A world without Down's syndrome?

[Hulababy]

Anyone else watching?

Interesting so far

We have to be so careful here. There are many women reading this who have children with for example autism. Are we saying they she be aborted? What about blindness, deafness? It's actually much easier to manage a DS child than one that has autism. Growing up we were all horrified that Hitler wanted to create a perfect race. This smacks of this. I'm horrified at some people s attitude. Even a doctor who is caring for an older man with DS. What does she think should happen? That he would have been better off dead? Surely that could apply to anyone with a life long illness. Whatever attitude we have to weaker and vulnerable people is the attitude society will have to us if we end up sick or infirm. I didn't see that programme tonight bit l do have a friend who has a ds with downs syndrome in his late 20s and she is heartbroken at all the talk of abortion being encouraged for DS. He is the absolute joy of her life and she says try telling me he should never have been born.

Well you are just playing Semantics then Thecraic People are eradicating the condition by having abortions in almost every instance when it is diagnosed. Denmark, for example, are actually aspiring towards an eradication of the condition. Eradication comes about when the fear of having a child with the condition, a fear expressed by many on this thread, means that almost everyone's first thought is abortion when the diagnosis is given.

Interesting discussion. I didn't see the show but people are talking about "eradicating" physical disabilities. I'm physically disabled. Honestly, if my parents could've, I wouldn't have ever held it against them had they (theoretically, of course…) terminated "me" or the baby they had before me had they known. They didn't, so perhaps the discussion is a moot point.

But the reality of the circumstances is, though I won't die from my condition, I have a reduced quality of life. I'm in pain sometimes. My life has been severely limited (though also very wonderful in lots of places!). I'm not trying to do anything as moralistic as to suggest that other people don't suffer, or that my life would've been necessarily (all over) "better" had I not been born disabled.

The poster who made a comment before has a very good point that perhaps, if society was a "Better" place to live as a disabled person, I wouldn't feel like this. But I don't know. What I see from my perspective is the serious objective ways in which my life has been limited. It's been a hard slog.

Obviously that would give nobody any right to take (adult) me out and shoot me, but the fact of living with a chronic disability is that the positives are often subjective and the negatives are often objective (ESPECIALLY when dealing with a foetus). I think anyone - especially a parent (p.s. I understand that parents have a bloody long, long hard slog to deal with disabled children, esp. developmentally disabled) - has the right to go on about how bloody wonderful it is. The fact is, while they may have to deal with a lot of the circumstances, they don't have to live like this.

Give me a break about Iceland. It's such a small country that the results from there cannot be polarized. They don't have macdonalds in Iceland.

Also, realised I forgot to mention something: I'm obviously not all for a cull of disabled people, obv! My perspective merely came from an objective view of the hardships, not some fluffy piece about how Sally Phillips (who I love as a comedian) is wonderful. I suppose my main fear about the "eradication" posed by the abortion conundrum is the possibility that so many people will have it that the few DS people in the UK (if this is indeed what happens) will be discriminated against again and again. But, the fact is, I don't think that should prevent a mother (especially one living in poverty, in some circumstances, or as a single mother with multiple other children - just to give some examples of where raising a severely disabled child would be very difficult) from making an informed decision.

junebirthdaygirl, my ds3 has autism and I'd have terminated in a heartbeat had I known.

Having a severely disabled child isn't always or even mostly the Road to Damascus that SP painted it to be. It doesn't teach you about the simple pleasures in life. It teaches you how cruel fate can be. It teaches you to feel tremendous guilt for the life you've given your other children. And sadly, it very often teaches you and your partner the quickest route to divorce. There is literally nothing joyous about severe autism.

Just to put the 100% termination rate in Iceland into perspective, in England and Wales for the years 2011 and 2012 the termination rate following prenatatal diagnosis was 90%. Obviously the two population sizes are not comparable but what I'm saying is, our current screening programme already generates a very high termination rate. But in such a large population there will still be many who would not chose termination whatever the result. Some people just want the information in order to be prepared. It is not always because they would act on it.

