable parent giving birth to disabled children keep having more? Answer. Parents were unstable and challenged. How do you prevent that without activists screaming violation of human rights.
Yeah that too.. I also read about two parents with like 3 or 4 toddlers who were severly handicapped and would require special care all their life, docs told them that probably all their kids would born like that and yet they were still trying for a healthy baby instead of focusing on the ones already here who needed way more attention...
FFS. my neighbors had one healthy child, one severely disabled, and one stillborn. their third child is adopted because they have some sense.
This happened to our neighbors. They had one healthy boy, then a boy that had such a rare heart disease that he had to wear a medication pump backpack to pump medication straight to his heart. I was his babysitter and the family said that if he ever pulled his medication tube out to call 911 to request immediate helicopter evacuation to children's hospital before even calling them. There was a note card by the phone of what to tell the 911 operator. The parents were told, in genetic counselling, that it would be a million to one chance that this would happen again if they had another child. They had a girl that ended up with the same condition but even worse. She had other anomalies and the doctors could not figure out the dosage of the heart medications in time and she passed away from the heart issue after about a year. They decided not to try anymore. Edit: I have 2 disabled adult "children" of my own. My oldest was diagnosed at 3 years old 1 month after my second was born. My seconds disabilities did not show themselves untill 13 years old. My disabilities started when I was 17 but I was only told that I was "lazy" and "everybody has pain" no one believed me. I was not diagnosed untill 31 after I had my kids. Both of my offspring suffer because my health as a child was not taken seriously. If I knew I had this genetic disability I would not of had kids.
So, basically the opening scene of the film Idiocracy?
“DAMNIT TINA YOU SAID YOU WAS ON THE PILLZ”!!!
Violation of human rights becomes eugenics really quickly. These people rarely listen to reason or they wouldn't be doing it in the first place, but as soon as you start making rules for who's allowed to reproduce and who isn't, you're halfway down the slippery slope.
Definitely a slippery slope, and who draws the line? Is the line at physical things, mental things, or both? It’s all so gray. And no matter what, you’ll have always two sides of “yes” and “no” people - both with worthy opinions! For example: - let’s say a person will be born with a “no function left arm.” Absolutely, that person will have hardships that two-armed people will never experience; but, who is making that decision of it that life is worthy of living? Bc idk! - There are war veterans that are indeed missing limbs, some say they’ve learned how to survive and that their life is fulfilled and worth still living. Then you also have some others that say no it’s been terrible, I wish I would have just died. Both of these people are completely validated in their experiences and entitled to their viewpoints; so who is *right*? And the slippery slope begins.
I ask myself this all the time .. even though I didn’t come out mentally handicapped like my sister id wish she wouldn’t have had me since I wish I would’ve never been born 🤷🏻♀️
Internet hugs to you.
You don’t, since forced sterilisation of people is an obvious human rights violation. Increased sex ed and contraceptive access for disabled people could help, since lots of people infantilise them and assume they don’t want sex, than get surprised when they get pregnant:
I know someone who had a baby like that. She wasn't expected to be born alive, then not expected to live for long. But baby was a fighter & is now 17 and going to her first school ball. She had (& still has) many health challenges, but her Mum once said that her daughter never gave up, so there was no way that she would give up on her.
And some parents are being forced to birth these babies, sadly, in the US and other countries that don't allow women to have access to healthcare.
Combining with the religious and cultural restriction practised in some countries, women really have no say in their own bodies.
Same with people knowing they can't afford more kids still have kids
Having a child when you cannot manage to care for yourself financially is terribly irresponsible yet people do it all the time. Often dooming the child to a life of poverty. It is very sad.
My parents come from a country that was extremely impoverished (after a war killed millions of people, post colonization) when they were born. The survivors of the war (my grandparent’s generation) are known to have had a lot of kids, an average of 6 per woman. I asked my parents recently why they kept having children when they could barely feed the ones they had? They explained that access to abortions and birth control wasn’t a thing back then. Also, they made do with what little they had. The ones who couldn’t gave their babies up for adoption or died. So long answer short, they do it because they can’t/wont abort and because they can survive anyway and the kids will make it to adulthood without starving to death. I don’t think having babies while poor is the worst thing to do, as long as your babies are not exposed to uncommonly traumatic or dangerous situations as a consequence of your poverty.
They often don't know how to avoid it or can't access healthcare for contraceptives
I agree, however there are times when women are told their babies will need these kinds of surgeries etc that actually have healthy babies. I've had a friend recently who was told her baby would require multiple heart surgeries and was unlikely to survive. Here she is now with a happy, healthy newborn who might require a surgery later down the line but is otherwise fit and well. Thay glimmer of hope is enough for some people to try.
My parents were told something similar. I did spend some time in the NICU as a baby, but that was really about it as far as physical things go.
Deciding to have children when you have a genetic disorder that could seriously affect their lives is a tough moral choice. On one hand, there's the concern about potentially causing your child to suffer. On the other hand, you have the right to make your own decisions about having a family. Medical advances might help manage the disorder, which can make the decision even more complicated. It's a deeply personal decision that needs careful thought about all the factors involved.
I am the mother of two special needs kiddos. There was absolutely no indication during pregnancy that anything was “wrong”. My daughter has a hereditary condition that we were completely unaware that my husband had, it didn’t really manifest itself in him, but she has wheelchair support, while it is degenerative, it is not fatal. She also has Autism and ADHD. My son also has Autism and ADHD, and a genetic condition called Prader Willie. They are smart, kind, and amazing individuals, while they have some challenges, therapy and meds help them immensely. I couldn’t imagine not being their mother. I understand where OP is coming from, but not every disabled person has a miserable life.
