29 Oct PRESS RELEASE: People with Down’s syndrome and their families very disappointed at Government decision to roll-out new pre-natal test without consultation and ethical review
PRESS RELEASE – FOR IMMEDIATE RELEASE
People with Down’s syndrome and their families very disappointed at Government decision to roll-out new pre-natal test without consultation and ethical review
People with Down’s syndrome, their families and campaign groups are very disappointed that 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 has been approved for roll-out by the Department of Health without consultation with people with Down’s syndrome and their families.
This announcement follows ten months of the community of people with Down’s syndrome and their families requesting that they be consulted before the roll-out is given approval due to the impact that it is projected to have on their community.
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 a parliamentary question released earlier this year 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 Jeremy Hunt on 21 October 2016 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 motion that has now been signed by 28 MPs from across the political spectrum was tabled in support of the community of people with Down’s syndrome asking for a consultation and ethical review to be undertaken.
The concerns of this community have also been raised earlier this year by MP Nigel Evans during Prime Minister’s Questions where David Cameron acknowledged that “there are moral and ethical issues that need to be considered in these cases” and said that you would “have to find a way through this” and “make sure we go about it the right way”.
People with Down’s syndrome and their families have been taking to the airwaves, broadcast TV and newspapers around the country 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 nationally about the proposed rollout.
The approval has also come before the Nuffield Bioethics Council is due to complete a review of the ethical issues surrounding the new prenatal test early in the new year.
Lynn Murray, spokesperson for Don’t Screen Us Out said:
“We are very disappointed that the Department of Health 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 Government has admitted itself that it has made no assessment of the impact this will have on the community of people with Down’s syndrome. The conditions of the UK Equality Act may not have been met.
Furthermore, 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 released today will have a massive impact on our community.
We are also stunned by the unprofessional manner that the Department of Health have chosen to announce the news of the decision coming via comment to a Saturday newspaper rather than an official release.on a working day.”
Disabled Conservative Peer, Lord Shinkwin, said:
“I am saddened by the way this decision was taken. Ministers could have met with people with Down’s syndrome and their families and addressed their concerns before making the announcement. They chose not to and instead signalled to disabled people once again that they would be better off dead. Such prejudice doesn’t fit with my Party’s proud tradition of social reform and the commitment to equality underpinning its ground-breaking Disability Discrimination Act. I hope we learn from this, so that we can really build a country that works for everyone.”
- 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, phone Don’t Screen Us Out spokeswoman:
Lynn Murray: (0044) 01313340133, Email: email@example.com
- Photos of past Don’t Screen Us Out events can be downloaded in high resolution and can be used for media puposes here: https://flic.kr/s/aHskFcqyC7
- Videos of past Don’t Screen Us Out events are available here and original files are availalable on request: https://www.youtube.com/channel/UCwsnM8w6ECwjDIZq0ayHmiA
- The Department of Health have approved the implementation of second-line cfDNA screening (NIPT – non-invasive prenatal testing) into the NHS Fetal Anomaly Screening Programme (FASP).
- 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).
- 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.