How much will parents pay for the perfect baby or a baby of the right sex?
By Philippa Taylor, Head of Public Policy, Christian Medical Fellowship
The UK’s Nuffield Council on Bioethics is warning that a new screening test for pregnant women, Non-Invasive Prenatal Screening (NIPT), which is due to be rolled out next year on the National Health Service, could lead to babies being aborted because they are the wrong gender or have other “undesirable” characteristics. Professor Tom Shakespeare, chair of the Nuffield Council on Bioethics working group on NIPT, on May 22 said that:
“Abortions on the basis of sex appear to be rare in Britain. However, this could change with a new DNA testing method that allows the baby’s sex to be revealed to prospective parents much earlier that the standard 18-20-week scan.”
Shakespeare is right to warn about this. The move to introduce NIPT into the NHS next year is backed by powerful vested and commercial interests. Behind the Government’s drive to introduce the tests – which would use millions of pounds of taxpayers’ money – there are some large biotechnology companies, and their shareholders, hungry for profits.
It does not take long to look through some of the long term aims of these companies to see that they go beyond screening “just” for Down syndrome, Patau’s and Edwards syndromes, despite what we are being assured now.
In March 2015 the St. George’s University Hospitals NHS Foundation Trust revealed that it was joining forces with the British firm Premaitha Health to bring in this new screening test. Premaitha describes the test (marketed as “IONA”) as its “flagship product” and, along with its shareholders, it now stands to make a lot of money. Millions of pounds in fact, because each NIPT test costs between £400 and £900 pounds.
Premaitha has “absolutely no doubt that the developed world is moving” towards “widescale adoption of NIPT” and that it “is well placed to gain a large share of the market.”
Their share price has continued to increase as they have expanded into the Middle East and Asia. In their own words:
“Non-invasive prenatal screening is an emerging, multi-billion dollar global market and Premaitha’s complete CE marked system enables laboratories and health care practitioners to offer an approved, non-invasive prenatal screening system in-house.”
One of its biggest coups is surely that the “Benefits of NIPT [are] being recognised by Governments and countries moving towards making NIPT freely available through public health services.”
So we all, as taxpayers, will very soon be paying Premaitha for the NIPT tests.
The process of taxpayer involvement has already begun:
“…During the year  we saw public bodies starting to announce decisions to include NIPT in pregnancy screening pathways and we expect this trend to continue in the coming years.” No wonder they “…remain confident that ultimately all prenatal screening will include NIPT.”
So far, not surprising for a company based on shareholder profits. But then it becomes a bit more interesting. Not only do they expect NIPT to be used in all prenatal screening, the screening will not be limited to “just” Down syndrome:
“The IONA test is demonstrably fit for purpose in the NIPT screening field and to ensure this continues to be the case we have introduced a number of additional product and software features such as sex determination ….”
“…we have embarked on initial studies to identify opportunities to leverage our capabilities in the future in areas such as other prenatal conditions and in cancer detection.”
Tom Shakespeare, as part of his warning, said that we know some women are under strong pressure to give birth to boys, and may be subject to abuse if they give birth to a girl. If left unchecked, he said, use of this technique to determine sex could lead to an increase in sex-selective abortions here, and to Britain becoming a destination for them.
The test also allows whole genome sequencing which is a serious thing. People are already paying thousands for school fees so it is not unreasonable they would pay to find out if their child will have genetic traits that would allow them to perform well.
Shakespeare believes that we’re not quite at this point yet, but we’re not far off, so he is calling for a moratorium to be put in place now before we get there to stop this sort of thing happening.
However, here I disagree. We are already at this point, because, as I’ve quoted above, the tests are even now being promoted for their ability to screen for gender! And once they are rolled out for free, nationwide, by the NHS, there will be no rational – or practical – basis on which to prevent the tests from being used to screen for “other prenatal conditions.”
Shakespeare’s proposal for a moratorium is a start but the sad reality is that it will be impossible to either implement or hold. The only effective solution is for the government to not roll out the new test in the first place.
There is still time to stop it. Premaitha shareholders might not like that but thousands of others would, not least those lives that will be most directly affected by the (usually unmentioned) consequences of these tests.
Editor’s note. Philippa Taylor is Head of Public Policy at the Christian Medical Fellowship, in the UK. This article has been republished from the CMF blog.