The Scottish Government has been warned not to make a prenatal test available on the NHS until the Down Syndrome community has been given a full consultation on the matter.
The call comes after people with Down Syndrome, their families and advocacy groups voiced their concern over recently-released abortion statistics from NHS Scotland Information Services Division.
The statistics show that, as well Scottish abortion numbers hitting a 10-year high in 2018, there were 34 abortions for Down Syndrome in Scotland in 2018 and, while numbers have fluctuated over the last five years, the 2018 number represents a 48 per cent increase from 23 in 2010.
The Don’t Screen Us Out campaign, a coalition of Down Syndrome advocacy groups, said this is likely to be attributed to the private availability of cfDNA testing – otherwise known as NIPT – which has already been predicted to increase the numbers of children with Down Syndrome being screened out by termination.
They warned that this situation is set to get far worse as the Scottish Government intends to move ahead with proposals to implement cfDNA testing into Scotland’s Fetal Anomaly and Down Syndrome Screening Programme next year.
Proponents of the test have glossed over the fact that a National Screening Committee pilot study predicts the new screening will detect 102 more babies with Down Syndrome every year in England and Wales. Based on the current 90 per cent of pregnancies that are aborted after the baby is found to have Down Syndrome, this would mean an increase of 92 abortions for Down Syndrome annually. That reduction equates to an overall decline of Down Syndrome live births by 13 per cent and would lead to a corresponding reduction in the number of people with the condition.
It is likely that the new tests will have a similar impact on abortion numbers for Down Syndrome when they are rolled out across the Scottish population. Such an outcome is likely to have a profoundly negative effect on the community of people with Down Syndrome.
Lynn Murray, a spokeswoman for the Don’t Screen Us Out campaign said that as a mother of a 19-year-old girl with Down Syndrome, she is “deeply concerned” at the huge increase in abortions for Down Syndrome in Scotland since 2010 and warned that it would be the “tip of the iceberg” if cfDNA testing is made available on the NHS.
“Sadly this is likely the tip of the iceberg – if the Scottish Government follows through on proposals to make these tests available on the NHS, projections show that there will likely be a steep increase in the numbers of children with Down syndrome screened out by termination,” she told The Catholic Universe.
“We are urging the Scottish Cabinet Secretary for Health and Sport, Jeane Freeman, to delay the implementation of the new test until there has been full consultation with the community of people with Down’s syndrome and the ethical issues of screening which have been acknowledged by the Scottish Government are resolved by the introduction of medical reforms.”
Ms Murray said Don’t Screen Us Out is also concerned about the impact that any changes to abortion legislation in Northern Ireland would have on the population of people with Down Syndrome in the region.
“As Lord Shinkwin said in Parliament last year, Northern Ireland is currently the safest place in the UK to be diagnosed with Down Syndrome before birth,” she said.
“According to the most recent published statistics, in England and Wales 90 per cent of babies found to have Down Syndrome are aborted. Northern Ireland currently has a very different approach. Disability-selective abortion for Down Syndrome is illegal and there is a culture of accepting and supporting people with disabilities rather than eliminating them.
“This is reflected directly in recent official figures showing that almost 100 per cent of babies found to have Down Syndrome in Northern Ireland are born. This greatly contrasts with the 90 per cent termination rate for Down Syndrome from other parts of the UK.”
Picture: A child holding a sign opposing NIPT. (Don’t Screen Us Out).