Women in the UK need better information from their private healthcare providers before obtaining non-invasive prenatal testing (NIPT), according to the UK’s Nuffield Council on Bioethics.

In a new report published this week, the Council argued that NIPT should only be available for “significant medical conditions and impairments”. Less severe conditions, those that appear later in life, or non-medical traits such as sex-selection, should not warrant NIPT. 

In the UK NIPT is currently available privately for the cost of between £400 and £900 ($492 – $1100). However, from 2018 the NHS will offer the test free of charge to pregnant women who, after an initial screening test, have at least a 1 in 150 likelihood of having a foetus with a trisomy condition. NIPT has a far lower false positive rate than the current test, and could reduce the number of women who undergo amniocentesis to confirm a trisomy diagnosis, a procedure that comes with a small risk of miscarriage. 

NIPT

Professor Tom Shakespeare, Chair of the Nuffield Council’s Working Group on NIPT and Professor of Disability Research at the University of East Anglia said: “We support the introduction of this test for Down’s syndrome on the NHS next year, so long as it is accompanied by good balanced information and support. But, if the test is used without limits for other kinds of genetic conditions and traits, it could lead to more anxiety, more invasive diagnostic tests, and could change what we think of as a ‘healthy’ or ‘normal’ baby. We, therefore, think the test should generally be used only for significant medical conditions that would affect a baby at birth or in childhood.”

He continued: “That’s why we are calling for a moratorium on its use in sequencing the whole genome of the fetus. We also strongly believe there should be a ban on its use to find out the sex of the fetus, as this could lead to sex-selective abortions.”

NIPT has been hailed as a major breakthrough in prenatal screening and testing, allowing for accurate screening and even diagnosis of a range of genetic conditions. From about 9-10 weeks of pregnancy, a blood sample from the mother can be analysed for DNA from the placenta circulating in the bloodstream.

As well as screening for Down’s, Edward’s, or Patau’s syndrome, all trisomy conditions, NIPT can also diagnose other genetic conditions, such as cystic fibrosis and achondroplasia; or even determine the sex of the fetus.

Dr Louise Bryant, member of the Council’s Working Group on NIPT and Associate Professor in Medical Psychology at the University of Leeds, said raisied concerns that information provided to pregnant women and their partners by the private sector is “frequently incomplete, unsubstantiated, inaccurate or misleading, and sometimes uses emotive language.”

“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 for those with positive NIPT results.”