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?

I can understand that Wips but to phrase it another way, it's ok to terminate for any reason, and one of those reasons is Down's.

I sympathise WiPs and I felt the same about my son. But this is not a judgement on your son or mine but about the right to all the information including the risks. When I found out about my son's likely genetic condition the medics were positive about his chances - but the full extent of his health problems wasn't clear until after birth.

As the parent of a child with DS, I completely agree with what MrsDeVere, HazyJane and others have said.

I'm pro-choice and in favour of an accurate, non-invasive test but it absolutely has to be coupled with much better education of both healthcare professionals and the wider public about what a life with DS means these days.

I've heard so many stories from parents who were either put under pressure to terminate or were postnatally given an astonishingly gloomy picture of what the future would hold for their child.

We had a postnatal diagnosis - the markers weren't picked up in the old NHS triple test, and I'm now so glad that they weren't. Like most people, I was pretty ignorant about DS and would probably have had a termination if we'd had a prenatal diagnosis - something that makes my blood run cold now.

I would never judge someone for having a termination but hate to think of it happening through fear and misunderstanding.

As I said earlier I do not oppose termination for any reason.

Science is moving towards finding genetic causes for many conditions that were previously unscreenable. We need to think about the way screening programmes are rolled out - part of that thinking needs to be about how we, as a society, see disability and that needs to involve discussion from everyone - the people with disabilities, their families, people that would or have terminated

If all conditions could be tested for - would we go down the road of testing for everything so that people have the option of terminating if they know their child will have .....autism....one of the 100s of genetic conditions that exist......learning disabilities......tourettes......ocd......bipolar......schizophrenia........depression......

Yes people can terminate for whatever reason they like, but this is about being able to test for a condition which the majority of people (who test positive) want to terminate - I am not including Pataus and Edwards in this, as in the majority of cases these are extremely life limiting - as that test focuses on Downs Syndrome it is interesting to hear from those with Downs Syndrome (eg Don't Screen Us Out) about the possibilities of this test reducing the Downs Syndrome population to the extent of somewhere like Iceland (where termination rates on a positive test are 100%).

By the way, apologies if none of that made sense - the result of a glass of wine after about 4 hours of sleep since Friday!

I am a carrier of DMD and I have a 1 in 4 chance of having a baby with this condition before I know whether the baby is a boy or girl.
If the baby is a boy I have a 50/50 chance of the baby having this condition.
With my last pregnancy I was asked to participate in the trials for this test and they are doing trials at the same time for a similar test for DMD I have had to have cvs with every pregnancy I think this test will make things easier for people.
Having a cvs is not a pleasant experience and the waiting for the results is awful.
I have had tfmr but this was my choice and I was supported by my consultant with which ever way I wanted to deal with my pregnancy but my brother had DMD and I personally couldn't watch my own son go through what my brother did until his death at 23.
I think this test should be available on the NHS for people to make the right decision for them because if it is a bad result the test is early enough so that the parents have the choice to either terminate or to get all of the information together so that they will have the support ready for when there baby is born.

Of course Downs is a spectrum. Of course there are "high functioning" (for want of a better phrase) people with Downs who have minimal care needs going into adulthood.

But equally, there are people with Downs with much more profound physical and learning disabilities.

My issue with the argument that Downs is not a catastrophic diagnosis is no one can tell you where on the spectrum that child will be. So why is it used as a counter argument?

So, to repeat what someone said upthread, is aborting for Downs "worse" than aborting for any other reason? I agree this is, ultimately, a pro-life/pro-choice argument.

Apparently there's a segment in the Sally Phillips doc where she speaks to a woman who terminated a Downs pregnancy, and shows her a video of a young woman with Downs performing a gymnastics routine. It's fairly obvious what sort of point SP is trying to make, and if the scene plays out as described in The Guardian, then actually that's quite discomforting.

I had cvs and was told I could "discuss my options" once the results were in and it was very clear they meant book my abortion. I would have ended the pregnancy if the baby had Downs Syndrome - so I feel a huge sense of guilt every time I see stories about this, even though I never actually had to cross that bridge.

It must be very hard to parents of children with DS to know that the majority of people would end the pregnancy, but like others have mentioned, you just don't know how ill that child could be and I wouldn't want to take the risk.

The reporting has definitely felt one-sided to me.

I think anything that gives women more information about their pregnancy is a good thing.

Some of the responses seem to infer that this is the first time such screening has been introduced. It's a less invasive way of providing information that was only previously possible by CVS/amnio. Safer for women (no bleeding, infection risks) = better, surely?

JinxMonsoon that is exactly right and as I said on my earlier post is our decision for terminating was that there is no way of knowing at the 12 week point how serious - or not - the problems will be. It's the same for Downs and other broad spectrum chromosomal/ genetic disorders such as Noonans which DS1 had and died from. And very severe cases of Downs and Noonans are as life limiting as Patau's and Edwards. As I understand it there is still no way of testing antenatally for Noonan's.

