North East parents fear new Down's Syndrome NIPT test will increase terminations

With just days until a new screening test for Down's Syndrome is rolled out on the NHS in England, families with children with the condition in the North East say they are concerned it could lead to a rise in children with Down's Syndrome being terminated.

Non-invasive prenatal testing is being rolled out from June on the NHS in England. It had previously only been available at private clinics.

Currently, parents who doctors believe have an increased chance of their baby being born with the condition are offered an invasive diagnostic test.

However, this test carries with it the risk of miscarriage.

NIPT is less invasive, utilising a blood test, and more accurate therefore reducing the need for a further invasive diagnostic test. However, an invasive diagnostic test is still needed to confirm any positive Down's Syndrome diagnosis found by the NIPT test.

Families in the North East feel this new and more accurate testing will scare some expectant parents into having an abortion.

Another concern has also been raised by parents too that this new test will further increase barriers to improving attitudes towards Down's Syndrome.

Jo and Ray Tindle have told ITV News Tyne Tees they were shocked how the news of their daughter Freya's diagnosis was delivered to them...

The campaign group Don't Screen Us Out say they fear the introduction of NIPT will "result in a profound increase in the number of children with Down’s syndrome screened out by termination."

Figures show more than three-quarters of babies with a Down's Syndrome diagnosis are currently terminated and campaigners from Don't Screen Us Out fear the increased accuracy of NIPT could lead to more terminations.

  • What is Down's Syndrome and how does NIPT work?

Together 21 is a support group for North East families living with Down's Syndrome Credit: Together 21

Maggie Hart is involved with Together 21 in Newton Aycliffe, a support group that works with families living with Down's Syndrome in the North East.

Her son Alex was born with the condition in 2004. She is concerned that if more families opt for termination after receiving a positive diagnosis of Down's Syndrome they will in turn miss out on a lifetime of memories.

With NIPT being rolled out across the NHS in England in June, we contacted NHS England with the concerns raised by the families featured in this article.

Dr Anne Mackie, Director of Screening, Public Health England (PHE) said: “PHE Screening is currently leading an evaluative roll out non-invasive prenatal testing (NIPT) for Down’s syndrome, Edwards’ syndrome and Patau’s syndrome as an additional step in the existing FASP pathway. This roll-out starts on 1 June and we expect it to be fully rolled out across England by July 2021.

"FASP recommends information about the screening tests should be provided to each pregnant woman so she is able to make a personal informed choice about these tests.

"PHE Screening has worked collaboratively with stakeholders, including the Down’s Syndrome Association, SOFT UK, the Down’s Syndrome Research Foundation, and Antenatal Results and Choices to develop information for pregnant women and training for midwives. All our resources reinforce that screening is very much a personal choice and that health professionals should support women to make the right decision for them.

Meanwhile, an NHS North East spokesperson provided the following statement: