Do you think this couple is unreasonable?

[corgiology]

www.itv.com/thismorning/hot-topics/branded-cruel-for-having-our-daughter-alice-treacher-collins

[fiveacres]

Well, not really - I don't know about anyone else, but I haven't worried particularly about any of the eggs I haven't used over the years or the sperm that wasn't as fast!

But to answer MrsD's question, I don't think that would be selfish, no. It wouldn't be something I'd personally do though.

[Kewcumber]

When I had IVF all viable embryo's were reimplanted, the only ones that were "discarded" were deemed not good enough quality.

Who knows if they had exactly the same issue - maybe they had the choice of minimal eggs to test so it was still a choice of implant or not implant/baby or no baby rather than the luxury of whole rafts of eggs to be tested.

We have no idea of the details involved.

[BettyCatKitten]

I agree with Ptomely last post.

[PsychopathOnTheCyclepath]

Also anyone with an iota of genetic knowledge will know that the severity of these conditions isn't guaranteed. The dad may not suffer too much with TCS, however, the daughter may not be that lucky, and her genetic make up might mean that she does experience the more severe side of this condition. Would it still be ok then?

[ThisTimeIAmMagic]

But why would someone choose to deliberately risk inflicting a painful, debilitating condition on their much loved child when it was completely avoidable?

There's no need for hysteria about sterilising people - no one is arguing for that. But the technology exists to allow this couple to have a child without this horrible condition and instead they inflicted it on her. She will spend the rest of her life living with it.

There are so many things we can't control about our children's health - the awful accidents and illnesses we can't do anything about. No parent wants to see their child enduring these conditions so why would you actively choose to embrace a completely avoidable condition?

[MaidOfStars]

Let us take screen out of the equation for a moment.

Impossible, it is the single factor that is creating this debate. Without the screen, there is not clear cut choice to be made and many people would be far more handwavy.

[Kewcumber]

So are you in favour of forcedn compulsory genetic screening?

No. Why the fuck would I be?

Ummm.... because you said you lectured in the area of ethics around genetic screening, I thought you might have an informed opinion.

[MaidOfStars]

I don't know in this case but perhaps the father's mutation is unknown and therefore screening is not possible

They deliberately chose not to screen, suggesting that it was possible i.e. his mutation status is known (therefore TCOF1)

[ThisTimeIAmMagic]

How much is this little girl suffering Psycho?

Enough to make her life not worth living?

Enough to make her wish she was dead?

MrsDV you're missing the point. The suffering she faces from this particular condition was completely avoidable. There is so much suffering we cannot control for our children (and for you because I know a little of your experience in this regard) but this suffering was preventable. I genuinely don't understand how any parent could willingly make this choice for their child without it being somehow selfish or self-validating.

[Bearsinmotion]

I'm torn here too. I have a genetic condition, the gene for which was identified between DC1 and DC2 being born. However if the DC had the gene they wouldn't necessarily have the condition. As it is there is no embryo stage screening that would tell me if they had the gene. But if there was a way where I could have ensured through screening that they would not have the gene I would have done it. As a person with a disability I don't consider myself worth less than anyone else, but if I could prevent my children suffering I would. Of course I couldn't guarantee they didn't have another condition, but that is a different issue.

[BluebeardsSidekick]

Theirs is not a choice I would have made. I would consider it unkind to knowingly bring a child with a disability which will cause them difficulty and distress into the world.

[Kewcumber]

There's no need for hysteria about sterilising people - no one is arguing for that

I wasn't at all hysterical thank you.

I was wondering how you enforce one posters view that they shouldn't be "allowed" to have a child with a risk of TCS.

I guess (as I subsequently said) you can only enforce it when people are having IVF. But you have to decide then exactly what you enforce across the board.

[MaidOfStars]

Ummm.... because you said you lectured in the area of ethics around genetic screening, I thought you might have an informed opinion

I do have an informed opinion. It's this: compulsory/forced genetic screening is unethical.

Were you asking for my opinion out of genuine academic interest or trying to throw some mud at me? I assumed the latter but apologise if it was the former

[fiveacres]

I feel that saying people who feel the couple should have gone for screening 'are in favour of forced sterilisation' IS hysterical!

[PsychopathOnTheCyclepath]

I've no idea if the little girl is suffering, I assume from the overview of TCS it's not a pain free existence. And I just wonder why any parent would allow that to happen to their children.

It was avoidable (because of the IVF) then why choose to go ahead with the potential disability when it could have been avoided?

[MaidOfStars]

It is not impossible. This is not an ethics committee. Its a discussion on a parenting forum

It is impossible to remove the screening aspect form this specific debate because it's the very essence of the debate (and making a judgement call on it, should posters wish to do so). The screen offered them a choice to have a healthy child. They chose not to. That's what the discussion is.

Otherwise, the answer to your question:
If screening is not available and a couple have a chance of having a baby that shares their condition the only option would be for them NOT to have a child. If they took the chance they would be selfish and beyond cruel?

...would be a resounding (I think) "No". And there it would end.

