To not do genetic testing

@LavenderSweetPeaI’m sorry you had a difficult journey and loss too ❤️‍🩹 🫂

The test takes about a month to come back. In our case if we had had a matching mutation we would have screened our frozen embryos for that specific mutation. It’s called PGT-M testing. You can’t test embryos for every specific mutation, but if you know you have one you can test for it

It’s such a personal thing. For some people knowing and waiting for test results is horrible, for others not having more certainty is horrible.

I’m not sure if you have ever done IVF but I kind of felt the same way about PGT-A testing (where they test for chromosomal abnormalities in an embryo before transferring). My friend didn’t want to do the testing before transferring the embryo to avoid heartbreak in case it wasn’t chromosomally normal. To me it was a way to avoid a worse heartbreak having had one miscarriage already, I wanted to do what I could to reduce the chance of repeating and to at least check the embryo was chromosomally normal before transferring

We were told btw the chances of us having matching mutations was 1 in 10,000. I don’t know if that helps! I still wanted to do it even with that

Testing and knowing is one thing - if you then want a baby, you would be doing IVF and screening embryos to see if they carry the gene, discarding those which do.

I'm not sure how that works tbh. Is it available on the nhs? Do you have to self fund? How do you access it? Do you want to do IVF?

Don’t be daft. Save your money.

This developing trend for screening embryos and all the screening out disabilities etc is eugenicist and gruesome.

I would add to the above to avoid misinterpretation - when I say we won’t have biological children that is not because we do not want an “ill” child - in fact we are pursuing adoption and highly likely to be parenting a child with additional needs. However, there is a big difference in my opinion in doing the best you can to meet the needs of your child, and having knowingly caused that scenario for them.

@AntParade You share your experience so eloquently, thank you for doing so. My heart goes out to you x

We have needed to undergo genetic counselling after a cancer gene being identified in the wider family. Following this we have decided we cannot have biological children, as we cannot face the guilt of knowingly and actively risking passing that on to offspring. IVF is not for us for a number of reasons.

Hand on heart I wish we’d never known we carried this gene - we cannot do anything about it so now we just live with the burden. If we had not known about it I wouldn’t have felt guilty if children also carried it - as you can’t prevent that - but now we know how could we take that risk with their health.

I think you would be crazy to invite this guilt and turmoil into your life. I actually find the idea you’d do this so frivolously a bit offensive - which I appreciate isn’t wholly rational.

There are hundreds of reasons you could end up with a very ill or disabled child - ultimately you have to decide if you can manage that if you have a second child. You cannot safety plan for every scenario.

That could generally feel worrying, but if you've a healthy 2 year old and are planning on TTC a second child with the same father, there's no definite need to worry? Unless there's something else?

I wish I had done a family screen for neurodiversity. And what I mean by this was open my eyes and realise that my slightly oddball family and dh's slightly oddball family were actually all ND and it would be likely that our DC would be too and that they would be hard work!

It wouldn't have put me off having DC but it could have mentally prepared me for them not sleeping through until 5 years old and having to ask them to find their shoes x 80000 in the morning.

We had genetic testing. It showed that I had a dodgy gene, dh had a different dodgy gene and ds4 had both dodgy genes. Our other dc weren't tested and we still don't really know what it means for them, ds4 or any of our future grandchildren.

I would not do it (BTW your title and then your stated options for YABU / YANBU are opposite)

I think it's not unreasonable to not do it.

I would only do testing if I had a direct relative with a life limiting condition. We did karyotyping for a translocation, because DH knew he carried it but didn't have any further details and his mum no longer had the paperwork - we did then have genetic counselling to find out what it actually meant. It seems that we have a low chance of carrying a child with unbalanced translocation to term (this is the main risk of BT) but we do have a higher than usual chance of miscarriage, it seems to happen very early, around 6 weeks or before implantation, we had several before conceiving DC.

We don't know if the DC have the balanced version of the translocation, because we were not allowed to test them without having amniocentesis, which I didn't want due to the risk (and selfishly, because of the massive fucking needle - I would have had it if a scan had indicated it was a good idea, though)

TBH DS2 has ADHD and probably autism likely both inherited from me. You can't see that on any genetic test. Would it have made any difference? I don't know. I wouldn't want to be without him, he is awesome, but I won't lie it is challenging. He is likely to live independently, I don't know how I would have felt if that was not the case.

I do feel that these companies prey on people's fears and I think that is an especially shitty way to make money, so I don't like to encourage them.

@LavenderSweetPeawe did genetic testing, a test called the pan ethnic carrier screening

my obstetrician mentioned it as a non routine test and I straight away said yes. He said it was typical that people who have been through my experience of TTC (endometriosis, surgery, IVF, miscarriage) to view more information as a good thing. He also said that type of journey can remove the belief that everything always goes to plan - there’s definitely some truth in this being why I wanted to do it.

