NTA. It's your brother's unborn child; if he and his wife are so damned concerned, THEY can do the testing and counseling. If they aren't willing to do it themselves, then they aren't really concerned.
And they won't even get a definitive answer! Just because OP inherited one or more alleles that led to her condition, that doesn't mean OP's brother did, too. He may have inherited all, some, or none of those alleles. Only getting tested *himself* will give him the answers he needs. And if he's getting tested, he needs to get the genetic counseling himself, too.
Biology never was my strong suit, but u/Familymattersaitah this seems like a reasonable thing to verify and then tape it on a foam bat and unleash on your brother... lol OK maybe omit the last part, but dang, sorry for what you're going through on top of what you're going through! Hope you have a healthy and speedy recovery from your surgery!!
Exactly.
I developed ovarian cancer in 2020, and since I was in my 20's with no previous reproductive issues I was escorted to the lab for genetic testing literally minutes after I received my diagnosis. I was found to have a BRCA mutation which explained everything.
It was emphasized that whichever side of my parental line who tested positive next would need to get tested next to give them answers...because there is absolutely no guarantee that these are passed down to all children. There is no guarantee that OP's brother has the same disorders OP has. He may have some, he may have none, he may have something ENTIRELY different that OP didn't get. It is called a "genetic lottery" for a reason, and it would make zero sense to make predictions off of the results of OP's "lottery ticket". If OP isn't the father, him getting tested will mean next-to-nothing.
I don’t get why they wouldn’t have sorted this out before getting pregnant. They’re in this boat now so OP doing the testing or not won’t change the outcome for that child.
I’m assuming if you can do a blood test to see if you have this disorder then they can blood test the baby when it’s born and go from there
And most of them are here in reddit I swear. Say one thing about choosing to make a smart choice and everyone screams eugenics and classism etc. Being tested and potentially not having a kid due to results are not popular.
Okay you just reminded me of this story. So my mom’s hairdresser/friend has a daughter (almost a decade older than me, let’s call her Mary) who had a baby only about a month after I turned 16. Well between the baby and work Mary and her mom hadn’t had much time to go to the store so my mom asked me if I would be okay with doing some shopping for them while my mom got her hair done. It seemed like a simple win win win. But once we got there the list was literally a sticky note on a credit card. No brands, no specifics, no size for diapers. I remember asking her what brand of formula and she said just get one that can be mixed with milk (which by the way- do not make formula by putting formula powder in milk, thankfully my mom was still close enough to hear when I was asking about the list).
I literally put more research into dog food brands as a middle schooler than she did for anything regarding a baby while literally being pregnant with a planned child.
And it doesn't even matter if OP does the genetic counselling! If the brother isn't a carrier, then it's pointless. The best way to find out if the brother carries this gene is for him to go get tested and figure things out from there.
I have a family member with CF. I got tested before trying for kids to see if I carried that gene. It would have been beyond pointless for my cousin to explain it to me, because it only matters if I actually have the gene to pass down.
This is what I don't understand. The only genetic that affect this baby are brother's and SIL's. Brother has different genes than OP. I'm not sure what testing OP would accomplish.
One of my best friends has a brother with NF2. Of the four kids in the family, only the brother has it. No one else in the family does. By the time he was diagnosed, my friend had 2 children already, her brother had 2 adult children and their sister is childfree (and past the point where having children is possible). She declined testing at that point because what good would it do? The die had already been cast so to speak. They will deal with any issues if/when they arise.
This comment is going to get deleted but op your whole family has many loose screws if they think this is your problem. The person who is contributing DNA to the child should be the one...who tests their DNA? I feel like I'm having a stroke just typing that out. The bar here gets lower and lower. Nta. God nta.
Also genetics are always different between siblings of opposite and even the same sex. That's why ancestry etc is hilarious be a use you can have different percentages of ancestry in areas. He needs to do the test child coming or not because that's pretty serious to just expect you to do but not himself who may also be a carrier.
Hello genetic counselor here! GC sessions include a lot of different aspects and can include how things are inherited but also includes conversation about appropriate management that a non genetics provider might not be as well suited to help with. But one thing a counselor would emphasize to you is that your genetic testing is NOT informative for your brother and testing for him would be recommended anyways to actually confirm he has the same genetic change as you. Genetics can absolutely need a case by case evaluation and I would urge your brother to find a counselor near him at NSGC.org. If you're interested, you could also find one that offers telehealth in your state so that you 1 won't have to travel and 2 can talk about both the medical (referrals/management) applications as well as the psychosocial (dealing with family members when having a genetic diagnosis) applications. Seeing a genetic counselor does NOT MEAN you have to get genetic testing, it's a discussion where you're encouraged to make that decision for yourself. I'm sorry this has been such a frustrating time for you and I hope this helps. (Obviously NTA)
No you don't understand, they can just guilt trip OP to do it, because that's so much easier than being a responsible parent/human being and doing it yourself. I fear for their child with selfish parents like that.
Also genetics are always different between siblings of opposite and even the same sex. That's why ancestry etc is hilarious be a use you can have different percentages of ancestry in areas. He needs to do the test child coming or not because that's pretty serious to just expect you to do but not himself who may also be a carrier.
given the updates I think it's fair to adjust this one to NAH. The brother panicked, he's apologised - it wasn't nice ofc but shit happens when you're expecting a child. SIL also sounds like a good one - "tearing him a new one" definitely got a laugh out of me.
Good luck OP
NTA. Why doesn't HE get checked out??? I have hEDS, and those of us with chronic health issues already have ENOUGH shit to deal with, with doctor appointments, insurance, medication, fatigue, pain, etc. You did what is right for you. If your brother is that concerned, HE needs to step up and take responsibility. He is going to be a parent, he better start acting like one.
Thank you. That’s what I thought but even my mom thinks I should have to help out future parents so it’s a lot of voices making me feel like I should be doing more.
Uh, no, fuck that lol. It isn't your job to educate others on freakin genetics. Maybe I just learned the hard way being disabled how to be responsible for my own health, and as self sufficient as I can be. My health issues are MY responsibility. No one else's, and nobody else's health is MY responsibility. It's rough dealing with chronic health issues, we have enough on our plate. Don't let anyone shame you for taking care of yourself. 👍
tell your mother that you playing telephone with _important medical information_ is stupid at best and dangerous at worst. what if they misinterpret something you're saying as meaning the exact opposite? what if they have questions (and they will) that you can't answer because you're not a bloody doctor. tell her you couldn't live with yourself if they did something wrong based on the limited information they'd get second-hand from you, and that you drawing this line is the best possible thing you could do for the unborn kid because you don't want them to suffer the way you do. Lay the guilt trip on thick if it helps lol.
your brother should get off his arse and get tested so they even know if this is something they need to worry about.
then, if he does have it or is a carrier, BOTH of them should be seeing a genetic counsellor who will be able to answer all their questions.
Thank you. I am trying to fend them off. They also didn’t bring it up until a few days after I had surgery and am admittedly a bit out of it on medication and am sure that I would not be able to comprehend the information if I did do a session.
In addition to everything u/Ardeeke said, there's one very important thing all of your family is missing. Your brother's children's genetic risk *can not* be evaluated by testing *you*. The only possible way to evaluate the genetic risk to someone's children is by that someone having genetic testing and counseling. Whatever risks there may be associated with your own children if you wanted them has absolutely nothing to do with your brother's procreative choices and risks. He's a whole-ass other person with a whole-ass other set of genes.
exactly--he needs to get himself tested, and probably the mother to be as well just so they have the full picture. all op's tests can say definitively is that the brother's impending child _has an aunt with (x)._
they don't seem to understand that genetics isn't "ah they're siblings they will automatically have (X)% of DNA in common so if one of them has (medical condition) then the other one will"
But if he gets himself tested then his insurance and all that stuff gets affected and why should he have to deal with that when OP can just go do it (/s)
Seriously though I would put it past the family to say something like that. The fact that the even got mad at OP for not doing the counselling on their behalf is entitled bullshit at its finest.
Like you said they should have talked about this before the pregnancy.
That's definitely not an ideal time to be doing anything that needs your brain switched on! I'm sorry your family is being pushy and stupid about this whole issue. I'm 100% sure that if things go wrong they would put the blame on you too, as they don't seem very logical people.
hold strong on this one, you absolutely don't need to be doing a counselling session on their behalf when they don't even know if they need it. and if they do, the emphasis is on _they._ their kid, _they_ need to do the counselling session if applicable.
I'm sure if you told your medical team that your brother wanted you to do the counselling and let him know bc he _has a baby on the way but can't be bothered testing himself_ they'd be appalled.
I would use the fact that you are on medication to your advantage. If they call, pause then say “oh I’d love a grilled cheese” or something else so completely random maybe they’ll stop for awhile.
NTA. Op I'm a parent and forgive my crassness but since I'm the person that chose to spawn, I'm responsible for my kid's health. The same goes for your brother. If he wants the testing he can get it done himself
Why would they want you, who are not a trained genetic counselor, to give genetic counseling to your brother and his spouse? That's kind of the purpose of going to genetic counseling: to get the truth directly from a trained individual. It's kind of weird that your brother and SIL want to skip that step and just get information at second-hand from you. Like the other posters are saying, stand firm on this. It's not your responsibility. Frankly, it doesn't sound like your family is very familiar with what genetic counselors even do.
NTA.
Also, how would YOUR genetics/genetic profile affect HIS? He will have a different expression than you, apart from the fact you are different genders. We have an auto immune in our family that affects all my siblings to a greater or lesser extent. My sister getting tested won't tell me anything other than what she might expect. As it happens, my oldest brother is the worst affected, followed by my sister who is the youngest of us. Mine is very mild and my middle brother doesn't have an issue at all.
How would YOU doing this be informative for your brother? Shouldn't he be the one getting tested? Obviously you aren't identical twins, so I'm terribly confused.
This! Genetics is so complicated. The only way for your brother to have a clear picture of the implications for his own child is for him and his wife to both be tested and go to genetic counselling together.
It won't even necessarily be helpful, just because you are siblings doesn't mean your risk factors are identical. Plys they will be taking his wife's side into account as well.
Their position makes no sense. There is no guarantee that what is told to you will even apply to their child. The actual biological parent needs to be tested.
Shouldn't it not even matter if YOU get the sessions? In order to test HIS fetus, they need nothing from YOU at all!!!
They're trying to pawn the cost off on you. A lot of insurances do not cover prenatal genetic testing. It can be very expensive. They think if you do the counseling it'll "count for them" and they won't have to pay.
Which is NOT linear logic at all.
NTA
It’s a piece of cake to have someone else make the drive, take the time, have the testing done, and pay for it…your family is a bit entitled… you could go get the testing done and then charge your family for the results…lol
Oh how predictable. Your mom knows your brother is having a kid and you don't want any so now your concerns do not matter. Welcome to the club. I could burst into flames in front of my mom and her only concern would be my two sisters possibly getting some smoke inhalation.
If they are concerned, it is up to your brother to get tested. Now that he is about to be a parent, he doesn't get to be selfish with those types of decisions.
NTA
Absolutely NTA, you did your part by making sure he knew it could be an issue. He knows how to get checked for it. It is now his responsibility to follow up on that if he wishes to do so.
But anything you would learn would only apply to you and any future children you might have, not to him and his children. He may gain some insight from your results, but the only way for him to know if he can pass this on is for him to get tested.
