Do you think this couple is unreasonable?

[corgiology]

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

[RedRugNoniMouldiesEtc]

I agree largely with glo, however I also agree it's a bit wedge like. Where does the line fall? My son has ginger hair and his life at school is pretty hellish - obviously it doesn't cause physical symptoms beyond bruised shins and bloody noses but could it be argued that it has caused him suffering so he should /could screen for the ginger gene in his children?

(example to illustrate potential progression not to belittle the choices or challenges people face) it's the same reason I don't like cloning etc.

For me I can argue this from both sides equally convincingly so couldn't really criticise anyone for the decision they go with as I genuinely don't know where I'd fall if it were my choice.

[MaidOfStars]

I'm sure some people with a genetic disorder do feel that their condition is so bad that they don't want to risk passing it on but other people must feel that their condition is manageable or for whatever other reason it's something that can be lived with

I absolutely agree. But I don't understand why, with a perfectly timely opportunity to screen embryos for this disorder, they didn't take that.

It's not about what their baby might look like, it's about the potential death of your child, the pain, the feeding tubes, the jaw breaking, the bone grafting.

Why would you choose that when there was a point at which you were given an "out"?

[Dawndonnaagain]

I have AS. Dh has AS. His father has AS. My father had AS. Three of our four children have AS. We didn't know at the time, everyone received diagnosis late. However, even now, I would not let that prevent me from having children. Should I not have had them, ThisTime?

[fiveacres]

Kewcumber, there is absolutely no need to make the huge jump from privately disagreeing with the choice a couple made to state that somebody wishes everybody with a particular illness to be forcibly sterilised.

I disagree privately with people having children they cannot afford. I disagree with families above a certain size. That doesn't mean I think 'poor people should be sterilised' or 'women should be sterilised after their fourth baby.' It's a personal point of view and I object to the knee jerk and aggressive 'well if you think they shouldn't have children, you MUST think they should be forcibly sterilised.'

Rather, that in this case, other options should have been explored - as someone saliently wrote, the child has to live with the condition. It really is as simple as that. I also know, were I to be in this position, I would give serious thought to sperm or egg donation so that the 'faulty' (as it were) genes weren't used at all. However, that isn't for everybody and that is fine.

[PtolemysNeedle]

This is a situation that is so far removed from my own personal experience that I'm very aware I'm in no position to judge with any accuracy or importance, but as there's a thread asking for opinions, I'll give mine.

I don't think they did something actively cruel, they haven't chosen to hurt anyone. Their decision does seem to be a selfish one though, especially if the cost of screening came into it at all. Of course, choosing to have children is always a selfish choice, albeit one driven by nature or instinct, but this seems to me more selfish than usual because the chances of having a child that was going to suffer a lot both physically and mentally are significantly higher than usual.

Wanting to be a parent and creating a whole new person who is going to have to live with the life you give them are two very different things, and both should be considered.

[Kewcumber]

I wouldn't chose the route they chose, but I am still hugely uncomfortable with the idea that we can judge what is and isn't acceptable in cases like these. They had extensive genetic counselling - and chose to go ahead - maybe they decided the risk of a severe form of TCS was low enough I have no idea.

Many people disapprove of me adopting my DS from a different country - they think it selfish and cruel.

The fact we have more choices these days does not compel us (or anyone around us) to use that technology. And I'm glad we live in a society and at a time where there isn't the compulsion to.

[MaidOfStars]

Oh come on, nobody is saying that people with genetic disorders or disabilities should be sterilised or prevented from having children. I know that it is part of the wider debate (it shouldn't be, IMO) but strawmanning posters on such an emotive and difficult issue is really horrible.

ThisTime very clearly references that it is the decision re: screening that s/he thinks unethical.

[Kewcumber]

Kewcumber, there is absolutely no need to make the huge jump from privately disagreeing with the choice a couple made to state that somebody wishes everybody with a particular illness to be forcibly sterilised.

I didn't make that jump at all!

I was specifically replying to the statement that it was "unethical" to allow them to make that decision. How else would you stop anyone in their position? Happy to take answers on a postcard but sterilising anyone who has something you don't think should be allowed to be passed on seems the only solution.

[PtolemysNeedle]

but other people must feel that their condition is manageable or for whatever other reason it's something that can be lived with.

That is true, but people can only decide for themselves what is manageable or what can be lived with, they can't decide that for other people who are going to have different personalities and different abilities to cope. And that's without considering that the condition could easily present differently in someone else as well.

[Kewcumber]

I think it is unethical to have allowed them to make this decision for their child.

^ this.

I was responding to this and made that clear by highlighting it in my post.

That is NOT - "I privately judge and disapprove" but "they should not have been allowed"

[fiveacres]

I feel it's unethical to have babies in already crowded homes where resources - both emotional and financial - are scarce. It doesn't mean I want to sterilise women who already have four children

You wouldn't 'stop' people; however, you can have an opinion on it which is what this thread is about.

[PsychopathOnTheCyclepath]

Nah, I think its cruel. It's not about people with disabilities being less worthy, and all about knowingly letting your child suffer.

Whichever way you shape it, I can't help but feel that is wrong.

[GloGirl]

MrsDeVere, as someone who has a son with a genetic condition - I can ASSURE you that I believe he is as worthy of existence as my son without

I still think it's not the choice I would make in their shoes.

[MaidOfStars]

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

I couldn't disagree more strongly. It's about what you have the capacity to choose for your child and I don't understand - I simply don't understand - why anyone would choose to risk the death, the pain, the suffering of a child when the opportunity was there to choose differently.

If you do not have a choice beyond "children or not", I'm not going to argue about anyone's right to have children. If you have a choice - and this couple did - why would you choose to risk a very severe disability instead of a healthy child?

I'm not judging at all, I simply don't understand.

[fiveacres]

I also feel it's unethical not to donate ones organs or to give blood. It doesn't mean I'm going to turn into a vampire :)

I understand what you mean: it is 'unethical' from the point of view of the people performing IVF, but then the default would surely be 'we WILL screen test for this condition' not 'we will sterilise you if you refuse!'

Mrs, I don't think it is. I think in this specific case it is about having the option to have a child without a disability and not taking that option. I certainly don't think disabled people's lives are worth less than able bodied people: that would be a cruel and selfish viewpoint. If I were to be in this position, it would be from the viewpoint of wanting my child to enjoy good health and all the advantages that brings. It's the huge difference between having a child who happens to have a disability and knowing that having a disability is likely, having the option to avoid it but proceeding anyway.

[Kewcumber]

So are you not suggesting that anyone who has TCS must be screened and have IVF, or only that is you have to have IVF that you must have screening (presumably with the NHS picking up the cost of the screening.

We don't have a long history or forcing people to have medical tests/screening they don't want (hurrah) so I'd be interested to see how thats going to work in practice (especially given most people won't need IVF). And exactly which conditions we're going to chose to insist on screening and whether we're going to draw the line as pre-implantation tests or include post as well.

And yes we do make decisions all the time about our children that they won;t necessarily agree with. This is a more extreme version of that.

[PtolemysNeedle]

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

No it doesn't. It's not about how worthy a person is at all, it's about whether a human being, who has as much value as a human being as every other human being, is suffering something that could have been prevented.

[Kewcumber]

I think its unlikely there would be this much judgement if the condition was less visible.

I thought exactly the same thing MrsDV

Not many people with the Huntingdon gene, CF gene being publicly denounced. Because people can't see it.

[GloGirl]

I'm not humphy, just completely boggled by your point of view