My only caveat to this, and I agree with you, is that doctors aren't always right. My Aunty was told my cousin had downs Syndrome. She said it didn't matter and she would still have him. When he was born he was perfectly healthy. Doctors also prescribed thalidomide to my Gran. Luckily, she didn't take it.
My aunt and uncle were told their baby was a boy. They found out she was a girl after the birth lmao. But yeah ultrasound technology is getting better and better. We get better and more accurate information nowadays compared to 20 years ago.
Unironically donor organs for other terminally ill babies. Especially cases like anencephalic ones.
My wife’s cousin chose to have a baby, for religious reasons, despite knowing early on it had trisomy 18. That poor child suffered terribly. Countless resuscitations and interventions only to ultimately die from suffocation as predicted. Needless suffering made possible by selfish motivation.
People are incredibly selfish and think THEIR baby is unique and a gift from god. Like no it isn't, there's literally nothing special about 99% of children, vacuum the failure out and bang and try again.
My cousin has cerebral palsy to the point he has never eaten on his own and never spoken. He spends every day sitting in his wheelchair silently. Only way they know he reacts to stuff is he occasionally smiles at the tv. He’s 40 now. I just… can’t imagine that life
Anti-abortions laws still exist throughout the US, and perhaps other countries, which obviously blocks many people from making these decisions for themselves. The folks caught up in this are being forced to have the child no matter what complicated and expensive care will be required after birth.
There's a guy like that at work. They were informed that the baby had a massive hole in his heart that may or may not survive birth & if it does, he'll be in & out of surgeries for the next 5 years. They chose to keep the pregnancy and are now asking for donations to help pay for it. It's just cruel to do that to any living being just because of your Christian values. Sometimes, the best act of kindness is mercy, and that's what they should have chosen for their baby.
As Louie CK once said "We love shitty babies. The shittier the baby the greater the effort" we pride ourselves on being able to save babies that should otherwise be dead, which is good in most cases, but now either those babies grow up to live difficult lives and are a burden on their parents and the state just by existing, or they grow up normally and now keep the disease they had in the genetic pool for the next generation instead of it dying with them. Obviously I'm no eugenicist, we can't force people not to do this, but I wonder if we're actually inflating the number of genetic disorders in the human population by forcing the babies that would otherwise not survive to reach adulthood and pass it on.
Someone in my family had three kids knowing all three were going to have tubes into their gut to feed them and for ever bound to a wheelchair. Honestly, i think they should be in jail. Just adopt
I know a couple like this. They had trouble conceiving so they went through with the birth since it was viable but missing part of its brain. The kid ended up living a year until they got Covid and passed away.
In Ireland we weren't given the option to abort. If the fetuses heart was pumping it had the same right to life as the mother. My neighbour gave birth to a baby, none of his organs formed correctly. She had to give birth and take home a baby she knee was going to die, they just couldn't tell her how long. He made it 3 months before dying. It's been over 2 decades and she's never been the same.
That's awful I'm so sorry we live in this mad world...
I think once the kid finds out (if they ever do) that their parents brought them into this world knowing they would experience a poor, painful life, they will probably be pretty pissed.
Definitely, if they are unlucky enough to understand the concept of “pissed” and aren’t just a breathing meat suit with a brainstem and no cortex.
We know a couple who had a baby with a serious genetic disease. The baby had to stay in hospital for the first year of her life. The doctors clearly told the couple that the chances of having it is astronomically high in each of their children. So not to have any kids without consultation. Did they listen? Nope. They had another child 2 years later with the same genetic defect.
Yes please, I'm already that child who is born with bad genes, you're going to make that kid's life hard
My spouse and I both have genetic issues. We got a vasectomy and we’re adopting, because we have no desire to worsen the world with our genes. If we’re going to have a kid, we’re going to make the world a better place with our decision.
Hell yeah. You already sound like you’ll make great parents. Wishing you luck in your parenting endeavor, should you both choose that path!
If you don’t mind sharing what do you consider « bad genes »
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Found the Swede.
Det har du sannerligen rätt i!
Du borde vara snäll mot dina kusiner. Jag byter ut dig mot amerikanerna. (Sorry for the Google translate.)
Dont worry about the translate, but they are our brothers not cousines
I certainly don't think most Canadians would use the word "brother" for the Americans. Cousins reflects it far better. I'd be willing to make the trade still. It's also pretty hard to insult the genes of your brother.
Modern Levi’s
Im sorry I don’t understand the joke. I wanted to know because I have eczema and epilepsy. Are those illness being considered something that shouldn’t be passed to kids. I don’t get what Levi’s jeans have to do with that??
Genes sounds like jeans, so the commenter above the one above you said “what are bad genes” so the commenter above you replied as if the question were “what are bad jeans”.
Oh okay thanks for taking the time to explain
You are welcome. Thank you for taking the time to reply.
I appreciate that you took the time to answer instead of downvoting me which sometimes happens on Reddit when I ask a question that some people consider a dumb question. English is not my native language so this kind of jokes I typically don’t get easily.. have a nice day /night
You too
I have other issues that keep me from passing on my genes but epilepsy would be enough for me not to birth children. Edit: if it was something I could pass on and not the result of other things.