I couldn't watch this programme because her attitude enrages me so much. I have a Dd with genetic condition that is similar to ds, as it causes physical, learning and mental health issues too but has different facial characteristics so is harder to spot. We don't know what the future holds for dd, she is high risk for lots of serious life changing mental health issues as she gets older. My Dd has required a huge amount of extra care and there are lots of things she should be able to do for herself but can't, Dd goes to a main stream school and has a high achieving sibling so is very aware of this.

It chills me to think if I had been tested during pregnancy I would have terminated but with that in mind if I became pregnant again I have been told a test can be done at 11 weeks and if it came back positive I would without a doubt terminate. I couldn't cope with another child with this condition and I couldn't cope with the guilt of inflicting it on someone, Dd went through so much when she was younger. This is why I make bloody sure as much as I can that I don't fall pregnant but nothing is 100% foolproof and it makes me furious that there are some who don't want women to have access to testing. If there was no testing and I became pregnant I couldn't take the risk so would have to terminate.

Plus, on a selfish note caring for a disabled child with no end in sight means I can't work. This is having a huge impact on me and the whole family financially. If tax credits are cut I don't know what we will do.

I totally understand Property. I did say autism was far more difficult to cope with. I am not walking in your shoes obviously. But we never know in our lives when our children are going to make our lives hell. In my extended family one young guy was severely involved in addiction causing untold stress and heartache to his parents and siblings. Life is shite on many levels for people unfortunately but when we begin to decide who should live or die we are on a slippery slope and it frightens me what kind of society we end up with.

I watched it. I didn't like her one sided view. Every example of DS shown was at the higher functioning level. I knew someone who was a young mum with a DS child. She was a lovely lovely little girl but so ill constantly and died age 6.

I refused testing when I had DD even though considered as higher risk. At that point in our lives, both DP and I thought we would be able to cope with any potential issues.

I doubt I will have another child but now, not far from 40, if I found myself pregnant I would take all the tests and most likely terminate if DS. I think for me personally, getting older, and now having my own health issues, has made me much more aware of the impact it could have long term.

I find it bizarre that many people see it as valid to terminate for social reasons such as not wanting to have a baby just yet or a baby with a certain partner or simply for not wanting to be pregnant. Yet the social reasoning of not wanting to care, potentially for a lifetime, for a disabled child is considered distasteful.

I found the programmer very one sided and not very informative. I think the introduction of this new 99% accurate test is brilliant. Families will have a choice and that can only be a good thing.

I thought Sally's questions to the lady who had aborted a DS fetus were shocking and beyond tactless. Id have been really pissed off if I had been the woman.

If one of my DC became disabled in any way I would deal with it positively but that's very different from purposely choosing to bring a child into the world with DS. I, personally, wouldn't do it. However, I respect the right of other families not to abort.

Funny to compare to Alzheimers --Dementia in her 30yo son (he has DS) is breaking my cousin's heart every day.

I know someone who terminated for DS.
She was traumatised about it, but still felt it was kindest thing to do.
It wasn't as simple as worried about mental disability. The fetus had a long list of physical problems, consultant said heart+lung transplant before 18 months, and other things.
It upsets me that her experience could be reduced to a simple "aborted for DS" statistic.

Don't immediately suggest an abortion but show how kids with Down Syndrome have full lives.

Some do. Some spend half their lives in hospital.

The population of Iceland is tiny, around 300,000 people. Around 4000 babies are born each year. Down syndrome occurs in roughly 1 in 1000 births. So that's around 4 babies a year in that country. So 'eradicating' is not really correct, it just means 4 parents last year chose to abort. Next year a different 4 parents might choose different.

But no I wouldn't personally be tested or terminate for Down syndrome

I don't understand previous comments about SP's bias due to her evangelical Christianity. I saw no evidence of this in the programme.

