The number of abortions of babies with Down Syndrome is likely to increase following a decision announced by the Government, a campaign group has warned.
People with Down Syndrome, their families and campaign groups have said they are very disappointed that a new prenatal test that is projected to lead to a profound increase in the number of children with Down Syndrome screened out by termination is going to be rolled-out by the Department of Health and Social Care without responding to the very real concerns of those in the Down Syndrome community.
The UK Government has announced plans to procurement and roll-out of the non-invasive prenatal testing (NIPT) technique called ‘cell-free DNA’ (cfDNA) to all health boards in England.
Recently, 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 introduced the new form of screening.
This situation is set to get worse as the Government prepare the rollout of the test across England, the Don’t Screen Us Out campaign has warned.
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 with a diagnosis that terminate a pregnancy, 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 to halt the implementation of cfDNA screening and to introduce reforms which would support those with Down Syndrome and their families. The group adds that cfDNA may only worsen the culture of informally eugenic anti-disabled discrimination that exists in the Fetal Anomaly Screening Programme.
Lynn Murray, spokesperson for 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.
“Figures released earlier this year 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,” she added.
Ms Murray warned that, while the screening itself is being heralded as a move to reduce the number of miscarriages associated with invasive amniocentesis, the figures published in The Sunday Times last December – revealing a 30 per cent fall in the number of babies born with Down Syndrome in NHS hospitals that have introduced the testing – should raise alarms.
“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 further 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.”
Ms Murray also insisted that there needs to be greater support for parents who are expecting a child with Down Syndrome.
“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,” she said.
“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.”
Picture: Heidi Crowter and Alfie. (Don’t Screen Us Out).