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

(425 Posts)
eeyoresgrumpierfriend Mon 03-Oct-16 15:35:05

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?

JulietteL Mon 03-Oct-16 15:42:44

I don't know about mumsnet's stance on the issue, but on the substance I agree with you.

It smacks to me of withholding information from women and couples because they can't be trusted to make the "right" decision.

Surely the only right answer is to give people the best information possible to allow them to make their own informed decision based on their own circumstances? The choice whether to continue with a Downs pregnancy or not is hugely personal and is only the business of the individuals involved.

MackerelOfFact Mon 03-Oct-16 16:02:42

I hadn't thought about it like that OP, but I agree actually. Nobody is attempting to 'eradicate' Down Syndrome with the new test - by saying that, surely it implies that the only reason people with Down Syndrome exist is because of poor screening, and that with better screening they would all have been aborted. IME and IMO, that's clearly not the case. Many parents decide against screening, or make the decision to continue with a trisomy pregnancy knowing they will give birth to a child with this syndrome.

There will be a small percentage who do terminate based on the results of the new screening who might otherwise have opted out of an amnio due to the risks involved, but I don't imagine this will be a huge number. As you say, it's about choices.

Cheby Mon 03-Oct-16 16:10:24

I feel really bloody strongly about this. I will support any attempt to ensure better, more up to date and accurate information is provided by HCPs about DS, but I find the attempts to prevent this test being provided for free on the NHS absolutely abhorent and an assault on women's reproductive rights.

At the moment we can offer women a test with a 1-2% risk of miscarriage. This test carries zero risk of miscarriage. The argument that the test should be withheld is beyond the pale IMO.

Plus this test is not just for DS. It's for Edwards and Pataus as well, which are conditions incompatible with life.

LightTheLampNotTheRat Mon 03-Oct-16 16:15:23

Entirely agree. Supporting non-invasive testing is not an attack on anyone's existing child, as some of the campaigners seem to think.

CaptainSnort Mon 03-Oct-16 16:18:58

I wholeheartedly agree OP.

hazeyjane Mon 03-Oct-16 16:19:11

I think the perspective from the point of view of people with Downs Syndrome and the families of people with Downs Syndrome, is that people are not fully informed about the realities of Downs Syndrome. People make assumptions about Downs Syndrome and disability in general, and when a test places a decision in peoples hands, the vast majority abort. I think the people who have made the programme on Weds and the people behind the Don't Screen Us Out group are saying that the medical profession meet the results of a downs syndrome diagnosis with negativity and a weight towards termination.

What they are also asking is a very interesting ethical question, and one that will be more and more prevalent as genetic testing becomes more refined. Will we be able to test and abort for all genetic conditions? What if we could test for autism? Mental illness? What is it about Downs Syndrome particularly?

In countries where this test has been introduced the focus is very much to eliminate any future occurrences of Downs Syndrome.

We are heading down a very interesting path with medical testing and genetic medicine - there are huge and important discussions to be had and it is vital that the voices of people with genetic conditions and their families are heard.

I believe in a woman's right to choose, I have experience of a close relative having late term termination and completely support their decision, and held their hand throughout the process.

But as well as this being about people making this huge decision with as much information as possible ( including the positives coming from people with disabilities and people who are the parents and families of people with disabilities) this is also a conversation in a wider context. If you look at the comments after any of the numerous articles about this, the attitudes towards people with disabilities is overwhelmingly negative - they cost too much, they are unhappy and unhealthy, they have nothing to contribute to goes on and on. We need to change these attitudes because they are poison.

JinkxMonsoon Mon 03-Oct-16 16:22:19

I understand where you're coming from OP. I always find threads on this kind of subject tend to get dominated by people who say they personally would always refuse testing because they "wouldn't act on the results". Which is fine, their prerogative, but comes across a bit like virtue signalling.

When there's a poster considering whether to go for the triple test (I think that's what the standard blood test is called?) it bothers me to see the majority of posters saying they wouldn't. Like the implication is that women who opt for the test are less moral/virtuous/whatever. Like a woman should feel guilty for taking the test because of what that implies about her intentions.

Knowledge is power whether you'd "act on the results" or not.

EweAreHere Mon 03-Oct-16 16:22:53

I agree completely, OP.

PolterGoose Mon 03-Oct-16 16:23:18

Message withdrawn at poster's request.

Hygellig Mon 03-Oct-16 16:24:59

I'm not sure about the MN stance (SP's forthcoming programme seems to be getting a lot of attention), but I am very much in favour of all women being able to have a free noninvasive test. This is not the same thing as saying that people with DS shouldn't have been born or have nothing to offer. There will be plenty of women who decline the test, just as many decline the currently available screening, and others who will decide to continue with the pregnancy.

butterfliesandzebras Mon 03-Oct-16 16:27:15

Agreed. I can understand that some people are against testing at all (which is fine as a personal choice), but if the nhs is going to offer a test (which it does) surely the more accurate and safer test is better.

UsernameHistory Mon 03-Oct-16 16:27:26

It is strange how so many people see the test as an attack on their child or their choices.

We had an amnio test and thankfully negative (no problems) with our middle child. Whether we'd have aborted is no ones business but ours but a safer and more accurate test is a good thing.

We had serious and frank discussions and decided we wouldn't but if someone chose to then they would certainly have my sympathy and nothing else.

I know we aren't there yet but surely there is a point (perhaps hours after conception) where if a life-threatening problem were found it's in everyone's best interest to stop the pregnancy.

