The NHS is considering introducing a new test for pregnant women that will make it much easier to detect and search out any babies with Down Syndrome (DS) or other chromosomal differences.
A superficial reading of new screening recommendations suggests that implementing new tests will save lives – and money too. It will give mothers more choice and will be safer. The statistics cited in the recommendations back this up. Except that the report cited completely ignore another set of figures that tell a rather less palatable story.
There has been some cursory coverage in the media on these new tests for pregnant women which can more easily detect babies with DS. Non-invasive prenatal testing (NIPT) makes use of cell-free DNA (cfDNA) from the baby circulating in the mother’s blood and is more accurate and safer than most other pregnancy screening tests. Hence the detection of a higher proportion of babies with DS. Because it is more accurate, fewer women will have invasive amniocentesis tests, which carry a small risk of miscarriage.
At the moment, the NHS is likely to implement NIPT into the national screening programme. The benefits, it is claimed, are that it will increase the number of DS cases detected. It: ‘…should not add significant extra cost to the screening programme’ and the number of (healthy) babies lost through miscarriage will fall dramatically.
In other words, more ‘healthy’ babies ‘saved’ and more babies with DS ‘detected’.
Other statistics tell the rest of the story.
Figures also prepared for the NHS’s consultation, by the RAPID evaluation, are not fully cited in the NHS consultation (I wonder why).
The RAPID figures project that that the proposed tests would result in 102 more babies with DS being detected each year. Therefore, based on the current 90 per cent of parents with a diagnosis that terminates their pregnancy, this will result in 92 more babies with DS being aborted each year.
Allowing for the reduced number of inadvertent miscarriages of ‘healthy’ babies (down by 25), this would lead to an overall increase in fetal loss of 66 per year (but a saving of £337,000).
In other words, the reality is that these new tests would lead to more lives being aborted, and an increase in harm, despite public messaging that the test is ‘safer’.
The issue of course is that the extra lives that would be detected and aborted are those with Down Syndrome, and the ones who are ‘saved’ from miscarriage are the healthy ones. That is why this is being sold as being so beneficial.
So there is a very clear discriminatory assumption by the NHS reviews that the reduction of miscarriages is positive (and it is) while an increased loss of Down Syndrome pregnancies is a benefit.
If we extrapolate these figures further, given there were 717 births of babies with Down Syndrome in 2013, this would represent a 13 per cent decrease in live births for DS, which would have a profound effect on future numbers of people with DS in the population.
Anyone who argues that it is simply about choice for women is right at one level; women will indeed have more ‘choice’ with these tests. But the choice that most women take is abortion.
Private availability of cfDNA testing has already been blamed for a 34 per cent increase in abortion of babies with DS and other disabilities in just three years. In the case of DS, the only ‘therapy’ on offer is to terminate the life of the baby. Prenatal screening for DS provides no benefit to the baby – most will be aborted.
Why have we become so afraid of disability? Imagine what will happen if/when this becomes nationwide and government funded and promoted?
Even worse, it is still possible that the test could be used, not just for those at higher risk, but as part of primary screening, for all women. This would lead to the detection of an additional 289 affected babies. The main reason it probably will not be offered to all pregnant women (for now) is simply because of the financial cost: ‘… this represented a large opportunity cost and … these resources might be better used by the NHS’.
While the NHS would implement these tests, there are some who really will stand to benefit financially from it: the test manufacturers and suppliers. That is not surprising of course, and to be expected.
However, of more interest is that one of the National Screening Committee stakeholders (reviewing and recommending implementation of these tests) is Antenatal Results and Choices (ARC). ARC is probably the best known charity offering advice on screening, where many women go for ‘non-directive information and support’.
However ARC has just announced a corporate partnership with one of the leading suppliers of the UK screening test. This is an addition to their ‘partnership’ with at least seven other providers of screening tests!
In other words, regularly advising the Government’s National Screening Committee, and thus government policy, is an organisation that is financially partnered with, and inextricably linked to, all the main providers of the very tests they are pushing to implement!
The test manufacturers must be delighted to have such good access to the ‘review’ process.
It’s surely not dissimilar to all major weapons manufacturers financially supporting and advising a government committee which has been set up to decide whether to use those weapons in a war.
Anyway, I will not finish on such a depressing note. Instead, let me give the last word to the remarkable Karen Gaffney, a forty-year-old woman who has a science degree, an honorary doctorate and is a champion swimmer who has crossed the Channel in a team relay event. In May this year she gave a captivating and erudite TED talk that all the National Screening Committee ought to listen to before deciding to implement tests that deliberately search out people like Karen, in order to destroy them, because they have one extra, detectable, chromosome.