My husband has some hereditary dysplasia’s on his side but they’re typical due to historic intermarriage on his Kurdish side. I’m from a completely different ethnic background so the chances of having the same mutations were low. Turned out to be correct

I still wanted to do it. We actually live opposite an academy for severely disabled children and maybe that played on my mind. I think also it had been a hard journey getting here, as mentioned, and I don’t assume things will be smooth sailing

My DH wasn’t sure about it either btw. He stalled in the appt and the obstetrician asked if he could help with his concerns. He stuttered a bit and then said “what does the test involve” and the dr said oh it’s just a blood test. He then completed the forms. My DH said he needed to go straight to the office and would do it another day. The dr said we got a discount for going in together 😂. So we got him over the line in the end

My DH though would find the idea of a defective gene very hard as he has OCD and has found various quite basic tests throughout the IVF process mentally difficult

Good luck with everything xx

There are pros and cons I think. I have a genetic condition, no one in my family had been symptomatic, though I am quite badly affected. When my eldest child was born 20 years ago I had genetic counselling before and was told the chance was extremely slim, things have changed in 20 years and all three of my children have the condition, two mildly and one severely. They will also pass this onto any children they have, it is both AD and AR, so will have to have fertility treatment when they get older if they want children without the condition. The issue is genetics are developing all the time, I only had my genetic diagnosis five years ago, and they may not be able to identify something that may present in the future. It’s difficult but I think I would.

I wouldn't do it.

My youngest has a chromosome abnormality, observed at birth. The blood test for it however is apparently only about 70% accurate because it's not common, and their bloods said no. So we technically have no diagnosis (but every specialist consultant we have seen has said "oh yes, clearly")
So my point is you just can't tell. Chances are you'll get a whole lot of "possibles" which will just worry you.

You can test for the known or common 1000 but still.get oneof the 6,000 to.10,000 disorders or something else de novo.
Having a child is a lottery
If you do not want at any cost any kind of issue do not get pregnant.
(Not to mention any child can get sick or disabled in life but you do not plan you deal with it if it happens)

I wouldn't bother. Screening at birth missed a rare form of CF in my brother. He was diagnosed in his 30s! Has just had his first child, CF ruled out through thorough screening of the embryo, then some congenital heart issues were possibly sighted during the pregnancy, then others in days after birth, then fully ruled out a week later through more rigorous testing. Exhausting and stressful and just shows there's an infinite range of things that can go awry and get missed in the incredibly thorough testing he had as a person with CF.
Unless you've a family history or know you're a carrier of an abnormality I'd crack on. You've had a healthy child which is pretty good evidence that you're healthy too.

If you have no family history of any genetic conditions, why has it crossed your mind? My daughter was born with a rare genetic condition that affects less than 0.001% of the population. It was a sporadic mutation, so even if DH and I had been tested, nothing would have come up because it isn't something we've passed on to her, just something than randomly and unfortunately happened to her. So you may pay £££ and it would be pointless anyway for some conditions.

In your situation with no history of genetic conditions no I wouldn't do it.
I wouldn't trust the results from the test you describe either. How sure are you that it is accurate?
But also your test could show nothing up and you could still have a child with a disability.
There are no guarantees.

Are you from a particular ethnic background and the people you are speaking to also from a particular ethnic background?

Most people are carriers for a genetic condition. I for example am a carrier for a genetic condition that's absolutely horrendous and any children born with it are life limited, dying by the end of primary school. I found this out by chance as I was being (NHS) tested for something else and said I was happy for incidental findings to be disclosed.

The testing you mentioned tests for around 1000 genetic diseases. There are many, many more genetic syndromes that are unknown. Children are known as SWANS i.e. syndromes without a name. To test if you are a carrier for one of these, you need to know what it is in the first place. There are also de novo genetic mutations that happen. The parents aren't carriers for the disease but it appears in the child.

Even if both DH and yourselves are carriers for the same genetic diseases then theres no guarantee that you WILL have a baby affected. It all depends on things like if it is autosomal dominant (1 in 2 chance), autosomal recessive (1 in 4 chance) and then things like penetrance.

Honestly OP, I wouldn't bother.

I totally understand that there are specific occasions where genetic testing is absolutely the right thing to do but I think that companies that offer it to people who don’t have a specific reason to need it are just preying on vulnerable and anxious individuals to make money.

I would consider it if I had a family history of genetic conditions but I wouldn’t if not. I have 3 children and it didn’t occur to me. If you do the genetic testing and it’s positive, would you abort? If the answer is no then why bother?

If you have no family history of any genetic conditions there’s no point. Unless you have a very small biological family, it’s highly unlikely you're both randomly carriers for the same thing.

It’s not a rational thing to do in your circumstances - what’s driving this?

We did genetic testing, but it was specific for CF and was done by the NHS.

My husband knew he was a carrier, he tested a long time ago as he has cousins who have CF.

My test was negative. We wanted to know so we would be prepared.

Treatments have come on massively since I tested. Our DC will need to decide in due course if they want to test.

You could test for all those things and still end up in the same situation OP, nothing gives you any guarantees. If it’s such a deal breaker it may be best not to TTC regardless