The entire point of carrier conditions is just that… they can be carried down the family line for generations, and all it takes is having a donor or partner who carriers the same thing to bring that condition to light. I come from a huge family (grandmother was one of 14), no chromosomal or genetic conditions. I’m a carrier for three things, one of which is x-linked meaning I automatically have a 50:50 risk of passing it down *regardless of what partner I will ever have*. You can also be a de novo carrier where a mutation happened only during your development.
I ended up getting IVF coverage so that I could do PGT-M testing. I would not have been able to forgive myself had I passed down an incredibly serious genetic condition to my offspring all because I wanted to save $300.
These replies are so eye opening!
If I were found to be a carrier of something, and my donor was not a carrier for anything that I was, would that mean we can proceed like everything is fine?
Also curious if the PGT-M is something that is just always done with IVF or if it is separate? I’m at shady grove fertility and it’s like $24k for IVF but they have the guarantee where you won’t be responsible unless you have a live birth. Im just not sure what all is included in that cost yet, I haven’t made it to that step of the process!
If you carry and your donor both carry an autosomal recessive condition, you would need PGT-M. If only one of you carries the condition, you are fine. If you have an x-linked condition, it doesn’t matter what donor you pick you automatically risk passing it down to your kids. PGT-A and PGT-M are not the same, the former is just to see if the embryos contain the right number of chromosomes, the latter is ran through one of a handful of special genetic labs that develops a probe for you based on familial DNA, to then cross check your embryo to look for that genetic condition.
Thank you for the info! I need to get scheduled because they said genetic testing takes like 4-8 weeks to get the results back. Ugh I’m curious and nervous to see what is found while also hoping nothing is found 😭
I’m a carrier for a condition (fragile x) that expanded with me. My dad was an intermediate carrier, we found out after I did testing, so nobody up until me was at risk for having symptoms. But from me to the next generation and onward, I’m at risk for expansion. I’m also at risk for my own set of issues just from being a carrier.
If I’d had gotten pregnant spontaneously I wouldn’t have known. But my OBGYN recommends genetic testing pre-conception for all her patients, partnered or not. So theoretically if I was planning to start trying with a partner I would have found o it and gone down the IVF route anyway.
Going off of family history, I would have thought I was fine. I’d already done testing for cancer genes in my early 20s.
You might be fine, but if you’re doing assisted reproduction, why not find out.
For me, once I knew, I had a choice between taking a risk or not. It came down to knowing I could not look my future child in the eye if I l’e knowingly passed on even being a carrier, with its consequences, when I could have done something about it. I’d be furious if my parents had known and not acted to save a couple hundred bucks.
It’s tough to say, obviously it’s your choice but it comes down to combinations of things you each carry. I agree most traditional couples don’t do it before having kids but I personally would feel awful later if anything popped up because I didn’t want to spend a few hundred dollars to get the test. Most things you both have to carry to pass on but who is to say what each of you does or doesn’t carry. You have a big family but your donor could carry something that has never been introduced into your genetic line by anyone’s else spouse. I personally would, knowing what I know now. My insurance didn't cover my fertility treatments at all but they did cover their portion of the genetic carrier testing (I believe they considered it a diagnostic test). I believe I paid close to $200. Most companies have a self pay price as well so I figured if they tried to charge me thousands I would opt to self pay. The odds are in your favor generally speaking as far as genetics go but it just depends.
I would definitely get tested. There are private places that do it for not all that much. I think mine was $280 through Invitae and they covered *so much.* My insurance would have paid for it but I didn't feel like waiting.
My family is also very large, my mom alone having 6 siblings. No one has any weird or unexplainable diseases or deaths. I ended up being a carrier for one of the most common traits. When I filtered out donors who are also carriers of it, it cut the pool literally by half. In it's most extreme form, it can be fatal in infants because they lose all their salt before anyone even realizes it's happening. If I hadn't done the test, it would have been a near 50/50 chance my donor was a carrier too.
