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Following the release of the Nuffield Council’s report on non-invasive prenatal testing (NIPT) in 2017, Colette Lloyd, writing in CMF Blogs considers four ethical key issues that are yet to be addressed.
Firstly, there is no care pathway for women following a high chance or positive result from testing. The Nuffield report suggested Royal College of Obstetricians and Gynaecologists (RCOG) change guidelines entitled Termination of Pregnancy for Fetal Abnormality, published in 2010, to reflect continuation of pregnancy guidelines.
Secondly, there is confusion around what NIPT can do. NIPT is essentially a screening test, not a diagnostic test, and thus NIPT tests the likelihood of a positive result. In some populations NIPT may predict with 99% accuracy the likelihood of a baby with Down Syndrome. But in terms of the chances of positive predictive values being correct, variance begins at 46% depending on age and combined screening results. The difference between diagnostic and screening tests can be misunderstood by manufacturers, midwives, consultants and the media alike.
Thirdly, advertising in relation to NIPT by private companies is not sufficiently regulated. Whilst inspections by the government’s Care Quality Commission are undertaken, misleading information is still being given.
Finally, genetic counsellors remain few and far between and Antenatal Results and Choices (ARC), the body set up as a support and hotline for women, are orientated towards informing women about the difficulties of continuing pregnancy without also offering support through the decision to give birth.
According to Lloyd, the current landscape of NIPT makes it difficult for women to make informed choices about pregnancy.
Nic Zumaran writes from Sydney.
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