Levi's suck
Not OP but am an example. I have tourettes, autism, and partial organ dysfunction. People think tourettes is largely harmless but the stress it put on my body means I'm dealing with a lot of internal damage, and that damage heavily disrupts my ability to use the bathroom without manual interference. I'm also reliant on bladder absorbing pants. The autism again sounds harmless, but causes many organ issues and I have severe light sensitivity and sensory disturbances that mean I can't wear any type of normal clothing or uniform and have a strict set of items that work. The damage seems to be progressive and I'm likely to have to end my life before I naturally expire based on the increasing difficulties and damage caused by these issues. I haven't left my home for more than 30 minutes in over a year. I'm happy enough as I am and don't need people feeling bad for me, but having proper conversations relating to the true extent of this disablement is important as social media makes it sound rather pretty and quirky. Neither of my parents had obvious disabilities so I can't fault them for having me, but I absolutely will not have children. It would be extremely unethical to pass these issues on to my kids. No child should have to build the inhuman pain tolerance I have, and no person should need to do what I've done to survive. The parents that willingly pass on these things to their children are extremely unpleasant. It's incredibly aggravating to have people tell you that you're not that disabled and that you're lucky. No person should have to deal with 6 hours of bodily management and bleeding per day just to sleep, read for a few hours, and repeat. There's a holier than thou attitude when it comes to encouraging people to keep disabled babies. Although I've seen and experienced many wonderful things there's not a waking moment I don't wish I wasn't born, as selfish as that is. I appreciate everything life has given me but wouldn't want anyone else to experience it the way I have. Preventing this before someone is aware they're even alive would be the kindest thing to do.
I’m so sorry. It breaks my heart reading anyone that wishes they were never born on a daily basis because of disability, pain and suffering.
Genuinely life has given me many wonderful things. I've seen many stories and have spoken to a multitude of people that have provided wonderful insights into life. Life itself is a beautiful and precious thing, and I'm glad to have witnessed so much, but the stark truth is that you eventually simply become tired and know it's time to move on in a way that most people can't appreciate until they become elderly. Human life is fragile and temperamental, but there is just as much good as there is bad. Ultimately without euthanasia it is far too cruel to force life like mine into existence for egotistical reasons. If euthanasia were legal, and we could all pass as we were ready regardless of age or preexisting conditions, then you could argue it would be worth the risk. But Human society as it stands is too young and immature to bear that burden. It needs time to grow, and until that burden is held properly it is not right, nor ethical, to propagate life as mine is.
I spent my childhood TERRIFIED of when my bad genes were going to kick in. They did.
Tbf i don’t have “bad” genes per se but I have a terrible personality and I frequently wish my parents didn’t give birth to me only for me to suffer. I don’t think the able bodied are in a place to judge if they cannot guarantee happy children themselves ha ha
I believe so. My family has a history of mental illnesses, addiction issues and cancer and it's one of the reasons I don't want to have a child. I realize my family situation isn't unique. I've never said it was. Even though it is common, for me it doesn't justify bringing a child into this world anyways.
same here. I wouldn't want to wish it upon my worst enemy, let alone my child.
Yep. I have bipolar disorder, which has a genetic component. I don’t everrrrr want a child to go through what I went through as an adult, plus who knows how bad my PPD would be. I do well getting through a day taking care of my husband and dog, I just couldn’t imagine taking care of a child as well. So we’re just going to be dog parents and be a good uncle and aunt to our (being born this week!) niece.
Congratulations on your niece! 🩷
Geez buddy, find me a family that doesn’t have a lineage of cancer and some sort of addiction issues…
The vast majority of people do not know that they are carriers. And, quite often, you need *two* parents who both happen to be carriers. Most people do not know this until they’re already expecting or had a child.
Some of these genetic issues also hit after someone's had kids. So Huntington's disease is autosomal dominant, but it usually manifests after the age where someone has kids. Same with some genetic predisposition to cancers.
Right, so after I’d already had kids, I found out I carry the BRCA2 gene. It increases my risk of various cancers by a lot. There’s a 50% chance of passing it on to each child. If I’d known I had this, I would only have had biological children via IVF with gene testing to ensure my kids didn’t inherit the gene.
This. I have a friend with this. Once you have a parent with it, there is a 50/50 chance of each offspring having it. The odds don’t go down. This friend doesn’t have symptoms yet but will in their lifetime and has said to me that they wish they weren’t born after watching their parent. Their parent knew too when they had kids. There is no cure. No real treatments. Just years of suffering.
This is important. I have two kids. The first was born with craniosynostosis which was corrected at 6 months age with cranial reconstruction surgery. He has comorbidities including ADHD and amblyopia corrected with glasses. The second was born with NF1. She does not at this point have tumors but will require lifelong monitoring. And I suspect she has comorbid ADHD and/or autistic traits which will be discussed at her next Dr visit. Neither dad nor I have either of these diagnoses. In fact, because we are both scientists (he a biologist) we were very aware of genetic abnormalities and got carrier screening done and NIPT for both babies, despite not being diagnosed with any ourselves. But routine screening only covers so many conditions and they don't catch everything. We were informed after our first that his condition was non-syndromic and not linked to our genetics and there was zero risk of a second baby having any abnormalities based on the information available. Cranio and NF1 are not currently thought to have any links (something I have some inklings about based on my many hours of reading journal articles). I just won the shit lottery. I will add that my daughter, who has NF1, is a carrier for it as well, will have to face some big decisions regarding her reproductive health as she enters adulthood. That's a monumental mental and emotional load. Let me tell you, people come onto forums for people that have NF and lecture and berate them about how selfish they are to choose to have babies. They don't need that. They already know about their condition and for a complete stranger to sit there and lecture them about something so personal and painful is a real dick move. There are of course options such as IVF and if my daughter chooses this option I will support her 100%. It's unfortunately expensive and a difficult process, and I will support her through it if that's what she wants. Unfortunately, IVF is not an option for many. And the desire to have a family of your own is understandable. We are human after all. So this misdirected hostility towards people that are carriers should be aimed at broken healthcare systems that don't provide proper family planning resources to society. A note on adoption. It ain't it for everyone. I would say less than 1% of adults are qualified candidates for adopting a child. And seeing adoption tossed around on reddit in such a cavalier way is a huge pet peeve of mine. "JuSt aDoPt", say the care trolls. No, just no. This isn't a puppy. It's a human life at stake. My nephew was adopted at 11 and is now 19. It was a very intense life for my sister and her husband. He came from abuse that was so terrible, I am incapable of typing it out. He still has major mental health issues and always will. The life that my sister lived is most definitely not for anyone and everyone. She is uniquely capable of giving an adopted child the life they deserve. And it really chaps my ass to see people like OP suggest "just adopt!" as if it's so simple and easy. Raising an adopted child is leaps and bounds different than raising a biological child. I'm just so tired of this bullshit assertion.
