There are concerns that the number of babies with Down’s syndrome aborted in Scotland will rise following a decision announced by the government.
Public Health Scotland has announced the rollout of the Non-Invasive Prenatal Test (NIPT) into the National Pregnancy Screening Programme at all NHS hospitals in the country.
Freedom of Information
It has been revealed in a FOI request that the rollout went ahead without plans being published by the Scottish Government.
Lynn Murray, who lives in Edinburgh and is the spokesperson for Don’t Screen Us Out, says: “Figures released last year realised the fears of the Down’s syndrome community that rolling out these tests would lead to a large drop in the number of babies with Down’s syndrome were not unfounded.
“While we are pleased to see that there have been improvements in the guidance outlining how a diagnosis of Down’s syndrome is communicated to parents, no assessment of the impact of new screening has been carried out by the Scottish Government, so we expect to see a similar increase in abortions for Down’s syndrome when the test is rolled out here in Scotland.
“Such outcomes are likely to have a profoundly negative impact on the Down’s syndrome community.”
Campaigners and Scottish families living with Down’s syndrome are now concerned that without the right reforms, the introduction of the test could contribute to more children with Down’s syndrome being screened out by termination.
The NIPT was introduced into a private practise in Scotland in 2013 by Professor Alan Cameron, a member of the UK NSC in 2013 and was then piloted in Tayside as part of the UK NIPT Rapid review in 2014.
In 2015, the UN report from the International Bioethics Committee (IBC) of the United Nations Educational, Social, and Cultural Organisation (UNESCO) issued a warning about the drive to adopt NIPT in national screening programmes. The warning highlighted ethical disadvantages of NIPT.
Subsequently, the Nuffield Council of Bioethics published a 149-page report covering many issues surrounding the use of NIPT in 2017.
They also warned: “The UK National Screening Committee should take better consideration of the particular consequences, some of which will be unintended, of prenatal screening programmes where termination of pregnancy is an option.”
“As a mother of a daughter who has Down’s syndrome, I see every day the unique value she brings to our family and the positive impact she has on others around her,” emphasises Lynn. “That lived experience isn’t a fundamental of the screening programme.”
In the same year, a report published by Down’s syndrome Scotland revealed ‘very poor attitudes’ and ‘appalling behaviours’ from professionals after Down’s syndrome was identified prenatally.
Ahead of the rollout of NIPT, research commissioned by Public Health Scotland found that two thirds of those interviewed had no depth of knowledge about Down’s syndrome.
In the same year of 2019, an investigation by The Sunday Times found that the number of babies with Down’s syndrome has fallen by 30 per cent in the small number of NHS hospitals in England that have introduced the new form of screening.
Don’t Screen Us Out are now calling on the Scottish Government as a matter of urgency to assess the impact that the introduction of the test will have on people in Scotland living with Down’s syndrome.
They also want reforms to be introduced, such as guidelines on antenatal care for women found to be carrying a baby with Down’s syndrome.
If these changes aren’t made, NIPT could worsen the culture of anti-disabled discrimination that exists in fetal anomaly screening programmes.
“We are calling on Public Health Scotland and the Scottish Government to undertake an urgent inquiry into the obvious concerns and the impact that these tests are having on birth numbers of babies with Down’s syndrome,” explains Lynn.
“There is mounting evidence that an unconscious bias exists in the Fetal Anomaly Screening Programme. We need the right reforms to turn things around and ensure that the tenets of diversity and inclusivity that we hold dear in Scotland extend to these screening programmes.”