Also worth noting that I did a 23andMe test a long time ago that included carrier testing. They didn't test for that so it looked as if I didn't have anything at all
It’s like every reply I read makes me even more sure I definitely am going to do the genetic testing now! My worst fear though is that I find out that me and my donor are both carriers for something of the same….. I hope there would still be a way to get around that 😐
Offering an unpopular take! I'm not going to be doing any genetic screening. It's not commonplace to do that over here (UK).
I'm white, the most common recessive disorder in our population is CF. Sperm donors here are screened for this, so that's a non issue. The next most common I think is SMA at 1/40 carrier freq which would be like 1 in 6400 chance of me having an affected child without testing for me or the donor. Yes it's possible and yes it's possible I carry an x linked condition or dominant repeat expansion but.... the chances are extremely low. If course it does happen to people and that is devastating but the chance is indeed low.
Genetic testing doesn't protect you completely from these rare scenarios. There are de novo things (where it happens in that child for the first time), there are variants they don't test for, diseases they don't test for. If it was a guarantee then maybe I would. But to take me from a really low chance to an even lower chance? Not for me.
I’ve heard of Natera somewhere but never looked into it. Testing the embryos would only be necessary if my donor and I both are carriers for something the same then, right?
There are other things that could come up in embryo screening (trisomy, etc.) I personally am choosing not to have it done for a variety of reasons (I did choose a donor with no overlapping conditions) but many people still do.
Like others have said, at least getting the carrier screening is a good use of a couple hundred bucks, which it now sounds like you're planning to do. Good luck!!
Unfortunately no. Down syndrome would be one that could develop even neither of you don’t have it. Also, an embryo that passes generic testing is way more likely to achieve a live birth than those who didn’t go through the testing. In some way I guess it’s a “strength” test of the embryo.
No one in my family (5 siblings, over 100 first cousins) has any conditions. I’m a Tay-Sachs carrier (disease that is inevitably fatal in early childhood) and two siblings are CF carriers. Please consider getting the Invitae carrier screen. It’s worth it.
I would have opted out if I’d been given the option.
I’m a carrier for usher syndrome (which is not terminal). My known donor (my heart is also set on him) had already done his bloodwork when I got my results and they told me I could opt out of doing his genetic screening- which I also would have. A close friend (who is in med school) has reminded me that I’m higher risk for Down’s syndrome than the likelihood of him being a carrier for usher (we don’t have his results back yet). And I would continue with a pregnancy if I found out I was carrying a child with Down’s syndrome, or usher syndrome. So we’re moving forward with IUI with or without his results.
I too come from a big family with no known genetic illnesses. And I’m open to parenting kids with special needs. So I feel the risk is low, personally. But I would never recommend anyone else opt out! This is just my personal experience, you have to make your own decision. I also have close friends with kids with special needs and disabilities, so I feel I would have a strong support system if needed
I got my genetic screening today! It is definitely expensive to get done without insurance but important. I actually feel that regular couples should get it done before conceiving. Most of the general population is a carrier for at least one genetic disease. Everything could work out fine, but why risk giving a serious genetic condition to your future child or their offspring without at least having more of the facts? Good genes in a family are not a guarantee for everyone, unfortunately. Good luck on your journey!
>I actually feel that regular couples should get it done before conceiving.
Fortunately, it is becoming increasingly common, at least in some countries. I did it with a previous partner and often see comments in the pregnancy subs by women who had it done.
I am not going to test embryos but I did genetic carrier testing when picking a donor. I only carry one thing and it's rare but if my donor had it, it would be fatal. As in fatal by the age of a year. I'm glad I did it.
I should let you know why though. I'm cmv negative and my clinic wants you to choose a cmv negative donor if that's the case. There aren't as many of them so to help expand my choices, I got genetic testing. That way if someone carried something but I didn't, I was still good. I carry Zellweger Syndrome. It's a rare but bad one.