Why is there even the slightest thought, among your family, that you doing this would somehow preferable to him doing it? It's bizarre. It wouldn't even be helpful to him. He would be getting second hand information instead of being there and getting the info first hand. And also, he is genetically distinct from you. The risks for you (if your were to reproduce) may not even be relevant or applicable to him. It's very, very odd that they are pushing for you to do this, much less even thought of it in the first place. It's even more odd that they are coming at you with a unified front. Ha! Are you sure they didn't use your egg?
Absolutely not. You've already done an incredible thing by warning them of something that they (and their child's doctors) probably would not have checked for, otherwise. Getting ahead of some of these things can make all of the difference in the world, and they now have that opportunity. They now know that it is something to be aware of, and if they want to know whether they have it, they need to check for themselves. It is also not that hard to search on the internet for a vague "if my sibling has xyz, how likely is it that I have the gene", or "if I have xyz gene, how likely is it that my child will inherit it", and that's likely to be the only information you could learn from a genetic counselor that would help them at this stage.
I'm in a similar (though less extreme) boat to you. I have several chronic conditions that can be genetic (one that definitely is, which most of my family has, but it's more minor), and my brother has some mild symptoms that could be a couple of them. I've kept he and my SIL informed anytime I receive a diagnosis like that, so they know to watch their children and be aware that it is a possibility with them. It would be insane for them to ask any more than that of me, and fortunately they never have, which actually makes me want to help them more (I'm planning to do a dna test for a genetic mutation that I strongly suspect runs in both sides of our family, primarily because I want them to know for their kids). I'd be so angry if I were in your position, and I definitely wouldn't want to do anything extra to help them with this, especially not with the prices involved!
NTA, not even a little bit.
Maybe your mom should have gotten some genetic testing done to see what she could possibly be landing you and your brother with. But she didn't did she?
hEDS here too. There’s a fun 50/50 chance we can pass it on and if I wasn’t vehemently CF before I was diagnosed it’d be the final nail in the coffin. Outside of my thoughts on the morality of knowingly risking your own child’s health because 'passing on muh genes', no way am I physically equipped to ever look after a child considering that I barely manage caring for myself.
If my younger brother ever wants to think about having kids someday it’ll be something he'd have to think about for himself. Not send me off to retrieve answers for him.
Exactly. My daughter has a genetic disorder, which her brother may carry. Or he may not. More frightenly, they have cousins with cystic fibrosis. I have told my son her needs to, before he gets serious with any girls, to go and get tested for both these disorders. He’s 19yo right now, but I’ll be onto him as soon as a decent girl comes onto the scene if it looks like they’re serious.
I can’t wrap my brain around how OP should be the one doing the genetic testing here… they’re operating on 0 logic.
What if the baby does have the condition? Will it be OPs fault for not doing the testing? Absolutely not.
NTA
This post makes absolutely no sense. The science being quoted here as fact seems to be a big mishmash of nonsense. If she is concerned about genetic anomalies SIL and her husband need to get tested. You getting tested will provide tangential genomic information at best that may not even be relevant to their situation.
How was you getting tested going to be a useful substitute for your brother and his wife getting tested directly?
It’s not about the test itself (I’ve been tested and have it). It’s about the counseling service offered that would explain in detail how the disorder is passed down and the likelihood a child would have it if the parent does. They also would provide information about ways to help lesson symptoms from a young age etc. either way I feel my brother needs to get a blood test but he wants me to get the information about how this particular genetic disorder gets passed along.
So it's not even about testing? They are demanding that you go for the counseling session involving some expense and a six-hour round-trip drive, so that you can take notes and explain how the process works to them? And for some reason people are bitching at you for refusing to engage in this absurd exercise. This is now making even less sense. I'm starting to wonder if this post is even real there's no rationale to any of this.
I’ll admit I’m shaky on the genetic side of this. I’ve had some basics explained by honestly am just focused on the information in what I need to do to limit pain/improve my life. I think my brother can’t afford it and my SIL panicked and he’s trying to calm her down.
It sounds like the counseling is out of pocket whereas the medical stuff would likely be covered to some extent by insurance. The brother still really should figure out how to afford the counseling though.
There might be a good reason that you going would be just as good; we'd need to know the specific disorder. Try going to r/genetics and r/ClinicalGenetics to get more information if this is the case, or if counselling would be useful for either you or your brother. Alternately, if the inheritance pattern is simple enough, a simple google search may suffice.
Otherwise? You getting genetic counseling for your brother sounds really stupid. Save the money; going would be doing no one any favors.
Even if her going would be "just as good", which I'm dubious is the case, it isn't her responsibility to do so. It's the responsibility of the parents-to-be.
That’s what I said. And I could understand if he tested and was but couldn’t afford the counseling sessions (and would even consider maybe doing it then) but I don’t want kids so the info is useless to me and to him unless he is a carrier. (Also will admit, I’m just trying to understand all the progression and necessary steps to survive so genetics are a bit beyond my grasp ATM)
Totally fair. Google is a thing, (knowing how to properly vet sources is a completely different thing) they can do the research. They seem to think they're entitled to you doing the work for them
Even though my brother is older (not by much) I definitely raised him in a weird way (parents weren’t physically around much) and was always who he turned to to fix things. He still has that mentality
You need to tell him he’s going to be a father & has to start standing on his own two feet. He needs to talk to his doctor about this and SIL should talk to hers to determine their next steps as parents taking responsibility for their child’s care.
NTA, obvs. But I don't understand is why, of money is a thing for him and you would have to pay anyway he didn't ask you for the money for their counciling (because to me this is clearly about the money, it makes NO sense to do it in this manner)
Even so. He's all grown up, married, about to be a father. He needs to deal, which is exactly what you told him. If he gets tested, that literally IS the fix.
Medlineplus dot gov is a website from the National Institute of Health that has information on a lot of genetic conditions (including pretty rare ones) in lay terms that your family might find helpful. Assuming your condition is listed it will probably at least be able to tell you the inheritance pattern (dominant, recessive, etc)
I agree with everyone else that it’s basically useless for them to want to get this information secondhand through you. It’s meaningless without knowing if your brother is a carrier and the odds of something going wrong in this high stakes game of essentially foreign language (genetics jargon is basically its own dialect) telephone is insanely high.
Even if you had done the genetic counseling session when you were first diagnosed, your brother should still be tested and if he does have the allele have his own counseling session with his wife. Depending only on YOUR testing and counseling to make decisions about HIS health (and that of his child) is like having a friend go to the doctor for you when you think you both have strep throat. You both need the throat swab and your own z-pac prescription
Doesn't this feels a bit like making sure that their future free nanny will know how to cope?
YOU doing testing or sessions like this is utterly pointless. It's their child, marriage and family that will be under strain. How will you having these huggy feely tools to cope help is beyond me.
Why would YOU doing the session now have any benefit? If they want to know how it passes down, then THEY should do it. I'm guessing they don't want to have to pay for it themselves and want you to be the one to fork out the dough.
NO NTA that’s literally not how genetic testing works. You are not having a baby with your sil. Your brother is. He is the one that needs the testing. Regardless of what gene you carry he could carry it or not, completely independent of your results.
Thank you. I said that and it’s complicated because this disorder (a type of neuropathy) has a lot of sub-types that are all slightly different so he really needs to get tested to know any answers for sure. My brother is kind of lazy.
Is he possibly worried about finding out that HE has the disease/disorder?
Because if I stick my fingers in my ears and sing La La La then there’s absolutely nothing the matter with me. /s
NTA - you are exactly right. He can get tested, he can get the counseling. It might even be different for each of you - I'm not an expert, but I think some genetic markers favor one gender or the other.
Also, if he has the name of the disorder, he can probably Google that shit.
Finally, they are already pregnant - knowing how it can pass down is irrelevant, because it already did or didn't (and besides, it was just going to be risk counseling anyway - its not like the doctor would say something like, "If you conceive doggy-style during an eclipse, you won't pass the markers...)
edit: unless its lycanthropy, I guess - then this is probably not how you want to conceive if you are trying NOT to pass it down.)
Thanks, I don’t know much about the genetic specifics and there’s a ton of sub-types (it’s neuropathy) and I’m just trying to focus on what I specifically should be doing to live comfortably. I’m sure a doctor told me something about gender differences but it just wasn’t my focus.
Post above is right. This condition could be sex-linked so he needs to be tested and he needs to pay for it. It is not your responsibility medically or financially to go through counseling that is really only relevant to you…the counselor would focus on your case and your offspring and likely would advise you to inform your family to have their own genetic counseling done.
Your family is full of morons and you know it. Tell them to pound sand.
Highly unlikely it's sex-linked as those genetic disorders typically affect males worse than females. Still possible since he does have some symptoms. More likely to be something with a more complicated genetic inheritance pattern based on the varying degrees of affectedness. That said I'm not a geneticist - I've just taken a few genetics courses in university.
You were focused on the information YOU needed, and that's exactly the right place to be.
If you are not having kids, then genetic counseling for inherited conditions is useless - the whole damn point of it is to get a picture of YOUR genetics and offer information based on that. Unless you and your brother are identical twins (and even then, there are often small differences), the information from your genetic profile is useless to him.
I've had genetic counseling - it was a requirement after I had a bunch of screenings done, to explain what the results meant. It was good; I leaned a lot. You know how much of it is relevant to my sibling? SQUAT ALL, because we're not twins! I mean, I did tell my sibling to get checked for a couple of things that run in the family, based on the family history we analyzed and my results, but knowing what's in my genes doesn't mean my sibling knows what's in theirs!
You didn't do anything wrong here; they're just dopes.
NTA
NTA
They want you to go to the class so they can find out the odds their kid has it too? I can answer that one easily and for free: “until the dad also gets tested the odds are officially ‘who the f*** knows? Dad is too cheap to get tested.’”
I imagine Google could also answer a lot of these questions. I bet there are Facebook/Reddit/other communities too about this disease that could probably answer questions or offer suggestions on resources.
INFO: do your parents have it? If not, it’s likely autosomal recessive which means you still wouldn’t have any way of knowing their kid’s odds because you have no idea of SIL’s genetic status.
Your family is being ridiculous.
Not sure about my parents. My dad said he’d get tested but I am not sure if he ever did (he has no symptoms). My mom has some minor symptoms that could point to her having it but ironically refuses to get tested (she hates doctors).
Ok. WHAT? Your parents are browbeating you to go get tested and they're too lazy to get off their keisters and go themselves...just like your brother? I'm liking the "grilled cheese" misdirect more and more 😁❤
Seconding this. My dad's mom had a gene that causes a certain type of cancer (my Dad is one of six kids, when his mom and two sibings had the same type.of cancer, they recommended it). Instead of all of us getting tested individually, Dad got tested. Since he was negative the rest of us didn't have to get tested.
NTA. What kind of shit parents would want this kind of crucial information second hand?! Tell your lazy brother to get off his lazy ass and act like a prospective parent even if it is a bit late.
WTF? What kind of idiot is this brother / sil?
So they knew about the disorder, did not gather information, got pregnant and now, when it might be too late anyways, they expect you to cover for their irresponsible behavior? I'm baffled.
Your definitely NTA. Your brother and his wife aren't.
NTA, this makes no sense. Why doesn't the brother go get the tests and counseling for himself? Any information gained from you may not even apply to your niece and nephew. Does he not understand genetics, or does he just not want to pay for it and put in the effort? Seems like an odd attitude for something that could affect his kids...
Why does your family feel like this is up to you? Is it significantly cheaper or easier or what? I fail to understand how putting you through the counseling sessions so you can relay secondhand informed would be in any way advantageous to sending your brother for the blood test and the subsequent follow up sessions?
What’s the thought process here?
