The council also recommended that NIPT be accompanied by “accurate, balanced and non-directive information for women and couples,” and that private providers of the test be monitored to ensure their advertising is neither misleading nor harmful.
Turning from screening for “fetal anomalies”, the Nuffield Council said that “NIPT should not generally be used to find out whether a fetus has a less significant medical condition or impairment, has an adult onset condition, or carries a copy of a gene tht does not cause a condition on its own. Nor should it be used to reveal non-medical features of the fetus, such as sex.”
It added that “the Government should ensure that private NIPT providers stop offering fetal sex determination,” and that it should establish that “whole genome sequencing of fetuses is not offered outside research environments.”
The report of Nuffield Council acknowledged “the offer of NIPT to determine the sex of the fetus at an early stage of pregnancy may increase the risk of sex selective terminations taking place,” which they said “there is some evidence that sex selective terminations have happened in the UK, and they are known to occur in other countries.”
Sex-selective abortions are illegal in the UK, but in recent years the government has been criticized for a lack of enforcement.
The UK’s Department of Health has expressed concern for the pressure on pregnant women in some south Asian immigrant communities to have boys, and former Minister of Parliament Paul Uppal has said “the expectation is there – I’ve seen it firsthand myself.”
Advocates for persons with Down syndrome are strongly opposed to the expansion of NIPT.
Stop Discriminating Down says that “Government encouraged selective abortion, the refusal to provide health-benefits, or the refusal to provide adequate medical care equal to that provided to their typical peers is a social and moral crime against all people with disabilities and their families who thanks to developments in research, medical care, and social acceptance have many possibilities. The expansion of government sponsored prenatal screening and abortion stand in stark contradiction to the social progress made over the past 40 years towards an inclusive and equal society.”
“While throughout the world we petition, walk, and meet together to fight against discrimination and to protect biodiversity, no-one should have to defend threats to their life because of his or her genetic make-up. In a humane world aware of the need for acceptance and inclusion of differences, people with Down syndrome should not be discriminated against.”