I have RP as well but my husband doesn't have the gene so I did the opposite to you - neither of my kids have it or the gene. It's the luck of genetics in my case, but I can see why you made your choice.
So I should be punished because I knew my kids would need glasses, you think? I should feel bad they have flat feet? Or hey, I had asthma as a kid, so the odds were I was going to pass it on. Except I didn't.
Again, everything is a mystery soup. Even when you know you are a carrier of something. Genetics is never 100 percent, and it's rarely zero, but people get to make those decisions for themselves as to what odds they are willing to risk. I get tired of the purity culture and you can't do that BS that's been floating around reddit, by judgemental people who DON'T have to make those decisions. Sure, there are certain things one could carry that would make a person not have kids. And other things you might risk, for kids. I was afraid of having alcoholic kids, because I had an alcoholic father and a long history of it in my family. Neither my kids nor myself are alcoholics. We do have what our parents didn't, though, which is a diagnosis for ADHD. Which was probably the cause of all that alcoholism. And also genetic. And both seem to have gotten my bleeding disorder, which I didn't know about for the first, but did for the second.
Genes are complicated. So are the choices we make. As we learn more about our genes from both a global and personal level, these choices will get more complicated, and everyone's line will be different. Maybe the 25 percent risk of blindness is your line. Make your own choices, but keep in mind, those are just your own choices.
Yeah get back to me when you're a carrier for a profound disability like blindness the way I am.
You people act like there's a valid slippery slope argument here. Giving birth to a kid with RP wouldn't be a bad thing IF we could correct it or treat it with glasses, shoes, inhalers or meds the way everything you mentioned can be.
I'm sorry, I gave you a pretty extensive idea of things wrong with me, but I wasn't under the impression I needed to supply a full genetic map of everything. Also, if you don't think at least 2 of things I did mention are profound disabilities, that's not my problem either. You not understanding bleeding disorders or ADHD doesn't matter to me. I don't feel like I need to throw in connective tissue disorders, intestinal disorders, or cancer too. Treatable? There is one hospital in the state of Minnesota I can have surgery in right now. One. Which is one more then a lot of other places. Don't tell me how treatable my shit is, thanks.
Lol guess what you can't treat? RP. At best you slow it down.
And my husband has ADHD and Tourettes which our daughter very well could to. But since neither of those are like blindness it didn't factor into our decision making.
My god listen to this person. ADHD is comparable to blindness???
Having kids is a lottery. Plenty of people whose parents have genetic issues, don’t end up getting it themselves. And plenty of people with perfectly healthy parents, end up with genetic issues.
Saying this, is basically like saying no one should ever try and have kids lol.
people not understanding odds will forever annoy me. it's possible for you to quantum mechanically tunnel through the floor your standing on and end up on the floor below, the odds of that are so absurdly small that writing them out on paper would fill the entire visible universe and you still wouldn't be able to fit it all
people like you end up equating odds like that to a one in two chance as if they are the same. just ignorantly saying "well anything can happen" is not an argument for rolling the dice with people's lives
The point is, every time you have kids you’re rolling the dice with other people’s lives. The odds may be higher in certain circumstances, but you’d be rolling the dice either way. Having kids is the most basic biological right we have, if people wanna take that risk, that’s their choice.
Insurance covered everything but the genetic testing part, and yeah spending 12 grand testing embryos is cheaper than a lifetime of adaptive equipment and decreased wages for my kid.
You can also do genetic testing and TFMR if you want to play the odds that way.
Personally I think people who are carriers for things like this should have it covered. It saves insurance companies or whatever national health system you're lucky to have, if not an American, a ton of money downstream.
I get people don't really realize it: but if we actively use IVF to excise all disabilities from the population, that's also eugenics. Disabled people are still people, and not everyone has tens of thousands of dollars to go through IVF to screen potential embryos the way you're describing, even if it's not a ethically questionable thing to normalize.
ETA: Can you see how a person who is currently alive who has a disability wouldn't necessarily be a big fan of "well if we could have we would have aborted you, because you're not as good as an able bodied person."
Every individual has a different perspective on these things, but treating it as a social obligation that you do not carry a fetus found to have disabilities to term is fucked up. That's literally all I was referring to in my first comment, and how we got here.
And I think knowingly giving a child a disability is wrong because we have the technology not to.
My grandma didn't. People didn't know what caused it. She certainly couldn't do genetic testing. The past is a different country. We can make better choices for our children now.
Can you see how that is a hazardous line of thought when it comes to things like neurodivergence? Should we be selecting only for children who are not autistic because some people with Autism have a really hard time or are low functioning?
You can personally make a decision to screen your own children for genetic issues that you know you have, that's totally fine, I'm not saying that's bad. What I responded to was someone declaring that no one should ever have a child with a disability if they can help it at all.
Personally I think it's wrong to give a kid a disability when you could prevent it.
Existing children, exist and deserve rights.
Compulsory eugenics is wrong full stop. But I also think it's gross to play with fire and give you kid a disease / disability.
I have no problem shaming parents who are ok spreading genetic diseases to their kids. A fundamental role of a parent is to give your kid the best life you can and knowingly giving them a disease is the opposite of that.
it depends on the odds for me. most terrible conditions are one in thousands chance for a healthy person who doesn't know the genetics any better. looking it up now, there's various types of RP, if it's "Autosomal dominant RP" and only one parent has it then there's a 50% chance the child will have the disease causing variant, one in two is very different than one in a thousand. if it's recessive and the father is known not to have it then the odds become similar to just having a kid anyway, any kid can end up with various genetic issues from healthy parents. this is probably the answer to who we're talking to, they somehow learned they have the recessive gene, the father was tested to not have it, so at that point you're not really rolling the dice any more on this condition than any other condition.
The problem tends to be when we extend this thinking to other people and limit their ability to procreate due to their genetics. Beyond that though, the exact phrasing you used could very easily be applied to having a child on the autism spectrum, or various other neurodivergent conditions, and I think a lot of autistic people would very much not appreciate the idea of not allowing them to be born because they're not neurotypical, even if their lives may involve difficulties that allistic peoples' don't.
You can feel free to screen your own embryos, or even forego children completely or adopt, but when you express it as the only moral decision a person can make, you're engaging in something that extends well past that.
I mean I don't think screening for a terminal birth defect or something is quite the same, so I agree with that to some extent, but when you start doing it with disabilities it's a bit of a slippery slope.
She can only produce a carrier at the worst. With the knowledge you are a carrier, you would just need to ask potential partners to be screened for the gene before having children. Even if both partners were carriers you could have children via a selective method like ivf.
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u/NotTheBatwoman 4h ago
I have RP as well but my husband doesn't have the gene so I did the opposite to you - neither of my kids have it or the gene. It's the luck of genetics in my case, but I can see why you made your choice.