22 Jun 2021
We welcome the Church of England’s motion on valuing people with Down’s Syndrome in light of the roll-out of non-invasive prenatal testing (NIPT) in the NHS later this year.
The motion will be debated at the annual meeting of the General Synod on Saturday 10 February. Pregnant women who are found to have a ‘high chance’ of their fetus having Down’s, Edwards’ or Patau’s syndrome following an initial screening test will be given the choice to undergo NIPT or a diagnostic test. The new screening process should mean fewer false results and fewer diagnostic tests, which carry a small risk of miscarriage.
The Council has published a report that concludes women and couples should be able to access NIPT, but only within an environment that enables them to make free and informed choices about prenatal testing and pregnancy. The Council calls for better information and support for women and couples undergoing prenatal screening, and for disabled people and their families to be better supported, included and valued in society. We therefore commend the Church of England’s motion to ensure it includes and values people with Down’s Syndrome and their families.
The way that disabled people are supported or viewed in society can play a significant role in influencing reproductive decisions for women and couples.
Hugh Whittall, Director of the Nuffield Council on Bioethics said: “The Church of England and other religious organisations play an important role in our communities. Ensuring that their activities offer a real welcome for people with Down’s syndrome and their families, and all disabled people, could make a positive difference to people’s lives.”
The Church of England’s motion further echoes the Council’s recommendations by supporting access to information that new, safe antenatal screening techniques provide, and calling on the Government to ensure that parents who have been told that their unborn child has Down’s syndrome will be given comprehensive, unbiased information about the condition. The NHS has been developing new written information materials and a training programme for healthcare professionals to accompany the roll-out of NIPT. The work has had the active involvement of groups that represent and support people with Down’s syndrome and the other conditions being tested for, such as the Down’s Syndrome Association. However, we have ongoing concerns about the provision of NIPT in the private healthcare sector.
Hugh Whittall said: “We are concerned that some private providers may give out information that emphasises the accuracy of the test, but does not make clear its limitations. We are concerned that some women are not being supported well enough to make informed decisions, and that some private services may be failing to provide adequate aftercare.”
Notes to Editors
VALUING PEOPLE WITH DOWN’S SYNDROME (GS 2088)The Bishop of Carlisle to move:That this Synod, valuing all human life equally and celebrating the advances in medical technology which help alleviate human suffering:
Nuffield Council on Bioethics
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