Congratulations @Marrilou I am glad to hear you had a healthy baby boy and were not one of many impacted by the misuse of NIPT. However I strongly caution against it being used as a routine for test for “reassurance” within the context of widespread misinformation. Essentially it is still only a screening tool and has similar limitations to the NHS Screening test. It is more accurate for Downs etc and does have higher sensitivity, BUT in my experience, these benefits are widely overstated and limitations often glossed over or not explained. In fact the tests have been widely discussed in ethics committees due to their misuse.
www.nuffieldbioethics.org/news/asa-bans-prenatal-testing-ads-for-the-use-of-misleading-statistics
www.asa.org.uk/news/non-invasive-prenatal-testing-nipt-a-look-at-the-asa-s-rulings.html
I know a lot of people on here think I’m going overboard but I do see it as a bit of a mission to inform regarding the following:
- NIPT has little efficacy as anything other than a Downs screening tool.
- It has an extremely high false positive rate for most trisomies and many professionals (wrongly) cite it as anywhere between 91-99% accurate even when the accuracy is nearer 30%.
I am mindful that yourself and others are discussing NIPT in terms of what very much presents as Downs Syndrome focussed lens. In the context of a “high risk“ NHS screening (or other risk assessment contexts), NIPT is indeed indicated to be helpful/robust or even “reassuring” in the event of a “low risk” screening. It is also more accurate at detection of Downs Syndrome within this context than NHS screening alone.
However... NIPT has an exceptionally high false positive rate for pretty much every trisomy except for Downs (although even the false positives, depending on clinical group, for Downs can still be 20-50%).
Given NIPT tests for conditions “incompatible with life”, it is entirely feasible that in seeking “reassurance”, individuals could (and do) receive a “high risk“ screening that would give their baby a potentially fatal prognosis - with minimal accuracy and predictive value. You may think I am being negative, but I have known far too many people face this. And the reality is if you were told your baby was likely suffering tremendously in utero and faced almost certain, painful death, it is naive to think this would have no bearing on how a person might view that pregnancy... in these instances the tests are experienced as far from “reassuring”.
Additionally as so many professionals do not understand or explain the limitations of NIPT, and like yourself (and others on here) see it as holding more accuracy than NHS screening, some even viewing it as diagnostic, this causes sometimes insurmountable trauma.
I am not intending to disregard NIPT as it can be a useful tool. And to those who use the tool in respect to Downs or are fortunate enough to receive a “low risk” assessment, I am in no doubt that it can provide reassurance in the majority of those cases. However it is important people are aware/informed it is very much a lottery and not everyone is fortunate enough to experience the test in this way.