A new advanced test for Down’s syndrome to be offered to pregnant women this year raises the prospect of people with the condition disappearing from UK society as terminations are expected to rise, the Church of England has warned.
Non-invasive prenatal testing (NIPT), a safer form of screening, is to be rolled out by the NHS this year. It will be offered to about 10,000 women a year who are considered to have a higher likelihood of giving birth to a baby with Down’s syndrome or two less common genetic conditions, Edwards’ and Patau’s syndromes.
The church welcomes the technological advances in prenatal screening, but warns that NIPT is likely to lead to more terminations. It points to countries such as Iceland and Denmark, which have almost universal screening and close to 100% abortion rates of foetuses with Down’s syndrome.
“There is a real possibility that people with Down’s syndrome will in effect disappear from their populations,” the church says in a report, Valuing People with Down’s Syndrome (pdf).
A BBC documentary, A World Without Down’s Syndrome? made in 2016 by the actor Sally Phillips, whose son Olly has the condition, argued against the introduction of NIPT. But others have said women who decide on termination should not be made to feel guilty.
NIPT involves a blood test with no risk of miscarriage, unlike amniocentesis, the most common current invasive procedure, which has a 1% risk of ending the pregnancy. Test results have shown NIPT to be 99% accurate.
About 750 babies are born with Down’s syndrome in England and Wales each year, and a total of about 40,000 people have Down’s syndrome in the UK, or 0.06% of the population.
People with Down’s syndrome now experience greater social inclusion, and many lead independent or semi-independent lives, the church says. Life expectancy is about 60, compared with nine in 1929, and 25 in 1970. “Great strides have been made in recent decades to redress historic neglect,” says the C of E.
It also points to a rise in abortions: in 2010, 482 pregnancies with a foetus with Down’s syndrome were terminated, a figure that rose to 706 in 2016 despite an overall decrease in abortions, said Brendan McCarthy, the C of E’s adviser on medical ethics.
The church opposes abortion on principle, but recognises there are circumstances in which it may be morally preferable to any available alternative.
“The C of E is not in the business of telling women what to do,” said McCarthy. “We wouldn’t want to give the impression that anyone given a diagnosis of foetal disability is not facing very difficult decisions, involving deep thought, turmoil and agony. We just want to make sure that whatever choice is arrived at, it’s a free and fully informed choice.”
The church wants to ensure that health professionals do not present a diagnosis of Down’s syndrome as bad news or initiate discussions about possible termination. It wants information reflecting the improving realities and potential for people with Down’s syndrome, and about support available, to be given to prospective parents.
A motion to be debated at the C of E’s General Synod next month calls on the government and professional bodies to ensure that “parents who have been told that their unborn child has Down’s syndrome will be given comprehensive, unbiased information”.
The church is also raising concerns about commercial firms offering NIPT without the counselling offered by the NHS. Some advertise NIPT testing kits online. “We need to look at the regulation of NIPT,” said McCarthy.
“It’s difficult to say [to people with Down’s syndrome] that we will continue to value you if people like you are going to disappear. While it’s always a woman’s choice what to do, we hope that with full information significant numbers of women will continue with their pregnancy and that will allow society to celebrate people with Down’s syndrome.”