[Oxfordblue]

Yes I do - because for me you always want something better for your child, not to pass down a known genetic disorder. I'd go so far as calling them selfish / if you want kids that much, adopt.

....just as I was thinking about not being so opinionated...

[Moreisnnogedag]

The father has experience of his severity of TCS. Absolutely he is living a full life and so I can see why he wouldn't see the need for testing. But TCS has variable severity and having a parent only moderately affected offers no protection against the very severe problems that can happen.

I think at the stage of choosing embryos I would have screened, much in the same way as I wold screen for CF for instance. I say this as someone who opted out of Downs screening because I wouldn't do anything about it.

[PsychopathOnTheCyclepath]

That's exactly what I was trying to say MoreIs.

Several people have said the father is living with TC and he isn't that bad, but there's no guarantee that the daughter will have the same level of severity.

Had they been able to conceive naturally I wouldn't even be debating this. But it's purely because they did have a choice, that I've got an opinion.

[MrsMcColl]

I have a child who is severely disabled with a genetic condition. Spontaneous genetic mutation, not usually carried in families. So no option of screening.

But if I had known she might have this condition, and had a screening test been available, I would absolutely have chosen it, for the reasons Maid has explained.

It doesn't mean that I don't totally love her and want the best for her. Or that I think people with disabilities shouldn't exist. And of course, as MrsDV says, no one can guarantee anyone a life that is free of illness or disability. But if I could have chosen to have a child whose life would not be so full of physical challenges and pain caused by this condition, it would have been a no-brainer. (And that choice would have been for my other DC too - her life is often turned upside down by her sister's condition.)

I wouldn't judge anyone who screened. And while I don't exactly judge this couple for not screening, I do wonder if they made the decision more in their own interests than in the child's.

[sconequeen]

Had they been able to conceive naturally I wouldn't even be debating this. But it's purely because they did have a choice, that I've got an opinion.

But if they had conceived naturally, they would still have known there was a good chance of the condition being inherited.

IVF gave them the opportunity of screening the embryo, which they declined for whatever reason.

If they had done the screening, they would then have had to decide which embryo(s) to use - implying a decision of discarding the embryo(s) which showed the genetic problem. It is not a case of engineering an embryo to remove the problem as some PPs seem to imagine.

Some people feel able to make the decision to discard embryos with genetic problems (in the same way that some people will terminate a pregnancy where, for example, Downs Syndrome, is detected). However, there are other people who do not feel able to make this decision, or who do not feel that the decision to discard embryos is right.

I feel that the IVF issue in this case is a bit of a red herring.

I would not assume either that, if the IVF was NHS-funded, that screening would automatically have been funded. And if the couple were paying for their treatment themselves, the cost of screening would increase the cost of the cycle greatly, and perhaps prohibitively.

I feel very fortunate that I have not been placed in this position, and would want to think through the issues a lot more before making a judgement.

[Pseudo341]

I have a genetic, dominant (50% chance), disabling condition. I'm not too bad with it but it can be really debilitating. It's too soon to be sure but it does look like our youngest might have it, she's too young to cooperate with the necessary physical examination.

There's no way of testing for it genetically as they simply don't know what gene is causing it yet so we couldn't prevent it being passed on even if we'd had IVF. Both my kids were conceived naturally but if I could have had avoided passing it on by screening with IVF I'm pretty sure I'd have done so (don't know much about IVF so don't know if there are any down sides, obviously I'd have looked into it more thoroughly if we were going down that road).

I'm genuinely baffled as to why you wouldn't screen for such a condition if you were already having IVF. It may not always be that bad to live with but it's clearly easier to live without it if you have that option. Disability is detrimental to quality of life no matter how well you handle it and I want my kids to have the best quality of life possible. Why would you leave your kid to struggle when you could so easily have avoided it?

The only thing I can think of is if there were a possibility of the testing process damaging the embryo. Does anyone know if it could? I'm genuinely clueless on that. I declined the 13 month screening because there's no way I'd have risked a miscarriage by getting the next test even if we'd had a worrying result.

[Theoretician]

whether you think they are unreasonable or not depends on whether you think people with disabilities are less worthy of existence than those without

Haven't yet read the whole thread, I was going to respond to someone else who had expressed the same fallacy, but thought you expressed it more pithily.

The fallacy is that an adult (or even child) human being is of the same worth as an embryo, or an unborn baby, or even a born baby that's very young. (There was a controversial medical ethics paper a few years ago that said killing a baby under the age of one was morally equivalent to abortion.)

Some (religious) people believe this, but society in general does not. For example, in the UK most of us wouldn't say it's OK to let a pregnant women die if an abortion would save her. In countries (Ireland?) that believe the contrary, the unborn baby is considered of equal worth to the adult mother, therefore it's OK to let the mother die if that might save the baby. (Or even if the baby is going to die anyway, it's not OK to kill it to save the mother.)

So, to get back to the argument, preventing or aborting a baby with a disability is only equivalent to saying adults with the same disability are worth less if you think that in general there is no difference between the value of an adult life and that of an embryo/baby.

I would be quite insulted if someone said I was no different to an embryo.