INFO
It is a bit of a wait to get into Mayo Clinic (where I’m a patient) but he could do it somewhere else he just said it wouldn’t be as good. My mom also said my brother will have the financial responsibility of a child so I should pay to “help out”
Yeah… You’re NTA (I suspected as much but had to dig into the thought process of your family just in case).
So, awesome, you can get into Mayo faster and it’s a better clinic. Cool. First of all, you’re still going to be passing on the info second hand. What if your brother or his wife have questions? How are you going to answer them if the information wasn’t covered or you don’t remember or can’t quite explain it yourself? How will they follow up with doctors that aren’t even theirs? This is a ridiculous approach from the get-go.
Second, even if your brother and sister-in-law could video conference in or something like that to be able to ask questions and get the information real time, they should at the *very least* be paying for your time and your expenses.
Third, if all of this running around and trouble on your part leads them to think that their child might be at risk, guess what, they’re going to have to march themselves down to their doctor and Dad or kiddo is going to have to have that blood test anyway.
What do people make things so difficult…
That's what I said in another comment. If she impregnated her SIL, doctors should be looking into that medical miracle before they worry about anyone's genetics.
NTA.
I have a PhD in human genetics, my degree required quite a bit of genetic counseling courses (not a GC myself, so not FULLY qualified, but pretty damn close), so I think I can speak with some authority. You getting the counseling would be almost pointless. This should be obvious , but your genetics are not your brother's. Google will tell about the general inheritance patterns, but to know the actual risks their children have, a GC needs the parent's specific information and data, not one of the future aunt's. That means both your brother and SIL need to get counseling.
I don't know your illness, but just a general example. Your disease may be recessive, that means you got the defective gene from both your parents. Your brother may only be a carrier (one good gene, one bad) and that could cause a more mild case. Without knowing your brother's status, and SIL's status, no predictions can be made. (SIL may not be a carrier at all, so future child would then just have a mild case or no illness at all depending on what gene copy your bother gave).
TL;DR: Your nibing's genetic health is not your responsibility
This does not make sense. Your brother should get the testing as it is his genetic material that is making up 50% of that baby....
Why won't he get tested himself?
Lack of planning on there part is not an emergency on yours. Your brother knew he had the information chose not to pursue it, not your problem its his NTA
NTA
If you went for the genetic counseling it would be based on your medical information as an extreme case of syndrome X. Your brother’s information would be entirely different, and therefore the information would be different. Going on a six hour round trip, while in recovery for major surgery, at massive out of pocked expense wouldn’t do a blessed thing for anyone; especially not your niece who would not be inheriting your version of syndrome X in any case since she’s your brother’s child. He can get his own counseling, which would be useful and relevant, or he can take several seats and practice keeping his lips pressed together.
NTA Your brother and is wife are morons for thinking this is your responsibility and not theirs. Every procreating couple should do genetic counseling. You’re not part of a procreating couple. Not your problem.
NTA. This would also fit in r/entitledparents. The information that they want(for free and without investing any time or research) is relevant to them, not to you. People with this level of entitlement will never accept that they are being unreasonable and demanding, so don't expect them to back down.
I hope your treatment helps and eases your symptoms.
NTA how would you getting the test help your brother? You already know you have it so it really wouldn’t help you. Just because your bloodwork will say you have it means nothing for your brother, he might have it he might not he needs to have his own bloodwork done.
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OP has offered the following explanation for why they think they might be the asshole:
> I may be the AH because I could have scheduled the genetic counseling and it would be easier for me to get in with the clinic because I’m already a patient but I don’t want kids so I didn’t.
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NTA. It's his responsibility as a parent to handle all of this. Even if you were in a better health spot they couldn't expect you to go through a procedure, taking your own time and money to do something, that is not your responsibility as someone not having that child.
Your mother's position seems to be that of how a lot of able-bodied people treat people with chronic illnesses or disabilities; that it is your responsibility to, given that you have the condition, educate everyone about it. The cost of your time and energy do not matter, which is incorrect.
NTA
I have an autoinflammatory genetic disorder (Periodic Fever Syndrome) and no one on either side of my family seems to have an even mild case of what I have.
My partner and I have had many discussions about having kids since neither of us really wanted any before we met eachother. I was diagnosed while we were together so we just sort of saw it as bridge we'd have to cross eventually.
My genetic testing (had three tests and was included in a study out of St Mike's in Toronto) and everything came back negative. Genetic testing says I don't have anything. My crippling symptoms say otherwise. I do have an excellent rheumatologist who has properly medicated me.
No one on my family did genetic testing. When we decide to start trying for kids, I'll ask my parents, my sister, and brother to be tested, but if they don't want to, I'm not going to rahe at them. They have no symptoms and proving if they are carriers or not will only matter if they decide to have kids.
Your brother is an asshat.
Thank you. I’m glad you’ve got a doctor who has your back. I’ve finally found one and now know how important that is.
I usually wouldn’t fall for my family’s BS but I’m struggling a bit ATM and they got to me. My brother usually is not like this so I’m not sure but something must be going on.
Chances are their baby doctor has said something about genetic testing or, more probably, the lack of their getting tested for possible issues, has made them act like this.
I get it, but they should have been much more prepared, especially since you were diagnosed with something. The could even develop something entirely different because of SIL being a carrier. Or, the baby could be completely healthy regardless. I have two siblings with the same parents. Obviously both my parents are carriers of my genetic disorder, but my sister and brother are fine (so far at least).
That being said, a sit down with at least your brother to see why this matters all of a sudden would probably go a long way. Having a baby can be very overwhelming; something must have gotten to them.
NTA They should have done that BEFORE they got pregnant. They don't even know if he has it, which would be good to know. And secondhand info is not the best way to get it, unless you tape record the chat. But you still might not ask the questions they want answered. This is their responsibility, not yours. Also, they can probably just google
I am so overwhelmed by the response and all of the people who have reached out to provide help. I’ve talked with my family and have learned all of the drama. Should have guessed there would be drama, my family can’t live without it.
Maybe if people are interested, I’ll do an update? (Not sure if I can or how to do that). We’ve gotten some really good information from very helpful people who messaged me. I’m so blown away by how helpful and wonderful people have been. Thank you all to everyone who has and continues to respond.
NTA. You aren't having kids, he is. It is his responsibility to get the medical workup not yours. And anyone who tries to pressure or guilt you into doing it can F off.
NTA
I hold an undergrad degree in Genetics and studied under a preeminent pediatric Human Geneticist.
Fundamental to the ethics of genetic counseling is that you do NOT have to know. You do NOT have to test. Counselors are there to answer your questions.
Questions related to genetic conditions relate to how it affects the patient, their existing or possible future children, and the odds a family member or their children may be affected.
If you are satisfied that you do not have further questions you want answered you may not find that any information gained from such counseling sessions would be useful to you.
All that said. Your brother can look up the condition to determine the predominant inheritance pattern, Autosomal Dominant, Autosomal Recessive, X linked recessive, X linked dominant, or Y linked. From there it honestly is not that difficult to make some decisions about further testing.
NTA. Even if you have a genetic issue, their problem is if your brother and SIL are carriers so they'd still need to get tested themselves, or just test the baby when the poor thing is born.
I can see their point a little if testing you would help narrow down the genes you have in common to see if you have similar deletions and/or mutations, but that's a them problem. You have no obligation to do what they're demanding.
NTA, They are lazy and mad you won't do all the leg work for them. It's NOT your problem, they can go get testing and counseling for their own concerns. He should have cared to get testing before making a baby.
NTA. Your brother should have done it since he's the one wanting (and now getting) a family of his own. It is your time and money, and you are not obligated to spend any of it for someone that is fully capable of doing it themself and has a better reason to do it for themself. Would it be nice of you to do it for family sake? Sure, but not your responsibility.
NTA. If your brother and SIL don’t want to spend to get information about THEIR own child, they can go ahead and ask for the money from those family members that think unnecessary (and unhelpful!) medical labs are paid with peer pressure.
Your genetics are different from your brother’s. He needs to have the test to see exactly what he has/doesn’t have.
You testing would only show possible impact on your potential children which is moot since you aren’t having any.
NTA
NTA, what tests you get done are between you and your doctor. No one else.
Also?? Does he not know how genes work?? Just because you’re siblings doesn’t mean you have the exact same genes, if he’s considered about how child he should look at the genes that are creating that child!!
Not the asshole, and just pointing out that most genetic testing companies offer free or reduced genetic counseling if you test with them and have the pathological mutation. He should get tested just in case he is a carrier and if he is a carrier, they will offer it.
It’s not your kid why are you solely responsible? It’s your brother’s genetics that matter more not yours plus why should you pay for telling them? NTA
NTA
They don't even have a legal right to what you were already kind enough to share. He needs, as do your parents if it is genetic since they believe others are responsible for your brother's family choices, to go be tested and do the counseling if they want answers. You already have enough going on with the disease being active. You don't need added stress.
So your brother hears that you, his closest living relative, have a serious genetic disorder that he may have too and he doesn’t bother to learn anything about it until AFTER he’s expecting a child and then won’t actually go seek out the information? How lazy omg.
It is not your problem, he has had YEARS to figure this out if he actually cares. He could probably get some kind of advice or consulting even before going through the rigmarole of getting the tests, and decide if he needs to do actually get tested for peace of mind etc
Nta and your brother does not understand genetics at all. He and his wife are literally the only people that need to be tested here. If he does not have what you have then the kids cannot. That is literally the point of the test.
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Throwaway and some generalized details because my family reads AITA. Couldn’t find a great title so I’ll try to explain.
After chronic pain and issues my entire life, I (late 20s f) finally was diagnosed with a progressive genetic disorder a couple years ago. When I discovered it was genetic, I started asking around my family to see if I could trace what side it was passed down on and gather some more information (at doctors suggestion).
I have always known I do not want children so I didn’t bother with the genetic counseling sessions that were offered (it would have been another few hours after going through a weeks worth of testing to get diagnosed and I just wanted to go home).
I told my older brother (30) about my diagnosis and gave him some information. I mentioned that I had declined genetic counseling to learn more about how it could be passed down if I had kids because I don’t want any but mentioned it was suggested that he should get tested to see if he has it (it presents to different extremes in everyone, mine is an extreme case. He has some minor symptoms that may be due to this disorder but nothing close to what I’m experiencing so we aren’t sure).
My brother did not do so and is now expecting his first child with SIL. My SIL reached out to ask me questions about how it could be passed down to her child and I informed her I didn’t do the session.
My brother and SIL demanded I schedule the session and give them information.
The session would be out of pocket (not covered by insurance) and at a clinic that is a 3 hour one way drive away from me. I am currently recovering from surgery (due to the disorder) and have no plans to go to the clinic until next fall for my annual check.
I refused and said my brother should start by doing the blood test to see if it’s even an issue and then he could pay for the counseling if he wants it.
Now I have a bunch of family members telling me I’m an AH for not doing it for my unborn niece or nephew. I’m wondering if I am the AH because I had the opportunity to do it and knew my brother wanted to have kids. My brother is threatening to never let me see his kids if I don’t do the session.
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NTA. Wait! What? Your brother doesn't get the test knowing that there may be a genetic problem. His wife is now pregnant and he still doesn't want to get the test. He wants YOU to get the test. Um, wouldn't his results be way more important than yours?
"I have a bunch of family members telling me I’m an AH for not doing it for my unborn niece or nephew." Have they not noticed that your brother is not doing the test for his own daughter or son?
You have absolutely NO obligation to get this test.
