From Monday, non-invasive prenatal testing (NIPT) for Down’s, Edwards’, and Patau’s syndromes will be offered through the NHS in Wales to pregnant women who have been found, through initial screening, to have at least a 1 in 150 chance of having a fetus with one of these conditions. The NHS in England will offer NIPT to pregnant women from October. Scottish Ministers have yet to decide whether to offer it to women in Scotland.
The Nuffield Council on Bioethics conducted an independent, in-depth inquiry into the ethical issues raised by NIPT last year.
Director of the Council, Hugh Whittall, said: “Our report recognised that NIPT can make a valuable contribution to prenatal screening programmes. However, pregnant women and couples being offered NIPT must be provided with accurate, balanced and non-directive information about NIPT and the conditions being screened for. This is essential to help them to make genuine, informed choices.“
NHS Wales has produced an information leaflet and video for women being offered screening, and screening co-ordinators from Wales have taken part in a training programme provided by Public Health England to accompany the roll-out of NIPT in England later this year. We are encouraged that Public Health England are also developing new information materials, work which has had the active involvement of groups that support people with Down’s, Edwards’, and Patau’s syndromes and their families.“ The information and support that is provided is critical, and whilst different people will have different views on what ‘balanced’ information looks like, what will be important is that a careful evaluation takes place on whether the training and materials do indeed help pregnant women and couples feel they have made an informed decision.“ We still have some concerns about what happens after a fetus is diagnosed with a genetic condition through screening and follow-up testing. There are currently insufficient guidelines for healthcare professionals on the care of women who choose to continue their pregnancy after a diagnosis.“ At the same time, for women and couples to be able to make genuine choices about their pregnancies, they should be confident that disabled children will be actively welcomed when they are born, and valued as equal to those without disabilities. This means ensuring the provision of high quality services and lifetime support for those children and their families, support that many parents of disabled children feel they do not currently receive.”
Notes to Editors
The Nuffield Council on Bioethics is an independent body that has been advising policy makers on ethical issues in bioscience and medicine for more than 25 years. As well as being a key UK partner on international networks of advisory bodies, the Council has an international reputation for advising policy-makers and stimulating debate in bioethics. The Council is funded by the Nuffield Foundation, the Medical Research Council, and Wellcome.
The Council’s report Non-invasive prenatal testing: ethical issues, published in 2017, considered at this early stage of its use, how NIPT could change the way we view pregnancy, disability and difference, and what the wider consequences of its increasing use might be.
Nuffield Council on Bioethics
Phone: 020 7681 9622, 07551 159670