There has been some interesting blogs going around objecting to Saving Downs using the term “eugenics” in relation to antenatal screening for Down syndrome. So, what’s really going here and how did we arrive at a government-funded eugenics programme in New Zealand in 2010?
Firstly, I should clarify that we use the term “screening” in the broad sense, applying to both screening to determine the chance of Down syndrome for the unborn child and diagnostic testing to confirm Down syndrome (albeit without complete certainty). When this technology is used for life affirming care for the unborn child and the parents, then that is antenatal health care and we support that.
When screening and diagnostic testing is used to select who gets born, based on the genetic difference of that child, then we have entered the realm of selecting the type of child, and it is eugenics. We oppose eugenics. It harms our community and it devalues the lives of those with Down syndrome.
So, what is eugenics? From Natalie Ball at Calgary University:
The term eugenics was coined by Sir Francis Galton in 1883 to refer to “the investigation under which men of a high type are produced”. Under Galton’s vision of eugenics, there are two ways that eugenics can be achieved: through increasing the frequency of so-called ‘desirable’ genes (known as positive eugenics), or decreasing the frequency of so-called ‘undesirable’ genes (known as negative eugenics). Eugenics is one dynamic that influences the judgment of people’s abilities and the disabling consequences.
Objections have been raised that eugenics has to involve some degree of enforcement by a government. This is incorrect. The French Council of State in its study on the revision of the bioethics laws in 2009 stated that:
“Eugenics may be the fruit of a policy deliberately carried out by a state. It may also be the collective result of a series of converging individual decisions taken by future parents in a society that seeks the production of the “perfect child” or the least one unaffected by numerous serious diseases”
Eugenics became popular in the early 20th century then quickly fell out of favour after the holocaust. It has now been resurrected under the guise of prenatal health care, reproductive choice, human rights and even “private decisions concerned with family’s well being”.
It is one of life’s great paradoxes that the most gentle, loving and enduring amongst us have always been the target of the eugenists – those with Down syndrome: the very people who embrace those defining human qualities of unconditional love and compassion so needed in this age. The Down syndrome community is first in line now, as it was in 1939 at the start of the holocaust. A case currently before the European Court of Human Rights even seeks to declare a fundamental human right to kill one’s unborn baby because it has Down syndrome through selective abortion. Unfortunately this is nothing new, and we do it now here in New Zealand.
It was back in the spring of 1939 that the infamous Action T4 programme was launched in Germany, the so-called euthanasia programme of the disabled. It had its origin in Binding’s and Hoche’s 1920 paper “Authorisation for the destruction of life unworthy of life”. The initial decree required midwives and physicians to report all infants born with disabilities to be reported to the T4 authorities. Number one on the list was “Mongolism”, that dated and offensive term of the time for people with a third 21st Chromosome: Trisomy 21 or Down syndrome. The first killings of the children started in October 1939 and quickly moved to adults. 70,000 disabled people were eventually killed as part of the holocaust that went on to include the gypsies and then the Jews. All in the name of racial hygiene and the eradication of those deemed to be unworthy of life. The Nazi Doctors involved where found guilty of crimes against humanity at Nuremberg and the practice of persecuting minority groups has been prohibited under international law ever since.
But the scourge of eugenics was to gain momentum in New Zealand in 1977 with the Royal Commission’s report on abortion, some 32 years after the holocaust. The Commission dealt with the issue of “handicapped” persons, stating:
“ It is not immoral to terminate a pregnancy where the fetus is likely to be born with a severe physical or mental handicap, because the burden of the handicapped person to himself and to his parents may be greater than the sum total of their happiness.”
Again, Down syndrome was the target of discussion, based in eugenic ideas that people with disabilities have “life unworthy of life” and their degree of burden exceeds their happiness. Of course any one with Down syndrome, or their families, will testify to the joy and love of their lives and the enrichment they bring to our society. New Zealand legalised the death of unborn children with disabilities in 1977, laying the grounds for eugenic abortion.
Under the radar the Ministry of Health has been running a screening programme for Down syndrome here since 1968 and the slippery slope was set in motion. In 2004 the National Screening Unit (NSU) began to review the programme, adding grease to the slope. They quietly noted enthusiastically that one of the purposes of their programme was to:
“allow couples at risk of anomaly to embark on having a family, knowing they may avoid the birth of seriously affected children through selective abortion”.
At the time the NSU were concerned that too many “normal” babies were being killed as a result of invasive tests and resulting miscarriages whilst trying to find the “defective” ones and that current practice had:
“failed to reduce the numbers of babies born with undiagnosed Trisomy 21”.
And so in 2010 the NSU brought in the “quality improved” programme to improve detection rates in spite of the basic facts that there is no therapeutic benefit in the programme and that participation in the screening pathway imposes more harm than benefit to an unborn child, through miscarriage and morbidity due to diagnostic testing.
The practice actually has more to do with money. It costs around $70,000 to detect an unborn child with Down syndrome and governments consider this to be cost-effective and cheaper than providing additional care, should it be required. The 2007 Health Outcomes report for the NSU says this about screening:
“It is cost-effective, as the estimated cost of avoiding the birth of a baby with Down syndrome is substantially less than the lifetime costs of care.”
Our children are reduced to a valueless disposable commodity.
Further grease was added to the slide with the introduction of new blood tests for Down syndrome in early pregnancy in America this year that are now being promoted in Europe, Australia and some Asian countries. People say this isn’t eugenics? Well what to the geneticists and bioethicists have to say then?
