Last month Saving Downs held the “Loving Every Child: Defying Eugenics” seminar. Dr Deirdre Little gave an outstanding presentation on ‘Current practice and how it links with eugenics’. She gave a very detailed, scientific breakdown of what is really going on with routine antenatal screening programmes and their eugenic nature. It was timely, as there is a lot of smoke and mirrors going on around the place about screening and the new blood tests.
Take today’s article in the UK’s Telegraph for example, with the headline:
“Blood test for Down’s ‘could save 300 babies’ lives a year”
When you break it down, it actually means that saving of “normal” babies could be at the cost of over a further 700 babies with Down syndrome, resulting in a net increase in around 400 lives a year lost. The headline should read “Blood test for Down’s could cost 400 babies’ their lives per year”. I guess that doesn’t sound as good.
So, we have a misleading headline implying that the new blood test is a good thing as it saves lives, when the situation is the exact opposite. But then we have this:
“It therefore has the potential to all but eradicate Down’s syndrome”
Pardon me? Eradicate. Really? Well, yes that is the whole point, on this score they are being honest.
Let me share some of Dr Deirdre Little’s presentation that navigates through the fog. Her work is based on the Australian experience but equally applies hear in New Zealand and in the UK, as we have almost identical screening programmes. Most of what follows is credited to Dr Deirdre Little.
Each mother, at her first consultation for each pregnancy, is to be invited to consider the worth of her child. She is invited to submit her child for ‘consideration’ of whether he or she is worth having. No benefit is stated to Australian children from the new consideration.
That’s right. Mothers with wanted pregnancies are offered the opportunity to select their type of child based on a subjective assessment of another persons worth.
The National search for Down syndrome is now a population test. It should not be likened to other antenatal investigations and care, which aim to protect and further the health of mother and child. In days of Hippocratic principles of medicine, to the question: ‘how will this particular antenatal investigation help me or my child’ there was an answer. However, when that question is put to population testing for Down Syndrome: ‘how is it intended to help me or my child’ the answer is an offer to destroy the child within a legally timed framework.
There is no therapeutic justification for screening for Down syndrome during pregnancy – see our blog here. To be considered therapeutic in medical terms any proposed benefit has to outweigh the risk of procedural death to each child tested. Saving Downs has asked the New Zealand National Screening Unit for specific clinical evidence that there is a proportional therapeutic benefit to an unborn child and the mother that relies on a diagnosis of Down syndrome. They haven’t provided one piece of such evidence, despite investing $27M in their “quality improvement programme”.
The earliest amniocentesis foetal chromosome test for Down syndrome was in 1968. It was offered to older women who have a greater chance or “incidence” of Down syndrome births. Initially women over 40 years then women over 37 years were offered invasive testing. Openly eugenic, it declared in the “Australian Doctor” in March 2003:
“..where abortion laws permit, there is no need and no justification for delay in trying to institute a prenatal diagnostic screening programme for Down Syndrome. To effect the policy advocated here will bring relief to the community and new assurance to prospective parents”.
But medicine became dissatisfied. This method could only detect 70% of children with Down syndrome before birth. The other 30% occur in women under 37 years of age. Also raising concern, as was later referred to in the International Journal of Medical Sciences in 2005, this advanced maternal age group had included a disproportional number who would not accept termination for religious reasons and it included many (e.g. with infertility) who would not accept the hazards of invasive diagnosis.
So, as the decades passed, techniques of detection escalated to maximize live birth prevention of Down syndrome, to produce the curly and convoluted programme of screening and its targeting we have today.
In essence, the aim of prenatal testing is to maximize detection of Down syndrome for secondary prevention through selective abortion. The stated aim is to reduce the number of live Down syndrome births.
It has been estimated that $75,000 worth of screening goes into each Down Syndrome birth avoided. The MJA article looking at Down syndrome births in Queensland which had not reduced over a four year period of testing was disinterested in procedural mortality, concluding:
“recent economic analyses have shown that population based screening probably represents value for money. When the costs of screening are offset against the lifetime costs of caring for a person with Down syndrome, screening is less costly than no screening at all, regardless of which strategy is used.”
So we have a clear agenda here of birth prevention based on the might dollar.
A journal compilation published in ANZJOG in 2006, 46:92 -96 looking at population screening policy similarly concluded:
“For consideration of national policy, cost effective screening programmes will be significantly compromised if the participation rate is low… the costs of the screening programme to detect a certain number of cases has to be balanced against the cost of managing missed or undetected cases in the population… transport to and from (termination) facilities and ongoing grief counseling as well as the emotional cost of miscarriage.”
So we get to the truth of the matter. Screening programmes are significantly compromised if participation is low, or insufficient numbers of births are prevented. The UKs NHS even has an excel spreadsheet to evaluate screening programmes that require a termination rate to be entered by the evaluator along with the cost of stamps and phone calls. It would be funny if it wasn’t so dehumanising to our community.
No wonder parents feel they can’t outrun this. They have been left to outrun it on their own.
Dr Little concludes:
This test invades more than the womb and threatens more than the safety of the child, with neither proposal nor evidence of benefit, it invades the home, the family, the doctor-patient relationship and the security of society, which has a right to be protected from quasi- medical and tax-payer funded eugenic programmes.
Clearing the fog from prenatal genetic testing gives families back their autonomy and lets them breathe the free air again, as Tolkein would say. But not just free air, air lit with understanding, and enriched with guidance.
Dr Littles full presentation can be read here Current Practice and How it Links with Eugenics
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The appear to have re-written the Telegraph article as it now has the headline “Blood test for Down’s ‘could avert 300 miscarriages a year'”. Also can’t find the quote about eradicating Down’s. Was that a quote from a Dr or was it the journalist himself who wrote it? Interesting that they’ve changed it. Wonder why?
Thanks for the note Theo, they have indeed changed the headline and removed a sentence about eradication. But here is another article in which another geneticist hails the new tests to enable eradication http://phys.org/news/2011-03-syndrome-breakthrough-horizon.html