From triple helix - winter 2016 - NIPT [p04]
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Review by Peter Saunders CMF Chief Executive
The government, on 30 October, approved a new test for pregnant women that will make it much easier to detect and destroy babies with Down's syndrome (DS) in utero. According to the BBC, the non-invasive prenatal test (NIPT) will be rolled out by the NHS from 2018. (1)
It is claimed that NIPT will reduce the number of women who need invasive tests like amniocentesis and chorion villus biopsy, which carry a 1-2% risk of miscarriage.
The move to make NIPT available on the NHS is deeply controversial (2) and has led to the launch of the 'Don't Screen Us Out' (DSUO) campaign. (3) DSUO describes itself 'as a grass-roots initiative supported by a collection of people with Down's syndrome, families and Down's syndrome advocate groups led by Saving Downs Syndrome'. (4)
They say that, given the fact that 90% of babies who are prenatally diagnosed with Down's syndrome are currently aborted, (5) the result will be 'a profound increase in the number of children with Down's syndrome screened out by termination'.
A new study published in the British Medical Journal on 4 July 2016 backs up their concerns. (6)
The lead author professor Lyn Chitty and her colleagues calculate that in an annual UK screening population of 698,500, offering NIPT (as a contingent test to women with a Down's syndrome screening risk of at least one in 150) would increase detection by 195 cases with 3,368 fewer invasive tests but, crucially, only 17 fewer procedure related miscarriages.
If rolling out NIPT will result in 195 more babies with Down's syndrome being detected, then assuming that 90% will then be aborted, that means almost 180 more abortions for Down's syndrome each year. In total last year there were 3,213 babies with disabilities aborted in Britain, over 1,000 of them more than halfway through pregnancy. Of these, 689 had Down's syndrome. (7)
Sally Phillips drew attention to the issue dramatically in a BBC documentary A World Without Down's Syndrome, (8) which aired on 5 October. 'What's so dreadful, to the world, about Down's syndrome?' she asked. The Bridget Jones actress, who has a son with the condition, questioned the ethics of pregnancy screening and abortion and asked why affected babies are viewed as a 'burden' on society.
The real test of a society is in what it values and in particular how it treats its most vulnerable members, especially when it costs something emotionally and financially to do so.
Britain, by this reckoning, is not heading in a good direction.
1. Government approves new Down's syndrome test. BBC News 31 October 2016
2. Saunders P. Biotechnology Company seeks to profit from search-and-destroy technology for babies with Down's syndrome. Christian Medical Comment 31 October 2016
5. The National Down Syndrome Cytogenetic Register for England and Wales: 2013 Annual Report
6. Chitty L et al. Uptake, outcomes, and costs of implementing non-invasive prenatal testing for Down's syndrome into NHS maternity care: prospective cohort study in eight diverse maternity units. BMJ 2016;354:i3426
7. Department of Health. Abortion Statistics, England and Wales: 2015. DH; 2016
8. Hinde N. 'A World Without Down's Syndrome': Sally Phillips Explores Why The Disability Is Viewed As 'So Dreadful'. Huffington Post 6 October 2016