To think a test for downs that is nearly 100% accurate will not result in more terminations

[PlayOnWurtz]

I'm getting increasingly annoyed with Sally Philips at the moment and her insistence testing for downs syndrome is a negative thing and that living with someone with downs syndrome is a wholly positive experience.

Whatever happened to choice? Who is she to lay the guilt trip on people? Why is it seen as shameful to say "I would not be able to raise a person with significant health and learning disabilities" and seen as a negative decision made on a whim rather than a decision made with consideration and thought and heartache?

I think Sally is a lovely woman
With a lovely wealthy life style and has a gorgeous son.

WTAF that has to do with any other pregnant woman's choices is beyond me.

What she is essentially saying is that we shouldn't able to prevent 'surprise' down syndrome babies (i.e. the ones that currently get missed by tests)

Which is unreasonable because I think mother's should be able to make an informed choice, and if this tests makes that able to happen then good.

What the family decides to do after that is their decision.

I can easily imagine how it translates in her mind into 'my son is less worthy of being alive than he would be if he didn't have DS.

But why devote an hour of prime TV to someone's irrational thought and offer nothing to balance it.

A bit of humility and a greater acknowledgement from Phillips that 'this decision was right for me given my situation and outlook, but other people might come to a different conclusion when in full possession of the facts' wouldn't go amiss.

I struggle with this one. I had amnios for my three pregnancies, and I think I would probably have terminated had Downs shown up, though as it didn't happen I can't be sure.

But I see the difficulty when you get to the point that they have in Iceland of 100% of Downs pregnancies being terminated - do we reach a stage when people who would otherwise have kept their babies feel pressurised to abort because that's what everyone else does, therefore it's not viewed as acceptable in that society to have a child with DS, the child will have no direct peer group, and any expertise that exists in educating children with DS and dealing with their medical problems has become very diluted or completely disappears.

And then there's the slippery slope argument - if the norm is to abort children with DS, are we going to move to abort those with a predisposition to, say, motor neurone disease or hearing impairments? Say goodbye to Stephen Hawking and Beethoven. How about stroke and heart disease? Say goodbye to me, because my parents wouldn't have been born.

But then I come full circle back to the point that, notwithstanding all of that, I probably would terminate for Down's. And I realise that I can't reconcile that with my recognition of the dangers. I don't think it's a conflict I can realistically resolve.

*these

Do we want to live in a world without Down's syndrome? This isn't just a theoretical question. It could soon become a reality. A new technique called non-invasive prenatal testing (NIPT), detects Down's syndrome with 99% accuracy and it should soon be available on the NHS. It's already being used in Iceland where 100% of Down's syndrome pregnancies are terminated. The Danish health system declared the objective of being Down's-free and introduced the test in 2006. The termination rate there today is 98%. In Britain the termination rate for positive tests is 90 per cent and around 775 babies with Down's syndrome are born every year in England and Wales. A lot of effort has been made to increase people's knowledge of the condition which has a wide range of symptoms. Many children with it will grow in to adulthood and lead very integrated lives, but some will never walk or talk, or may have severe heart defects, glaucoma, deafness and a risk of early dementia. Would it be a sign of human progress if we reduced the number of people born with Down's syndrome to zero? Many people would agree that reducing suffering is an unequivocal moral good, yet when Richard Dawkins told a woman on Twitter that if she was carrying a child with Down's she should "abort it and try again" and "It would be immoral to bring it into the world if you have a choice" there was an outcry. NIPT could soon be available for other single gene disorders such as cystic fibrosis and we've done our best to eradicate many other disabling conditions, so why not make the most of what technology can offer? Or is this a kind of nightmare eugenicist council of perfection - a triumph of cold hearted utilitarianism over our moral duty to embrace difference and care for our fellow man? Chaired by Michael Buerk with Anne McElvoy, Claire Fox, Giles Fraser and Melanie Phillips. Witnesses are Sally Phillips, Jane Fisher, Prof Dominic Wilkinson and Simone Aspis

This is the blurb for Moral Maze on radio 4. I cannot believe the bias.

It she didn't know, LikeDylan, that's the joke. She had the blood test, came back 1/1000 for Downs, didn't have an amino and they discovered at birth. It's rather like, "well I didn't get it, so why should you?".

www.bbc.co.uk/complaints/
There is a whole complaint category dedicated to 'bias'. Takes 5 minutes.

Given the choice, would Sally Philips actively give Downs Syndrome to a child that didnt have it, to stop the gene becoming extinct?
Because if not then she has to admit its not the best choice.

Hmmmm watching the prog now. I am/was sympathetic with her position right up until she said something along the lines of 'choice? I'm not sure that's a good thing....' Urgh. Lost me there,

Our society doesn't adequately support women or families of kids with special needs. It does not do enough to support them financially, educationally, and it doesn't always provide the required medical support.

Perhaps the choice to keep a baby might be easier if that support was more apparent.

I pity any woman making the choice to terminate on the grounds a baby is likely to have downs. The only decent thing to do is afford a woman the most certainty in testing.

I am pro-choice. For any reason. Woman's body, woman's life = woman's decision. Any conditioning sends us down the slippery slope. The road to hell is paved with good intentions and all that ....

If you want a society where difference is accepted, support special needs people who are already born and alive.

I cannot believe some of the dinosaur views on this thread.

