NRL News

Already frightening loss of children with Down syndrome will grow worse with new roll-out from Public Health England

by | Feb 1, 2021

By Dave Andrusko

Advocates for children with Down syndrome in the UK are lamenting the latest step whose impact will ensure that the number of babies born with Down syndrome continues to shrink.

“Public Health England 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,” the advocacy group Don’t Screen Us Out reported.

A press release from Don’t Screen Us Out warned that an already terrible situation will soon get worse:

An investigation by The Sunday Times found that the number of babies born with Down’s syndrome has fallen by 30% 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’s 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.

This 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’s syndrome being identified each year and based on the current 90% of parents that terminate a pregnancy following a positive result for Down’s syndrome, this is projected to result in more terminations where babies have the condition.

The screening tests are  set to be available across the National Health Service beginning June 1. 

Don’t Screen Us Out  called on the Government “to assess the impact that the introduction of the test will have on people in England living with Down’s syndrome and to introduce reforms, such as guidelines on antenatal care for women found to be carrying a baby with Down’s syndrome,” adding, “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, a spokesperson for the Don’t Screen Us Out advocacy group, said

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”.

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 revealed that the number of babies born with Down’s syndrome fell by 30% in NHS hospitals that have already introduced the new test. When this test is rolled out across the country, we can expect to see this situation replicated elsewhere. Such outcomes are likely to have a profoundly negative impact on the Down’s syndrome community”.

There also needs to be greater support for parents who are expecting a child with Down’s syndrome.

Despite Nuffield Council of Bioethics’ 2017 call for RCOG [Royal College of Obstetricians and Gynecologists] 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’s syndrome.

Categories: Down Syndrome