19 Mar PRESS RELEASE: World Down’s Syndrome Day – Jeremy Hunt should reject proposal to adopt controversial new pre-natal test
PRESS RELEASE – FOR IMMEDIATE RELEASE
On World Down’s Syndrome Day, parents and campaign groups are calling on Jeremy Hunt to reject a new pre-natal screening proposal that is projected to lead to a profound reduction in the number of children born with Down’s syndrome.
The new technique called ‘cell-free DNA’ testing is being heralded as a move to reduce the number of miscarriages associated with invasive amniocentesis, with a National Screening Committee pilot study predicting that it would result in 25 fewer miscarriage per a year.
But proponents of the test have glossed over the fact that the same pilot study predicts the new screening will detect 102 more babies with Down’s syndrome every year. Based on the current 90% of pregnancies that are aborted following a diagnosis, this would mean an increase of 92 abortions for Down’s syndrome annually.
That reduction equates to an overall decline of Down’s syndrome live births by 13% and would lead to a corresponding reduction in the number of people with the condition in the UK. Such an outcome is likely to have a profoundly negative impact on the community of people with Down’s Syndrome.
A recent UN report from the International Bioethics Committee of the United Nations Educational, Social, and Cultural Organisation has issued a stern warning about the drive to adopt NIPT in national screening programmes. The proposal also violates the UK’s treaty obligations to the UN Convention on the Rights of Persons with Disabilities (CRPD) to make sure that its health policies – including antenatal screening – are informed by and reflective of a ‘social model’ understanding of disability.
On World Down’s Syndrome day, the parents and campaign groups supporting the Don’t Screen Us Out campaign are urging members of the public to visit www.dontscreenusout.org and contact their MP asking them to take action to encourage Jeremy Hunt to reject this discriminatory proposal.
Lynn Murray, UK lead for Saving Downs and spokeswoman for the www.dontscreenusout.org campaign, said:
“We call on Jeremy Hunt to reject proposals to introduce these new tests. As a parent of a teenage daughter with Down’s syndrome, I’ve had 16 years of seeing the effects of screening on the lives of people with Down’s syndrome and their families. These new tests will make this situation worse, not better. The UK government should be putting its energy behind providing real support for our families and other parents who are expecting a child with Down’s syndrome.”
Christine Elliot, spokeswoman for the Down Syndrome Research Foundation, said:
“As we celebrate the 10th WDSD around the world today we also face the biggest challenge for the existence of anyone who will ever be diagnosed with Down’s syndrome. The promise of innovation in the new NIPT test are nothing of the sort for unborn people with DS, it will be their certain demise in 9 out 10 pregnancies. Solely due to a diagnosis that is commonly delivered in an outdated and fear mongering manner. We call upon all people to reject this normalised discrimination that has been accepted without thought or question.”
Renate Lindeman, spokeswoman for Down Pride, said:
“To many, my children and their cohort are examples of avoidable human suffering, as well as a financial burden. Knowing that individuals look at my daughters this way hurts, but seeing governments and medical professionals worldwide reinforce these prejudices by promoting selection is horrendous.”
Note for editors: A media kit including images, related videos and further information is available here: www.dontscreenusout.org/media-kit/
- The Department of Health are currently deciding on whether to follow a National Screening Committee recommendation that second-line cfDNA screening (NIPT – non-invasive prenatal testing) be implemented into the NHS Fetal Anomaly Screening Programme (FASP). The proposal has been presented as a measure to reduce number of miscarriages from invasive testing.
- What has not been highlighted is that the National Institute for Health and Research RAPID evaluation study projects that the proposed implementation will result in 102 more Down Syndrome foetuses being identified each year and based on the current 90% of parents with a diagnosis that terminate a pregnancy, this is projected to result in 92 more Down Syndrome foetuses being aborted each year.
- Given there were 717 Down Syndrome live births in 2013, this would represent a 13% decrease in live births for Down Syndrome – therefore likely having a profound effect on future numbers of people with Down Syndrome in the population.
- A recent 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).
- The NSC cfDNA review summary shows an economic analysis of the proposal and lists costs per a trisomy detected as an important factor to consider. This is expected to reduce from £14,472 to £14,265.
- Private availability of cfDNA testing has already been blamed for a 34% increase in numbers of foetuses aborted with DS and other disabilities in three years.
- National Screening Committee member and RAPID co-author Jane Fisher is also Director of Antenatal Results and Choices (ARC) who have recently 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: http://www.arc-uk.org/support-us/partner-with-us/current-corporate-partners
- 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.