“Down syndrome has to disappear from society,” according to Hans Galjaard, in a recent interview about the new genetic blood-screen NIPT. In his “opinion” he does not take into account the fact that people with Down syndrome judge life better than you and I. Now, the UK government proposed the accurate NIPT be implemented to the NHS screening program.

Professor Galjaard is an influential geneticist and former Unesco member who, on behalf of the United Nations has advised countries all over the world on prenatal screening. Ideas like his have shaped national prenatal screening programs worldwide.

Most Western countries have national prenatal screening programs that single out Down syndrome as a “free choice” for parents. These national screening programs are not aimed at detecting gender, or genes for sexual preference or transgender. That would (rightfully) send the wrong message to society that they would not be equally valued.

Children with Down syndrome need more attention, on average. And that costs money, and effort. And health-care is expensive enough as it is. It puts extra pressure on families and society parents are reminded. Meanwhile nobody discusses what it means to a woman when she aborts her pregnancy mid-term and delivers a dead baby. Nobody mentions the mental and emotional struggle she faces in knowing she played a role in her unborn childs death. The emptiness she feels and cannot explain to her husband. The gap that often starts growing in her relationship or her mother instinct that is absent in a subsequent pregnancy. The hurt she feels every time a happy and healthy child with Down syndrome passes her by.

Magazines hail the new test as the holy grail to women’s reproductive freedom. And women ask each other: Did you get tested? And the women who don’t are asked: did you know it in advance? A question that is so much more than plain interest. Your child is “your choice.” Why does society have to put extra effort and money into your choice? And so, under the pretense of “free choice,” over 90% of women do what society expects of them. The freedom to choose has become the duty to abort.

My son has two sisters with Down syndrome. He helps them with their schoolbag, they let him know they appreciate him by cuddling him to bits. A better person for it. In our family everyone is involved in all activities, even if that means we have to put in extra effort, wait a little longer or change our routine all together. Everyone is equal and everyone knows they are allowed to be who they are. Isn’t that the only choice we have as humans?

About the author: Renate Lindeman is a Mother of two children with Down syndrome, writer, disability activist, a representative for Saving Down syndrome and spokesperson for Downpride. Renate is the former president of the NS Down syndrome society.

Footnote:

Hans Galjaard may be an unknown name to most but he is widely known in the screening world. He was, and still is, a very influential geneticist who helped shape policies worldwide. He is mentioned in this PowerPoint presentation that is also very interesting. Already in the eighties they were working up to this moment: when genetic screening would become part of screening programs. They set the goal, made the agenda and identified obstacles and resistance from society. Of particular interest are slides 15, 24, 28 and 25. In the last one it is mentioned that “optimizing reproductive behaviour” will help reduce ”societal cost and burden.”

Down syndrome advocates launch “Don’t screen us out” campaign urging UK Government to halt new screening proposal.

The number of babies with Down Syndrome aborted is set to to increase following a decision released this morning.

UK Down’s syndrome advocates have today launched the new campaign, Don’t Screen Us Out, after the UK National Screening Council (UKNSC) released its decision to recommend the implementation of a non-invasive prenatal testing (NIPT) technique called ‘cell-free DNA’ (cfDNA), which may lead to a profound reduction in the number of children born with Down’s syndrome.

Spokeswoman for the Don’t Screen Us Out campaign, Lynn Murray said:

“While the screening itself is being heralded as a move to reduce the number of miscarriages associated with invasive amniocentesis, the UKNSC have glossed over the fact that their pilot study predicts cfDNA screening will detect 102 more babies with Down’s syndrome every year. Latest figures tell us that 90% of babies who are prenatally diagnosed with Down’s syndrome are aborted. If we are to apply this percentage to these newly detected babies, this would mean an increase of 92 abortions for babies with Down’s syndrome annually and an overall decline of reported Down’s syndrome live births by 13%. Such an outcome is likely to have a profoundly negative impact on the Down’s syndrome community”.

The Don’t Screen Us Out campaign calls on the government to halt the implementation of cfDNA screening and to introduce reforms which would support those with Down’s syndrome and their families.

The release of the decision coincides with the recent release of a UN report from the International Bioethics Committee (IBC) of the United Nations Educational, Social, and Cultural Organisation (UNESCO) issuing 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”.

The Governmental enabling of such an approach, 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. As indeed does the haphazard medical support for parents whose child is diagnosed with fetal disability, which leads to pressure on parents to abort their babies with disabilities such as trisomy 21 and causes the conditions that drive the low proportion of Down’s syndrome births. This constitutes a failure to implement section 23, subsection 3 of the CRPD for early and comprehensive support to families with children who have Down syndrome.

Mrs. Murray explains:

“Greater support is necessary for parents who are expecting a child with Down’s syndrome. For example, there is a lack of clarity in communicating the diagnosis or prognosis of fetal disability, and the presumption from many medical professionals that parents would opt for abortion. This is worsened by the fact that there is also limited information and support for the option of raising a baby with Down’s syndrome”.

The cfDNA test should not be implemented into the UK Fetal Anomaly Screening Programme at this stage. Given the state of the medical system as it currently exists, cfDNA may only worsen the culture of informally eugenic anti-disabled discrimination that exists in our screening programme health services.