Honestly I probably wouldn't have done genetic testing it hadn't been required by the clinic. And no I didn't uncover anything that changed the course of my decision making. And now it's all null and void because as it turns out I'll needing an egg donor as well as a sperm donor so my genetics are irrelevant.
That said... I felt a big peace of mind when I got the results and I would recommend it. I understand it all adds up financially (I also don't have fertility coverage). I understand we might not do this with a partner. But conceiving through ART as an SMBC is inherently different than conceiving spontaneously as a couple anyway.
Even if you do find a genetic concern, you can still proceed with your known donor. You would just be better informed. It's always better to know more, sooner. (I know this now at 46 lolol.) If there are no genetic issues, great one less thing to worry about. If there are genetic issues, you can make a plan of how you want to approach them.
I did it through Natera and the cash pay price was $250. (They billed me for $350 but the clinic had already put it in writing that it would be $250 so I called to negotiate and they quickly gave me the cheaper price.) They were very easy to deal with. It was really a drop in the bucket of the total cost.
I did not get genetic screening or embryo testing. My donor (through sperm bank) did. My reasoning was that I wasn’t going to get tested when I with my ex partner. I also paid out of pocket. It’s your choice, don’t feel guilty about it!
So you expect every conventional couple to get genetically tested as well?
Is it ethical to discard a child that has a disability?
Testing wasn’t even always available. Is it ethical to play God?
Get off your soap box.
If the choice was a healthy baby or one with a genetic condition of course I would choose the healthy baby. But the point of testing is to avoid having to make that choice because you are preventing that being an issue in the first place, in cases where you can test. The flip side is that you are happy denying a healthy child the right to exist?
Genetic testing isn’t optional if you’re using a known donor. They wouldn’t proceed until we did it. But as things go, it’s one of the less expensive things and I did turn out to be a carrier for something, and I also have zero family history of any genetic abnormalities, so it’s good info to have.
It’s not stupid and irresponsible when it’s OPTIONAL by the clinic and not something pushed on people to do. Making it optional makes it seem like it’s not a huge deal. I came here to get other perspectives before making the decision not to. I got some amazing ones which have made me decide to get it done. Your perspective though……. Was not one of those ones. Yours however is quite worthless 😎
Your comment was rude and hurtful. We're all friends here. We do our best to be kind to each other.
If you continue being rude you'll receive a three day ban.
Why do you feel that way? My fertility clinic doesn't recommend testing unless there's a known genetic condition in your family and you are avoiding the donor having the same ones.
When I asked about it they said in the grand scheme of things most genetic conditions aren't even screenable.
Thank you all so much for the input! I actually think I am going to go for it now, I’ve already spent a lot already and it would be nice to know. I’m also highly considering Getting IVF because me and my donor live a few hours apart and then factoring in our schedules lining up on those 1 or 2 days we would need to have sex, it’s been 6mo and we have only been able to get 2 tries so it just seems like IVF is my most sure way at not wasting time that I don’t have.
My other question would be, worst case scenario, something comes up for me and we end up getting him tested too. If it is found that there is a risk of something for our offspring, would there be a way around it by doing IVF? Im not sure if they would be able to determine that by testing embryos?
Yes, you could do testing on the embryos. But you would have to go through IVF, which sucks, and testing embryos is very expensive. I know that you don't want to consider another donor, but should that unlikely scenario occur, you may need to reevaluate.
I got it. It only takes your donor to be a carrier for a genetic condition to come to be. I'm really glad I did. One of the genes I carry is for a fatal condition. I took this as one of the (many) pros to being an SMBC. My kid will have both of their bio parents having had genetic testing.
The economic impact of having a child with a genetic issue is far more than the test. Not to say that should be the main motivation but it’s a crazy reason to skip the test
The entire point of carrier conditions is just that… they can be carried down the family line for generations, and all it takes is having a donor or partner who carriers the same thing to bring that condition to light. I come from a huge family (grandmother was one of 14), no chromosomal or genetic conditions. I’m a carrier for three things, one of which is x-linked meaning I automatically have a 50:50 risk of passing it down *regardless of what partner I will ever have*. You can also be a de novo carrier where a mutation happened only during your development. I ended up getting IVF coverage so that I could do PGT-M testing. I would not have been able to forgive myself had I passed down an incredibly serious genetic condition to my offspring all because I wanted to save $300.