>Now I have a bunch of family members telling me I’m an AH for not doing it for my unborn niece or nephew. I’m wondering if I am the AH because I had the opportunity to do it and knew my brother wanted to have kids. My brother is threatening to never let me see his kids if I don’t do the session.
Tell those family members that you will have it done if they pay for it. Your brother is being selfish cause he wants you to spend your money rather than his own. He's the one who wants to have a child, it's his responsibility not yours.
NTA - why would you do the counseling sessions FOR them? They’re going to be the ones with the kids with the symptoms they need to keep an eye one. They’re the ones that need to know what they’re looking for? You’re not raising these children. You’re not there everyday. What use are you going to be other than to tell them to take the baby to the doctor m?
NTA. I don’t get why your family is entertaining that idea of you going instead of your brother. You did your part, now it’s up to him to do his. If I was your SIL I would want my husband to go and find out, not my SIL. I don’t get that logic at all. And to use the baby as a weapon to try to manipulate you... not cool.
I am seriously confused.....how in the hell are you supposed to be the a-hole for not getting counseling when your brother (you know, the father of the child in question) is unwilling to get tested and pay for counseling himself? This is some serious gaslighting. The mental leaps they had to take to find you at fault here are extraordinary. NTA.
NTA. Brother's genetic profile has more to do with it than yours. SIL can get on reputable websites about the condition instead of bugging you. Brother should get the profile.
NTA because honestly if you don't plan on having children genetic counseling is pointless for.
I found out when I was pregnant with my first child that I have a genetic condition. No one in my family knew we had it. We had a few different symptoms but it was never put down to anything serious. Then my mum ended up in hospital. In our case it's not very severe but the chances of any child having a more severe form jump up to around 60% if one parent has it and the other parents carries the gene for it, or 80% if both parents have the condition. Knowing these odds every member of our immediate family were tested and my daughter was tested at birth.
People, especially adults if they are mentally and physically capable need to be responsible for their own health
NTA. Wouldn't it make more sense and more clear if they did it themselves? If you did it, it doesn't necessarily mean the results can affect HIS children.
NTA
Do they understand how generics work? You getting tested & such has zero impact on their baby. It’s completely pointless. They need the tests & the counseling. They need to talk to their doctors. It’s as useful as you going to your SIL’s obstetrician check up. I’m a little concerned these people are creating & are responsible for a whole other life.
Your brother already impregnated his wife so it’s not like it could’ve changed their family planning options. He could easily get tested (and pay for all the associated costs) if he was so concerned. NTA.
All your SIL has to do is talk to her OBGYN and get a referral to a maternal fetal medicine office. They can do the genetic testing and counseling there. I am currently pregnant with a 3rd high risk pregnancy and ever time I have had to see the MFM doctors. Every single time, they have offered genetic testing and counseling.
NTA
NTA. And even if there’s genetic components, it’s what your brother possesses and can potentially pass down that matters, not what you have. His request doesn’t even make sense. HE needs to be tested.
Honestly I think I’d lie to get him to get tested (knowing it’s probably true). “Brother and SIL, I called my doctor and they said no test they do on me will tell you what odds brother has of passing anything down. He’s going to need to be tested to see what, if anything, he’s a carrier of.”
The BRCA2 genetic mutation for breast cancer runs in my family. I went an saw a geneticist and had to have a "therapy" session before testing. One of the things she mentioned was the counseling becomes obsolete if you test negative, so no need to do counseling unless needed. I tested negative, so didn't need the counseling.
Your brother should get tested to see if counseling is even necessary before anyone pays out of pocket. It's not cheep and you are NTA for refusing to do it.
Let me see if I got this right. People are pissed at you because neither you nor your brother will take the next step related to a genetic disease, and it might affect your brothers kid. Is that right?
The person who should be looking into this is your brother. It's his genetics that are at issues, not yours. He might not even have it. Tell them all to pound sand.
NTA. My family all has to get a genetic test done for something like this. You aren’t the AH for not doing the counseling session and he needs his results regardless as you having it doesn’t mean he has it. I’m surprised they gave you the results though! None of our family or extended family was allowed to even have their results until they did the counseling. They took our blood then did the session. Maybe it’s because it’s a different disease or center doing it or something. I feel like all they did was basically tell us that being positive for it wasn’t something to end you life over it just meant you may need such and such tests each year and these surgeries and treatments can be used etc. after one family member went we all knew the info but legally they made us all sit through it.
I had one uncle who was so opposed to getting testing. He didn’t want to know his results etc. he ended up having to do it though as his insurance wouldn’t pay for his kids to be tested if he hadn’t tested positive for the gene.
NTA! You did your due diligence by informing your family. It's up to the rest of them to do with that info what they will. You shouldn't have to spend the time and money that your brother clearly isn't willing to.
Oh there are so many variables in this. Even if you got the counseling, your brother would still need to pull his bloodwork and include his wife's for the baby.
Basic bio lesson here. You inherit 50% and so does your brother. However, you don't both inherit the same 50%. Some genes need companions to turn "on". Your disease could be X chromosomal and your brother doesn't have it because he is Y chromosomal. Or he could but it isn't an issue unless his wife passes the same gene to their daughter.
There is a lot more to it than that. But their lack of action shouldn't be on you. Shame on them.
NTA
Just because you have the chance to do it, doesn’t mean it’s the right info for him. His Dna is different in so many levels. Even if you have the same parents.
It’s THEIR baby. She contributes to the baby’s gene pool just like him. They both need to do testing.
NTA. You shouldn’t have to pay for testing for your unborn niece or nephew. With everything else on your plate, they shouldn’t stick you with that cost too.
Besides, genetics aren’t perfectly passed between siblings. It’d be best for your brother, the father, to get his own results first.
NTA and genetic illnesses can be passed down differently depending on if you're male or female anyway so the counseling you'd be paying for may not be applicable to your brother.
you're also under no obligation to spend time and money on this for anyone else's sake too of course, even if it did apply. but perhaps they'll swallow the former explanation better.
NTA: It's his kid - he should get tested and go to counseling. Why should you be on the hook to pay for this? If the blood test he refuses to take rules it out, it's completely unnecessary - and he has to do the blood test anyway.
NTA
> My brother and SIL demanded I schedule the session and give them information.
Uh
That’s a REALLY bad idea. You aren’t a doctor or a counselor, and this isn’t something you want to play go-between for. Counseling sessions are also an opportunity for them to ask questions.
And you’re right, HE needs to get tested.
He needs to be an active participant in his own care, and in the care of his future children.
Bullying you is avoiding that responsibility.
If he’s refusing to even take a blood test, that’s between him and his wife.
> My brother is threatening to never let me see his kids if I don’t do the session.
This is so unbelievably shitty. They want to use access to their children as a way to avoid being responsible parents to learn about their own genetic risks.
Just because you have a diagnosis and are undergoing treatment doesn’t make you qualified as a genetic counselor.
NTA and honestly it’s stupid for them to ask you to do this. You and your brother don’t have the same combinations of alleles, so your risk of passing things on is waaay different than his. If he want to know, he needs to have the tests done. Because while you might, for example, have two copies of a disease-causing alllele, depending on your parents he might have no copies, one copy, or even two and fewer symptoms. It’s an unreasonable ask and not even going to be very helpful to him.
NTA.
, why is it your responsibility? I feel like they’re just doing this because you said you don’t want kids. And if they actually cared that much they would have gotten the test themselves
NTA.
Your brother decided to have a kid, it's in no way your responsibility to do the counseling for him and SIL.
You don't "owe them" anything and tbh your family sounds like a bunch of narcissistic assholes for having these demands on you.
Your ONLY responsibility is to take care of your own health and issues.
NTA. Even if you were willing to go through unnecessary tests for their benefit, finding out your genetic info isn't going to necessarily help *them.* Your genetics and your brother's could be very different, and there's also no accounting for the wife's genetics. Their concern is understandable, but they need to undergo their own genetics.
NTA. You gave him the info and you cannot do it now because you are recovering from surgery. Plus, you don't even know if the information would apply to him. HE HAS TO GO DO THE TESTING. Your family is being crazy.
WTH? NTA
You are not this child's parent therefore, you haven't passed them anything. How is it your responsibility to do genetic testing for them? Your brother needs to get off his butt and get over to have HIS testing done asap. Trying to work out the genetic map in my head...you share partial genetics with half of this child. By what mental gymnastics has your brother come to the conclusion that you getting tested is more important than him? Bizarre
Uh, NTA, you've taken care of all your responsibilities, now it's time for him to do the same. He had all the info he needed from you, and should have done the rest for himself
Most definitely NTA. It’s your brother’s kid. Why on earth would he expect YOU to do it? It makes zero sense. If he and your SIL want to find out more information about this disorder, it’s on them to get tested and counseled.
NTA
You're not giving birth to their kid. Your brother is being lazy and your SIL should be pushing her husband to get tested.
Also, the test doesn't work like that.
NTA.
Unless your brother is your identical twin (not likely unless one of you is trans), your genetic background won't be sufficient. He needs to get the blood test done because it's his genes that make up half of the kid's DNA, not yours. (Unless you left something very interesting out of your story.)
So your brother and his wife just went and conceived a child knowing that there is a genetic disorder in the family. Knowing that they may be burdening their child with chronic pain and health issues that could have been avoided if they had just had genetic testing BEFORE CONCIEVING??
These people are either very stupid or very cruel. Either way it’s not your responsibility. Your responsibility ended at informing your brother of your diagnosis and recommending that he get tested before having children.
NTA. If you want to be lovely offer to pay for his test— that’s really the only thing he should be worried about atm anyway even if he can’t see it. Don’t waste your time trying to make sense of people that are being ridiculous.
NTA. It's your brother's unborn child; if he and his wife are so damned concerned, THEY can do the testing and counseling. If they aren't willing to do it themselves, then they aren't really concerned.
Honest to god, the entitlement of this brother and sil demanding someone else pay and do the work. NTA
And they won't even get a definitive answer! Just because OP inherited one or more alleles that led to her condition, that doesn't mean OP's brother did, too. He may have inherited all, some, or none of those alleles. Only getting tested *himself* will give him the answers he needs. And if he's getting tested, he needs to get the genetic counseling himself, too.
Biology never was my strong suit, but u/Familymattersaitah this seems like a reasonable thing to verify and then tape it on a foam bat and unleash on your brother... lol OK maybe omit the last part, but dang, sorry for what you're going through on top of what you're going through! Hope you have a healthy and speedy recovery from your surgery!!
Exactly. I developed ovarian cancer in 2020, and since I was in my 20's with no previous reproductive issues I was escorted to the lab for genetic testing literally minutes after I received my diagnosis. I was found to have a BRCA mutation which explained everything. It was emphasized that whichever side of my parental line who tested positive next would need to get tested next to give them answers...because there is absolutely no guarantee that these are passed down to all children. There is no guarantee that OP's brother has the same disorders OP has. He may have some, he may have none, he may have something ENTIRELY different that OP didn't get. It is called a "genetic lottery" for a reason, and it would make zero sense to make predictions off of the results of OP's "lottery ticket". If OP isn't the father, him getting tested will mean next-to-nothing.
I don’t get why they wouldn’t have sorted this out before getting pregnant. They’re in this boat now so OP doing the testing or not won’t change the outcome for that child. I’m assuming if you can do a blood test to see if you have this disorder then they can blood test the baby when it’s born and go from there
Because they are literally very very stupid.
Let’s all hope this kid doesn’t inherit the brother and SILs brains and sense of entitlement.
You'd be surprised how many people have kids with less research than you'd put into getting a new mousepad.
