Do you think this couple is unreasonable?

[corgiology]

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

[PsychopathOnTheCyclepath]

The girl may not exist - but then so many of the embryo's didn't survive in their IVF and I don't see anyone on here going all bleeding heart about those potential babies. The argument doesn't work if the couple have already undertaken IVF.

The point is that A child would still exist - a child who wouldn't have to suffer ill health and everything that ties in with having TCS.

To allow a child to be born when a quick screening process would have meant a condition free life? Cruel beyond words IMO.

[fiveacres]

I think that's why it's difficult when the child exists. I read a book once - probably a Jodi Piccoult or similar - about parents suing for damages caused to their daughter when she was born, resulting in a disability. I don't remember much about it other than quite a moving speech where the mother is directly asked 'would you rather your daughter hasn't been born' to which she of course answers no, because her daughter was born and does exist. I probably remembered it because I am terrible when pregnant and would go as far as to confess I don't like my children much in utero! Luckily, I turn into a doting mama once they emerge!

But there is a discussion to be had about the ethics here and that doesn't mean anybody wishes to go down the route of sterilising people or that disabled people are not worthy of love or respect.

[PsychopathOnTheCyclepath]

I'm happy to nail my colours to the wall.

I wouldn't knowingly have a child with a disability that will cause suffering. Whether that be TCS, CF or Huntingdons.

If I knew that these conditions were a possibility for my children I'd be screening as much as I damn well could.

It's not about the lives that already exist but about the new life that could be born condition - and suffering - free.

[PtolemysNeedle]

This is about choice. THEIR choice to have THEIR child.

For me, what it boils down to is that their choice to have their child could be inflicting pain and suffering, both physical and mental, on someone who isn't either of them. They aren't the people who will live with the consequences of that choice above anyone else.

I get that this child wouldn't exist exactly the same way as she is now if they had screened, and that's what makes it so difficult and emotive a topic now that she's here, but we didn't have the thread to be able to discuss these particular circumstances while the parents were still at making a decision and no child of theirs yet existed.

[BettyCatKitten]

I think that maidofstars has raised some very salient points, and also has knowledge of the consequences of this condition.

[Kewcumber]

But that exactly what some posters are arguing...

Not "I would screen if I had the choice I think it's cruel not to"

But "People should not be allowed to have babies with a potentially serious condition"

If the NHS had similar ethical concerns I would expect them to pick up the tab for the genetic screening part of the IVF.

[MrsHathaway]

They wouldn't have been sparing her from anything except being born - the embryo that became their daughter always had those genes. The choice they actually faced was whether or not to discard that embryo in favour of any they might have created that did not have the gene sequence in question.

After the fact, that choice is expressed as: "would you rather not have had your child but had another one instead?" which in 99% of cases will attract a hot NO in response.

Further, it asks the affected parent if s/he would rather not have been born. And again the answer is obvious. Very few people even who suffer would rather never having been born.

So I don't think the decision was based solely on finances and I don't think anyone should be obliged to screen for hereditary conditions. There are plenty of things in my family history or DH's that I'd rather the DC didn't inherit, but it's a huge leap to say I'd have wanted the opportunity to screen them out.

[MaidOfStars]

I'd say that the minor celebrity status of the father has something to do with this story being so public. He's been very open about his own life and put himself and his story out there. That's great. It seems that this feature might be a continuation of his story.

I can assure you that in the medical ethics of genetic screening (I teach this), Huntington's and CF are far more widely discussed.

[Kewcumber]

also has knowledge of the consequences of this condition I would argue that the parents have more

And additionally had extensive counselling before deciding - this probably included the percentage chances of the condition being severe, and the risks of the embryos being damaged by the screening or the screening being inaccurate.

[fiveacres]

I'm not really seeing that, MrsD.

It goes without saying that if my child was unwell, I'd move heaven and earth to try and make him/her (have one of each) better.

Of course IVF is different in that it's a potential child not an actual one but I'd still go for everything that would try to ensure the baby was healthy. I recognise the point - that you would be rejecting one child based on its health - but it certainly wouldn't feel that way to me.

Medical ethics is always going to be tricky and bring out strong thoughts and feelings.

[FoulsomeAndMaggotwise]

I had no idea the condition was that serious, I thought it was just about appearance. I feel very ignorant.

However, I still think they weren't cruel or selfish. Personally I would have screened, but they knew they would love and support their child regardless of their health and I don't see anything wrong with that. I think people saying she shouldn't have been born (essentially) are treading a very dodgy line.

[Kewcumber]

I can assure you that in the medical ethics of genetic screening (I teach this), Huntington's and CF are far more widely discussed.

I'm sure they are in your circles.

So are you in favour of forced genetic screening?

[Kewcumber]

Maybe "compulsory" would be a less emotive way of saying "forced"!

[PtolemysNeedle]

Her father can only decide for himself with any accuracy. He cannot know what it might be like for someone else who doesn't even exist yet. So while he's much better placed than me to make a judgement of what it might be like, he's still not especially well placed.

The point made about no one worrying about the other embryos that were discarded is a good one.

[Kewcumber]

We have no idea that the embryo's were discarded

They may have been frozen to be used in future...

... then we can have this argument all over again.

[RachelWatts]

I remember seeing a TV program about genetic screening.

There was a comment from a disabled woman - she was against genetic screening, as if her parents had used it, she would not have been born without her disability. She would have been, as she stated, "flushed down the sink".

[genome]

It is only possible to screen for conditions in which the genetic mutation is known. TCS is caused by a variety of genes and some are not known. I don't know in this case but perhaps the father's mutation is unknown and therefore screening is not possible.

[MaidOfStars]

So are you in favour of forced genetic screening?

No. Why the fuck would I be?

[PsychopathOnTheCyclepath]

Obviously I have no idea what caused this couple to go down the route of IVF, however, if you don't go down that route and end up with a child with a genetic condition, then to me that sits slightly better than proceeding with IVF and knowingly having a child with TCS.

It is their child, posters are right about that. But their choice causes their daughter suffering. So yes, I do think they are cruel. They were always going to have a child, hence the IVF.