Why on earth would a parent need to be a SAHP purely because their child has Downs?
Violent and aggressive adults? I literally cannot believe I read that.
Many not able to walk or talk. Many? Really? Where are all these people?

I am pro-choice and if I fell pregnant again I would have NIPT. I thought the woman on the documentary who chose to terminate was very brave.

Frankly many of the ignorance and outdated posts on this thread demonstrate exactly why this documentary was needed. Funny how most of the people on here slating SP for not showing the reality of life with Downs have no grip whatsoever on the reality of it themselves.

they can get married

yes , some can, but others, like my colleagues brother, not only could never get married themselves, but effectively prevent their siblings ever marrying either.

My colleague's whole life revolves around her DS brother's care. He is mobile, but suffers severs health problems which need regular hospital appointments and stays. He is non verbal, aggressive and destructive, not only costing thousands in care and supervision, but also in replacement of damaged possessions.....

My colleague will never progress in her career, as her first priority is always to be available to her brother, and she will never have any sort of personal life either.

This is the reality, decades after the mother, who might have made a different choice, had choices been available back then, has passed on, and passed the burden of care down to the next generation.

Now what will happen if he outlives his sister??

Under have you RTFT? Where people have said the programme does not have an accurate portrayal of people with more complex DS?

I expect that raising a child with DS is considerably more comfortable in your naice, MC north London home, with a full time nanny on hand, yes?

Whilst many others in her position probably have no choice but to rely on Carer's Allowance and PIP.

Does anyone remember another docu called A Mother Like Alex? Not sure Alex would advocate termination of DS babies but certainly she could have provided some balance on what some instances of DS can be like to deal with.

YY Blackcat Not to mention sacrificing her pension provision.

I think its important to note that Sally is confusing more informed choices with actual eugenics.

The test does not seek to eradicate downs syndrome, it seeks to give an increased number of women the choice over their own child and the rest of their lives fgs

It's impossible to eradicate DS as it mostly occurs as a spontaneous genetic event. I think adults with DS have reduced fertility (happy to be corrected) although an increased chance of having babies with DS themselves. But the rates of DS pregnancies won't change.

I don't like the way this is being touted as a new thing - there's already prenatal testing for genetic abnormalities with CVS/amnio. The resistance to easier, earlier, safer pregnancies seems to be that the testing shouldn't be straightforward, that it's better if it's a bit risky and associated with a small miscarriage risk because women need to really think about what they're doing.

Patronising.

Sorry - easier, earlier safer testing

Given the choice, would Sally Philips actively give Downs Syndrome to a child that didnt have it, to stop the gene becoming extinct?
Because if not then she has to admit its not the best choice.

There is no such thing as a gene for Down's Syndrome. Down's occurs by random chance, and it can't "become extinct". It also can't be given to someone as it occurs at conception.

What does "the best choice" even mean in this context? Nobody would actively choose for their child to be disabled.

Pinky, yes I have. Several people have indicated that SP's son is exceptional and that the reality is most people with DS are far more debilitated, especially in adulthood.

If you look at the actual data (available from the DSA or from DSE International) you will see that the learning disability distribution is a bell curve. Yes, there are a small minority at one end with severe disability and little independence. There is a small minority at the other end who function highly and have an IQ of up to 130. Most are in the middle. Slightly less able that the general population but actually there is significant crossover.

Please look at the myriad of peer reviewed academic papers from the last 30 years on DSEI's website showing how good educational outcomes for people with Downs can be achieved with the right teaching methods.

Blackcat, thank you for your wisdom. Now let me help you out. Tomorrow evening I will go out for dinner with 16 fellow mothers of children with Downs. Every single one of us works. I have been promoted twice since my child with Downs was born. None of us has a nanny. We all have multiple hospital and therapy appointments to keep and you know what? It really isn't that difficult to juggle. We don't live at the hospital.

Violence and aggression are NOT features of Downs. Some people with Downs may have dual diagnoses (including autism or ADHD) and some may exhibit problematic behaviour born out of frustration if they have not been given the tools to communicate effectively. The gap between receptive and expressive language in many people with Downs is huge and this can naturally lead to frustration, as can a feeling of powerless when they are not properly involved in the direction of their own lives or care. Happily, education techniques are light years ahead of where they were 30 years ago so the prospects for younger people with Downs are much better. Behaviour is communication Please understand the difference between a reaction to an environment by a scared and powerless and an inherent feature.

Where would I expect them to be? I am a member of 2 large regional groups for families of people with Downs as well as having links across the country through other networks. I think if this 'many' unable to walk or talk existed I might have come across a few. You are talking about one end of a spectrum and a SMALL number of people; your assertion is outdated to say the very least. We are normal people with normal families and children in normal schools. Are you aware of the Hampshire cohort study which showed how much better the educational outcomes for average children with DS is when they attend mainstream school.

I don't know where you amassed your experience but it really, really is not representative of the Downs community. Don't make our job of advocating for our children harder than it already is.

The ironic thing is if they succeed in ensuring the test isn't available on the NHS, what will happen is that wealthier people will still have it because they can just pay for private testing. And the families who are in some ways least equipped to raise a child with Downs* will be the ones with reduced ability to make an informed decision.

*I mean 'least equipped' in terms of living on one salary/hiring help/seeking private care to speed up access to necessary treatments/hiring private tutors/etc.