The government should revoke the decision to introduce a pre-natal test for Down’s syndrome said the group Don’t Screen Us Out.
The NIPT (non-invasive pre-natal test) reduces the risk of miscarriage during the screening process and means far fewer women will need invasive tests including amniocentesis (with a chance of miscarriage or serious infection).
Those who show the high likelihood of their baby developing conditions such as Down’s syndrome are offered the invasive tests, which often involve taking a sample from the womb.
However the NIPT test - with a 99 percent detection rate – is projected to lead to an increase in the number of terminations of children with Down’s syndrome. In Iceland, since the test was introduced all foetuses with the symdrome are terminated. The test provokes wider philosophical questions about screening out diversity in society and what constitutes a valuable life.
‘Don’t Screen Us Out‘ is calling on the Manx government to revoke its decision to roll-out the test,
Douglas resident Frances Tinkler, parent of Elizabeth, who is 20 and has Down’s syndrome, said: ‘We are calling on the Health Minister Kate Beecroft to immediately revoke this decision. The Isle of Man Department of Health and Social Care appear to 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. The Manx government have also made no assessment of the impact this will have on the community of people with Down’s syndrome.’
In a statement, the group said they are ‘very disappointed that there appears to have been been no assessment made by the Manx Department of Health and Social Care of the impact that the roll-out will have on the lives of people with Down’s syndrome. There also appears to have been no ethical review of the proposed roll-out.’
The International Bioethics Committee (IBC) of the United Nations Educational, Social, and Cultural Organisation (UNESCO) issued a warning about the drive to adopt NIPT in national screening programmes and said: ‘The potential ethical disadvantages of NIPT can be summarised as routinisation and institutionalisation of the choice of not giving birth to an ill or disabled child.’
Lynn Murray, spokesperson for Don’t Screen Us Out said: ‘The decision will have a massive impact on our community.’
The Department of Health and Social Care was not able to comment before the Manx Independent went to press. It said it would comment at a later date.