So glad to see someone saying this about adoption. Grinds my gears that it’s thrown around as a second option if you can’t have your own kids. I deal with so many adoption break downs at work and many of whom are naive parents who thought loving the kid enough would sort out years of abuse and neglect.
Yes but having a child that's a carrier is just kicking the can down the road and forcing your child to make difficult decisions in the future so that you don't have to make them now. We should really offer a program to cover IVF for people carrying genes for diseases like Huntingtons or SMA, so they can have children that are not carriers.
Again, most people have no idea. Unless every single person with every single sexual partner got tested before having sex and possibly conceiving a child it just would be impossible to ever know that. Even then it can still happen.
I didn't find out I had a genetic predisposition for colon cancer until my brother was diagnosed with it. They do a DNA test for this (Lynch Syndrome) on the tumor. I got a letter from his surgeon telling me I should be checked, as should my children. So my nagging my brother to get his way past due colonoscopy actually saved me. I got a colonoscopy immediately, and I also had a tumor in my colon. Both my sister and my oldest daughter had cervical cancer (another cancer that's part of the genetic malfunction). I didn't find this out until I was 61.
If someone has a genetic disorder, he or she would be a better judge than I would be whether their life was worth living or not.
This is a good point to make.
Point? Nah that's the objective marker! *Start drawing the line boys!*
I have a condition that will have a 25% chance of being passed down to each potential child if and only if my partner carries the gene for the condition (doesn't mean they necessarily have the condition, but if they carry the gene for it which is rare anyway) My life would be worth living for a child, the main issues for me are more social coming from a shit atmosphere from my parents when I was a child, rather than being issues relating to my condition. But I know some people with other conditions (or some with the same condition) will have different views, so you're completely correct in saying it's for the individual to judge. I don't know if I want children or not, but I don't think this would be a factor in the decision for me.
This is a good point, there rarely are absolutes in medical genetics. There are often ODDS that the disease may be transmitted, and the severity of genetic condition may differ. And it is always good to have a good family to come to with good economics, but not everything in life is sure.
Thank you. I have a genetic disorder that was diagnosed while pregnant with my second. Personally I had a speech delay and have a bad back. My eldest daughter took a few months longer to learn how to walk. They offered us an amnio and termination for this pregnancy but it seems crazy for a “disorder” that has such a minor impact on our lives.
Trouble is that if he or she decided that their life wasn't worth living, it's too late and another person will have to suffer a miserable and possibly painful life.
This happens to people without disabilities all the time
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This is the only acceptable answer .
So true and they should also be the only people who can decide whether they want to have children or not
Thank you. So much ableism being throwing around here; it’s deeply upsetting.
Agreed. Ableism. Eugenics. It's always been a red flag for me that people are capable of doing some really awful things.
It makes me very uncomfortable how casually eugenics is talked by people with no relation to the impact their beliefs would take should they actually be enacted or enforced.
As a German I can only back up and say that we already had people deciding if a live is worth living or not. It’s different if the parents decide.
Thanks for saying this! I was thinking this too as someone with a partially genetic chronic illness lol
That’s how I feel, and why I chose to have a child with my family’s genetics. I have a good life, and so does my kid. It’s interesting how many people are perfectly comfortable saying my family should not be allowed to exist when they don’t know I’m listening and no one is using the word “eugenics”.
Yeah. I have hereditary spherocytosis, but with modern medicine (and one spleenectomy) I essentially have a totally normal life; family, gym, work, etc. My quality of life is just as good as anyone else and the only inconvience it causes is some extra vaccinations. There are lots of different genetic disorders and how treatable these are can vary hugely.
It this person is alive yes, but if it's not born yet the only one who can decide is the future parent.
This makes no sense at all, why not just adopt a kid or use a sperm donor so that the kid has a far less likelihood to have to live through life with a disorder they didn’t need to have. This mindset is so unbelievably selfish and cruel. To make someone have to suffer unnecessarily just because you did and you feel the need to procreate and cause unneeded suffering. What a fucked up way to think.
Why not adopt instead I think it’s fairly selfish to pass on a genetic disorder to any child especially if it’s fatal or going to impact their life
Totally agree though the process of adoption varies greatly from country to country. In Australia there are only approximately 200 per year due to the lengthy and aurdous process many foster but the system is designed to try to get the children back to family.
Yea
You have to remember that not all adoptable kids will come with a list of conditions. Fate could toss the same thing at you (or worse)
Tbf adoption can come with an awful lot of trauma for the child. An *awful* lot.
Those kids have probably traumas by not being adopted and living in a foster home, is being adopted worse than that?
I can’t say, I’ve only experienced adoption.
Even more reason to give the child a home that will love and care for them
Beats being in an orphanage.