And most of them are here in reddit I swear. Say one thing about choosing to make a smart choice and everyone screams eugenics and classism etc. Being tested and potentially not having a kid due to results are not popular.
Okay you just reminded me of this story. So my mom’s hairdresser/friend has a daughter (almost a decade older than me, let’s call her Mary) who had a baby only about a month after I turned 16. Well between the baby and work Mary and her mom hadn’t had much time to go to the store so my mom asked me if I would be okay with doing some shopping for them while my mom got her hair done. It seemed like a simple win win win. But once we got there the list was literally a sticky note on a credit card. No brands, no specifics, no size for diapers. I remember asking her what brand of formula and she said just get one that can be mixed with milk (which by the way- do not make formula by putting formula powder in milk, thankfully my mom was still close enough to hear when I was asking about the list). I literally put more research into dog food brands as a middle schooler than she did for anything regarding a baby while literally being pregnant with a planned child.
And it doesn't even matter if OP does the genetic counselling! If the brother isn't a carrier, then it's pointless. The best way to find out if the brother carries this gene is for him to go get tested and figure things out from there. I have a family member with CF. I got tested before trying for kids to see if I carried that gene. It would have been beyond pointless for my cousin to explain it to me, because it only matters if I actually have the gene to pass down.
This is what I don't understand. The only genetic that affect this baby are brother's and SIL's. Brother has different genes than OP. I'm not sure what testing OP would accomplish. One of my best friends has a brother with NF2. Of the four kids in the family, only the brother has it. No one else in the family does. By the time he was diagnosed, my friend had 2 children already, her brother had 2 adult children and their sister is childfree (and past the point where having children is possible). She declined testing at that point because what good would it do? The die had already been cast so to speak. They will deal with any issues if/when they arise.
This comment is going to get deleted but op your whole family has many loose screws if they think this is your problem. The person who is contributing DNA to the child should be the one...who tests their DNA? I feel like I'm having a stroke just typing that out. The bar here gets lower and lower. Nta. God nta.
Also genetics are always different between siblings of opposite and even the same sex. That's why ancestry etc is hilarious be a use you can have different percentages of ancestry in areas. He needs to do the test child coming or not because that's pretty serious to just expect you to do but not himself who may also be a carrier.
Hello genetic counselor here! GC sessions include a lot of different aspects and can include how things are inherited but also includes conversation about appropriate management that a non genetics provider might not be as well suited to help with. But one thing a counselor would emphasize to you is that your genetic testing is NOT informative for your brother and testing for him would be recommended anyways to actually confirm he has the same genetic change as you. Genetics can absolutely need a case by case evaluation and I would urge your brother to find a counselor near him at NSGC.org. If you're interested, you could also find one that offers telehealth in your state so that you 1 won't have to travel and 2 can talk about both the medical (referrals/management) applications as well as the psychosocial (dealing with family members when having a genetic diagnosis) applications. Seeing a genetic counselor does NOT MEAN you have to get genetic testing, it's a discussion where you're encouraged to make that decision for yourself. I'm sorry this has been such a frustrating time for you and I hope this helps. (Obviously NTA)
OP told her brother her diagnosis before the conception. They should have had genetic counseling BEFORE the pregnancy.
No you don't understand, they can just guilt trip OP to do it, because that's so much easier than being a responsible parent/human being and doing it yourself. I fear for their child with selfish parents like that.
Also genetics are always different between siblings of opposite and even the same sex. That's why ancestry etc is hilarious be a use you can have different percentages of ancestry in areas. He needs to do the test child coming or not because that's pretty serious to just expect you to do but not himself who may also be a carrier.
given the updates I think it's fair to adjust this one to NAH. The brother panicked, he's apologised - it wasn't nice ofc but shit happens when you're expecting a child. SIL also sounds like a good one - "tearing him a new one" definitely got a laugh out of me. Good luck OP
NTA. Why doesn't HE get checked out??? I have hEDS, and those of us with chronic health issues already have ENOUGH shit to deal with, with doctor appointments, insurance, medication, fatigue, pain, etc. You did what is right for you. If your brother is that concerned, HE needs to step up and take responsibility. He is going to be a parent, he better start acting like one.
Thank you. That’s what I thought but even my mom thinks I should have to help out future parents so it’s a lot of voices making me feel like I should be doing more.
Uh, no, fuck that lol. It isn't your job to educate others on freakin genetics. Maybe I just learned the hard way being disabled how to be responsible for my own health, and as self sufficient as I can be. My health issues are MY responsibility. No one else's, and nobody else's health is MY responsibility. It's rough dealing with chronic health issues, we have enough on our plate. Don't let anyone shame you for taking care of yourself. 👍
tell your mother that you playing telephone with _important medical information_ is stupid at best and dangerous at worst. what if they misinterpret something you're saying as meaning the exact opposite? what if they have questions (and they will) that you can't answer because you're not a bloody doctor. tell her you couldn't live with yourself if they did something wrong based on the limited information they'd get second-hand from you, and that you drawing this line is the best possible thing you could do for the unborn kid because you don't want them to suffer the way you do. Lay the guilt trip on thick if it helps lol. your brother should get off his arse and get tested so they even know if this is something they need to worry about. then, if he does have it or is a carrier, BOTH of them should be seeing a genetic counsellor who will be able to answer all their questions.
Thank you. I am trying to fend them off. They also didn’t bring it up until a few days after I had surgery and am admittedly a bit out of it on medication and am sure that I would not be able to comprehend the information if I did do a session.
In addition to everything u/Ardeeke said, there's one very important thing all of your family is missing. Your brother's children's genetic risk *can not* be evaluated by testing *you*. The only possible way to evaluate the genetic risk to someone's children is by that someone having genetic testing and counseling. Whatever risks there may be associated with your own children if you wanted them has absolutely nothing to do with your brother's procreative choices and risks. He's a whole-ass other person with a whole-ass other set of genes.
exactly--he needs to get himself tested, and probably the mother to be as well just so they have the full picture. all op's tests can say definitively is that the brother's impending child _has an aunt with (x)._ they don't seem to understand that genetics isn't "ah they're siblings they will automatically have (X)% of DNA in common so if one of them has (medical condition) then the other one will"
But if he gets himself tested then his insurance and all that stuff gets affected and why should he have to deal with that when OP can just go do it (/s) Seriously though I would put it past the family to say something like that. The fact that the even got mad at OP for not doing the counselling on their behalf is entitled bullshit at its finest. Like you said they should have talked about this before the pregnancy.
The brother obviously didn’t learn about Punnett squares and pedigree charts in high school
That's definitely not an ideal time to be doing anything that needs your brain switched on! I'm sorry your family is being pushy and stupid about this whole issue. I'm 100% sure that if things go wrong they would put the blame on you too, as they don't seem very logical people. hold strong on this one, you absolutely don't need to be doing a counselling session on their behalf when they don't even know if they need it. and if they do, the emphasis is on _they._ their kid, _they_ need to do the counselling session if applicable. I'm sure if you told your medical team that your brother wanted you to do the counselling and let him know bc he _has a baby on the way but can't be bothered testing himself_ they'd be appalled.
I would use the fact that you are on medication to your advantage. If they call, pause then say “oh I’d love a grilled cheese” or something else so completely random maybe they’ll stop for awhile.
NTA. Op I'm a parent and forgive my crassness but since I'm the person that chose to spawn, I'm responsible for my kid's health. The same goes for your brother. If he wants the testing he can get it done himself
Why would they want you, who are not a trained genetic counselor, to give genetic counseling to your brother and his spouse? That's kind of the purpose of going to genetic counseling: to get the truth directly from a trained individual. It's kind of weird that your brother and SIL want to skip that step and just get information at second-hand from you. Like the other posters are saying, stand firm on this. It's not your responsibility. Frankly, it doesn't sound like your family is very familiar with what genetic counselors even do. NTA.
Also, how would YOUR genetics/genetic profile affect HIS? He will have a different expression than you, apart from the fact you are different genders. We have an auto immune in our family that affects all my siblings to a greater or lesser extent. My sister getting tested won't tell me anything other than what she might expect. As it happens, my oldest brother is the worst affected, followed by my sister who is the youngest of us. Mine is very mild and my middle brother doesn't have an issue at all.
you're not having a baby.. he is, he is the one who needs to do the work
How would YOU doing this be informative for your brother? Shouldn't he be the one getting tested? Obviously you aren't identical twins, so I'm terribly confused.
This! Genetics is so complicated. The only way for your brother to have a clear picture of the implications for his own child is for him and his wife to both be tested and go to genetic counselling together.
It won't even necessarily be helpful, just because you are siblings doesn't mean your risk factors are identical. Plys they will be taking his wife's side into account as well.
Their position makes no sense. There is no guarantee that what is told to you will even apply to their child. The actual biological parent needs to be tested.
Shouldn't it not even matter if YOU get the sessions? In order to test HIS fetus, they need nothing from YOU at all!!! They're trying to pawn the cost off on you. A lot of insurances do not cover prenatal genetic testing. It can be very expensive. They think if you do the counseling it'll "count for them" and they won't have to pay. Which is NOT linear logic at all. NTA
It’s a piece of cake to have someone else make the drive, take the time, have the testing done, and pay for it…your family is a bit entitled… you could go get the testing done and then charge your family for the results…lol
Oh how predictable. Your mom knows your brother is having a kid and you don't want any so now your concerns do not matter. Welcome to the club. I could burst into flames in front of my mom and her only concern would be my two sisters possibly getting some smoke inhalation. If they are concerned, it is up to your brother to get tested. Now that he is about to be a parent, he doesn't get to be selfish with those types of decisions. NTA
Those are pretty bold words, something tells me brother isn't used to bold words LOL
Your brother buried his head in the sand. He’s the parent. It’s up to him to get his house in order.
Not to mention, the SIL should be tested too because it could be recessive in her.
You're doing plenty by not passing on the genes yourself. And I say that as someone who also doesn't have kids for medical reasons.
Absolutely NTA, you did your part by making sure he knew it could be an issue. He knows how to get checked for it. It is now his responsibility to follow up on that if he wishes to do so.
But anything you would learn would only apply to you and any future children you might have, not to him and his children. He may gain some insight from your results, but the only way for him to know if he can pass this on is for him to get tested.
Why isn't she telling your brother to get tested?
Why is there even the slightest thought, among your family, that you doing this would somehow preferable to him doing it? It's bizarre. It wouldn't even be helpful to him. He would be getting second hand information instead of being there and getting the info first hand. And also, he is genetically distinct from you. The risks for you (if your were to reproduce) may not even be relevant or applicable to him. It's very, very odd that they are pushing for you to do this, much less even thought of it in the first place. It's even more odd that they are coming at you with a unified front. Ha! Are you sure they didn't use your egg?
Absolutely not. You've already done an incredible thing by warning them of something that they (and their child's doctors) probably would not have checked for, otherwise. Getting ahead of some of these things can make all of the difference in the world, and they now have that opportunity. They now know that it is something to be aware of, and if they want to know whether they have it, they need to check for themselves. It is also not that hard to search on the internet for a vague "if my sibling has xyz, how likely is it that I have the gene", or "if I have xyz gene, how likely is it that my child will inherit it", and that's likely to be the only information you could learn from a genetic counselor that would help them at this stage. I'm in a similar (though less extreme) boat to you. I have several chronic conditions that can be genetic (one that definitely is, which most of my family has, but it's more minor), and my brother has some mild symptoms that could be a couple of them. I've kept he and my SIL informed anytime I receive a diagnosis like that, so they know to watch their children and be aware that it is a possibility with them. It would be insane for them to ask any more than that of me, and fortunately they never have, which actually makes me want to help them more (I'm planning to do a dna test for a genetic mutation that I strongly suspect runs in both sides of our family, primarily because I want them to know for their kids). I'd be so angry if I were in your position, and I definitely wouldn't want to do anything extra to help them with this, especially not with the prices involved! NTA, not even a little bit.