Gmbk Mon 03-Oct-16 16:29:52

Why shouldn't I abort a baby with Downs Syndrome?

I think the "line" that is crossed to make abortion acceptable for Downs is the chromosomal abnormality part. The same with Edwards.

I daresay if you could test for autism then people would abort if they found out their child would be born with autism. Personally I don't disagree with their right to do this. People abort babies for all manner of reasons. Why are some reasons more acceptable than others.

NerrSnerr Mon 03-Oct-16 16:30:27

I agree OP. I have been reading what has been in the media recently with interest. I know someone who has a son with Down syndrome who has a blog who feels very strongly against testing. While I see her point of view it is up to the individual to chose what is best for them and their family. The think safer testing is a very good thing. It is difficult to feel able to speak out if you chose to end a pregnancy due to DS, I know I wouldn't feel able to tell some people I know because of the fear of being judged.

londonrach Mon 03-Oct-16 16:32:34

I agree op. A friend was one of that 1-2% who lost her much wanted baby who as it turned out Didnt have downs. Id like to know and as someone who works with patient who have downs i would mainly due to the associated medical conditions.....the heart and the one that had me in tears when i saw a patient...early onset of dementia. Ive never forgotten the man who had downs i saw with dementia (he was 30) and the end stage of this horrible disease. This test gives parents the facts without risk of miscarriage so i cant see anything wrong with it.

RazWaz Mon 03-Oct-16 16:32:51

I have a genetic disability. I am one of 11 members of my family who had a chance of it being passed onto and 10 of those 11 have it, the other is a carrier.

The chances of my children getting it are around 96% according to the specialist I saw. When I first decided to start trying for children I saw a genticist for advice about if screening would be possible but the technology isn't likely to be available for at least 5 years and it won't be affordable for many more after that so its not an option for me.

But if it were an option I would 100% choose to take the screening and ensure I didn't pass my disability on. Being disabled is a lifelong burden that limits your life choices and while you can overcome some limits, there will always be something you can't do that others can.

That doesn't mean my life or the life of anyone else is worthless, we all have to find our own paths through life and disabled people can find fulfilment and joy in life, but I wouldn't wish anyone to have a limited life.

I do agree that it is an interesting stage of medicine and progress that we are reaching and it throws up some serious ethical questions but overall I think a life without limits should be the ultimate goal every parent has for their child.

My disability is deafness by the way, one that many other deaf people believe should be preserved and celebrated. I don't agree with that view at all.

splendide Mon 03-Oct-16 16:35:37

I am pretty fundamentalist about the right to terminate pregnancy for any reason you want so I do support the testing but I don't think it's completely straightforward.

What if you could test for low intelligence? Hair colour? Likely adult height? Propensity for obesity?

There's a road you start down and it leads ultimately to eugenics surely. Maybe that's ok? I think it's absolutely worth a discussion.

SolomanDaisy Mon 03-Oct-16 16:35:54

I am in a country which has introduced the test for women with a high risk triple test screening (which is the same as the NHS are proposing I think). It's absolutely not true that the focus is on eradicating down syndrome. Most women want to know and the focus is on eradicating unnecessary risk through amnios. I was just above the cut off for being offered the NIPT and would definitely have had it done, even though I probably wouldn't have had a termination for Downs. I'd want time to prepare and the option to terminate for more serious conditions. As it happens there is still a small possibility my baby may have a chromosomal disorder (and I'm way past the point of terminating) and I will have the NIPT if it's offered. I'd be bloody furious at anyone campaigning to take away that possibility and leave me with the option of amnio or not being prepared.

MrsDeVere Mon 03-Oct-16 16:35:59

Message withdrawn at poster's request.

LightTheLampNotTheRat Mon 03-Oct-16 16:38:53

I have a severely disabled child. (Not DS.) I love her very much. But if a prenatal test for her condition were ever to become available, I wouldn't judge anyone who decided not to proceed with the pregnancy. It's okay to decide that parenting a child with a disability isn't something you can do, if a choice is available.

Butterpuff Mon 03-Oct-16 16:40:54

Once you have invented something it cant be un-invented no matter how much you would like it to be. Removing the chromosomal screening test altogether is another debate. But once you have a better, more accurate, non-invasive way of doing a test already offered it should be used.

However having recently had the experience of a high NT measurement at my dating scan I will say that parts of the NHS could do with some improvements in how they handle abnormal results. A suspected, but undiagnosed chromosomal abnormality had us placed in a bereavement room and a suggested of CVS (before combined bloods had even been taken) and a doom and gloom reaction. Our baby doesn't have a chromosomal abnormality, it has a serious heart problem - which when diagnosed was met with a positive care and treatment plan, starting with birth and explained until our baby is discharged from child services and transferred to an adult consultant.

JinkxMonsoon Mon 03-Oct-16 16:42:50

The Daily Mail are calling it a "chilling medical test". Chilling hmm That's like saying amniocentesis is chilling. I think that kind of rhetoric is so damaging.

MrsDeVere Mon 03-Oct-16 16:45:07

Message withdrawn at poster's request.

Manumission Mon 03-Oct-16 16:47:19

I haven't read everything in detail, but isn't the crux of Sally Phillips' gripe the assumption that mothers told of genetic conditions will necessarily opt for ToP?

That's not choice, it's a conveyer belt. Choice should always be a completely free choice, whatever the circumstances surrounding the pregnancy; No assumptions, no defaults.

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