The Down Syndrome community has warned that the number of abortions of babies with the condition is likely to increase after Public Health England (PHE) announced that it will introduce a new controversial screening test across the NHS later this year.
PHE announced that the non-invasive prenatal testing (NIPT) technique called ‘cell-free DNA’ (cfDNA) will be available as an additional test in all health boards in England from 1st June 2021.
Those living with Down Syndrome and campaigners are concerned that without the right reforms, the introduction of the test could contribute to more children with Down Syndrome being screened out by termination.
An investigation by The Sunday Times found that the number of babies born with Down Syndrome has fallen by 30 per cent in the small number of NHS hospitals that have already introduced the new form of screening.
Furthermore, The Telegraph recently reported that ‘the number of British babies born with Down Syndrome has halved as more parents opt for a controversial blood test to identify the condition during pregnancy’. This coverage was based on recently published research by Frank Buckley, Brian Skotko and Gert de Graaf.
The Down Syndrome community warned that the situation is set to get worse as the Government proceeds with the rollout of the test across England.
The National Institute for Health and Research RAPID evaluation study projects that the proposed implementation will result in more babies with Down Syndrome being identified each year and based on the current 90 per cent of parents that terminate a pregnancy following a positive result for Down Syndrome, this is projected to result in more terminations where babies have the condition.
In its 2017 report on NIPT, the Nuffield Council of Bioethics warned that the UK National Screening Committee should take better consideration of the particular consequences, some perhaps unintended, of prenatal screening programmes where termination of pregnancy is an option.
The Don’t Screen Us Out campaign is calling on the government as a matter of urgency to assess the impact that the introduction of the test will have on people in England living with Down Syndrome and to introduce reforms, such as guidelines on antenatal care for women found to be carrying a baby with Down Syndrome. They warn that without corrective action, NIPT may only worsen the culture of informally eugenic anti-disabled discrimination that exists in the Fetal Anomaly Screening Programme.
Lynn Murray, of the Don’t Screen Us Out campaign, said: “As a mother of a daughter who has Down Syndrome, I see every day the unique value she brings to our family and the positive impact she has on others around her.
“The latest figures show that the fears of the Down Syndrome community that rolling out these tests would lead to a large drop in the number of babies with Down Syndrome were not unfounded.”
Ms Murray explained that while the screening itself is being heralded as a move to reduce the number of miscarriages associated with invasive amniocentesis, the figures recently published in The Sunday Times, revealing that the number of babies born with Down Syndrome fell by 30 per cent in NHS hospitals that have already introduced the new test, were a great concern.
“When this test is rolled out across the country, we can expect to see this situation replicated elsewhere,” she said “Such outcomes are likely to have a profoundly negative impact on the Down Syndrome community.
“We are calling on the Government to halt the roll-out of the tests on the NHS immediately and to undertake an urgent inquiry into the impact that these tests are having on birth numbers of babies with Down Syndrome.
“There also needs to be greater support for parents who are expecting a child with Down Syndrome,” she said.
Ms Murray noted that despite Nuffield Council of Bioethics’ 2017 call for RCOG to take immediate action and introduce professional guidance to cover the continuation of pregnancy after a diagnosis of fetal anomaly, there are still no guidelines to support women who choose to continue their pregnancies after finding that their baby has Down Syndrome.
“There is mounting evidence that an unconscious bias exists in the FASP programme. We need the right reforms to turn things around and ensure that the tenets of diversity and inclusivity extend to screening conversations in the NHS,” Ms Murray added.
Picture: Heidi Crowter and Alfie. (Don’t Screen Us Out).