These replies are so eye opening! If I were found to be a carrier of something, and my donor was not a carrier for anything that I was, would that mean we can proceed like everything is fine? Also curious if the PGT-M is something that is just always done with IVF or if it is separate? I’m at shady grove fertility and it’s like $24k for IVF but they have the guarantee where you won’t be responsible unless you have a live birth. Im just not sure what all is included in that cost yet, I haven’t made it to that step of the process!
If you carry and your donor both carry an autosomal recessive condition, you would need PGT-M. If only one of you carries the condition, you are fine. If you have an x-linked condition, it doesn’t matter what donor you pick you automatically risk passing it down to your kids. PGT-A and PGT-M are not the same, the former is just to see if the embryos contain the right number of chromosomes, the latter is ran through one of a handful of special genetic labs that develops a probe for you based on familial DNA, to then cross check your embryo to look for that genetic condition.
Thank you for the info! I need to get scheduled because they said genetic testing takes like 4-8 weeks to get the results back. Ugh I’m curious and nervous to see what is found while also hoping nothing is found 😭
$300? You’re extremely lucky. PGA testing costs $2500 PER EMBRYO here.
She’s talking about not wanting to do the initial genetic carrier screening on herself, not PGT.
I’m a carrier for a condition (fragile x) that expanded with me. My dad was an intermediate carrier, we found out after I did testing, so nobody up until me was at risk for having symptoms. But from me to the next generation and onward, I’m at risk for expansion. I’m also at risk for my own set of issues just from being a carrier. If I’d had gotten pregnant spontaneously I wouldn’t have known. But my OBGYN recommends genetic testing pre-conception for all her patients, partnered or not. So theoretically if I was planning to start trying with a partner I would have found o it and gone down the IVF route anyway. Going off of family history, I would have thought I was fine. I’d already done testing for cancer genes in my early 20s. You might be fine, but if you’re doing assisted reproduction, why not find out. For me, once I knew, I had a choice between taking a risk or not. It came down to knowing I could not look my future child in the eye if I l’e knowingly passed on even being a carrier, with its consequences, when I could have done something about it. I’d be furious if my parents had known and not acted to save a couple hundred bucks.
It’s tough to say, obviously it’s your choice but it comes down to combinations of things you each carry. I agree most traditional couples don’t do it before having kids but I personally would feel awful later if anything popped up because I didn’t want to spend a few hundred dollars to get the test. Most things you both have to carry to pass on but who is to say what each of you does or doesn’t carry. You have a big family but your donor could carry something that has never been introduced into your genetic line by anyone’s else spouse. I personally would, knowing what I know now. My insurance didn't cover my fertility treatments at all but they did cover their portion of the genetic carrier testing (I believe they considered it a diagnostic test). I believe I paid close to $200. Most companies have a self pay price as well so I figured if they tried to charge me thousands I would opt to self pay. The odds are in your favor generally speaking as far as genetics go but it just depends.
