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?

The thing is, I'm not convinced that this test does anything other than make existing testing techniques safer. Most of the women I know have thought through their own personal attitudes to testing before it gets to the 12 weeks stage. Those who would abort for a positive result for DS or other trisomies choose to have the soft markers tested for, those who would not ask the sonographer not to tell them the result. All the new test does is remove the risk of miscarriage for the more accurate form of testing required to indicate whether best guess based on soft markers was right or not.

I say this as someone who would have tested had the soft markers come back indicating a high risk. I was single by that stage in pregnancy, and looking after a child with additional needs while trying to be main breadwinner was not something I could have coped with (cf. comparison upthread with parents saying "we can't cope with a third child financially.") One of my closest friends, who is happily married, has just chosen not to have the tests for soft markers done, because she feels she would be in a position to cope. That's what the option of testing facilitates: individual women making the choice that is best for them.

Bloop I am everyone can see and empathise with your points which are totally valid.

However for me termination is absolutely a black and white discussion. A woman should have full bodily autonomy, just as a man has, and so have the absolute right to terminate or not terminate a pregnancy without reference to any one else and for any reason. That reason being hers and hers alone to make.

Euthanasia is a different discussion. Killing a disabled person because they are judged a burden would be murder.

A living will is again different.

You can't compare termination voices with euthanasia I don't think.

Those who would abort for a positive result for DS or other trisomies choose to have the soft markers tested for, those who would not ask the sonographer not to tell them the result.

Again, No. Choosing to know the results of the test, and choosing to abort is not the same thing. They are two separate decisions.

There have been multiple people on this thread who have chosen to have the tests and then not had abortions, yet still people are equating testing with wanting abortions.

Ignorance isn't a virtue. Knowing about serious conditions (or potentially serious conditions) in advance so you and the doctors can be prepared and give the child the best possible outcome is an equally valid reason for testing.

Having the correct information is VITAL in making an informed choice.

The role of the hcp is to provide that information and outline the choices available in a manner the patient can understand, neutrally and to outline the options available

People with Down syndrome are valuable. That is not a stance in conflict with a couple having correct information.

The choice whether to continue with the pregnancy or not lies solely with the parents. If they decide to continue then knowledge that the baby will have Down syndrome/Edwards/pattau allows the medical team to be aware and ready to deal with any complications /extra care the child may need.

Full knowledge, sympathetic supportive non directional counselling. Informed decision making. No risk of miscarriage as there is with amnio

The push against nipt worries me because under the 'concern for people with X condition' dressing there is the old attitude that a woman's body isn't her own.

slightlycrumpled my son has 16p deletion it has caused various disabillities i wonder why some of the rarer chromosome disorders are not tested for ?

Karen, I'm so sorry for the way you were treated throughout your pregnancy. I've been taken to the 'bad news' room too, following a miscarriage, but I could see the staff were doing their best with the limited resources. I've just this morning been for a scan which was a special session for women who may have problems (I'm not in the UK now), which I thought was a good idea. It was a bit strange though, I got good news but the woman after me left in tears so even special sessions don't avoid people having different experiences being together. I suppose the important thing was no one was made to feel they were 'abnormal' for needing to be there.

X2boys I think chromosome deletions and translocation need a full karyotype for a diagnosis which takes a long time (we waited 6 weeks to find out if dd2 had full t18 or a translocation that could have been passed on from us)

If Sally phillips is pro-choice, why was she speaking at a rally organised by anti-choicers society for the protection of the unborn child? And why is her face all over their website?

She is entitled to her choices. But i dont think she would extend that right to those who make different ones.

Eradicating polio does not mean killing all current sufferers. Same for other diseases and disabilties.

Yay special

SPUC are a disgusting organisation.

Karen again so much sympathy and support - what a terrible experience. I totally know what you mean about the bad news room - I've been there twice. When pregnant with DS3 - thankfully ok, I couldn't bear to have the 12 week scan at the same hospital as my two non normal pregnancies. And I had very good treatment.

I can understand not wanting to upset those with normal pregnancies, but always being shuffled off into the 'bad news room' and being treated as 'other' added to our sense of trauma.

Forgive me if I'm getting this wrong, but I thought the rationale for a separate room for those who have had bad news was the other way round, i.e. because it could be painful for someone who has just lost their child for example to be sat in a room of happy smiling women who still had theirs. Not because those with 'normal' pregnancies are being prevented from seeing upset.

I am sorry for all that happened to you, and definitely agree that there should be support for families whatever choices they make.

Sally Phillips on 5Live now

And the discussion is framed entirely about a 'test for Down Syndrome' - no mention of the other lifelimiting and often fatal syndromes that are also screened for.

She said in an interview this morning that she feared we were heading towards a position were the only people who'have DS children would be those wo'd made a positive choice to do so and she found this unacceptable.

That's just arguing against choice.

Well it is isn't it?

I can't think why she would want people to have DS children who had not made a positive choice to have them. Currently there will be families like hers (and mine with Noonans) who found out late in the day and made the best of things. In my case it was making the best of his very short and hard life. But there will also be those for whom a DS child they weren't planning on is completely unmanageable because of their family situation/finances/. I. Our case not knowing we were having a baby with a genetic. Condition put us under extreme financial pressure - we almost most our house as well as our baby. Why is continuing that possibility a good thing?

Apologies for large number of typos - should have read, in our case we almost lost our house as well as our baby -

It's none of Sally Phillips's business - or anyone else's business at all - if a woman makes a 'positive choice' to continue a pregnancy or to end it. She wants to advocate for kids/adults with DS - fine, good cause. But she is saying that women shouldn't have a choice about ending a pregnancy if a problem is detected. And that's not disability advocacy: that's something else.

It would be fabulous if the only people who had DS children were those who had taken a positive choice to have them. Surely that would be an excellent outcome for the children?

I wonder if there are statistics on babies with downs syndrome being given up for adoption. This is something NIPT would help. Making sure as many disabled babies as possible are born into prepared, loving families.

Light thelamp completely agreed really concerned she is getting so much airtime.

Gruffalo absolutely - this point should be made.

Yes it's worrying and very little of the coverage seems to challenge the view she is presenting.

I think Jane Fisher the director of Arc (antenatal results and choices) who appeared on the programme is taking this on. Not sure who else is though.