Cross poster from the Culture Vulture
Last week this blog featured a couple of posts on the issue of prenatal screening, which of course resulted in a slew of comments about the nature of this screening and the resulting abortions of people with Down syndrome that it leads to in the vast majority of cases.
One of the interesting issues that was raised during the course of those discussions was whether the use of screening for Down syndrome was a problematic act in and of itself, or whether it was merely the aborting of people with Down syndrome that accompanies the screening that is actually the issue here.
I think it’s actually a bit more complex than that, because while asking the question about whether the act of testing for a particular genetic condition is unethical or not is an important thing to ask, focusing only on that aspect of the discussion misses other questions, such as ‘is it necessary?’ or ‘when should it actually be carried out?’, which are questions which also have an impact on the question of whether we should be carrying out early screening for Down syndrome.
Some people have suggested that early screening for Down syndrome empowers the parents of an unborn child by providing them with knowledge about their child, thus enabling a batter standard of care for the child, and appropriate support for the parents in this specific caring role.
I think the empowerment of parents is a good thing, however I am not at all convinced that early prenatal screening is actually necessary for parental empowerment – why wouldn’t a test at birth achieve the exact same outcome for parents?
Is there anything unique and pressing that a baby with Down syndrome needs at birth that a baby without Down syndrome doesn’t? If not, then why can’t the test wait until birth?
This idea of parental empowerment is tied closely to the very recent fascination with the notion that we should be ‘managing’ every pregnancy, but I have yet to be convinced that good ‘pregnancy management’ requires early screening for Down syndrome.
Does knowing that your child will be born with Down syndrome actually make the scenario of being a parent of a child with Down syndrome any easier to come to terms with?
Doesn’t it actually create more pressure on the parents, who, while the child is still hidden from sight within the womb, are far more likely to fall prey to unrealistic fears and imaginings that would otherwise be quickly dispelled if the child was actually there to see, hold and touch when they received the diagnosis?
It’s also important to remember that invasive tests such as amniocentesis carry very little risk to the baby if they are carried out much later in a pregnancy.
All of this leads me to conclude that the primary reason for promoting early screening for Down syndrome is to provide a window of opportunity for eugenic abortions to be carried out – apart from reducing the risks to the baby from invasive testing, this is the only thing of any substance that actually changes if you shift the testing process to a point much further down the track.
I had the privilege of being at a bioethics colloquium in Australia earlier this year where this particular issue was debated, and one important point that was raised was that of ‘disproportionate risk’, and it’s impact on the ethics of screening.
Now usually when people think of the issue of disproportionate risk and screening they think of it in relation to the risk caused by the testing (i.e. ‘is there a serious risk of harm to mother or the baby from the test itself?’), but this completely misses the disproportionate social risks of providing early screening for Down syndrome.
You see, when early screening for Down syndrome is made available, there is a disproportionate risk of death to persons with Down syndrome (approximately 85% of people with Down syndrome are now aborted as a result of this screening), and this needs to be considered when evaluating the merits of the act of screening.
When push comes to shove I am yet to be convinced that there is any genuine need for Down syndrome screening to actually take place early in a pregnancy, and therefore I am not at all in favor of the current screening programme, which I think could be carried out much later if, as its advocates claim, eugenic abortion really isn’t a key aspect of this programme.
Cross posted from the Culture Vulture.
If you are one of the hundreds of daily readers of the Culture Vulture you will already be familiar with the tireless and important work of Mike Sullivan, who is leading the charge with a group of other concerned Kiwi parents of children with Down syndrome over the eugenic prenatal screening that is leading to the aborting of almost 75% of people with Down syndrome in this country.
Mike has just launched a new website and Facebook Page called Saving Down syndrome .
I encourage everyone to check out the website here, and join the Facebook Page here.
Cross posted from the Culture Vulture.
From This is Derbyshire.co.uk…
A top children’s modelling agency has signed two youngsters from Derbyshire with Down’s Syndrome as part of a campaign designed to break down barriers.
Seven-year-old Harvey Simpson and three-year-old Poppy Maynard are now on the books of London agency Urban Angels.
Models from the firm have previously graced the pages of Vogue Bambini – an Italian magazine focused on kids’ fashions.
It is hoped Harvey and Poppy will prove to be a big hit with clients. Companies have already said they would like to use the pair.