I was shocked by Lynne Chitty's 'yes,but' question to SP about how she will feel when her son outlives SP and probably demonstrates more bias than any other part of the programme.

very interesting podcast on The Moral Maze on Radio 4 about exactly this subject

I don't understand previous comments about SP's bias due to her evangelical Christianity.

She was blatantly going to be pro-life, hence her making that woman's story about her termination all about her, and the not-so-subtle implication that any woman who terminates for a DS diagnosis is "eradicating Downs Syndrome" rather than making a choice for her body and her life. There was pro-life rhetoric all the way through that programme. Very disingenuous not to be transparent about her religious beliefs on that particular topic.

This is just an extension of the abortion debate. Using cherished children as an argument against termination and saying 'would you rather my lovely Ben didn't exist?'.

I've had a termination. If I had opted to continue with that pregnancy then I'd have a wonderful young adult child who would mean the absolute world to me. But that person never existed, so I haven't eradicated any wonderful child.

SPs views are very self centred and short sighted.

Yes, pro-life rhetoric. But I wasn't aware from the programme that SP is a Christian - evangelical or otherwise and I don't see the relevance.

The programme hasn't changed my view, which is exactly as Morris describes above.

But I wasn't aware from the programme that SP is a Christian - evangelical or otherwise and I don't see the relevance.

But surely that's the problem; that we weren't made aware of the bias?

Filmmaking should be subject to the same codes of ethics as experiments, really. The power of media to persuade and convince people should never be underestimated, and I think it's a little worrying that she was allowed to preach her pro-life rhetoric under the guise of "if you care about people with Downs Syndrome you'll agree with me", without the honesty of admitting the bias. It's all about transparency, and the documentary was incredibly biased but presented in a way that suggested if you disagreed with her, you're advocating for the eradication of people with Downs Syndrome. It's dangerous.

And yes, it hasn't changed your view, but there are plenty of people on Twitter and Facebook suddenly crawling out of the woodwork and preying on the people feeling a little vulnerable after an emotive documentary, spreading their own anti-choice propaganda and encouraging people to criticise women who have had terminations for DS. It was a really disturbing read last night.

In this discussion bias = something I don't agree with.

The programme was a personal view, surely? An alternative view to some of the attitudes displayed here?

I think Philips is on record as saying she is pro-choice on abortion (as many Christians are). It is not being anti- choice to say that there are ethical implications to our choices, and that one of those is the possibility that DS will be eliminated. And the ethical problem with that is that it suggests that the lives of people with DS do not matter.

There is a lot of talk on this thread of 'low functioning' 'severely affected' DS - as if the lives of people in this category could have no value - even to themselves. That really is the slippery slope to eugenics, because it's deciding for other people that their lives aren't worth living.

As I say all the families I know where people have a child with DS have welcomed the programme.

I find the central question interesting.

A World Without Down's Syndrome?

I would certainly answer yes to that question, same as I would for any chromosomal or genetic condition, or any other disease.

Are there really people who think the world is a better place for the existence of chromosomal abnormalities?

If a wand could be waved and there would be no more Down's, would we really choose not to wave it?

I think it says bad things about a society when we fail to provide properly and generously for our fellow citizens with disabilities and illnesses.

But to me it makes sense to aim for a situation where as few people as possible are sick or disabled.

I would love if we could eradicate and screen out Cystic Fibrosis. That doesn't mean I think the lives of people with CF are of less worth.

Just that I think most people would not choose a life that is likely to be shorter and beset by illness and hospital stays.

If genetic screening can prevent that, then I think there is a moral imperative to do it.

I don't believe there can ever be a moral imperative to have (or not have) a termination. I think that is an individual choice for each pregnant woman.

So we don't get to choose to eradicate or not.

But if we discover a way to eradicate without termination, if science finds the magic wand, will we really not wave it?