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 have more experience of screening and diagnostic testing than possibly many women. 9 pregnancies, 2 live births and termination for DS, amongst other outcomes. Pregnancy for me was a stormy path.

However, at no stage did I come across the positive result = automatic termination stance amongst HCPs. Without fail, they took the lead from me and offered me time to consider what I would do. I'm not saying that the opposite doesn't happen but I feel strongly that the experience that we had should be recalled, for balance.

We went through some difficult times but the care, support and time of those involved in our care made life that much more bearable. They sensitively realised that in discussing my own case, I was the 'expert patient' - no one knew more about my own unique set of circumstances than me. And I made my decisions in that knowledge.

Eleven years on, I have no regrets. I made an informed choice. Screening tests were one invaluable part of that process.

ShangriLaLa so sorry to hear what you've been through. I've been through it twice - once for Noonans and once for Downs and we got great support too. And likewise, informed (v. difficult ) choice, right for our family and what we'd already been through, no regrets.

Oh my goodness Shangrila, you have been through so much. I have spent time in the 'bad news' room but eventually got a clear amnio. There was no pressure to make any choices. The consultant offered to turn the screen away during the amnio but I didn't take this to mean get rid of the baby.

I think medics always deal in worst case scenario first then statistical risk second. I'm not saying this is right or the only communication that should happen when Downs is confirmed but I dont think medics have an anti-Downs agenda. Think about consenting to any operation or procedure. Medic will tell you that you can die, be paralysed or any number of other alarming outcomes (ie worst case scenario) before saying what the odds are of these things happening. I wonder if with Downs they are keen to move things on as ideally the TFMR needs to happen sooner rather than later.

Any how, the Down's syndrome society have a campaign to provide better quality information concerning the reality of the condition and, to their credit, do not say they are anti this screen or any others. I wonder if they are in the documentary tonight?

Thank you both - your stories really do resonate with me, as do so many here.

This was an issue that occupied me day in day out during the years we were trying to conceive our second child. It is strange to revisit it after so long.

Much has been said about who should have a voice in the debate about pre-natal testing. I think women who test positive (regardless of eventual choice) have something meaningful to offer and I would hope that any input they might give is valued.

SP lost all credibility for me with the comments quoted upthread about people with Down's being 'a separate race'. That is just bollocks.

jessica I salute you for your comments on this thread. You are a beacon of common sense, rationality, and support for women's choice. Good for you.

Here is the hard data on the NIPT test from the BMJ report on the trial carried out:

"In an annual screening population of 698 500, offering NIPT as a contingent test to women with a Down’s syndrome screening risk of at least 1/150 would increase detection by 195 (95% uncertainty interval −34 to 480) cases with 3368 (2279 to 4027) fewer invasive tests and 17 (7 to 30) fewer procedure related miscarriages, for a non-significant reduction in total costs (£−46 000, £−1 802 000 to £2 661 000). "

In addition of the women who tested positive for DS 30% chose to continue with their pregnancies as opposed to the current rate of 10%.

So just to reiterate fewer invasive tests, fewer miscarriages, lower cost to NHS and higher percentage of families continuing with DS pregnancies. If anything the results show a tendency for people to screen in not 'screen out'.

The difference they are objecting to is the increased rate of detection because they don't want people to have a choice. It is about denying knowledge.

Thanks Johnny.

That really does mean a lot!

:)

Interestingly the BMJ study puts the increased rate of people deciding to proceed with DS pregnancies down to the fact that introducing the new screening test meant retraining the staff who were delivering it and producing new leaflets and information for patients.

Completely counter to the prevailing view coming across in the press, the new test seems to bring the perfect opportunity for the changes to the way health professionals present diagnosis that the campaigners are calling for.

Thanks for raising this important issue Eeyore - feel it's given people a chance to have their say. It might be worth the people from Arc reading this thread as they are on some of the interviews about this.

Those results say it all don't they? Knowledge is power and being informed helps make the best choices for each women whatever that may be.

Really interesting and informative thread.

Thanks for disseminating the BMJ article eeyore. It's fairly clear to me that this campaign against NIPT just doesn't make any sense. The increased detection rate hasn't resulted in an increased rate of terminations. Women are being spared painful, traumatic and risky tests. The NHS saves money. It's a win-win situation.

The only objection, as you point out, centres around an anti-choice agenda which desires babies with Downs to be diagnosed after birth and not before. It seems that they view this as the way to ensure that Downs is never eradicated. Never mind the fact it's unlikely that it ever will be.

There's also an inference with SP that if people knew what having a child with DS was really like people wouldn't choose to terminate

Indeed. I would be amazed if this isn't the central message of the entire doc.