I am fizzing with rage about the coverage of this test. I guess I SHOULD reserve judgment until I have seen the documentary but I have heard Sally Phillips on R4 and read the article in Saturdays guardian and have been searching this website waiting for a thread. From my searches I can see the researchers for this programme used mumsnet to get participants. From what I can discern from Phillips' own comments on the radio and in the article the programme is nothing more than a vehicle to promote her own, religious driven, anti-abortion stance. I feel sick to my stomach for women who are currently receiving bad news about their pregnancies and having to make hard decisions. I have been there and it's tough enough without the publicity and misinformation around this test, and receiving a downs diagnosis,that is being propagated by Phillips.

The criticism of those women who terminate is implicit in any suggestion that the NIPT shouldn't be available

I'm not aware of anyone saying NIPT shouldn't be available, or anyone undermining a woman's right to choose to terminate if she wishes. At the same time, offering screening in practice is not necessarily the easy 'invitation for more information on your pregnancy' that it appears and that needs to be acknowledged, in part because it has implications for disabled people who deserve to be considered also. But mainly because it affects the experience that women have at a very vulnerable time in their lives.

lozter I get where you're coming from but let's not lose sight of Sally Phllip's experience and the fact that she is looking at her precious little girl and sees herself as standing up for people who are in no way 'defective'. Sally is more concerned mother than political campaigner and her message so far hasn't, I feel, been offensive in the way you are suggesting.

There is opposing the screening itself, and opposing the screening in the way that screening is being offered at the moment. They are very different things.

Those opposed to screening as it is now, what would you want to see from a screening system?

I live in Ireland where for reasons to do with both anti-choice ideology and poor healthcare investment current screening is abysmal - the first trimester nuchal screening routinely offered in the nhs system is not offered in the public system at all and many women don't even get 20week anomaly scan. If you want to read firsthand the devastating consequences of inadequate screening on the grounds of anti-choice ideology of just this sort read the current thread by @anyciar on Twitter. It is sad beyond belief and again hammers home the point that this screening detects not just downs but Edwards/Patau etc. I challenge anyone to read this and argue against a woman's right to full information and choice in pregnancy.

gonetoseeaman yes the "Don't Screen Us Out" campaign is saying the NHS should not offer us the NIPT test. Here from their website:

'Primarily, we are proposing that the cfDNA test should not be implemented into the UK Fetal Anomaly Screening Programme'.

I'm pro choice. For me that means I support abortion on demand for whatever reason the mother has. There is no 'acceptable' reason, there is no 'unacceptable' reason. There is, for me, simply a choice which I as the person carrying the pregnancy gets to make. So this test doesn't make any difference to that position.
However I think you're kidding yourselves if you think the case for making this test more available isn't predicated on the number of earlier terminations which will result. A termination is much less costly to the state than lifelong health costs of a disabled child and adult. An early termination is cheaper than a termination later in pregnancy. It may be labelled as giving parents more information but there will be an expectation that this also drives down the costs of pregnancy screening and termination. So I think it's worth hearing Phillips and mothers like her urging us to consider all aspects of the debate, in the interests of balance.

Sally Phillips' is using her privileged position of fame to pursue her own anti-abortion agenda thinly veiled as a journalistic investigation of a screening test. Of course she loves her son. Great that she wants to support individuals with disabilities. Less great that (apparently - and I am basing this on her own radio comments and the guardian article) she does not appear to respect the choice of others or even to empathise, from her position of middle class privilege, with those unable or unwilling to become life long carers to individuals with Down's syndrome (and I say DS as this is the focus of the programme not because I think this is the only condition it tests for). In terms of misinformation, the coverage, if not Phillips herself, presents the new test as being the first time diagnosis has been possible. It clearly isn't and this misses the numerous advantages that the new test offers. This is about making informed choices. Sally Phillips made a choice to not get screened. I respect that and respect her child's right to live a fulfilling life. I don't want Sally Phillips, or even 'society', to get to make my individual choices for me.

Of course the test is being offered on the NHS because it will result in more terminations, and more early terminations. Let's not kid ourselves.

But what's the alternative? Women having babies with genetic syndromes that they didn't want, and would have terminated if they had the information? How is that a good thing?

If campaigners want to reduce babies with DS being aborted then the way to do it is to present and promote positive images of DS. Not to hinder information for women.

of course the test is being offered on the NHS because it will result in more terminations, and more early terminations

I would have thought it was being offered because it's cheaper/easier than CVS/amnio.

My baby showed soft markers for DS at the 20 week scan. I'd had a miscrriage 2 months prior to this pregnancy so i couldnt even consider an amnio. I paid for the 'harmony' test privately as i personally required as much information as possible. I am an older mum and my main concern with downs was me and my husband dying and leaving a young adult who potentially couldnt live independently. Anyway I absolutely think this test should be available on the NHS- to allow informed decisions to be made.

There are at least five requests from the production company on the mumsnet media request thread. I wonder about the ethics of that and the support offered especially given the gymnastics TV clip anecdote.

And yes, no longer surprised, I too assumed cost saving would be achieved by reducing cvs and amnio and possibly making termination more straight forward as it could be done earlier.

Oh, I'm all for testing. I was a single mother and though raising a healthy child without support is doable, I can't imagine what I would have done with a severely handicapped child. And, as others have mentioned already, what happens when you die.

People with Down Syndrome are adorable, but some do come with very severe handicaps and if they are not lucky enough to be born into a family with the financial, physical and emotional resources to look after them, what then happens to them?