NIPT

[Chanel05]

I'm thinking about getting NIPT at 10 weeks. My NHS scan is booked for 12+5. If I get the NIPT, will I also need to have the blood test at my 12 week scan still? Or will the NIPT tell me what I need to know?

There are several considerations within what you write that realistically pose barriers in terms of implementation. As I have said, in the current context NIPT remains dangerous. That is irrespective of what it has the potential to be. For the time being I feel (contrary to your reply) in raising awareness and having open discussions around these dangers, I am providing solutions - rather than naively suggesting there are easy fixes. Education, access to information and the “reputable” providers are only answers where a person has access to those privileges to begin with - which you demonstrate you already do (and as I have already challenged, you are arguing from this privilege and your own frame of reference which does not fit everyone else). Also I would add:

1. I have already shared scientific journals within discussions which clearly demonstrates the existing combined screening and targeted ultrasound can be extremely effective without use of NIPT. The model is robust and as even the most recent research clearly demonstrates NIPT, although not disputing some benefits, cannot safely replace serum screening and so cannot be described as “better or superior”. molecularcytogenetics.biomedcentral.com/articles/10.1186/s13039-019-0457-x

2. You ultimately suggest that although it is normalised taking NIPT privately from as early as 9 weeks, and you are aware this may result in increased anxiety/longer waits - and is currently placed within a dangerous cocktail of lack of support - the inevitable trauma this has the potential to cause should be managed by both the individual in terms of accountability and finance. To suggest I have conflated trauma with NIPT is misleading within the context that we have all acknowledged the current situation directly increases the likelihood of said trauma - for all the reasons that have been explicitly laid out.

As for your suggested solutions regarding education and access to providers... Essentially this becomes an elitist system which ultimately devolves the provider of accountability and imho, fuels the narrative that the current system is acceptable - and this remains unethical imho however you dress it up.

Ultimately you continue to run the danger of speaking from a position of privilege - which ultimately can suggest that you believe if an individual is less financially well off or less educated, they deserve trauma?!

We share the views that the current system doesn’t work and the reasons why. So surely speaking up and challenging these systemic failings is important? Which is exactly what I have aimed to do within my posts.

@SarahD19 are you suggesting (as your post sounds) the current nhs 12 week test is equal or more reliable to the NIPT? It really isn't and when I read up on it last year and spoke to my doctor it was across the board considered better. The medical staff in my hospital said it was the future and would in time be rolled out and replace the current 12 week test. It is already being offered on the nhs in some areas (not in mine, we had to pay privately for it. Which tbh I feel strongly is not right. We were not willing to risk miscarriage so should be offered to people in our situation at the minimum)

I have truly no idea why u think this test increases anxiety. Why more so than the current nhs 12 week test? It is offered at the same point of time of pregnancy.

Again the information on this test is easy to access, read and interpret. It has nothing to do with eduction or privilege.

@PrayingandHoping no I haven’t said serum screening is equal or superior to NIPT. I have said consistently throughout my posts that both have merits. They are not the same test and both can bring benefits to screening. It is not appropriate to compare imho.

When science is more developed, and with appropriate safeguards and transparency etc in place, NIPT can and could be utilised as an effective screening tool in a more ethical and productive way. However, from a systemic perspective we are not there yet - and in the absence of a clinically safe system (and the necessary scientific advancements) which incorporates NIPT, I maintain imho it is also clinically unsafe to advocate that NIPT can and should replace serum screening.

Well your posts are unclear as that is the message it seems to convey

You have strong feelings clearly. Currently the NIPT is shown to be more accurate than the current 12 week test offered and imo having been through the situation where the 12 week was wrong and if it hadn't been for a v excellent sonographer at my 20 week scan I would never have had the NIPT and had my high risk warning.

And on this post someone else had the opposite on high risk 12 week and low NIPT. I see that time and time again on this board. So I can see why the excellent medical team I was under believe that the NIPT test is the future to replace the current 12 week test.

As for not understanding how the test can increase anxiety. If you got told at 9 weeks pregnant your baby was high risk for a condition incompatible with life, you don’t think that would cause anxiety?

The current NHS screening is done at around 12 weeks for everyone with an established support system in place, delivered by professionals who are consistently trained and rehearsed in understanding any risks and provide support. There is accountability and generally also less time to wait for necessary support.