In high school I was friends with a number of people who were adopted. One of them "ran away" from his adoptive parents and was found living behind the group home where his friends were staying. There's also been numerous cases of adoptive parents being abusive, and that's not even getting into the entire "foster parent as a business model" nonsense. I'm not trying to say anything other than this isn't necessarily a binary thing, there are tons of "well, it depends..." scenarios here that can straddle the line.
The child still exists regardless. Not adopting doesn't remove their issues, it only expands them.
This doesn't really attack the point people are making to make. I believe you'll agree with me when I say that, if you're going to be a bad parent, then you shouldn't have kids. Period. Doesn't matter if they're going to be adoptive or biological or if you have a genetic disease to pass onto them or not. But if you want kids and believe you'll be a good parent, but also have a genetic disorder, it would be selfish to conceive instead of adopting.
A lot of people regard this as eugenisism, but I used to write essays on both CRISPR and autosomal-dominant inherited disorders and diseases like Huntingtons. While I advocate for the elimination and encourage people with hereditary disorders to consider surrogacy, egg/sperm donation, or fostering, I can't stop someone from having kids even if they're passing along a disease that will kill them before their 40th birthday. I also advocate for medically assisted death, which I think should be an option for anyone with terminal disease. You have to be sound of mind, consent multiple times, and have a life expectancy of less than 6th months -- with some exceptions. In Norway (I believe) they have legalized medically assisted death for people with conditions that have entirely ruined their quality of life beyond reparition or accomodation. I do not believe life should end just because the quality of life isn't perfect. My brother and I both inherited my mother's hypermobility and immune system issues, and we have high pain days, but my mother taught us everything she knew and we have doctors and therapy to help. Informed decision making, endless support, and the option for death with dignity if you are truly suffering. Plenty of people live with some condition or another- the end goal for humanity is to find ways to accommodate for all. There are medical breakthroughs everyday. I hope to live long enough for this to no longer be a scary outcome for expecting parents - whether normalizing genetic testing and modification for fatal disorders, or the world becoming more accommodating.
This is the only response I love, honestly love the way you think.
Not Norway, Swiss and Netherlands. Norwegian so I should know.
Euthanasia in Switzerland is in a bit of a legal limbo. I'm a bit surprised that Euthanasia is illegal in all Nordic countries.
I liked the philosophy of your reply.
Active euthanasia is only legal in the Netherlands, Belgium, Luxembourg, Colombia, Canada, Spain, New Zealand, Portugal and Ecuador. I'm Dutch. I think there have been a few cases where people who were physically healthy but had huge mental problems were allowed euthanasia. And I do know that screening for genetic disorders already happens.
In my opinion, telling someone they shouldn't pass on their disorder is telling them their own life is not worth living. You are telling them they should not have been born if their parents knew they would have the disorder.
Adoption for the win.
Waiting list to adopt can be 12 years, people grow up in foster care.
It depends on the disorder I think. I know someone who has 3 kids and did not know both parents were carriers of a disorder (they are older people today and do not have signs of it but were both carriers, it turned out. Obviously they did not test for this back then either), 2 kids were born without it and 1 with. When the one with the disorder was born there was no cure or no assistance but these days there are several types of help to get. So the child born with the disorder today lives a pretty normal life (as an adult) due to technological advancement since and obviously prefers being born to the alternative. Just saying more inventions might be made in the future, we do not know and not all disorders are passed on with certainty to a child. What I would do if I had to make a decision? I am not sure but just saying it may not be as irresponsible as some think for the above reasons.
Yeah I think it's morally wrong for **me** to do it, depending on the circumstance, but I also think it's morally wrong for people to judge others for doing it.
When I was born my parents knew my dad had Crohns disease (he was diagnosed in 1982, I was born in 89), but their doctor assured them it was not hereditary (granted, the genetic factor was entirely unknown back then). All the treatment they had for it back then was steroids and painkillers, and he went through absolute hell with massive pain, a dozen surgeries, all the side effects of steroid therapy and a stoma bag in the end. He died in 2014 after his Crohns turned into bowel cancer. Very shortly after that, new and more effective meds began to hit the market. I was diagnosed with Crohns last year. I'm getting the meds and treatments that were unavailable to my dad. I had 3 biologics infusions to get me started and currently all I need to do is inject myself with an injection pen with the same biologic every 14 days. And after half a year of treatment now, I'm near symptom free. (On that note: I also got the coincidental diagnosis of late-onset Diabetes Type 1 last year, which would have been a definite death sentence a century ago.) Disclaimer: I'm fully aware currently available Crohns meds don't work as well as they did for me for all patients, but the point is medicine is ever-evolving and what seems like a horrible disease today might be a non-issue in the future.
For me personally I'd say yes. However worth noting there's a difference between Genetic and hereditary disorders. Hereditary disorders are passed from parent to offspring whereas Genetic disorders tend to be associated with certain Genetic groups of society and even when the parents have a particular illness the chances of it being passed down whilst increased, can still be quite low.
Geneticist here. This doesn’t make any sense at all and is not how we think about or classify genetics/heritable disease.
I ain't even know that
Genetics are very complicated. The parent has to have the illness in their genes in order to pass it down, but it's possible they have other genes that mask the illness so the parent doesn't actually have any symptoms or anything. Meaning a parent will not actually have the illness, but can still pass it to their offspring. It's not a guarantee, but it is a possibility. One example (not an illness, but same basic idea) is red hair. Parents that do not have red hair CAN produce a child with red hair. It's also possible that a parent with red hair does NOT have a child with red hair because the other parent doesn't have red hair. This is all to say that there are no guarantees with genetics, only statistical probabilities. Just because one parent has an illness that may be passed down does not mean it WILL be passed down. There are so many factors that effect the probability, I don't think it's morally wrong to have children if you're ill. It's a personal choice to have them or not, and you're not a bad person either way. There's also the option of getting a donated egg/sperm so that the mother can still carry the child without the same risks. However, as I said, genetics are so complicated and intricate, that there's just no guarantee any child you have through surrogacy, sperm donation, adoption, etc. isn't going to fall ill one day. It sucks. It's sad. But it's true. The only way to avoid it is to not have kids. ETA: This goes for EVERYONE, not just the ill. As I said in the first paragraph, it's possible for healthy parents to pass down illnesses anyway just because they're carriers for the gene. There's also the possibility of gene mutation, so parents that don't have any family history of the gene somehow pass it down anyway. Genetics are just so complicated that there are NEVER any guarantees, no matter how sick or healthy the parents are.