I'm certain that's what the message will be, Jinkx. The campaign seems to be summarisable as: 'Women should have a choice. But they shouldn't choose to terminate a pregnancy because of Down syndrome.' In no way is that a pro-choice position - they should just come clean about that.

What do people think of the NHS not releasing the info on sex of the baby? That seems odd to me, if you have information about my pregnancy I think I should get to see it.

I think info on the baby's sex should be released if the woman requests it.

I agree Light.

With the CVS and amnio you can find out the sex as I did with my DD so why not with this new test? Apparently it's fine to find out the sex if you've gone through something traumatic that you're allowed that information.

I asked to know the sex after CVS and was told - no problem. They didn't volunteer the info, though.

I hope this link works, but this tweet and SP's reply is very interesting

twitter.com/onetinyindian/status/783635462086860800

Agree Light I had an amino and wanted to know basically for practical reasons. Of course women should be told any info they want.

Interesting thread!

I think there is a slight parallel with the BF FF business....

I don't think women should be put under pressure or have their decisions whether or not to BF or FF judged. But I do think advertising of FM should be banned. That is because it acts at the societal level to bias people's intrinsic wishes on the matter, in a way they may not be able to bring into the conscious, in order to challenge.

So I think I come down in the same place on this debate. It is fine to make this a free choice and provide all the information up front - but only if your society isn't putting out biased messaging that pushes people away from making an actual free choice based purely on their personal circumstances and opinions. So does our society actively or subliminally project disabilities such as DS as undesirable? well..duh...yes it certainly does.

So in the current societal environment I think giving a women a free choice is impossible and basically a myth.

The answer isn't to withdraw the new test though - the answer is to do far more to counteract the societal biases at the point of decision making...or if you really want to fix the problem stop disenfranchising, demonising and otherwise disappearing people with disabilities from society.

The more I read about Sally Phillips' stance on this issue, the more it upsets me. She has a beautiful son whom she clearly loves deeply, and that's great. What's not great is then extrapolating from her own situation to others'.

While many people with DS live independent lives, attend mainstream school and hold down jobs, the variability of the condition means that many have no hope of doing this. I have a sibling with DS and autism who is profoundly mentally disabled and will never be able to live independently. My sibling's future is a constant source of worry, particularly given cuts to adult social care and the government's current anti-disabled stance. Sally Phillips is presumably fairly wealthy and doesn't have to worry about how her son will be provided for in future, so she has absolutely no right to speak on behalf of all families of people with DS, many of whom face constant fear and uncertainty. The NIPT exists, we can't uninvent it, and we absolutely should not force anyone to give birth to a child they don't feel they can cope with or provide for.

Phillips also needs to reconsider the idea that if people simply knew what having a child with DS was like, they would choose not to terminate. I absolutely know what it is like, and would almost certainly terminate a DS pregnancy.

I guess the crux of your aygument, IceBeing * is that people cannot be trusted to make the right choice for themselves, and that's why (using your infant feeding analogy) formula advertising needs to be banned?

See, I have issues with the way formula is demonised. The banning of advertising, promotions and loyalty points just makes people who FF feel like they're damaging their babies with inferior food. Because those are the messages that permeate from everywhere. Women aren't so stupid that they would ditch breastfeeding because they saw a nice advert. Also I think people just need to get over formula milk because most babies are given it and the inherent health "risks" are way overstated.

But I digress, because I don't think it's a good analogy

You think free choice, or unbiased choice, is a myth because people will be automatically drawn to terminate a DS pregnancy, because society is biased against disability? Isn't it still free choice though?

So does our society actively or subliminally project disabilities such as DS as undesirable? well..duh...yes it certainly does.

Agreed. But that is because, and let's be frank and unemotional here, it is not something that parents actively desire.

Interesting interview with SP here from about 1:40 www.bbc.co.uk/programmes/b07xf30x pretty clear her stand point is that termination shouldn't be an option after a DS diagnosis. She gets quite angry when challenged on it by the interviewers.

jinkx I completely disagree with your statement that people aren't taken in by advertising. Companies spend billions on it per year for a reason. No one consciously thinks, 'oh that formula looks good I'll stop breast feeding' because they saw an advert, but the adverts add up slowly over your whole lifetime to tell you that formula is fab and easy and associated with smiling mums and smiling babies, and beautiful clean houses with fantastic furnishing and trees through the windows, and why not FF because its normal and natural and I see people doing it on TV every single day etc. etc., and that DOES influence you, down in the places you can't rationalize.

Imagine if people with disabilities were portrayed on TV as positively, or as often as formula feeding is? What affect would that have on people hearing their child will be born disabled?

Repeated exposure and constant positive portrayal are VERY powerful means to bias the thinking of individuals and society as a whole.