Down’s syndrome advocates are calling on a halt to the roll-out of new ‘Non-Invasive prenatal tests’ (NIPT) on the NHS after a series of Freedom of Information requests have revealed that the number of babies born with Down’s syndrome has dropped by 30% in NHS hospitals that have introduced new test.
The figures published in The Times this morning cover the period from 2013 (before the test was introduced to some hospitals) to 2017, show that more women who have the new test go on to have abortions.
The 26 hospitals trust that provided NIPT saw a change in the birthrate for babies with Down’s syndrome from 1 in 956 births (0.11%) in 2013 to 1 in 1,368 (0.07%) in 2017, which is 30% drop in birth rate.
The Government have previously admitted that no assessment was made of the impact that the roll-out of will have on the lives of people with Down’s syndrome. In an answer to a parliamentary question the Department of Health confirmed that “…no assessment was made of the impact of NIPT on the number of abortions, Down’s Syndrome community and medical professional and society’s attitudes towards people with Down’s syndrome.”
An open letter signed by 900 people with Down’s syndrome and their families was delivered to the Government demanding that approval of the implementation be delayed until a proper consultation with the community and a full ethical review of the proposed implementation.
A parliamentary motion was also signed by 34 MPs from across the political spectrum in support of the community of people with Down’s syndrome asking for a consultation and ethical review of the proposed roll-out of the tests.
Lynn Murray, spokesperson for the Don’t Screen Us Out campaign said:
“As a mother of a 19-year-old daughter who has Down’s syndrome, I see every day the unique value she brings to our family and the positive impact she has on others around her.
The figures released today show that the fears of the Down’s syndrome community that rolling out these tests would lead to a large drop in the number of babies with Down’s syndrome were not unfounded.
We are calling on the Government to halt preparations to further roll-out the tests on the NHS immediately and to undertake an urgent inquiry into the impact that these tests are having on birth numbers of babies with Down’s syndrome.
These figures show that providing the tests in NHS hospitals is leading to a large decrease in the births of babies with Down’s syndrome. It is totally unethical and discriminatory for the Government to go any further with the roll-out of the tests given that data from NHS hospitals shows that these tests are leading to the reduction in the numbers of people from a specific community.”
For more information on the Don’t Screen Us Out campaign, see our website www.dontscreenusout.org or email firstname.lastname@example.org
For interviews, contact Don’t Screen Us Out spokesperson Lynn Murray on 0784 0966 736 or email email@example.com
The full report in The Times is available here: https://www.thetimes.co.uk/article/new-test-brings-big-fall-in-birth-downs-babies-c89krkjcx
A report from International Bioethics Committee (IBC) of the United Nations Educational, Social, and Cultural Organisation (UNESCO) issues a stern warning about the adoption of NIPT in national screening programmes (http://unesdoc.unesco.org/images/0023/002332/233258e.pdf).
National Screening Committee member and RAPID co-author Jane Fisher is also Director of Antenatal Results and Choices (ARC) who have previously announced a corporate partnership with Natera, a supplier of the Panorama NIPT screening test: http://www.arc-uk.org/news/193/29/Natera-becomes-ARC-s-latest-partner/d,news-detail. This is an addition to their ‘partnership’ with other NIPT testing providers.
NIPT techniques will shortly allow for the testing of the entire human genome, and the targeting of fetuses for abortion based on a range of illicitly considered characteristics.
The future market for testing could exceed $6 billion in the US alone.