I have spoken to people who at 9-10 weeks had been sent a letter saying they “screened positive” and have been provided inadequate or no counselling for such a result. Have felt it was diagnostic etc. As I’ve said, no point repeating the same points over and over. But I think you are either in denial or extremely naive if you choose to deny the anxiety and sheer trauma inherent to the current system around NIPT.

The current nhs test is done from 11 weeks. I've not seen anywhere the NIPT offered before 10. So really there is v little difference. If a high risk came about in a private scenario you would quickly flip over into nhs as you would be under the midwife system by then. Same as if u had an early private scan and were found to have a miscarriage???

Even when people have high risk results on nhs they have to wait for the next steps. Its not instant

If and when the nhs offer this instead of the current test of course this would be seemless and there be no issues

And for people believing it is diagnostic.... that again is due to them not reading the info. People prob believe the same with the current 12 test! It gives you a 1 in X chance but someone always has to be that 1 (like me in my case!)

I am not naive about this at all.

Many NIPT providers now test from 9 weeks - it is specifically this very early testing I speak out against (as in the context of OP), especially when people are encouraged to bypass the support from the NHS which is regulated and has safeguards. I do think you’re reading my posts negatively as I have repeated words to this effect multiple times.

By comparison, my understanding is NHS screening has to be done after 10 weeks and before 14 weeks. Most people will have the test around 12 weeks WITH support.

It is the combination of lack of accountability, regulations, support or transparency that make the promotion of NIPT dangerous. Also an extra week or two is an eternity to wait within those contexts. And in my experience, pretty much everyone accepts NHS screening is not diagnostic or near equivalent. However, despite your perceptions, I know of multiple parents-to-be and professionals alike, who do not know the limitations of NIPT.

Ultimately I just fundamentally disagree with your point of view. I do think your posts come across very negatively with respect to NIPT. Use of words like "dangerous" are not helpful.

You may think that you've been very clear and consistent with your posts but I've read them all several times and to me they are very contradictory and negative.

I think what you are ultimately saying is that at present there is no "safe" way to have the NIPT privately prior to 11 weeks and you should only have NIPT at all if clinically indicated and as part of the NHS process?

I don't agree with that position.

Nothing is instant in the nhs either.... I know that from experience. Waiting a week or 2 for the next step is entirely normal.

I am not disagreeing that a private provider should have a good set up with what happens next if there is a high risk result. The step should be to go to your midwife and onwards. You will be in midwife care by then.

In my next pregnancy will I have the nhs 12 week test after what happened this time? Absolutely not!!!!! I will again have to pay privately for the Iona test. Hopefully through the nhs as I have this time but I am yet to get that far to find out how they will deal with me. My little girl is only 4 months so not at that stage yet!!

I'm not purposefully reading your posts negatively. As I and another poster have said. The points you are making are not clear in places. They really aren't

I think that is the fundamental issue. I actually don’t perceive that we disagree as much as you think. However you don’t appear able to separate that whilst the science behind NIPT itself may not be dangerous - and indeed I would say is exciting and helpful - the context within which it is promoted, is dangerous. And as such, I cannot endorse this situation from an ethical perspective.

The above does not take away from me respecting your right to make a choice and inform yourself - but it is also me acknowledging that many people may not have the education, finance, intelligence and/or resources to do so etc. To me that inequality then becomes another ethical dilemma that personally leaves me uncomfortable as it is inevitable some people will be harmed disproportionately.

You appear to hear me acknowledging these inconsistencies and tensions as contradictions. It is not and I am sorry you feel that way. I really cannot explain things any more than I already have or break things down any more 🤷‍♀️

That is u making a very big assumption about the life situation of people who come to the wrong conclusion about the test..... and an unfair one if I do say so myself.

@PrayingandHoping actually I’m the one not making assumptions. When you say everyone can research fully and access reputable providers to defend/excuse the current setup, you make a judgement and assumption - and that is by definition unfair.

I have never said anything about access to providers... I have said people can access information. Which you can online by the power of google. In this day and age anyone and everyone has access to that.

As that's exactly what I did. I used google. Looked on my test providers website and a few others around the NIPT test

I do separate the test itself from the issues you raise. I explicitly did so in my first or second post.

Your solution to the issues as you perceive them is that no-one should have NIPT privately at the present time? Is that correct?

I consider that position to be entirely unrealistic. You can want it as much as you like but it won't happen. Far better to look for ways to improve the service provided by those offering NIPT by regulation or otherwise. That is a longer term goal.