The agency’s founder, Alysia Lewis, said both Harvey and Poppy were signed as part of the firm’s Breaking Down Barriers campaign – launched to encourage the industry to use more diverse models.
Alysia said: “I’m extremely excited about Poppy coming on board, she’s absolutely delightful and Harvey was just so adorable and full of joy from the moment I saw him. From a professional point of view he photographs beautifully.”
The campaign was born out of Alysia’s frustration at the lack of models who have any form of disability.
She added: “It’s not campaigning for campaigning sake, after all, the children have fun, the mothers feel proud, and very importantly the average consumer gets to see the true nature of our diverse society.”
Harvey was discovered when he entered the Next/Urban Angels Model competition and was chosen as a winner by Alysia, who started the agency in 2003.
Harvey’s mum Lisa Simpson, 34, of Brookfield Way, Heanor, is extremely proud of her son’s success.
She said: “Our kids are just as gorgeous as everybody else’s. Harvey absolutely loves it. He’s a cheeky monkey, and he plays up in front of the camera, but the photographers are great at catching him at just the right moment.”
After hearing about Harvey’s success, Poppy’s mother Philippa Maynard, of Gladstone Street, Normanton, sent photos of her daughter to the agency and Poppy was signed up.
Philippa, 44, said: “It’s early days yet, but we are hopeful that Poppy will get lots of work.
“Kids with special needs need to be included in the media positively. Our kids need to be represented.”
Cross posted from the Culture Vulture.
From the front page of the Northern Advocate…
A group led by a Whangarei man is taking the Government to the International Criminal Court, alleging its policy on screening for Down syndrome is akin to genocide and a crime against humanity.
A group of 37 parents and siblings of children with Down Syndrome and anti-abortion group Right to Life New Zealand have lodged a complaint with the court in The Hague, Holland, against the Government’s antenatal screening programme for Down syndrome.
The Ministry of Health has denied the group’s claims.
Group spokesman and Whangarei engineer Mike Sullivan said the complaint was laid under the Rome Statute and the court had confirmed it was being considered.
The group complained that the policy articles which deal with genocide and crimes against humanity respectively. Mr Sullivan said the policy breached articles by imposing measures intended to prevent births and by extermination.
The court has been asked to investigate and intervene in the Ministry’s antenatal screening programme, alleging it persecutes people with Down syndrome through the prevention of their births.
Mr Sullivan said the policy was akin to social engineering and prevented around 75 per cent of births of people with Down syndrome in New Zealand.
The following letter was sent to the UK Daily Telegraph by Alison Davis in regards to the news of the new blood test for Down syndrome (Apparently the letter was not published by the Telegraph).
Alison suffers from spina bifida, and lives life in a wheelchair because of this.
Also, please keep Alison in your prayers, I heard from her career late last week that she has been in terrible pain in the last couple of weeks, and after hospitalization, and subsequent release, doctors are now trying various things to ease her suffering.
Dear Sirs,
I read with some dismay your story (“Blood test for Down’s syndrome” 30 June 2010) which expressed the “hope” that a new non-invasive pre-natal test for Down’s syndrome will soon be widely available. This “hope” seems to be based on the fact that the test may reduce the numbers of miscarriages of so-called “healthy” babies who currently die as a result of invasive tests to detect Down’s syndrome.” In doing so, it perpetuates the common myth that while killing a “healthy” baby is a tragedy, killing a disabled baby is to be lauded.
A spokesman for the Royal College of Obstetrics and Gynaecology dubs it the “holy grail” of Down’s syndrome testing, while the lead researcher “hopes all women in the world will eventually be offered the test.” She further claims it is “safe, cheap, fast, reliable and accurate” and that it “will be of immediate benefit to pregnant women …” She fails to mention two facts: it is no benefit to a pregnant woman to be enabled to abort her disabled baby, however apparently “safe” and “cheap” the detection process may be. Indeed post abortion distress is particularly common among such women; and it most certainly is not a “benefit” to the baby who has Down’s syndrome, or any other disability, to be killed by abortion.
I am severely disabled myself, and use a wheelchair full time. I have spina bifida, another disability subject to the popular notion that killing disabled people is more beneficial (to our mothers? or to society?) than letting us live – and that it is, conveniently for a cash-strapped society, also very cheap.
Is any greater offence possible to a human being than to be told that killing her/him is a “holy grail” and to laud the cost benefits of doing so? I seriously doubt it.
