To think MN is taking a strange stance on the NIPT test?

[eeyoresgrumpierfriend]

Is it just me or is MN giving a lot of coverage to those opposing the new non invasive prenatal screening tests the NHS wants to introduce. Today's blog of the day, Sally Phillips at Blogfest and there was a guest post against screening a while ago too.

Full respect to these women and the choices they've made but isn't the crux of the argument about women's choice?

The NHS already screens for Down's, Edwards and Pateau's but the new test will be safer and can be done earlier. It's only going to be offered to women who would otherwise be advised to have amnios/CVS.

So it's a less invasive, faster, less scary, safer way of women getting the information they want to make an informed decision right for them.

Odd that MN's seem to be giving a platform to the anti-argument with no counter-balance?

Yes I don't see why we are taking offence at aborting for DS saying its 'disgusting' if we aren't taking offence at other reasons for abortion. We don't accuse women who adopt babies conceived as a result of rape (or any other reason really) of having made judgments about the value of the fetus' life. Why is it different?

It's a decision as much about the parents as the fetus. It is a choice about what is right for the individual woman and her family.

Saying you are pro-choice but then accusing women who do abort after positive screening results of doing so 'because they are different to us', eugenics or prejudice is contradictory.

But it is eugenics - doesn't mean you have to want to ban screening but don't pretend it's something it isn't.

But it is about the right to choose, the right to have the full picture. Maybe people don't want the extra struggle that DS brings, they are allowed to make that choice. They are allowed to not want to roll the dice on how things will be. I agree that it all comes to down to prolife/prochoice.

I should say the individual desicion to terminate is not about eugenics but pre-natal tests to enable parents to abort babies with undesirable traits is eugenics absolutely.

As I said upthread, I don't want to ban or restrict this tests but surely we (as a society) need to face up to some of the places this could go.

Bountybarsyuk: "I know people with children with Downs Syndrome who are severely affected, and adults who are non-verbal and difficult to care for."

Exactly. There is a spectrum. It seems to me that if there is a myth about Down's Syndrome, it's that Down's children are all cheerful and happy and affectionate. The truth is that at one end you have children like Sally Phillips's son, who is high-functioning and can ride a bike, and at the other you have those who are non-verbal and need to be cared for intensively throughout their lives. The test doesn't tell you what type of Down's your child has.

I agree that it all comes to down to prolife/prochoice.

But it really doesn't. I'm firmly pro-choice. If I found myself pregnant with a second child with DS, my partner and I would have an agonising decision to make and I can't say for certain that I wouldn't have a termination - because we're older parents who already have one disabled child and might simply not be able to cope with a second. But at least we'd be well informed when it came to making the decision. Most people aren't, and that needs to change.

Also, while there's undoubtedly a range of disability, many of the PP sharing anecdotes about profoundly disabled adults with DS don't realise how much has changed in terms of early intervention since those people were children, and all the studies show that early intervention makes a huge difference to development.

What would you do though? Force every woman coming through to watch a dvd showing the positive outcome? Having been through a TFMR myself I can guarantee you I looked at every possible scenario (best case included) and still decided termination would be for the best. I didn't want my DD living in pain for a few short years. It is horribly condescending to imply people don't research this before they go through with a TFMR. If the attitude towards disability is what bothers you NIPT is not what you should be targeting.

Just to reiterate the the main objection that I and many other people have to this test is about the way the information is delivered.

I had the NIPT, and I along with many other women I know (online, I don't just happen to know dozens of women who've had high 'risk' pregnancies recently) received the results thus:

A midwife, in my case who I'd never met before, who wasn't from my local hospital, called me up. Told me my baby has DS 'with 99% certainty' and in the next breath told me I could come in for a termination next week. There is not much 'choice' there. Of course I could (and did) say no but for a woman who is told by a medical professional that there is something wrong with their baby, and then immediately informed about termination, it feels an awful lot like that is what you are being advised to do. It's hard to go against the wishes of a medical professional who sounds so confident and clear that this is what happens next.

I'm sure the story would've been similar, probably exactly the same, if I'd had an amnio/cvs, I'm not claiming that that system is perfect. I want the NIPT to be available to all women, I really do, but the current system means that women are pushed towards termination after diagnosis and that is what i/we are objecting to. Give women the news of a diagnosis calmly and clearly, give them information about what DS actually is, what it means in practise - be clear that there is a chance the child will be profoundly disabled but don't claim it is inevitable. Give women the time and space to make a choice, support them whatever that choice is.

