Don’t Screen Us Out

The UK government’s proposed cfDNA screening implementation is projected to result in a profound increase in the number of children with Down’s syndrome screened out by termination.

The latest figures tell us that 90% of babies who are prenatally diagnosed with Down’s syndrome are aborted. If then, as National Institute for Health and Research RAPID evaluation study projects, 102 more children with Down’s syndrome would be detected due to the implementation of second-line cfDNA screening (NIPT – non-invasive prenatal testing), 92 of these babies would be aborted. Based on the most recent figures for Down’s Syndrome births, this is projected to result in a decline of 13% reported live births of babies with Down’s syndrome. As opposed to the 25 miscarriages the RAPID study predicts would be prevented by the implementation of cfDNA.

These consequences would have a profound long-term effect on the population of the Down’s syndrome community, and enable a kind of informal eugenics in which certain kinds of disabled people are effectively ‘screened out’ of the population before they are even born.

The UK’s obligations under the Convention on the Rights of Persons with Disabilities (CRPD), entail that disabled people and their families should be accommodated, included, and supported by society. Yet the evidence suggests that parents of children diagnosed with disability are not given the information and help they need to choose to bear and raise their disabled child.

To introduce a screening test that would enable the increased selective elimination of children with Down Syndrome due to a lack of proper inclusion, accommodation, and support, would violate disabled rights and our ethical obligations to disabled people and communities

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