Government plans for a new test for Down’s syndrome are facing a backlash from medical professionals worried that the aim is partly to save NHS cash by aborting more babies with the condition.
More than 300 doctors signed a letter objecting to the test – which is 99 per cent accurate in detecting Down’s in unborn children – as the Department of Health announced its intentions to roll it out across the country.
The test has been criticised amid fears that it would lead to a generation of Down’s children being “wiped out” by a surge in eugenic abortions.
The medical professionals said in their letter delivered on Saturday to the Royal College of Obstetricians and Gynaecologists (RCOG) that they objected to the introduction of the Non-Invasive Prenatal Testing (NIPT) on economic grounds.
They also accused RCOG of moving from “supporting women to make an informed choice to advocating that women with a prenatal diagnosis of Down’s syndrome should end their pregnancy”.
“We utterly reject the implicit premise that the value of a human being is based on their economic contribution to society,” they said in the letter to Professor Lesley Regan, the college president.
The backlash began after RCOG suggested during a public consultation that the test should be approved because it would save funds by not having to provide care for Down’s syndrome people during the course of their lives.
To keep costs down, the test is likely to be offered to about the 10,000 pregnant women who each year are considered at high risk of having a child with the condition.
But RCOG said that if a “decision has been made primarily on cost grounds, then a more rigorous economic analysis has to be made that includes the lifetime costs of caring for children and adults with Down’s syndrome … Such an economic analysis may (or may not) suggest that testing for all is cost-effective.”
The comments of the Royal College shocked many people, including Gwen Moulster, a Shropshire nurse who in June was awarded an OBE for services to nursing and to people with learning disabilities.
Moulster, who has signed the letter to RCOG, said she has worked with many people with Down’s syndrome and that she felt “very strongly” against putting a price on the value of their lives.
She said: “People with Down’s syndrome get what this is all about, they understand it. They are pretty horrified that other people are making judgements about whether they have a good life, a happy life, a quality of life or whether they can give anything back to society, and the thought that a decision like that could be made before somebody has even had a chance to live.”
Another signatory, Dr Helen McGarry, a GP based in Newcastle who has a young son with Down’s syndrome, said she was concerned that the reasoning of the RCOG undermined the safety of all patients.
“To suggest that a test might be cost effective if we take into consideration what can be saved by terminating the lives of ‘expensive’ people before they are born is at best shameful,” she said.
“The statement unmasks what appears to be a terrible inbuilt prejudice towards people with disability. Sound bites like ‘a more rigorous analysis has to be made’ make one wonder how many more of us face analysis regarding the cost of our lives. Are any of us safe?”
Dr McGarry continued: “Of course if you look at the cost to the world brought about by anyone’s life you can argue there were savings to be made.
“As a doctor I am worried about the ethics of discussing the cost of a life. It goes against everything I came to medicine for. As a doctor and a mother, my reaction is not worry, it’s more than that, visceral in fact. As a mother with a baby with a chromosome make-up of the type that would come under scrutiny in this way by RCOG, I am terrified.”
Comedy actress Sally Phillips, whose eldest son Oliver has Down’s, also expressed horror at a possible economic rationale for the test.
Phillips said: “The suggestion that we compare the lifetime cost to the NHS of any individual with the cost of a prenatal screen struck me as either particularly thoughtless or dark.
“I don’t think any individual works out as ‘cost effective’ when compared with the price of a prenatal screen.”
Government approval of NIPT follows a 10-month campaign by Down’s people and their families to be consulted about the plan.
An open letter signed by 900 such people was delivered to Jeremy Hunt earlier this month demanding that approval of the implementation be delayed until a proper consultation with the Down’s community.
A motion which has now been signed by 28 MPs was tabled in support of the Don’t Screen Us Out campaign.
Lynn Murray, spokeswoman for Don’t Screen Us Out said: “We are very disappointed that the Department of Health have approved the NIPT roll-out without consultation with the very group that this is going to have the biggest impact on, people with Down’s syndrome and their families.”
Disabled Conservative peer Lord Shinkwin, whose Bill to outlaw late abortions for disability this month passed its Second Reading, added: “Ministers could have met with people with Down’s syndrome and their families and addressed their concerns before making the announcement. They chose not to and instead signalled to disabled people once again that they would be better off dead.”
The Government argues that NIPT will reduce the numbers of miscarriages caused by invasive testing.
Health Minister Philip Dunne said: “By offering non-invasive pre-natal testing, few pregnant women will go on to be offered diagnostic testing which carries a risk of miscarriage.”
The RCOG has said that NIPT will allow parents to make an informed choice about whether to continue with a pregnancy.
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