Until that support is in place to allow genuine choice, don't roll out a new test. That's what I want. I want the test available to all - once the support is in place.

I literally posted upthread my completely alterative experience. I wouldn't believe that attitude is the norm.

The problem is that no matter how much people insist they are pro choice, when people feel they have to justify a termination, when words like 'disgusting' are used to describe terminating DS babies - that isn't pro choice.

Mothers on DS parenting groups who share their experience of a prenatal diagnosis say again and again that there was a strong presumption and even pressure to terminate.

Yes jessica and it being implied that 'if you really understood disability you wouldn't terminate.'

It's the opposite of pro choice, and as ever women get the full brunt of the moralising and the shit work.

Society doesn't see it as mens work to stay home and care for children. If a child needs lifelong care then it will almost always be women who abandon their own careers and bash on selflessly with the drudge. They will also have emotional responsibility for any other children, parents and inlaws.

Any drive to give more crap to women is anti woman in my view. Wealthy actresses notwithstanding.

it being implied that 'if you really understood disability you wouldn't terminate.'

I don't think that's what most people who are disturbed about the unforeseen consequences of the NIPT are arguing. What we're saying is that there's a lot of fear, ignorance and even revulsion surrounding DS in particular and that, while medical science has progressed (and that's a good thing), the wider understanding of DS hasn't kept pace.

I wouldn't disagree with MorrisZapp about who the shit work lands on, though!

And I'm saying most people would have done their own independent research before undertaking a termination. It's not a willy-nilly decision even if doctors occasionally frame it that way.

Agree gruffalo the subtext here seems to be not trusting women to make an informed choice. The campaign DOES aim to prevent the roll out of the NIPT test which means it is designed to make it harder for women to obtain information they want to know to make the right decisions for them.

It also can't be stressed enough that we do already screen for trisomies. The NIPT test is just going to make it safer, allow it to be done earlier and in a less frightening way. Miscarriage from amnio/CVS is rare but it does happen (there are some very sad stories on the talk boards here) - the UK NSC estimates introducing the NIPT test will avoid 43 miscarriages a year.

As for the eugenics point - I'm not sure there is an agreed definition of what eugenics is yet anyway. Certainly it is a term that carries a huge negative connotation as people tend to think of the horrific 'forced' eugenics programs of history . The NHS isn't going to force anyone with a positive result to abort nor is the test designed as part of some social filtering plan for the benefit of the state. It may well be eugenics but not in the sense that many people think of it. The aim here is individual choice and welfare. It's an important difference.

And most women would choose to have prenatal testing with a fairly clear idea of why they're choosing it.

In some ways the focus on Downs Syndrome has obscured this debate, as you can already screen for it, so you are replacing an existing test with another. You can also use NIPT for diagnosing sex and paternity. I know someone whose husband asked them to do the paternity test whilst they were paying privately for an NIPT for abnormalities. In the future, there's lots you could add onto a blood screen. That's a whole other can of worms.

I think it's absolutely valid for a programme to ask whether the NITP will lead to a world without Downs and what that will mean for people with Downs and their families. I also think it is fine to question how the choices are presented when the test is positive for Downs as it was in my case. I think parents need to be given a balanced but realistic picture of what to expect best, worst and in between scenarios and help and support to make the decision that is right for their families. ARC is very good and we also talked to the DS association. It's good to air the broader issues provided there is no attempt to limit the choices/information /safe testing or judge people who having to make very difficult decisions.

A safer, easier, earlier test is in women's best interests. Withholding it because women need to really think about what they're testing for is patronising. It's almost like the status quo - cvs and amnio - is more acceptable because women have to suffer more for their choices such as a medical procedure and factor in the risk of infection, bleeding and miscarriage.

The concerns that terminating on the basis of disability will become automatic or blasé aren't the point. If you support testing in general then it seems logical to support safer and earlier testing where pregnant women may have more options.

Personally I'd have terminated a fetus with DS but I'd have also loved a child with DS with all my heart.

But when people are making their decision people shouldn't be sat there going "but this might lead to a world without downs and think about the families." It's a completely personal decision that shouldn't be made to appease anyone. I think it will continue down the road of downs syndrome becoming less and less common regardless of what information is out there. I think people know it's a roll of the dice of what severity of disability there will be and a lot of people don't want to roll that dice.