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?

Tom Shakespeare presented the case well this

Sorry posted too early by accident.

Tom Shakespeare presented a balanced case for testing this a.m. too.

Jane Fisher is definitely taking it on. The one article I read though was completely dismissive though.

“We have the most expensive state-of-the-art Down’s syndrome detection test and the ability to terminate right up until birth. But no allowance is made for the point of view of the other side. The families of people with Down’s syndrome are not consulted. People with Down’s syndrome are not consulted. There has never been an ethical debate about it.”
A quote from one of her articles. Personally, I don't feel that my right to prenatal testing has anything to do with the families of children with down's syndrome. I don't believe anyone but the women making these choices should be taken into consideration.

That is good - just think it is not on for one high profile person to weigh in on one side of such a complicated issue with such a simplistic approach.

Sorry I should clarify that quote was from Sally Philips not Jane Fisher obviously!

That's such an odd quote. Why would an individual woman, or couple feel the need to consult with the families of people with Down's? It's their choice alone to make, no consultations necessary.

I can't think why she would want people to have DS children who had not made a positive choice to have them

Me neither! I've always been pro-choice because I believe that no child deserves to be born into a family where they are not wanted. Emma Goldman at the turn of the twentieth century fought long and hard for contraception because she had been an unwanted child.

The families of people with Down’s syndrome are not consulted. People with Down’s syndrome are not consulted. There has never been an ethical debate about it

And neither should there be. The individual parent couple is the ONLY entity who makes that choice. The choice is theirs alone. Once they've made it, they should be supported in that choice. That means the ability to not continue the pregnancy is open. And it means if they do continue the pregnancy then there is appropriate medical care/support for child and family.
Campaign for better support for families with ds and families with children who need it...not for removing women's right to bodily autonomy.

It sounds like Phillips does not think that Downs should be a reason for abortion.

She got lucky with a child who has a good quality of life, and she is also rich enough to be able to deal with whatever happens.

As others have said; Downs is a spectrum and you simply cannot know what the outcome will be - same as for any child, of course. Hence there must be choice.

Only the real 'slippery slope' fools (who are just anti-choicers in disguise) are arguing that this equates to trying to wipe out people with Downs, or any other disability. Ideally we would have a cure - but we don't and I don't think we ever will.

It wouldn't wipe out people with Down syndrome anyway. It's not (except in very rare cases) 'heritable' per se. Most cases occur 'de novo' as humans are rubbish at segregating their chromosomes. It's more 'one of the ways cell division goes wrong' than 'here's a gene that causes X.'
Misunderstanding of the genetics

Speaking as the birth mother of a DC with Downs Syndrome who was placed for adoption some years ago, I am very much in favour of this test as the testing I had showed a very low risk of chromosome problems and therefore I wasn't offered further testing. Rightly or wrongly, I found the diagnosis at birth to be devastating.

I'm unsure whether this test will effectively replace the nuchal, or just the amnio/CVS. Ideally the nuchal as there is a decent % of chromosome issues that are not detected using that method and therefore if the NIPD is only used for mothers with a high risk then we will still be in the situation where many babies that are born with DS will still be to those mothers who were not given a high risk from screening if that makes sense.

That is not to say however that my DC's (or any other DC with DS's) life is worthless - far from it. However the best outcome I think would be that every child with DS to be born to parents who had made that choice as someone stated up thread.

I appreciate the argument is far more complex, especially around other disabilities that cannot be screened etc., and I don't have all the answers. Just my own experience.

💐thispaininsideme - interesting to hear your experience.

hubbles - indeed. What I was (not clearly) trying to say is that offering a reliable test for Downs and allowing abortion of affected foetuses does not (and of course should not) mean that people who are born with it have any fewer rights or less value.

the same argument is used against right to die - when the person concerned really can have a say. Various activists have said that this will lead to killing of the disabled as a matter of course. Obvious nonsense.

I detest those who want to enforce their choices on others.

Yes, thank you for sharing that

The subtext, if we're to be generous, is:

You think Down's is a bad thing. We don't think it is. By forcing you to have a child with Down's - not letting you test too easily - we will force you to see Down's is a positive!

It just leaves me perplexed to be honest that anybody purporting to be pro choice could be anti these tests as the only reason to avoid them is that 'more women might terminate.'

I am one of the 1 - 2% who miscarried a perfectly healthy baby after having amnio due to a high risk nuchal result. My next pregnancy also had a high risk nuchal. We had CVS which was very stressful - both waiting the results and hoping that I wouldn't be unlucky enough to have a second loss. But we knew that we are not financially secure enough to afford to safeguard a child with additional lifelong needs. I am happy that Sally Phillips and others can, but I welcome improved testing with open arms. Am relieved that hopefully other families won't go through the experience that we went through.

Cashel I'm so sorry. That is tragic 💐

Cashel.

Cashel

People don't realise how traumatic a CVS/amnio is even when it goes well. Safer testing is for the good of everyone.

That's so awful Cashel. I just don't know how anyone can argue against safer testing.

Wishing you the best for the rest of your pregnancy.

So sorry cashel ~ how anyone can object to a safe method of testing is just beyond my comprehension

Pregnancy long since over and happily result in our gorgeous giddy daughter who is four now. Thanks for all the good wishes. Xx

I don't feel that my right to prenatal testing has anything to do with the families of children with down's syndrome.

Neither do I. And the argument would be more balanced if someone who had been through Cashel's awful experience was making the case for the other side. It's presented too much as cold, clinical medics versus lovely warm mummy with her child.

I was a high risk twin pregnancy earlier this year. We had the (quad) blood tests as offered by the NHS (couldn't do the nuchal measurement). Our results came back as 1 in 40 for all trisomies and we were offered amniocentesis for both babies, therefore with an increased risk of miscarriage.

When we queried it, we were told that we should never have been given the blood test as it's unreliable for multiple births as there is no baseline for hormone levels. The only thing they could offer to fibd out more was the amniocentesis which I didn't want because of the risk.

We ended up paying for the NIPT privately and the results said that our babies didn't actually have any of the trisomies.

I'm entirely in favour of the NIPT being available on the NHS - forewarned is forearmed regardless of the decision made at the end of the process.

I have done a lot of reading up on this today, especially people's differing views (I have time on my hands as I'm signed off work with hg). I cannot see any reason why the NIPT could be a bad thing. It is safer and less invasive than an amino. How can that be anything other than bad? I have read a number of blogs today about how people chose not to be tested and how they wouldn't terminate a pregnancy. That's great- they have clearly thought about it and made a choice. Other people may choose to test and may make the choice to terminate a foetus with DS. Neither choices are wrong. It is all about choice. In the UK it is legal to terminate a pregnancy and a woman can make a choice whether they want to, whether that's for social or medical reasons. No one should be made to feel bad for their choice. Pro choice should be just that, not just pro choice if it's the 'correct' choice.

From reading this thread and elsewhere it seems that there needs to be work educating staff about communication and breaking the news about increased risk. That doesn't mean the new test isn't a good thing.

As someone said upthread, it is a worry that the media (and Mumsnet I am looking at you too) are allowing Phillips to dominate this discussion largely unchallenged. Phillips's narrative is all anti-choice. The fact that she seems to sign off most interviews with a glib statement that she is pro-choice does not make her pro-choice. She reminds me of people who spout racist bile then claim they are 'not a racist'.