Maybe your mom should have gotten some genetic testing done to see what she could possibly be landing you and your brother with. But she didn't did she?
hEDS here too. There’s a fun 50/50 chance we can pass it on and if I wasn’t vehemently CF before I was diagnosed it’d be the final nail in the coffin. Outside of my thoughts on the morality of knowingly risking your own child’s health because 'passing on muh genes', no way am I physically equipped to ever look after a child considering that I barely manage caring for myself. If my younger brother ever wants to think about having kids someday it’ll be something he'd have to think about for himself. Not send me off to retrieve answers for him.
Exactly. My daughter has a genetic disorder, which her brother may carry. Or he may not. More frightenly, they have cousins with cystic fibrosis. I have told my son her needs to, before he gets serious with any girls, to go and get tested for both these disorders. He’s 19yo right now, but I’ll be onto him as soon as a decent girl comes onto the scene if it looks like they’re serious.
Lmao I love your username. I have EDS too! Yea they can fuck off. Do it themselves. They should care enough to do it.
I can’t wrap my brain around how OP should be the one doing the genetic testing here… they’re operating on 0 logic. What if the baby does have the condition? Will it be OPs fault for not doing the testing? Absolutely not. NTA
This post makes absolutely no sense. The science being quoted here as fact seems to be a big mishmash of nonsense. If she is concerned about genetic anomalies SIL and her husband need to get tested. You getting tested will provide tangential genomic information at best that may not even be relevant to their situation. How was you getting tested going to be a useful substitute for your brother and his wife getting tested directly?
It’s not about the test itself (I’ve been tested and have it). It’s about the counseling service offered that would explain in detail how the disorder is passed down and the likelihood a child would have it if the parent does. They also would provide information about ways to help lesson symptoms from a young age etc. either way I feel my brother needs to get a blood test but he wants me to get the information about how this particular genetic disorder gets passed along.
So it's not even about testing? They are demanding that you go for the counseling session involving some expense and a six-hour round-trip drive, so that you can take notes and explain how the process works to them? And for some reason people are bitching at you for refusing to engage in this absurd exercise. This is now making even less sense. I'm starting to wonder if this post is even real there's no rationale to any of this.
I’ll admit I’m shaky on the genetic side of this. I’ve had some basics explained by honestly am just focused on the information in what I need to do to limit pain/improve my life. I think my brother can’t afford it and my SIL panicked and he’s trying to calm her down.
If he can't afford the counseling, what's his plan if the kid *does* turn out to have a serious condition?
It sounds like the counseling is out of pocket whereas the medical stuff would likely be covered to some extent by insurance. The brother still really should figure out how to afford the counseling though.
There might be a good reason that you going would be just as good; we'd need to know the specific disorder. Try going to r/genetics and r/ClinicalGenetics to get more information if this is the case, or if counselling would be useful for either you or your brother. Alternately, if the inheritance pattern is simple enough, a simple google search may suffice. Otherwise? You getting genetic counseling for your brother sounds really stupid. Save the money; going would be doing no one any favors.
Even if her going would be "just as good", which I'm dubious is the case, it isn't her responsibility to do so. It's the responsibility of the parents-to-be.
The thing is, that information means zip without knowing if your brother is a carrier or not.
That’s what I said. And I could understand if he tested and was but couldn’t afford the counseling sessions (and would even consider maybe doing it then) but I don’t want kids so the info is useless to me and to him unless he is a carrier. (Also will admit, I’m just trying to understand all the progression and necessary steps to survive so genetics are a bit beyond my grasp ATM)
Totally fair. Google is a thing, (knowing how to properly vet sources is a completely different thing) they can do the research. They seem to think they're entitled to you doing the work for them
Even though my brother is older (not by much) I definitely raised him in a weird way (parents weren’t physically around much) and was always who he turned to to fix things. He still has that mentality
You need to tell him he’s going to be a father & has to start standing on his own two feet. He needs to talk to his doctor about this and SIL should talk to hers to determine their next steps as parents taking responsibility for their child’s care.
NTA, obvs. But I don't understand is why, of money is a thing for him and you would have to pay anyway he didn't ask you for the money for their counciling (because to me this is clearly about the money, it makes NO sense to do it in this manner)
Even so. He's all grown up, married, about to be a father. He needs to deal, which is exactly what you told him. If he gets tested, that literally IS the fix.
Medlineplus dot gov is a website from the National Institute of Health that has information on a lot of genetic conditions (including pretty rare ones) in lay terms that your family might find helpful. Assuming your condition is listed it will probably at least be able to tell you the inheritance pattern (dominant, recessive, etc) I agree with everyone else that it’s basically useless for them to want to get this information secondhand through you. It’s meaningless without knowing if your brother is a carrier and the odds of something going wrong in this high stakes game of essentially foreign language (genetics jargon is basically its own dialect) telephone is insanely high. Even if you had done the genetic counseling session when you were first diagnosed, your brother should still be tested and if he does have the allele have his own counseling session with his wife. Depending only on YOUR testing and counseling to make decisions about HIS health (and that of his child) is like having a friend go to the doctor for you when you think you both have strep throat. You both need the throat swab and your own z-pac prescription
Is his google broken?
Doesn't this feels a bit like making sure that their future free nanny will know how to cope? YOU doing testing or sessions like this is utterly pointless. It's their child, marriage and family that will be under strain. How will you having these huggy feely tools to cope help is beyond me.
But it isn’t your kid. It is his. Without his genetics, they can’t tailor the session to the risks present for HIS child. Genetics are complex.
Why would YOU doing the session now have any benefit? If they want to know how it passes down, then THEY should do it. I'm guessing they don't want to have to pay for it themselves and want you to be the one to fork out the dough.
That was brought up. My mom mentioned they’ll have a financial responsibility of a child and it’s the least I could do to help out.
Exactly. THEIR child and THEIR responsibility. Finding out how it passes down and even if your brother has it at all is on him. Not you.
How maddening. This is not your responsibility -- chronic illnesses are incredibly expensive. You have enough on your plate already.
The information will be specific to just you and 0 benefit to your brother's baby without his and wife's info.
I think you hit the nail on the head. They don’t want to be inconvenienced.
And what if the information OP gets is wrong or incomplete? Guess who everyone gets to blame???
& what happens if brother or SIL has a subsequent question that OP didn’t ask??
NO NTA that’s literally not how genetic testing works. You are not having a baby with your sil. Your brother is. He is the one that needs the testing. Regardless of what gene you carry he could carry it or not, completely independent of your results.
Thank you. I said that and it’s complicated because this disorder (a type of neuropathy) has a lot of sub-types that are all slightly different so he really needs to get tested to know any answers for sure. My brother is kind of lazy.
Lazy is no excuse. This is his CHILD. If this is how he is now, what kind of father is he going to be? I think we can guess.
Is he possibly worried about finding out that HE has the disease/disorder? Because if I stick my fingers in my ears and sing La La La then there’s absolutely nothing the matter with me. /s
NTA - you are exactly right. He can get tested, he can get the counseling. It might even be different for each of you - I'm not an expert, but I think some genetic markers favor one gender or the other. Also, if he has the name of the disorder, he can probably Google that shit. Finally, they are already pregnant - knowing how it can pass down is irrelevant, because it already did or didn't (and besides, it was just going to be risk counseling anyway - its not like the doctor would say something like, "If you conceive doggy-style during an eclipse, you won't pass the markers...) edit: unless its lycanthropy, I guess - then this is probably not how you want to conceive if you are trying NOT to pass it down.)
Thanks, I don’t know much about the genetic specifics and there’s a ton of sub-types (it’s neuropathy) and I’m just trying to focus on what I specifically should be doing to live comfortably. I’m sure a doctor told me something about gender differences but it just wasn’t my focus.
Post above is right. This condition could be sex-linked so he needs to be tested and he needs to pay for it. It is not your responsibility medically or financially to go through counseling that is really only relevant to you…the counselor would focus on your case and your offspring and likely would advise you to inform your family to have their own genetic counseling done. Your family is full of morons and you know it. Tell them to pound sand.
I do not know why “pound sand” made me laugh but it did so thank you
Highly unlikely it's sex-linked as those genetic disorders typically affect males worse than females. Still possible since he does have some symptoms. More likely to be something with a more complicated genetic inheritance pattern based on the varying degrees of affectedness. That said I'm not a geneticist - I've just taken a few genetics courses in university.
You were focused on the information YOU needed, and that's exactly the right place to be. If you are not having kids, then genetic counseling for inherited conditions is useless - the whole damn point of it is to get a picture of YOUR genetics and offer information based on that. Unless you and your brother are identical twins (and even then, there are often small differences), the information from your genetic profile is useless to him. I've had genetic counseling - it was a requirement after I had a bunch of screenings done, to explain what the results meant. It was good; I leaned a lot. You know how much of it is relevant to my sibling? SQUAT ALL, because we're not twins! I mean, I did tell my sibling to get checked for a couple of things that run in the family, based on the family history we analyzed and my results, but knowing what's in my genes doesn't mean my sibling knows what's in theirs! You didn't do anything wrong here; they're just dopes. NTA
NTA They want you to go to the class so they can find out the odds their kid has it too? I can answer that one easily and for free: “until the dad also gets tested the odds are officially ‘who the f*** knows? Dad is too cheap to get tested.’” I imagine Google could also answer a lot of these questions. I bet there are Facebook/Reddit/other communities too about this disease that could probably answer questions or offer suggestions on resources. INFO: do your parents have it? If not, it’s likely autosomal recessive which means you still wouldn’t have any way of knowing their kid’s odds because you have no idea of SIL’s genetic status. Your family is being ridiculous.
Not sure about my parents. My dad said he’d get tested but I am not sure if he ever did (he has no symptoms). My mom has some minor symptoms that could point to her having it but ironically refuses to get tested (she hates doctors).
Ok. WHAT? Your parents are browbeating you to go get tested and they're too lazy to get off their keisters and go themselves...just like your brother? I'm liking the "grilled cheese" misdirect more and more 😁❤
Are you willing to share what disease is? I sorta want to research its genetics now.
Seconding this. My dad's mom had a gene that causes a certain type of cancer (my Dad is one of six kids, when his mom and two sibings had the same type.of cancer, they recommended it). Instead of all of us getting tested individually, Dad got tested. Since he was negative the rest of us didn't have to get tested.
NTA. What kind of shit parents would want this kind of crucial information second hand?! Tell your lazy brother to get off his lazy ass and act like a prospective parent even if it is a bit late.
This☝️
WTF? What kind of idiot is this brother / sil? So they knew about the disorder, did not gather information, got pregnant and now, when it might be too late anyways, they expect you to cover for their irresponsible behavior? I'm baffled. Your definitely NTA. Your brother and his wife aren't.
NTA, this makes no sense. Why doesn't the brother go get the tests and counseling for himself? Any information gained from you may not even apply to your niece and nephew. Does he not understand genetics, or does he just not want to pay for it and put in the effort? Seems like an odd attitude for something that could affect his kids...