Short term, in forums such as this, I would advise people to do their own research about the accuracy of the test itself, to research the provider they intend to use and to question that provider both as to the method of delivery of the results and the provision of aftercare in the event of a high risk result.

My results were delivered to me in a telephone call with the consultant. She also worked in the NHS and explained prior to the test what would happen in the event of a high risk result.

I understand other providers may not do this and those providers should be challenged.

I had NIPT privately and they asked me if I still wanted the NHS blood test at my scan and I declined and the midwife agreed she would have declined too as NIPT more accruarate

If it makes any difference. My results were also delivered over the phone my an nhs midwife. On a Friday lunchtime and I obv then wasn't seen until the next week when the consultant was next in.

I have agreed to disagree with your viewpoint on another thread but feel I need to put forward my views on the points raised on this thread also.

As PPs have said, you come across as being very negative about the NIPT generally, yet keep repeating the same very specific concerns, relating to the false positive rate, people’s misunderstanding of accuracy and diagnostic ability, and marketing to people without high risk combined results from 8 weeks etc, when this a) is not necessarily relevant to the OP and b) completely ignores any of the the benefits of NIPT.

You talk about the trauma and anxiety of women receiving false positive screening results. Absolutely. Last April I had one of the worst weeks of my life, following a false positive combined screening result. This is of course, as PP said, part and parcel of any screening process and it is FAR more common with the combined screening than the NIPT. Because of NIPT, I was able to receive reassurance that my baby did not have Down’s Syndrome without having to risk miscarriage with an invasive test.

Despite my positive experience, I absolutely acknowledge that there are drawbacks to the NIPT. There are false positives, some people may misunderstand the information provided about the accuracy and diagnostic ability of the test, some unscrupulous providers may not be completely ethical about their promotion of the test. HOWEVER, the accuracy for low risk results is very good and provide a way for the many many women who receive false positive combined screening results to receive reassurance without the risks and trauma of an invasive test.

I am worried that women on Mumsnet who have received reassurance from the NIPT or who are deciding between NIPT and an invasive test after a high risk combined result will misunderstand your negativity about the accuracy and value of the NIPT and be unable to make a properly informed decision.

@sausagefingersH this is another aspect of what worries me. Whilst I have maintained it is personal choice to access NIPT privately or otherwise (issues around being informed/transparency etc aside), the serum screening does have value and can still be very effective in detecting issues/supporting a healthy pregnancy etc. especially alongside targeted ultrasound.

For instance serum testing incorporates screening for early onset preeclampsia and preterm intrauterine growth restriction. This enables low-dose aspirin to be offered as an early intervention. NIPT doesn’t do this and I feel a midwife should really make people aware of these factors as well.

I do agree that those who have already had the NIPT and received a low risk result should have their Papp A levels tested at the 12 weeks scan in any event although I would imagine that could be done as a stand alone test eventually.

As things stand you could accept the blood test for the combined screening and disregard the risk factor result and focus solely on the Papp-A level.

@MajorFaffington I am flattered you’d think I’d have that much power I could undo the multi-billion dollar industry that is currently promoting NIPT at all costs 😂

Actually I have acknowledged that in instances of high risks where there is a negative result, this is an entirely appropriate use of NIPT. However the OP here is about having NIPT in very early pregnancy basically for reassurance to manage anxiety. I think in such instances that anxiety needs to be considered further before promoting a test that has the potential to bring about such a level of distress. As you have said, context is key...

I was given a 1:6 chance of Down syndrome from the combined test. I decided on Harmony test as I don't want any invasive testing. I had the test then came the call to inform me that it had failed as I had insufficient foetal dna. I had a second attempt which also failed, so
Please be aware that the test isn't fool proof, I was totally ignorant to the fact it may not work.

The op was considering an NIPT as it is better than the 12 week one. Her anxiety was sadly due to a MMC and as the NIPT comes with a scan that was why she was considering it for the reassurance scan. The anxiety wasn't due to worry about the results of the test as a stand alone.

Her question was then whether there was a point to then doing the usual 12 week scan as she doesn't like blood tests!

I had previously had 4 children and they were all high risk on the NHS test so I went straight for the private NIPT 5th time as it was new and could offer me more accurate results, the anxiety the NHS results would give me because of the Pap A result wasn't worth it for me so I avoided it but I suppose it's everyone's own decision to make

Sorry I meant anxiety from the screening nhs result