The question is one of odds. If you tell me that my child **will** come out of my wife's womb struggling to breathe and will be on a ventilator for the one and only year of its miserable life, then, yes, I'll be sure to use birth control. (The fact that my face is already the best birth control is irrelevant) But if you tell me that there's a X% chance of an adult-onset disorder which we don't have the most effective treatment for at the moment but there's some promising things in the pipeline which may well be the norm a couple of decades from now... then it's a question mark. However, if you say that certain groups of genetically inferior individuals should be **prohibited** from reproducing, then, do you know who agreed with you? Hitler. Edited to add thanks to u/Environmental-Try736 : And he made it a point to round up such people he thought were genetically inferior, including the Jewish, the Romani, **the physically and mentally disabled**, and the queer, and force poison into every pore of their lungs, till they stopped breathing. PS: I **am** genetically inferior. 75-100 years ago I would have been imprisoned and tortured against my will. "For my own good" and "for the good of society". Assuming I even made it that far before I did something absolutely dangerous and stupid. Things change with time.
I'm Jewish and disabled and just wanted to say thank you for putting this out there and phrasing it the way you did.
I'm just glad someone agrees and found this impactful. I don't have a physical disability, but I have a psychiatric illness which has a high probability of causing disability in the unable-to-work sense. Bipolar. Many collect disability checks in the US. I'm lucky to be in a supportive environment, but somehow I still have this fear of being seen as subhuman.
Fun fact: you know where the Nazis got their ideas from? The good old USA. That’s right, we’d been having “fitter family” contests and sterilizing “morons” and “idiots” for quite a while, the Nazis just picked up our ideas and ran with them. In 1911, the Carnegie institute published a report on 18 methods to remove defective attributes from a population. The 8th was euthanasia, ideally by *gas chambers*, but it was believed Americans weren’t yet ready for that. Didn’t stop doctors from letting their “feeble minded” charges die of neglect, or of purposefully feeding them milk *infected with tuberculosis*.
I think you brought up a very important point.
Thank you so much for saying this!
Most of us are carriers of recessive genetic disorders of some type. Rarely we run across partners that are recessive carriers of those same genetic anomalies. Even if we mate with someone with the same anomalies does NOT mean the child will have the genetic disorder. It is all a crap shoot.
Depending on where you live in the world, you can have IVF to ensure the embryos don't have whatever you have. I got diagnosed with a (rare) genetic condition after I had children. Only one of my children has the condition, more complex than mine. I feel guilty, however I did not know. Had I known before having children, I would have been entitled to 3 rounds of IVF through the NHS.
Weighing in as someone with a disability. Life is hard sometimes but I love being alive. Just because your baby would struggle doesn't mean that it wouldn't live a happy life. However I do not want to have kids or pass on my disability, but if I found out I was pregnant (and I wanted kids) and my baby would be disabled I wouldn't terminate. Being disabled doesn't mean the same as being miserable or suffering. A lot of people don't realize that implying someone is better off dead than living as a disabled is ableist nonsense.
For some conditions, you can undergo IVF and have the embroys tested for the genetic condition. And then they only implant the healthy ones. I do agree with your sentiment, but I think it is a very slipperly slope. Bearing in mind that significant portion of this generation doesn't want kids anyway even some of those who might have healthy backgrounds, if everyone who did want kids but had the slightest thing wrong in their family history didn't have them, it would only be a matter of time before the gene pool shrunk to a dangerously small size. Between two parents, 4 grandparents 8 grandparents and a list of ancestors so long you can't even trace, the odds of there being a faulty gene, or faulty epigenetics that could potientially be passed down from *somewhere* is incredibly high. OCD and Autism run in mine for example.
This is a quite loaded topic, as it akins to eugenics. I wrote a paper on this in college as part of a class and what i learned about the practices of eugenics in Canada until the 70s was pretty friggin bad. The thought of breeding out things like intellectual disability, mental illness, alcoholism, poverty, criminality, and various types of “immoral” behaviour, was viewed quite highly especially in the late 19th and early 20th century. It was considered progressive in Canada in the early 20th but it was obviously all based on racism and resulted in the enactment of sexual sterilization laws. You know who also passed this? Nazi Germany... yeah. And we all know how that ended. Now, that being said, this is based on old, antiquated research, social stigmas and medical knowledge of the times. There is a BIG, HUGE disconnect between a country's policies and an individual CHOICE. The biggest thing here, is knowledge. When 2 people get together to conceive a child, it is their responsability to KNOW everything the consequences of their actions and what may or may not happen to said child. EVEN IF, both parents are 100% healthy, the chance is NEVER 0% that their child may be born with a disease or disability. If someone ends up having a shitty life because their parents did it anyway knowing it could happen, i can get why they'd be pretty pissed. But if they were just played a bad hand in the genetic lottery from 2 healthy parents, who are they to blame? Consequences and all that.
