Government plans to introduce a new safer form of pre-natal testing for Down’s syndrome and other conditions send a message to disabled people that they are “better off being dead than being born”, according to a leading activist.
The Department of Health (DH) is believed to be poised to give the go-ahead to non-invasive pre-natal testing (NIPT) across the NHS.
Supporters of NIPT claim it is a safer form of pre-natal testing for Down’s syndrome that will eliminate many of the miscarriages caused by pregnant women opting for an invasive amniocentesis.
Those who test positive after NIPT will still need to have an invasive test to confirm the diagnosis.
A study funded by the NHS National Institute for Health Research (NIHR) found that introducing NIPT instead of more invasive tests for pregnant women with a more than one in 150 chance of having a child with Down’s syndrome would identify 102 more fetuses with the condition, and prevent 25 miscarriages a year.
But campaigners say that pregnant women choose to abort about 90 per cent of fetuses identified as having Down’s syndrome, so the new technique would prevent 25 miscarriages but lead to 92 more abortions of fetuses with Down’s syndrome every year.
Some academics point to research by Professor Lyn Chitty, at Great Ormond Street Hospital, for the UK National Screening Committee, which found that 30 per cent of women given NIPT decided to carry a Down’s syndrome fetus to term, compared with six per cent under the current system.
But even if that proves accurate when NIPT is rolled out, the NIHR research suggests that it would still see an increase of more than 70 babies with Down’s syndrome aborted every year, compared with 25 fewer miscarriages.
Disabled activist Simone Aspis (pictured), founder of the training and consultancy organisation Changing Perspectives, said she was “deeply concerned” by the prospect of NIPT being available from the NHS.
She said: “Any test that is being used to eliminate disabled people is definitely a form of eugenics.
“What message does it send to other people about disabled people and difference – you’re better off being dead than being born.
“The more you screen out, the less tolerant people become of people who are different from themselves, and the more the expectation is that you abort a disabled baby.”
But she said that introducing such tests also contributes towards “moving the goalposts”, a gradual process in which society is gradually defining more and more people as disabled and therefore expanding the number of fetuses that are suitable candidates to be aborted.
Aspis said the key issue was not whether one pre-natal test was better than another because it reduced miscarriages, but “what kind of society do we want?”
She said: “We are always going to end up in a system where resources are tight, and there is elitism, so there is going to be the potential for wanting to be eliminating people who are not deemed to be productive.
“Someone who is deemed to be averagely productive now will end up [in 10 or 20 years’ time] being labelled with an impairment and therefore be subjected to medical procedures, screening out, and abortion eugenics.
“This money could be much better spent in keeping people alive and upholding their fundamental human and civil rights, such as under the UN Convention on the Rights of Persons with Disabilities (UNCRPD).”
Last month, the disabled academic Professor Tom Shakespeare offered his opinions about NIPT for BBC Radio 4’s A Point Of View, in which he said that the “major benefit” was that it would lower NHS costs and “more importantly it will also avoid the dozens of miscarriages which result from amniocenteses each year”.
He added: “The down side is the potential delay of several weeks before those women at high risk receive a final confirmation of the status of the pregnancy.”
He is chairing a Nuffield Council on Bioethics working group, looking at the ethical and social aspects of NIPT, and said in the recording that he was concerned that the NHS puts “a lot of energy and expense into ensuring that these tests are scientifically robust” but less into “achieving balanced information and sufficient counselling” about life with disability.
He pointed out that “advocates for people with Down’s syndrome argue that having the condition does not prevent you from having a good life”, and highlighted his own inherited genetic condition, restricted growth, which he passed on to his two children, but which “never stopped any of us flourishing”.
He also warned that NIPT was a technology that had been driven by the commercial sector and that providers were “competing to offer more and more information through these blood tests”.
Professor Shakespeare said the government’s decision on NIPT was “not just a minor technical upgrade of fetal anomaly screening in the UK” but was instead “a step change”.
He said in his BBC recording: “By offering a more accurate and less risky screening test for Down’s syndrome today, we are also taking another step down the path to more widespread testing for conditions in pregnancy tomorrow.”
This meant, he said, that there was a need for: better availability of balanced information through genetic counselling in pregnancy; up-to-date online information about conditions; and a “wider debate about what information we are prepared to provide in pregnancy” through genetic testing.
But Aspis said that even with improved genetic counselling, would-be parents would still make their decisions on whether to abort their children on how they perceived disability, in a society in which there was “a lot of hatred towards disabled people”.
Her concerns about NIPT are shared by the Don’t Screen Us Out campaign, a grass-roots initiative supported by people with Down’s syndrome, families and advocate groups and led by Saving Down Syndrome, which aims to “raise awareness around the discriminatory and eugenic nature of the practice of antenatal screening worldwide”.
The campaign has written an open letter to health secretary Jeremy Hunt, warning that introducing NIPT would have “a profound long-term effect on the community of people with Down’s syndrome and further enable the effective ‘screening out’ of those with certain disabilities from the UK population before they are even born”.
It called on Hunt to delay the introduction until there is “a full ethical review” of NIPT and the government’s fetal anomaly screening programme, involving people with Down’s syndrome and their families, to ensure NIPT is “consistent and compliant” with the UNCRPD and other human rights obligations.
The letter adds: “This must be accompanied with medical reforms to ensure every parent with a disability diagnosis receives balanced information and support to ensure that [NIPT] testing does not lead to the further screening out of people with Down’s syndrome.”
A DH spokeswoman said: “We want women to make informed decisions and access safe and appropriate tests.
“We are considering this carefully and will make an announcement in due course.”