On Wednesday 1 March 2017, Nuffield Council of Bioethics published a report exploring ethical issues arising from current and possible future uses of non-invasive prenatal testing (NIPT) and non-invasive pre-natal diagnosis (NIPD). We were disappointed with a disproportionate focus in the report on potential risks associated with the technique.
Despite the clear value of NIPT and NIPD to pregnant women, and couples at risk of passing on a genetic condition, little focus has been afforded to the benefits of its introduction in the Council’s messaging around the report.
NIPT is a safe, non-invasive technique that brings no risk of miscarriage and can provide accurate information earlier in pregnancy than is currently possible. It is a leap forward in the quality of information provided to women during pregnancy.
You can read the Nuffield report here.
Our Director of Policy’s comment piece on the report is on the Bio News website here.
In January 2016, the UK National Screening Committee recommended implementation of non-invasive prenatal testing (NIPT) screening in pregnancy for Down’s syndrome, Edwards’ syndrome and Patau’s syndrome. NIPT uses the small amount of the fetal cell-free DNA which can be found circulating in a pregnant woman’s blood, to test whether that fetus is likely to be affected by a genetic condition.
However, due to a number of areas of uncertainty in the evidence, the UK NSC recommended introducing the test on an evaluative basis, with input from scientific, ethical and user expertise. This is to better understand the impact on women, their partners and the existing NHS Fetal Anomaly Screening Programme if women and their partners are offered the option of NIPT following a screening test result showing a risk of 1 in 150 or more of having a baby with a trisomy.
As part of this process, the Nuffield Council on Bioethics held an online call for views and evidence on the ethical, legal and regulatory implications of the increasing availability and use of non-invasive prenatal testing in the UK, having regard to its use in both NHS and commercial services, including for whole genome/exome sequencing.
We responded to this call for evidence in July 2016, welcoming the UK NSC recommendation to introduce non-invasive prenatal testing as part of the National Health Service, which represents a step towards further information and choice for women during pregnancy. NIPT for Downs, Edwards and Patau’s syndromes presents the opportunity for safer, earlier information on which to base decisions and planning during pregnancy.
Viewed in the context of the existing Down syndrome screening programme, which is widely supported by women and their partners, NIPT represents a refinement of what is already offered, but with increased accuracy and reduced risk. The technology used in this technique is also used to diagnose single gene disorders during pregnancy, when a couple are aware that they are at risk of passing on a condition.
You can read our full response to Nuffield’s call for evidence here (from July 2016).