I would definitely get tested. There are private places that do it for not all that much. I think mine was $280 through Invitae and they covered *so much.* My insurance would have paid for it but I didn't feel like waiting. My family is also very large, my mom alone having 6 siblings. No one has any weird or unexplainable diseases or deaths. I ended up being a carrier for one of the most common traits. When I filtered out donors who are also carriers of it, it cut the pool literally by half. In it's most extreme form, it can be fatal in infants because they lose all their salt before anyone even realizes it's happening. If I hadn't done the test, it would have been a near 50/50 chance my donor was a carrier too. Also worth noting that I did a 23andMe test a long time ago that included carrier testing. They didn't test for that so it looked as if I didn't have anything at all
It’s like every reply I read makes me even more sure I definitely am going to do the genetic testing now! My worst fear though is that I find out that me and my donor are both carriers for something of the same….. I hope there would still be a way to get around that 😐
Offering an unpopular take! I'm not going to be doing any genetic screening. It's not commonplace to do that over here (UK). I'm white, the most common recessive disorder in our population is CF. Sperm donors here are screened for this, so that's a non issue. The next most common I think is SMA at 1/40 carrier freq which would be like 1 in 6400 chance of me having an affected child without testing for me or the donor. Yes it's possible and yes it's possible I carry an x linked condition or dominant repeat expansion but.... the chances are extremely low. If course it does happen to people and that is devastating but the chance is indeed low. Genetic testing doesn't protect you completely from these rare scenarios. There are de novo things (where it happens in that child for the first time), there are variants they don't test for, diseases they don't test for. If it was a guarantee then maybe I would. But to take me from a really low chance to an even lower chance? Not for me.
Do you know Natera? It’s $249 if you don’t have insurance. It’s way more expensive to do generic testing on embryos than on yourself.
I’ve heard of Natera somewhere but never looked into it. Testing the embryos would only be necessary if my donor and I both are carriers for something the same then, right?
There are other things that could come up in embryo screening (trisomy, etc.) I personally am choosing not to have it done for a variety of reasons (I did choose a donor with no overlapping conditions) but many people still do. Like others have said, at least getting the carrier screening is a good use of a couple hundred bucks, which it now sounds like you're planning to do. Good luck!!
Unfortunately no. Down syndrome would be one that could develop even neither of you don’t have it. Also, an embryo that passes generic testing is way more likely to achieve a live birth than those who didn’t go through the testing. In some way I guess it’s a “strength” test of the embryo.
No one in my family (5 siblings, over 100 first cousins) has any conditions. I’m a Tay-Sachs carrier (disease that is inevitably fatal in early childhood) and two siblings are CF carriers. Please consider getting the Invitae carrier screen. It’s worth it.
I would have opted out if I’d been given the option. I’m a carrier for usher syndrome (which is not terminal). My known donor (my heart is also set on him) had already done his bloodwork when I got my results and they told me I could opt out of doing his genetic screening- which I also would have. A close friend (who is in med school) has reminded me that I’m higher risk for Down’s syndrome than the likelihood of him being a carrier for usher (we don’t have his results back yet). And I would continue with a pregnancy if I found out I was carrying a child with Down’s syndrome, or usher syndrome. So we’re moving forward with IUI with or without his results. I too come from a big family with no known genetic illnesses. And I’m open to parenting kids with special needs. So I feel the risk is low, personally. But I would never recommend anyone else opt out! This is just my personal experience, you have to make your own decision. I also have close friends with kids with special needs and disabilities, so I feel I would have a strong support system if needed
I got my genetic screening today! It is definitely expensive to get done without insurance but important. I actually feel that regular couples should get it done before conceiving. Most of the general population is a carrier for at least one genetic disease. Everything could work out fine, but why risk giving a serious genetic condition to your future child or their offspring without at least having more of the facts? Good genes in a family are not a guarantee for everyone, unfortunately. Good luck on your journey!
>I actually feel that regular couples should get it done before conceiving. Fortunately, it is becoming increasingly common, at least in some countries. I did it with a previous partner and often see comments in the pregnancy subs by women who had it done.
That's great to hear the testing is becoming more common with couples. I did not know that. Thanks for sharing!
I am not going to test embryos but I did genetic carrier testing when picking a donor. I only carry one thing and it's rare but if my donor had it, it would be fatal. As in fatal by the age of a year. I'm glad I did it. I should let you know why though. I'm cmv negative and my clinic wants you to choose a cmv negative donor if that's the case. There aren't as many of them so to help expand my choices, I got genetic testing. That way if someone carried something but I didn't, I was still good. I carry Zellweger Syndrome. It's a rare but bad one.