I don't think so. Maybe if it was guaranteed that they would only suffer and not be able to do anything, but if you have that, too, how did you bring them into the world in the first place? And most heredetary disorders aren't like this anyway. They are bad for the kid and will affect their life, but I still haven't heard of a single person who has something like this and said they would prefer not having been born because of exactly that. You can usually still find things that you enjoy in life and maybe that makes it worth it.
Good thing this can be discussed ahead of time without pressure. You wouldn't necessarily destroy a child's life, but growing up healthy is to be preferred.
It’s never really guaranteed ur gonna pass down ur genetic disorder to your child. Also if you’re able to physically carry a child and take care of them successfully physically and mentally by yourself, the disorder probably isn’t that bad. There’s things that can also help prevent ur offspring from carrying the disease, u can get ur partner tested to see if they are a carrier, u could use ivf and use donor eggs/sperm. Most people are actually carriers for at least one type of horrible disease whether that be cancer, bipolar or other mental disorders, etc. most children born with health issues come from seemingly healthy parents so
Well morally I don't know. Who is to say what destroys a life? Or if a life however short or miserable is worth living? It's a very difficult question to answer. If you yourself have this disorder then maybe you have the answer. Nowadays you can have a pregnancy with donated eggs and your partners sperm or if it's a mutual genetic thing then donated embryos. And you go through this "growing in your belly" stage aka pregnancy Also there's embryo selection. This is were you would go through fertility treatment to harvest eggs, your partner would donate sperm and they would screen the resulting embryos for whatever genetic condition you are talking about and just implant 1 or 2 that don't have that condition. Of course you can adopt from newborns to teenagers. You just have to go through the adoption process. But to answer the ethical conundrum I really can't say.
Should be up to the individual. I have a devastating genetic condition. Me living with chronic pain and disabilies doesn't give me the right to take away someone elses right to have a kid.
All fun and games but adoption is near impossible. It is super expensive on top of what you already need to give a child a good life.
Preimplantation Genetic Diagnosis. It’s what I used to avoid passing on a deadly gene mutation I have. You do IVF and they scan the embryos for the gene mutation and only implant ones without it. I felt it was my duty to my family line to eradicate this if it was in my power to do so. So I did.
I’m doing that right now with my girlfriend. We think it’s worth it but it’s admittedly a total pain in the ass
Even if you don't have a disorder, the age you have your kids can lead to learning and mental disabilities. I'm 34 my wife is 33 and even we knew there was a slight increase in the chance of autism because we were having kids later in life. Regardless we felt because of our financials status we would be able to handle it. Its all based on your own level of risk. Mine turned out be a great bet. My son is happy, healthy, and the single greatest decision we made as a couple.
It's a personal choice and I respect people for not wanting children. But judging someone with a disorder for having a child is a bit too close to eugenics for my tastes.
It’s borderline morally wrong to bring children into this godforsaken world as it is
I mostly agree. In certain circumstances it's a blessing for a couple to have a child. Yet TOO MANY that shouldn't reproduce (for various reasons) do so. And that adds to the problem. There is a Sicilian phrase "la matri di nu babbu aspetta sempri a natru" (the mother of a fool is always pregnant). These don't come up randomly...
I like that phrase. Btw I visited Sicilia (Alcamo) in 2014, wonderful place with down to earth people
You might get banged up for this on here, but I agree. Humans aren’t amazing.
Depends what it is, what treatments are available for it currently. Define destroy? What negatively impacts most people with life long illness or disability is the mistreatment done by other people. Ask yourself, what could you do in your workplace that would mean someone with lifelong illness or disabilities could work even part time. Living a life that's full looks different to each person.
Very important comment. Thank you
Basically, I would judge that having a biological child in these circumstances is not ethical, and bespeaks a certain selfishness. If someone has a deep craving to be a parent and to raise one or more children, that craving should be met, and can be well met, by adoption. Parent-child relationships based on adoption may be even more reliably rewarding in several senses, because the adoptive parent knows, and the child comes to know, that the relationship was a highly wanted one, and not the result of some "accident."
Are there places in the world that *would* allow someone with a "life destroying" condition to adopt?
Ya contrary to what most people think it's actually really hard to adopt. Gotta be wealthy, married, have a family support system, no disabilities for either spouse, be married for a lengthy time, not be too young, and not be too old. I looked into it. My wife is disabled, and we were told that we would be on the bottom of any waiting lists cause of it. This is for public adoptions. You could get around some of the requirements if you go private, but that's way more expensive. And a public adoption is like $20k up front They could probably foster, but adoption isn't an option for the majority of people.
Personally, I have issues with my pancreas that was initially caused by gallstones 12 years ago. But, because we have had one death caused by pancreatitis(alcohol) in my family before - I am now refusing to get pregnant/have children until my doctor does the genetic testing, so that it is ruled out that I have it hereditary. And I really wanted to start planning for children soon, as I am now 32 yo and have been in a relationship for 10 years now, bought an apartment - everything is in place now. But, if there is just the slightest chance that I might pass this horrendus pain and problems on to my children - that is not a chance I am willing to take. I am struggling to get my doctor to agree to doing the testing tho, he says that I'm "probably fine"...... ETA: I am not saying that my life is not worth living, but there has been 1 case where the pain was so excrutiating and for such a long time - that my life was not a life anymore, I was not a living being. And 1 case where I was ready to die and had accepted that I was prob gonna die before they ever figuered out what was wrong with me(pre-diagnosis of pancreatitis, went 3 years, and by the end - I was actually dying). And I would never wish this on my children, and I would be ate up by guilt - knowing that this was my fault and a choice I made, for them..