Alison Davis
We have bee sent a copy of an official National Screening Unit (NSU) Report from 2007 (obtained under the Official Information Act).
The report is titled: Summary of Key Informant Interviews Antenatal Down syndrome Screening, Final Report, and in a section titled “Cost Effectiveness”, it clearly outlines the case for why aborting Down syndrome babies is more cost effective than allowing them to live.
What is rather interesting about this document is that it doesn’t use the word ‘abortion’, instead it uses sanitized euphemisms like ‘avoiding the birth of a baby’.
Here’s what that section says (emphasis added):
2.3.2 Cost Effectiveness
A further assumption regarding the establishment of formal screening programmes is that the programme will be cost beneficial for the population and the health system.
The scan highlighted literature that supported the premise that the economic costs of screening outweigh the high costs associated with the long term care needs of an individual with Down syndrome. For example Wald and colleagues assessed the implementation of antenatal screening for Down syndrome in practice using individual risk estimates based on maternal age and three serum markers. This study assessed the uptake of screening, detection rates, false positive rate, probability of Down syndrome relative to the positive result, the uptake of amniocentesis in women with a positive result together with the costs of the screening programme. The findings concluded that antenatal maternal serum screening for Down syndrome is effective practice and can be readily integrated into routine antenatal care. It is cost effective as the estimated cost of avoiding the birth of a baby with Down syndrome (about 38,000 pounds) is substantially less than the lifetime costs of care.
Further support for this view also suggested that while screening costs will vary depending on the testing format, and while some may feel that the cost of about 40,000 pounds sterling to prevent the birth of a baby with Down syndrome to a woman under 30 may be expensive, it is low compared with the costs of caring for someone with Down syndrome.
A Health Technology report, “First and second trimester antenatal screening for Down syndrome: the results of the serum, urine and Ultrasound Screening Study”, (known as the SURUSS report), contains detailed cost analyses of the screening test options. This study concluded that on the basis of efficacy, safety and cost, an integrated screening test format was the test of choice.
Other literature emphasis that the implementation of new strategies for the detection of Down syndrome all have economic implications, these are unique to antenatal diagnoses, and must be considered prior to implementation. Indirect and intangible costs must be included in the analysis, not just direct medical costs.
The report is dated March 2007, and it states the following statement about the NSU in its Executive Summary:
“The National Screen Unit (NSU), a business unit of the Ministry of Health (the Ministry) has responsibility for the strategic management, operation and oversight of three screening programmes, and is conducting preliminary work on other strategic screening programmes.”
The Executive Summary then goes on to state the purpose of the report:
“The intention of this report is to provide the National Screening Unit of the Ministry of Health information to inform its decision as to whether a national antenatal screening programme for Down syndrome should be established in New Zealand.”
Make no mistake about it, the brutal and inhuman practice of eugenics is alive and well in NZ.
The following statement comes from paragraph 28 of an Official Cabinet Memorandum that was issued by Labour MP, and then Minister for Health, Pete Hodgson, on the 23rd of October 2007.
“International experience suggests that as a result of screening and diagnostic tests, up to 90 percent of women who receive an antenatal diagnosis of Down syndrome will choose to terminate their pregnancies.”
This statement clearly indicates that the Labour Government knew full well that by pursuing the new antenatal screening programme they would be implementing a programme that was eugenic, and that would lead to the killing of 90% of the Down syndrome people discovered by this screening process.
Paragraph 28 of that same Cabinet Memorandum also acknowledges that the new screening programme has the potential to “increase negative perceptions of Down syndrome and disability”.
As well as that, it also states that the new programme could “imply that Government aims to reduce the incidence of Down syndrome” – which supports the assertions that the government knew full well that it needed to sugarcoat and control the flow of information about this new screening programme in order to avoid such negative fallout.
Here is paragraph 28 in full…
28. There is potential for activities associated with improving the quality of antenatal screening for Down syndrome to have a negative impact on people with disabilities, including:
- increase negative perceptions of Down syndrome and disability
- imply that Government aims to reduce the incidence of Down syndrome
- decrease in the number of babies born with Down syndrome. International experience suggests that as a result of screening and diagnostic tests, up to 90 percent of women who receive an antenatal diagnosis of Down syndrome will choose to terminate their pregnancies.
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