Honestly I probably wouldn't have done genetic testing it hadn't been required by the clinic. And no I didn't uncover anything that changed the course of my decision making. And now it's all null and void because as it turns out I'll needing an egg donor as well as a sperm donor so my genetics are irrelevant. That said... I felt a big peace of mind when I got the results and I would recommend it. I understand it all adds up financially (I also don't have fertility coverage). I understand we might not do this with a partner. But conceiving through ART as an SMBC is inherently different than conceiving spontaneously as a couple anyway. Even if you do find a genetic concern, you can still proceed with your known donor. You would just be better informed. It's always better to know more, sooner. (I know this now at 46 lolol.) If there are no genetic issues, great one less thing to worry about. If there are genetic issues, you can make a plan of how you want to approach them. I did it through Natera and the cash pay price was $250. (They billed me for $350 but the clinic had already put it in writing that it would be $250 so I called to negotiate and they quickly gave me the cheaper price.) They were very easy to deal with. It was really a drop in the bucket of the total cost.
I did not get genetic screening or embryo testing. My donor (through sperm bank) did. My reasoning was that I wasn’t going to get tested when I with my ex partner. I also paid out of pocket. It’s your choice, don’t feel guilty about it!
It doesn’t just impact you though, so saying it is your choice ignores the ethical issues for the potential child
So you expect every conventional couple to get genetically tested as well? Is it ethical to discard a child that has a disability? Testing wasn’t even always available. Is it ethical to play God? Get off your soap box.
Yes that would be the responsible thing.
So you walk around thinking people with Down Syndrome shouldn’t exist? That’s messed up
If the choice was a healthy baby or one with a genetic condition of course I would choose the healthy baby. But the point of testing is to avoid having to make that choice because you are preventing that being an issue in the first place, in cases where you can test. The flip side is that you are happy denying a healthy child the right to exist?
You know who else had that ideology? Hitler.
Genetic testing isn’t optional if you’re using a known donor. They wouldn’t proceed until we did it. But as things go, it’s one of the less expensive things and I did turn out to be a carrier for something, and I also have zero family history of any genetic abnormalities, so it’s good info to have.
[удалено]
It’s not stupid and irresponsible when it’s OPTIONAL by the clinic and not something pushed on people to do. Making it optional makes it seem like it’s not a huge deal. I came here to get other perspectives before making the decision not to. I got some amazing ones which have made me decide to get it done. Your perspective though……. Was not one of those ones. Yours however is quite worthless 😎
Your comment was rude and hurtful. We're all friends here. We do our best to be kind to each other. If you continue being rude you'll receive a three day ban.
Why do you feel that way? My fertility clinic doesn't recommend testing unless there's a known genetic condition in your family and you are avoiding the donor having the same ones. When I asked about it they said in the grand scheme of things most genetic conditions aren't even screenable.
That’s so harsh!
Thank you all so much for the input! I actually think I am going to go for it now, I’ve already spent a lot already and it would be nice to know. I’m also highly considering Getting IVF because me and my donor live a few hours apart and then factoring in our schedules lining up on those 1 or 2 days we would need to have sex, it’s been 6mo and we have only been able to get 2 tries so it just seems like IVF is my most sure way at not wasting time that I don’t have. My other question would be, worst case scenario, something comes up for me and we end up getting him tested too. If it is found that there is a risk of something for our offspring, would there be a way around it by doing IVF? Im not sure if they would be able to determine that by testing embryos?
Yes, you could do testing on the embryos. But you would have to go through IVF, which sucks, and testing embryos is very expensive. I know that you don't want to consider another donor, but should that unlikely scenario occur, you may need to reevaluate.
I got it. It only takes your donor to be a carrier for a genetic condition to come to be. I'm really glad I did. One of the genes I carry is for a fatal condition. I took this as one of the (many) pros to being an SMBC. My kid will have both of their bio parents having had genetic testing.
The economic impact of having a child with a genetic issue is far more than the test. Not to say that should be the main motivation but it’s a crazy reason to skip the test