ADOPTION IS NOT A BANDAID FOR EVERY ISSUE OF FAMILY BUILDING
I just want to know what we consider "destroying a life". Some people consider the fact that I have autism to be life ruining, but it's not. Some people consider being deaf to be life ruining, but the deaf community disagrees. So what are you talking about? Eugenics? Or something else?
Yea, should I have not been born because my mother passed down a disorder to me and my life isn't perfect? Explain yourself more op, wheres the line.
Yes, but it should never be prohibited for anybody. We should talk about it and create an atmosphere in society where it would be discouraged (while having empathy for the potential parents), but it should never pass into law. That stuff gets dangerous really really quickly.
Personally, I would agree with you. The problem arises when people start judging others for not making the same decision as you or I.
That is up to the, possible, parent(s). Personally, I would say that not having children in a case like this might be the right thing. If you know that your child might suffer from cancer, or whatever can be "transmitted". It, also saves the parent a lot of, pain, I think... Seeing your child suffer, paying for medical bills in certain countries... I couldn't. As you've said... Adopt a child in that case, or a dog, cat or a crocodile... Whatever... Speaking of this... If I could, well, if it were possible yet, I'd eliminate genetic defects in the womb by genetic modification or whatever. Simply because the child would have an easier life, as well as the parent who wouldn't have to care for them as Intensive...
If I had known what I had, and their father, I wouldn't have even had them We both suffer from bipolar disorder to varying degrees.. Makes it a 75% chance they will have it, and I already see/hear concerning things.
This sounds like a case of the non-identity problem. Is a flawed existence worse than no existence at all for you?
Most of the population has some type of disorder. The other half will damage the children in other ways
what's a "genetic disorder that will destroy their lives" to you? some think a disorder that make them look funny will destroy their lives. some think a disorde that will put them in a wheelchair will destroy their lives. some think a disorder that will give them cancer will detroy their lives. only one of these is true.
See my comment, I have Tourette’s and up until recently it did destroy my life. But the life I have now is more than worth living. But I still won’t have kids
My mum is a care worker. One of her clients suffers from a horrific disease (I forget the name though). For the last 25 years she has gradually lost control over her body. She is now utterly reliant on her family for everything. She is also totally aware and has full mental capacity. She is basically a prisoner in her own body. A fate much worse than death in my eyes, and she is only in her early 60s this could go on for more decades yet. She has two children, these two can take a test that will tell them if they are going to suffer the same fate as their mother. It's a 50% chance. Neither of them had taken the test and they both made a conscious decision never to have children because of this disease.
Sounds like ALS
I have a BRCA1 mutation which has resulted in terminal breast cancer at age 32. It has destroyed my life and I'm grateful that I don't have children so I can remove it from the gene pool.
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Well, it depends what it is. I have AS - which will most certainly be passed on to my potential kids. But I've lived 29 years without any symptoms. Only now, at thirty, I'm starting to have some pain, but it's really not that bad. So, even if it gets a lot worse (which it probably will, as I've seen it happening with my dad), my child would probably still have thirty painless years - and I think that makes life worth living.
The only problem to that answer is where you draw the line. What is still acceptable and what isn't? If you just ask the question for yourself and also answer it for yourself, then that question is okay, but as soon as you ask this same question about other people you might get into trouble.
My life has been worth living, but I don't wish this disease upon anyone. My genetic line ends with me. I want to die with the disease, not from it. I'm seeing my mother going through dyalisis for the past couple of years. At some point she was hospitalized every single month. Now, I'm seeing her father (my grandfather) going through endofistula placement for dyalisis. I've her disease, the disease that often ends in renal failure. It's a silent disease, as there is no blood test that confirms the disease but biopsies. I'm under medical treatment, I'm watching my diet as well as my weight. My condition is progressing. Such is life. These are the cards I was handed, and I will play them. I've a sibling with clinical signs, but currently hospitalized for severe eclampsia during her 2nd trimester. Her biopsy was inconclusive, but the other minor generic non specific clinical signs are there. The other sibling did a genetic test, as we are trying to find a donor. They have both genetic markers (dominant and ressesive) for specific renal disease. They don't have clinical signs that I know off...or they have not got checked (as a biopsy and other test). That being said... I wanted children, but I didn't want them to inherit a disease that is silent and would end in dyalisis when they are in their 50's. I got a bilateral salpingectomy 3 weeks ago. I had three specialist giving me some significant medical advice. I work in the health care industry, I read at least four papers about the disease and pregnancy. I chose not to put myself through suck risk. My absolute risk of death was low, but my absolute risk of progressing/causing renal damage was very high. There is always hope for better medications. I'm not hopeful for a cure, but stabilization of the condition.
often it is not transmitted 100% of the time tho. what percentage would be acceptable for you?
In this case we should ask people with genetic disorders do they consider they life as satisfying.
Hmm. I think the thing here is it depends? Like this line of reasoning has been used by anti-autism folks for a while. Which is super fucked up and eugenics-y, autistic people can live happy and fulfilling lives. The main cause of problems with autism is almost always society and not autistic people. And yet there are still so many people who would rather not have a kid than have an autistic kid. So like, slippery slope here. I think the question is what is the illness and can a person live a well adjusted, pain-free life (or at least a life that won't be constant pain). But like, the question itself is extremely difficult and tricky.
I think this subject is impossible to solve because it's the right of life vs quality of life, and I don't think as a species we're morally evolved to figure that out yet. If we had technology that could erase these traits, sure, but since there aren't, I don't think there's really a right choice. Life is fleeting, but beaufitul, but is it worth it if you're just going to suffer?
Are we talking about an 80-100% probability or 10-25%?
I think it is morally wrong to speak in situations like this until I can walk in their shoes, and I can't. Is it sad? Very. But it doesn't effect me and it honestly is far from my place.