Down’s syndrome advocacy group Don’t Screen Us Out are calling on the Isle of Man Government to revoke a decision to roll-out a new-prenatal test that is projected to lead to a profound increase in the number of children with Down’s syndrome screened out by termination.
The group are very concerned that this announcement has been made without consultation with people with Down’s syndrome and their families. They are similarly 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.
In a recent report the International Bioethics Committee (IBC) of the United Nations Educational, Social, and Cultural Organisation (UNESCO) issued a stern warning about the drive to adopt NIPT in national screening programmes, “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”.
People with Down’s syndrome and their families have been taking to the airwaves, broadcast TV and newspapers around voicing the alarm they have felt about this new testing. Recently the airing of Bridget Jones’s Diary star Sally Phillips’ BBC documentary A World Without Down’s Syndrome has generated much discussion about the proposed rollout.
Douglas resident Frances Tinkler parent of Elizabeth who 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.
Lynn Murray, spokesperson for Don’t Screen Us Out said:
"This roll-out is projected to result in an increase in the number of children with Down’s syndrome screened out by termination. The decision will have a massive impact on our community.”
Photo - BBC documentary A World Without Down’s is available to view on iPlayer.
