A new form of prenatal screening may jeopardise the societal position of people with Down’s Syndrome and even their future existence, a General Synod of the Church of England briefing paper warns.
Valuing People with Down’s Syndrome, produced by the Church of England’s Mission and Public Affairs Council (MPA) for this month’s session of the General Synod, says that while Non-Invasive Prenatal Testing (NIPT) is not intrinsically problematic, ‘the manner in which it is introduced, understood and administered has the potential to lead to major reductions of Down’s syndrome live births’.
In countries such as Iceland and Denmark, which have almost universal screening and close to 100 per cent termination rates, there is a real possibility that people with Down’s syndrome will effectively disappear from their populations. With a post-screening abortion rate of 90 per cent within the UK, the introduction and potential widespread use of NIPT requires a timely debate on its possible consequences.
The briefing paper sets the context for the debate by asserting Christianity’s core belief ‘that we are all equally human before God’. It welcomes the progress made in societal attitudes to those with Down’s Syndrome but reminds readers that, ‘we must cherish people with Down’s syndrome and their families so that they can flourish and be the gift to the community that God intends’.
The risk, it says, is that despite growing social awareness, ‘in the absence of full information about Down’s syndrome and the support now available for both parents and children, the perceived challenges of living with Down’s syndrome will result in more decisions to terminate’.
The Bishop of Carlisle will move a motion at the Synod session affirming the dignity and full humanity of people born with Down’s syndrome. The motion asks dioceses, parishes and National Church Institutions (NCIs) to work to review their activities and the provisions they make for people with Down’s syndrome and their families, to ensure a real welcome for all.
It also asks them to support the continued development of ante-natal care including access to information that new, safe screening techniques provide and calls on Her Majesty’s Government and relevant professional bodies to ensure that parents who have been told that their unborn child has Down’s syndrome will be given comprehensive, unbiased information with regard to the condition.
The background paper says that working in genuine partnership with parents of children with Down’s syndrome and, in particular, with self-advocates is essential if their inclusion is to become full reality.
MPA [Mission and Public Affairs Council] is committed to following up this motion by working within the Church and with external partners to facilitate greater inclusion of people with Down’s syndrome in both church and society.
The MPA refers to the risk that some health professionals may present a diagnosis of Down’s Syndrome as ‘bad news’ and may even initiate discussion about a possible termination.
Responding to the paper the Down’s Syndrome Association (DSA) said it understood the concerns and has been working with Public Health England in training sessions for screening coordinators and midwives, to ensure they have the required knowledge and skills to undertake this important task.
It also said that its Tell it Right® training has reached more than 5,500 midwives over the last three years:
Each training session involves families of children with Down’s syndrome and adults who have Down’s syndrome, sharing their lived experience of what life is like with Down’s syndrome today.
We give a cautious welcome to a study carried out by Prof Lyn Chitty in December 2017, which concluded that where NIPT had piloted in sites in England, the number of births of babies with Down’s syndrome had not decreased and in some cases termination rates had fallen. It is thought that this was due to women accessing more up-to-date, accurate information about Down’s syndrome and then choosing to continue with their pregnancy.
There are around 40,000 people with Down’s syndrome in the UK (0.06% of the population; approximately one in every thousand live births). Around 750 children with Down’s syndrome are born each year. While the likelihood of having a child with Down’s syndrome increases with maternal age, 80 per cent of children with Down’s syndrome are born to women under 35.
The Church of England Synod motion will be debated on 10 February.
What is NIPT?
Non-Invasive Prenatal Testing (NIPT) is a maternal blood test that can be conducted safely on pregnant women without risk to their developing foetuses. Fragments of foetal DNA circulate in mothers’ plasma from around the 4th week of gestation and gain sufficient concentration for viable testing around week 10.
NIPT can screen for some chromosomal abnormalities with an overall success rate of around 98 per cent. Testing can be conducted for Down’s Syndrome, Edwards Syndrome, Patau Syndrome and Turner Syndrome. These tests are not yet wholly accurate, but if a positive test result occurs, women are advised to consider invasive testing (such as amniocentesis or chorionic villus sampling) in order to confirm or to eliminate a diagnosis.
Until recently [in the UK], all pregnant women at ‘high-risk’ (approximately 10,000 each year with 65-70 per cent uptake) were offered invasive testing which can result in miscarriage (0.5-1 per cent occurrence). NIPT will reduce the need for invasive testing for women at ‘high risk’ who do not test positive, hence preventing some miscarriages. It is estimated that around 1,500 women will opt for invasive testing after NIPT with about 1,000 positive diagnoses being made.
Currently, the National Health Service (NHS) plans to offer NIPT only to women identified as being at ‘high-risk’. As 80 per cent of children are born to women not in this category they will either remain unscreened through NIPT or choose to access screening through commercial providers, a number of which offer ‘home-kits’ via the internet.
NIPT offers many advantages: it is safe, it will result in decreased incidence of miscarriage and it provides women with important information. As, currently, 90 per cent of women with positive diagnoses from invasive tests choose to terminate their pregnancies, it is important to examine the full potential implications of this new test.
Extracted from Valuing People with Down’s Syndrome