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 completely ignores another set of figures that tell a rather less palatable story.
Dr Rick Thomas recently posted a blog here about these new tests. There has also been some minimal 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 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 go on to have invasive Chorionic villus sampling (CVS) or 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.
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% of parents with a diagnosis that terminate 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’. Furthermore, the main motivation appears to be saving money.
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) whilst 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% 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 are right at one level, women will indeed have more ‘choice’ with these tests. But the choice that most women will take is abortion.
Private availability of cfDNA testing has already been blamed for a 34% 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.
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. A review for the NHS estimated that it could lead to the detection of an additional 289 affected babies. In fact, even this number is a substantial underestimate were all pregnant women to be screened. 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’.
Imagine what will happen if/when this becomes nationwide and Government funded and promoted?
If used properly, cfDNA testing could help prepare parents who have a baby with a disability to prepare for and take care of their new baby better, and to allow help and support to be provided to them in this role.
Currently, however, without the culture and practices in place to enable this to happen, the implementation of any new, more effective screening tests, would worsen the current situation for both unborn children and their parents, and contribute to the perception that the lives of disabled people are worth less than those of able-bodied people.
Indeed, as one of our CMF members asks here: ‘Why have we become so afraid of disability?’