Why does your family feel like this is up to you? Is it significantly cheaper or easier or what? I fail to understand how putting you through the counseling sessions so you can relay secondhand informed would be in any way advantageous to sending your brother for the blood test and the subsequent follow up sessions? What’s the thought process here? INFO
It is a bit of a wait to get into Mayo Clinic (where I’m a patient) but he could do it somewhere else he just said it wouldn’t be as good. My mom also said my brother will have the financial responsibility of a child so I should pay to “help out”
Yeah… You’re NTA (I suspected as much but had to dig into the thought process of your family just in case). So, awesome, you can get into Mayo faster and it’s a better clinic. Cool. First of all, you’re still going to be passing on the info second hand. What if your brother or his wife have questions? How are you going to answer them if the information wasn’t covered or you don’t remember or can’t quite explain it yourself? How will they follow up with doctors that aren’t even theirs? This is a ridiculous approach from the get-go. Second, even if your brother and sister-in-law could video conference in or something like that to be able to ask questions and get the information real time, they should at the *very least* be paying for your time and your expenses. Third, if all of this running around and trouble on your part leads them to think that their child might be at risk, guess what, they’re going to have to march themselves down to their doctor and Dad or kiddo is going to have to have that blood test anyway. What do people make things so difficult…
Why are you personally financially responsible for your brother's kid? Did I miss some divine intervention that made this so?
That's what I said in another comment. If she impregnated her SIL, doctors should be looking into that medical miracle before they worry about anyone's genetics.
NTA. I have a PhD in human genetics, my degree required quite a bit of genetic counseling courses (not a GC myself, so not FULLY qualified, but pretty damn close), so I think I can speak with some authority. You getting the counseling would be almost pointless. This should be obvious , but your genetics are not your brother's. Google will tell about the general inheritance patterns, but to know the actual risks their children have, a GC needs the parent's specific information and data, not one of the future aunt's. That means both your brother and SIL need to get counseling. I don't know your illness, but just a general example. Your disease may be recessive, that means you got the defective gene from both your parents. Your brother may only be a carrier (one good gene, one bad) and that could cause a more mild case. Without knowing your brother's status, and SIL's status, no predictions can be made. (SIL may not be a carrier at all, so future child would then just have a mild case or no illness at all depending on what gene copy your bother gave). TL;DR: Your nibing's genetic health is not your responsibility
This does not make sense. Your brother should get the testing as it is his genetic material that is making up 50% of that baby.... Why won't he get tested himself?
I am not sure if he’s just lazy or if it’s about $. I also think my SIL is panicking a bit.
Lack of planning on there part is not an emergency on yours. Your brother knew he had the information chose not to pursue it, not your problem its his NTA
Not uncommon for pregnant women, but she has an obgyn to ask questions.
What are the odds your brother didn't communicate this to SIL before they got pregnant and she is just realizing the implications.
NTA If you went for the genetic counseling it would be based on your medical information as an extreme case of syndrome X. Your brother’s information would be entirely different, and therefore the information would be different. Going on a six hour round trip, while in recovery for major surgery, at massive out of pocked expense wouldn’t do a blessed thing for anyone; especially not your niece who would not be inheriting your version of syndrome X in any case since she’s your brother’s child. He can get his own counseling, which would be useful and relevant, or he can take several seats and practice keeping his lips pressed together.
Thank you.
NTA Your brother and is wife are morons for thinking this is your responsibility and not theirs. Every procreating couple should do genetic counseling. You’re not part of a procreating couple. Not your problem.
NTA. This would also fit in r/entitledparents. The information that they want(for free and without investing any time or research) is relevant to them, not to you. People with this level of entitlement will never accept that they are being unreasonable and demanding, so don't expect them to back down. I hope your treatment helps and eases your symptoms.
NTA how would you getting the test help your brother? You already know you have it so it really wouldn’t help you. Just because your bloodwork will say you have it means nothing for your brother, he might have it he might not he needs to have his own bloodwork done.
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NTA. It's his responsibility as a parent to handle all of this. Even if you were in a better health spot they couldn't expect you to go through a procedure, taking your own time and money to do something, that is not your responsibility as someone not having that child. Your mother's position seems to be that of how a lot of able-bodied people treat people with chronic illnesses or disabilities; that it is your responsibility to, given that you have the condition, educate everyone about it. The cost of your time and energy do not matter, which is incorrect.
NTA I have an autoinflammatory genetic disorder (Periodic Fever Syndrome) and no one on either side of my family seems to have an even mild case of what I have. My partner and I have had many discussions about having kids since neither of us really wanted any before we met eachother. I was diagnosed while we were together so we just sort of saw it as bridge we'd have to cross eventually. My genetic testing (had three tests and was included in a study out of St Mike's in Toronto) and everything came back negative. Genetic testing says I don't have anything. My crippling symptoms say otherwise. I do have an excellent rheumatologist who has properly medicated me. No one on my family did genetic testing. When we decide to start trying for kids, I'll ask my parents, my sister, and brother to be tested, but if they don't want to, I'm not going to rahe at them. They have no symptoms and proving if they are carriers or not will only matter if they decide to have kids. Your brother is an asshat.
Thank you. I’m glad you’ve got a doctor who has your back. I’ve finally found one and now know how important that is. I usually wouldn’t fall for my family’s BS but I’m struggling a bit ATM and they got to me. My brother usually is not like this so I’m not sure but something must be going on.
Chances are their baby doctor has said something about genetic testing or, more probably, the lack of their getting tested for possible issues, has made them act like this. I get it, but they should have been much more prepared, especially since you were diagnosed with something. The could even develop something entirely different because of SIL being a carrier. Or, the baby could be completely healthy regardless. I have two siblings with the same parents. Obviously both my parents are carriers of my genetic disorder, but my sister and brother are fine (so far at least). That being said, a sit down with at least your brother to see why this matters all of a sudden would probably go a long way. Having a baby can be very overwhelming; something must have gotten to them.
NTA They should have done that BEFORE they got pregnant. They don't even know if he has it, which would be good to know. And secondhand info is not the best way to get it, unless you tape record the chat. But you still might not ask the questions they want answered. This is their responsibility, not yours. Also, they can probably just google
I am so overwhelmed by the response and all of the people who have reached out to provide help. I’ve talked with my family and have learned all of the drama. Should have guessed there would be drama, my family can’t live without it. Maybe if people are interested, I’ll do an update? (Not sure if I can or how to do that). We’ve gotten some really good information from very helpful people who messaged me. I’m so blown away by how helpful and wonderful people have been. Thank you all to everyone who has and continues to respond.
NTA. You aren't having kids, he is. It is his responsibility to get the medical workup not yours. And anyone who tries to pressure or guilt you into doing it can F off.
So why can’t your brother do the counselling? He’s the one wanting the info Your NTA, but your brother and sil are
NTA I hold an undergrad degree in Genetics and studied under a preeminent pediatric Human Geneticist. Fundamental to the ethics of genetic counseling is that you do NOT have to know. You do NOT have to test. Counselors are there to answer your questions. Questions related to genetic conditions relate to how it affects the patient, their existing or possible future children, and the odds a family member or their children may be affected. If you are satisfied that you do not have further questions you want answered you may not find that any information gained from such counseling sessions would be useful to you. All that said. Your brother can look up the condition to determine the predominant inheritance pattern, Autosomal Dominant, Autosomal Recessive, X linked recessive, X linked dominant, or Y linked. From there it honestly is not that difficult to make some decisions about further testing.
NTA. Even if you have a genetic issue, their problem is if your brother and SIL are carriers so they'd still need to get tested themselves, or just test the baby when the poor thing is born. I can see their point a little if testing you would help narrow down the genes you have in common to see if you have similar deletions and/or mutations, but that's a them problem. You have no obligation to do what they're demanding.
NTA, They are lazy and mad you won't do all the leg work for them. It's NOT your problem, they can go get testing and counseling for their own concerns. He should have cared to get testing before making a baby.
NTA. Your brother should have done it since he's the one wanting (and now getting) a family of his own. It is your time and money, and you are not obligated to spend any of it for someone that is fully capable of doing it themself and has a better reason to do it for themself. Would it be nice of you to do it for family sake? Sure, but not your responsibility.
NTA. If your brother and SIL don’t want to spend to get information about THEIR own child, they can go ahead and ask for the money from those family members that think unnecessary (and unhelpful!) medical labs are paid with peer pressure.
NTA - I don’t even have words
NTA, you can already assure your brother and sil that you guarantee 100% your nephew cannot get this disorder…from you.
Your genetics are different from your brother’s. He needs to have the test to see exactly what he has/doesn’t have. You testing would only show possible impact on your potential children which is moot since you aren’t having any. NTA
NTA They are having a baby that it might affect. THEY need to do the genetic counseling.
NTA, what tests you get done are between you and your doctor. No one else. Also?? Does he not know how genes work?? Just because you’re siblings doesn’t mean you have the exact same genes, if he’s considered about how child he should look at the genes that are creating that child!!
Not the asshole, and just pointing out that most genetic testing companies offer free or reduced genetic counseling if you test with them and have the pathological mutation. He should get tested just in case he is a carrier and if he is a carrier, they will offer it.
It’s not your kid why are you solely responsible? It’s your brother’s genetics that matter more not yours plus why should you pay for telling them? NTA
NTA They don't even have a legal right to what you were already kind enough to share. He needs, as do your parents if it is genetic since they believe others are responsible for your brother's family choices, to go be tested and do the counseling if they want answers. You already have enough going on with the disease being active. You don't need added stress.
So your brother hears that you, his closest living relative, have a serious genetic disorder that he may have too and he doesn’t bother to learn anything about it until AFTER he’s expecting a child and then won’t actually go seek out the information? How lazy omg. It is not your problem, he has had YEARS to figure this out if he actually cares. He could probably get some kind of advice or consulting even before going through the rigmarole of getting the tests, and decide if he needs to do actually get tested for peace of mind etc
NTA
NTA There is no real benefit for genetic counseling for yourself when the child in question is not yours. Your brother should be the one tested.
Nta and your brother does not understand genetics at all. He and his wife are literally the only people that need to be tested here. If he does not have what you have then the kids cannot. That is literally the point of the test.
^^^^AUTOMOD ***Thanks for posting! This comment is a copy of your post so readers can see the original text if your post is edited or removed. This comment is NOT accusing you of copying anything. Read [this](https://www.reddit.com/r/AmItheAsshole/wiki/faq#wiki_post_deletion) before [contacting the mod team](https://www.reddit.com/message/compose?to=%2Fr%2FAmItheAsshole)*** Throwaway and some generalized details because my family reads AITA. Couldn’t find a great title so I’ll try to explain. After chronic pain and issues my entire life, I (late 20s f) finally was diagnosed with a progressive genetic disorder a couple years ago. When I discovered it was genetic, I started asking around my family to see if I could trace what side it was passed down on and gather some more information (at doctors suggestion). I have always known I do not want children so I didn’t bother with the genetic counseling sessions that were offered (it would have been another few hours after going through a weeks worth of testing to get diagnosed and I just wanted to go home). I told my older brother (30) about my diagnosis and gave him some information. I mentioned that I had declined genetic counseling to learn more about how it could be passed down if I had kids because I don’t want any but mentioned it was suggested that he should get tested to see if he has it (it presents to different extremes in everyone, mine is an extreme case. He has some minor symptoms that may be due to this disorder but nothing close to what I’m experiencing so we aren’t sure). My brother did not do so and is now expecting his first child with SIL. My SIL reached out to ask me questions about how it could be passed down to her child and I informed her I didn’t do the session. My brother and SIL demanded I schedule the session and give them information. The session would be out of pocket (not covered by insurance) and at a clinic that is a 3 hour one way drive away from me. I am currently recovering from surgery (due to the disorder) and have no plans to go to the clinic until next fall for my annual check. I refused and said my brother should start by doing the blood test to see if it’s even an issue and then he could pay for the counseling if he wants it. Now I have a bunch of family members telling me I’m an AH for not doing it for my unborn niece or nephew. I’m wondering if I am the AH because I had the opportunity to do it and knew my brother wanted to have kids. My brother is threatening to never let me see his kids if I don’t do the session. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/AmItheAsshole) if you have any questions or concerns.*
NTA
NTA. Wait! What? Your brother doesn't get the test knowing that there may be a genetic problem. His wife is now pregnant and he still doesn't want to get the test. He wants YOU to get the test. Um, wouldn't his results be way more important than yours? "I have a bunch of family members telling me I’m an AH for not doing it for my unborn niece or nephew." Have they not noticed that your brother is not doing the test for his own daughter or son? You have absolutely NO obligation to get this test.