Don’t Screen Us Out are urging members of the public to visit www.dontscreenusout.org and to use the site to contact their MP urging them to write to the Secretary of State for Health, Jeremy Hunt, asking that the government halts the introduction of second-line cfDNA screening.

ENDS

Lynn Murray, Spokeswoman, Phone: (0044) 1313340133, Email: [email protected].

For more information on Don’t Screen Us Out campaign, see our website www.dontscreenusout.org.

Further information:

• On Friday 15 January the National Screening Committee released a 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 will 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.
• Advocacy groups for people with Down Syndrome have voiced their concerns about the proposal (http://www.theguardian.com/society/2015/oct/17/living-with-downs-syndrome-hes-not-list-characteristics?CMP=share_btn_fb).
• The consultation has failed to meet UK’s obligations under United Nations Convention on the Rights of Persons with Disabilities (CRPD) – see press release above and submission.
• Coincides with report from International Bioethics Committee ​(IBC​) of the United Nations Educational, Social, and Cultural Organisation (UNESCO​) issuing stern warning about the adoption of NIPT in national screening programmes (http://unesdoc.unesco.org/images/0023/002332/233258e.pdf).
• In addition to concerns around disability, IBC also list concerns around gender-selective abortion – as NIPT can be used to detect the gender of a fetus.
• 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 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.

PRESS RELEASE 1 OCTOBER 2015 – For immediate release

New UK Downs test should be deferred due to ethical concerns

An international social justice advocacy for people with Down syndrome is calling on the NHS to defer any decisions on the proposal to introduce a new pregnancy test for the condition until a full ethical review is carried out in accordance with international disability rights obligations.

Saving Down Syndrome UK spokeswoman, Lynn Murray explains:

“The NHS is proposing the implementation of the new cfDNA, or NIPT, test into the national screening programme.  The proposal is likely to have a significant negative impact on the Down syndrome community, including further reductions in births. However the NHS has failed to consider the ethical implications of the proposal on our community. This fails to meet the UK’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (CRPD)”.

Mrs Murray explained that an area of particular concern is that people with Down syndrome have not been consulted on the proposal, despite the clear impact it will have on their basic human rights, and this being a specific requirement under the CRPD.

Saving Down syndrome is also concerned that the NHS proposal indicates an increase in overall harm despite messaging that the test is “safer”. The NHS’s own consultation documents indicate a net increase in pregnancy loss of 67 per year, with an increase of 92 involving Down syndrome and a decrease of 25 other pregnancies.

“We are particularly concerned that there is a discriminatory assumption that the reduction of miscarriages is positive (and it is) whilst an increased loss of Down syndrome pregnancies is not a concern, and would even seem to be an objective given the focus on increasing detection rates”, explained Mrs Murray.

Mrs Murray concluded that  “There are no positive health benefits being offered under the proposal. While we would welcome anything that improves the quality of care for pregnant women, introducing NIPT as part of a national screening programme to “improve performance” actually means that more unborn babies lives may be lost with no other health benefit”.  

ENDS

Lynn Murray, UK Spokeswoman, email: [email protected]

Click here for a copy of our submission on the NHS proposal.

For more information on Saving Down Syndrome, see our website www.savingdownsyndrome.com and Facebook page www.facebook.com/savingdowns

Further information:

• The National Screening Committee submissions on implementation of second-line cfDNA screening (NIPT – non-invasive prenatal testing) closed Friday and a decision is expected from the committee in early November. Proposal is being presented as a measure to reduce number of miscarriages from invasive testing.
• National Institute for Health and Research RAPID evaluation study projects that 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 going on for a termination, this will result in 92 more Down Syndrome foetuses being aborted each year.
• Given there were 717 Down Syndrome live births in 2013, this will result in a 13% decrease in live births for Down Syndrome – have a profound effect on future numbers of people with Down Syndrome in the population.
• Other advocacy groups for people with Down Syndrome have voiced their concerns about the proposal (http://www.theguardian.com/society/2015/oct/17/living-with-downs-syndrome-hes-not-list-characteristics?CMP=share_btn_fb),
• The consultation has failed to meet UK’s obligations under United Nations Convention on the Rights of Persons with Disabilities (CRPD) – see press release and submission.
• Coincides with report from International Bioethics Committee ​(IBC​) of the United Nations Educational, Social, and Cultural Organisation (UNESCO​) issuing stern warning about the adoption of NIPT in national screening programmes (http://unesdoc.unesco.org/images/0023/002332/233258e.pdf).
• In addition to concerns around disability, IBC also list concerns around gender-selective abortion – as NIPT can be used to detect the gender of the child. Stop Gendercide have made a submission to the committee on this issue (http://www.stopgendercide.org/cfdna-sex-selective-abortion-concerns/).
• 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 Jane Fisher is also Director of Antenatal Results and Choices (ARC) who have just 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– http://www.forbes.com/sites/matthewherper/2014/02/28/the-market-for-dna-sequncing-based-down-syndrome-tests-could-exceed-6-billion/