A new technique that accurately detects Down’s syndrome is raising new questions. It could lead to the ultimate elimination of people with Down’s, a document to be debated by next month’s General Synod has warned.
Whereas earlier techniques for detecting Down’s were not always accurate and could cause miscarriage, Non-Invasive Prenatal Testing (NIPT) yields much more accurate results and requires a simple blood test.
For its part, the Church of England is concerned that the availability of NIPT could lead to more abortions on women carrying children with Down’s syndrome. Already mothers found to be carrying a child at risk of being born with Down’s report being pressured to have abortions. With NIPT such pressure could increase.
General Synod will debate the document “Valuing People with Down’s Syndrome” as it meets in Februrary. The Rev. Dr. Brendan McCarthy, the CoE’s national adviser on medical ethics, said there was anecdotal evidence that some women were told there was “bad news” if their unborn children were diagnosed with Down’s — and immediately offered terminations. Critics say that a “conveyor belt mentality” is emerging as a response to availability of NIPT, and parents of Down’s babies being given insufficient advice or time to assess their options.
Recently British actress and screenwriter Sally Phillips, whose son Olly has Down’s, addressed the issue in a BBC documentary, A World without Down’s syndrome. “The doctor said to us: ‘I’m sorry, I’m so sorry.’ The nurse on duty cried. I don’t think anyone said anything at all positive,” she said. “It wouldn’t have been any different if they’d told me my child wasn’t going to make it.”
She says Olly lives a good life and brings much joy to the family.
McCarthy said information given to mothers should include advice on whether they want to undergo NIPT at all and that they should receive support from health professionals on whether to continue their pregnancy.
The Church of England opposes abortion in principle, though it says there can be circumstances in which a termination is “the lesser moral difficulty.” It says there is a problem when women are not given reliable information about Down’s.
“It is possible that it may seem the natural thing to do, the normal thing to do is to go along a pathway that would lead to increased terminations of pregnancy,” McCarthy said.