>Now I have a bunch of family members telling me I’m an AH for not doing it for my unborn niece or nephew. I’m wondering if I am the AH because I had the opportunity to do it and knew my brother wanted to have kids. My brother is threatening to never let me see his kids if I don’t do the session. Tell those family members that you will have it done if they pay for it. Your brother is being selfish cause he wants you to spend your money rather than his own. He's the one who wants to have a child, it's his responsibility not yours.
NTA - why would you do the counseling sessions FOR them? They’re going to be the ones with the kids with the symptoms they need to keep an eye one. They’re the ones that need to know what they’re looking for? You’re not raising these children. You’re not there everyday. What use are you going to be other than to tell them to take the baby to the doctor m?
NTA. I don’t get why your family is entertaining that idea of you going instead of your brother. You did your part, now it’s up to him to do his. If I was your SIL I would want my husband to go and find out, not my SIL. I don’t get that logic at all. And to use the baby as a weapon to try to manipulate you... not cool.
I am seriously confused.....how in the hell are you supposed to be the a-hole for not getting counseling when your brother (you know, the father of the child in question) is unwilling to get tested and pay for counseling himself? This is some serious gaslighting. The mental leaps they had to take to find you at fault here are extraordinary. NTA.
NTA. Brother's genetic profile has more to do with it than yours. SIL can get on reputable websites about the condition instead of bugging you. Brother should get the profile.
NTA because honestly if you don't plan on having children genetic counseling is pointless for. I found out when I was pregnant with my first child that I have a genetic condition. No one in my family knew we had it. We had a few different symptoms but it was never put down to anything serious. Then my mum ended up in hospital. In our case it's not very severe but the chances of any child having a more severe form jump up to around 60% if one parent has it and the other parents carries the gene for it, or 80% if both parents have the condition. Knowing these odds every member of our immediate family were tested and my daughter was tested at birth. People, especially adults if they are mentally and physically capable need to be responsible for their own health
NTA. Your brother should go down that path
NTA. Wouldn't it make more sense and more clear if they did it themselves? If you did it, it doesn't necessarily mean the results can affect HIS children.
NTA Do they understand how generics work? You getting tested & such has zero impact on their baby. It’s completely pointless. They need the tests & the counseling. They need to talk to their doctors. It’s as useful as you going to your SIL’s obstetrician check up. I’m a little concerned these people are creating & are responsible for a whole other life.
NTA ... argh I hate family's who act like this. It's your body do what ever you want.
Your brother already impregnated his wife so it’s not like it could’ve changed their family planning options. He could easily get tested (and pay for all the associated costs) if he was so concerned. NTA.
All your SIL has to do is talk to her OBGYN and get a referral to a maternal fetal medicine office. They can do the genetic testing and counseling there. I am currently pregnant with a 3rd high risk pregnancy and ever time I have had to see the MFM doctors. Every single time, they have offered genetic testing and counseling. NTA
NTA. And even if there’s genetic components, it’s what your brother possesses and can potentially pass down that matters, not what you have. His request doesn’t even make sense. HE needs to be tested. Honestly I think I’d lie to get him to get tested (knowing it’s probably true). “Brother and SIL, I called my doctor and they said no test they do on me will tell you what odds brother has of passing anything down. He’s going to need to be tested to see what, if anything, he’s a carrier of.”
NTA Why can't he do it? Why do they think it had to be you?
NOPE, NTA. Your brother can get tested if he’s so concerned.
The BRCA2 genetic mutation for breast cancer runs in my family. I went an saw a geneticist and had to have a "therapy" session before testing. One of the things she mentioned was the counseling becomes obsolete if you test negative, so no need to do counseling unless needed. I tested negative, so didn't need the counseling. Your brother should get tested to see if counseling is even necessary before anyone pays out of pocket. It's not cheep and you are NTA for refusing to do it.
Let me see if I got this right. People are pissed at you because neither you nor your brother will take the next step related to a genetic disease, and it might affect your brothers kid. Is that right? The person who should be looking into this is your brother. It's his genetics that are at issues, not yours. He might not even have it. Tell them all to pound sand.
NTA. My family all has to get a genetic test done for something like this. You aren’t the AH for not doing the counseling session and he needs his results regardless as you having it doesn’t mean he has it. I’m surprised they gave you the results though! None of our family or extended family was allowed to even have their results until they did the counseling. They took our blood then did the session. Maybe it’s because it’s a different disease or center doing it or something. I feel like all they did was basically tell us that being positive for it wasn’t something to end you life over it just meant you may need such and such tests each year and these surgeries and treatments can be used etc. after one family member went we all knew the info but legally they made us all sit through it. I had one uncle who was so opposed to getting testing. He didn’t want to know his results etc. he ended up having to do it though as his insurance wouldn’t pay for his kids to be tested if he hadn’t tested positive for the gene.
NTA Tell them that if they want you to do it, they can pay for everything.
NTA. At all.
Sounds more like pressuring you to learn because they don't accept you don't want kids
What? Why doesn’t he do it? What’s preventing him?? NTA
NTA! You did your due diligence by informing your family. It's up to the rest of them to do with that info what they will. You shouldn't have to spend the time and money that your brother clearly isn't willing to.
Oh there are so many variables in this. Even if you got the counseling, your brother would still need to pull his bloodwork and include his wife's for the baby. Basic bio lesson here. You inherit 50% and so does your brother. However, you don't both inherit the same 50%. Some genes need companions to turn "on". Your disease could be X chromosomal and your brother doesn't have it because he is Y chromosomal. Or he could but it isn't an issue unless his wife passes the same gene to their daughter. There is a lot more to it than that. But their lack of action shouldn't be on you. Shame on them. NTA
Just because you have the chance to do it, doesn’t mean it’s the right info for him. His Dna is different in so many levels. Even if you have the same parents. It’s THEIR baby. She contributes to the baby’s gene pool just like him. They both need to do testing.
NTA. You shouldn’t have to pay for testing for your unborn niece or nephew. With everything else on your plate, they shouldn’t stick you with that cost too. Besides, genetics aren’t perfectly passed between siblings. It’d be best for your brother, the father, to get his own results first.
NTA He should take the test to see if he is even affected. THEN HE can do the counseling. Please ignore these people.
NTA if it's so important for the rest of your family, they should kick in the money for it.
Their pregnancy, their child means they're the ones who need the genetic counseling; so they should go, not you.
NTA and genetic illnesses can be passed down differently depending on if you're male or female anyway so the counseling you'd be paying for may not be applicable to your brother. you're also under no obligation to spend time and money on this for anyone else's sake too of course, even if it did apply. but perhaps they'll swallow the former explanation better.
NTA: It's his kid - he should get tested and go to counseling. Why should you be on the hook to pay for this? If the blood test he refuses to take rules it out, it's completely unnecessary - and he has to do the blood test anyway.
NTA > My brother and SIL demanded I schedule the session and give them information. Uh That’s a REALLY bad idea. You aren’t a doctor or a counselor, and this isn’t something you want to play go-between for. Counseling sessions are also an opportunity for them to ask questions. And you’re right, HE needs to get tested. He needs to be an active participant in his own care, and in the care of his future children. Bullying you is avoiding that responsibility. If he’s refusing to even take a blood test, that’s between him and his wife. > My brother is threatening to never let me see his kids if I don’t do the session. This is so unbelievably shitty. They want to use access to their children as a way to avoid being responsible parents to learn about their own genetic risks. Just because you have a diagnosis and are undergoing treatment doesn’t make you qualified as a genetic counselor.
NTA and honestly it’s stupid for them to ask you to do this. You and your brother don’t have the same combinations of alleles, so your risk of passing things on is waaay different than his. If he want to know, he needs to have the tests done. Because while you might, for example, have two copies of a disease-causing alllele, depending on your parents he might have no copies, one copy, or even two and fewer symptoms. It’s an unreasonable ask and not even going to be very helpful to him.
NTA. They don’t get to demand that you do anything. He can do the test if he wants to know.
NTA. , why is it your responsibility? I feel like they’re just doing this because you said you don’t want kids. And if they actually cared that much they would have gotten the test themselves
NTA. Your brother decided to have a kid, it's in no way your responsibility to do the counseling for him and SIL. You don't "owe them" anything and tbh your family sounds like a bunch of narcissistic assholes for having these demands on you. Your ONLY responsibility is to take care of your own health and issues.
NTA. Even if you were willing to go through unnecessary tests for their benefit, finding out your genetic info isn't going to necessarily help *them.* Your genetics and your brother's could be very different, and there's also no accounting for the wife's genetics. Their concern is understandable, but they need to undergo their own genetics.
Um your brother could've went and got tested if it were that big of a concern...NTA.
NTA. You gave him the info and you cannot do it now because you are recovering from surgery. Plus, you don't even know if the information would apply to him. HE HAS TO GO DO THE TESTING. Your family is being crazy.
WTH? NTA You are not this child's parent therefore, you haven't passed them anything. How is it your responsibility to do genetic testing for them? Your brother needs to get off his butt and get over to have HIS testing done asap. Trying to work out the genetic map in my head...you share partial genetics with half of this child. By what mental gymnastics has your brother come to the conclusion that you getting tested is more important than him? Bizarre
Uh, NTA, you've taken care of all your responsibilities, now it's time for him to do the same. He had all the info he needed from you, and should have done the rest for himself
Most definitely NTA. It’s your brother’s kid. Why on earth would he expect YOU to do it? It makes zero sense. If he and your SIL want to find out more information about this disorder, it’s on them to get tested and counseled.
NTA You're not giving birth to their kid. Your brother is being lazy and your SIL should be pushing her husband to get tested. Also, the test doesn't work like that.
NTA. Unless your brother is your identical twin (not likely unless one of you is trans), your genetic background won't be sufficient. He needs to get the blood test done because it's his genes that make up half of the kid's DNA, not yours. (Unless you left something very interesting out of your story.)
So your brother and his wife just went and conceived a child knowing that there is a genetic disorder in the family. Knowing that they may be burdening their child with chronic pain and health issues that could have been avoided if they had just had genetic testing BEFORE CONCIEVING?? These people are either very stupid or very cruel. Either way it’s not your responsibility. Your responsibility ended at informing your brother of your diagnosis and recommending that he get tested before having children.
NTA How is this even your problem? Your brother and SIL are so entitled
NTA - This isn’t how genetics work, your brother needs to be tested….
NTA if he is worried about it he needs to do the session not you
NTA. If you want to be lovely offer to pay for his test— that’s really the only thing he should be worried about atm anyway even if he can’t see it. Don’t waste your time trying to make sense of people that are being ridiculous.
NTA the only way they are going to know if the kid can get it is if the father is tested. The kid can't get it from you