In March 2011 Philippos Patsalis of the Institute of Neurology and Genetics in Nicosia, who discovered the new technology, told reporters that:
“the cheaper and quicker method of blood sampling rather than collecting fluid from the womb will encourage more couples to take the test and therefore slowly eradicate the disease”
On 8 June 2012 Robert Klitzman, a bioethicist at Columbia University, made the following comment in relation to the use of these tests:
“This technology can enable us to eliminate some very serious diseases like Down syndrome”
So there we have it, no beating about the bush, it’s a disease and it needs to be eradicated through killing the person before birth. Classic eugenics worthy of Action T4 honours. Same intention: eradication, same outcome: eradication, same excuse: it’s a disease; these lives are unworthy of life.
But it doesn’t stop there though, now the de-selecting of the unborn with Down syndrome is being proclaimed as a human right. Forget the well-greased slippery slope of eugenic screening programmes and selective abortion; bring on the play ground slide for eradication as a right.
First there are a number of successful “wrongful birth” law suits in Europe and American where parents have successfully sued Doctors for not diagnosing their child with Down syndrome in the womb so that they could have killed them.
Then we had the two “bioethicists” in Australia argue that infanticide of children with Down syndrome should be permissive as:
“such children might be an unbearable burden on the family and on society as a whole”
Bioethicists? Yeah right – the new name for eugenicist.
And now we have a case before the European Court of Human Rights seeking to declare a fundamental human right to kill one’s unborn baby just because it has Down syndrome. Faced with the danger of prenatal screening and elimination becoming enshrined and consecrated as a human right the European Down syndrome community has launched an urgent mobilisation to petition the court. The petition appeals to the conscience of the Court and to European institutions to recognise the humanity, and protect the right to life, of people with Down syndrome and all disabilities. 38 European and International disability organisations have weighed in to support the petition.
Recognising as a human right the elimination of children with Down syndrome before their birth would stigmatise a human group selected on the basis of their genetic difference. A favourable ruling would simply deny the humanity of the persons with disabilities and setup in law the mechanism for their elimination through eugenics.
None of this makes for pleasant reading. Let us remember though that mothers who enter the screening pathway have wanted pregnancies. If there is an unexpected diagnosis then that is the first moment they are called to be true parents and provide unconditional love and support to their child. The inherent dignity and value of that wanted life is not suddenly eroded because there is a diagnosis of Down syndrome. As a civilised society we should be providing compassion and support in those situations and reaffirming our commitment to the same life affirming care that was there before the diagnosis. And we can be sure that the Down syndrome community will be there to support them.
what an amazing eye opening and truly compasionate article
A message for Robert Klitzman and Co. “I did it, I passed my leaving Cert” http://www.irishtimes.com/newspaper/ireland/2012/0816/1224322258639.html
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Geez, I’m not sure what to think… the whole abortion thing is a slippery slope as it is. On the one hand you’re right about the compassion thing, and I have nothing against people with down-syndrome – I certainly think they should be accorded the rights and respects of any other human being. However, on the other hand, I can only imagine that it would be incredibly difficult and painful to raise a child with down-syndrome, for all involved. In some ways it could be more humane to prevent the child from being born? That sounds horrible, and either way it seems it would be a painful decision to make – I think the sadness would haunt you the rest of your life. Although my current view may clash with the majority of this site, I think that ‘eugenics’ isn’t such a horrible thing, and that the choice should be that of the individual, not a lobby group saying one way or the other. I hope it is a decision I never have to make (I’m 18), but if I do I’d be open-minded to all possibilities.
My daughter is neither diffucult or painful to raise.
1.
In a recent Children’s Hospital Boston survey 99%
of parents of children with Down syndrome reported that they loved their child,
97% were proud of their child, and 79% attributed a more positive outlook on
life to their child.
1.
In a recent Children’s Hospital Boston survey 99%
of parents of children with Down syndrome reported that they loved their child,
97% were proud of their child, and 79% attributed a more positive outlook on
life to their child. My daughter is neither diffucult or painful to raise.
It’s good that you’re such a loving and understanding parent for your child, and I can imagine how being the parent of a child with down-syndrome could also be enriching and self-satisfying experience. I admire that. And without meaning to be offensive I’d just like to ask; what about the parents who either aren’t cut out for such a role or would rather not go through that experience? If you propose to legislate the illegality of aborting disabled fetus’ I suspect the number of unhappy parents with disabled children may increase. Also, would you choose to have down-syndrome yourself, or another intellectual disability?
And keep in mind that the ‘eugenicists’ you rile so viciously against are no less human than yourself – this is a contentious issue.
Good questions Michael.
Parenting any child covers a whole range of experiences, irrespective of genetic differance. Issues of whether one is cut out to be a parent or have any parental experience are questions of whether one wants to be a parent, not whether they want to be a parent but only to a particular type of child. Like the survey said, the vast majority of parents of children with Down syndrome say that the experience enriches their own life.
Would I choose to have Down syndrome? There is no choice involved. You either have it from conception, or you don’t. That’s the same for any human being, you are who you are.
As to the eugenicists, I don’t rile them, but I hold them accountable for their actions. I don’t advocate preventing their birth for being eugenicists. They are no less human than my daughter with the extra love chromosome, yet they have no problem with targeting others like her for birth prevention.
You both make strong cases, however I still think the parents should be able to choose. Thankyou for a thought-provoking discussion, best of luck with your campaign.
I’d also like to make it clear that when I said “‘eugenics’ isn’t such a horrible thing” I was basing that opinion on the information in this article, however upon further reading it really does seem rather nasty, especially its links to the Nazis. Very sad 🙁
Michael you can’t screen and abort babies on the basis of gender, race, etc etc so nor can you screen and abort a disabled baby-its discrimination. Babies with DS are adopted very easily (there are waiting lists) but society views it more acceptable to abort the baby rather than adopt the baby out. Babies with DS face very poor odds. Personally I think shame on any society (so called civilised societies at that) for targetting and decimating an innocent and vulnerable group of human beings. And I can tell you that my 19 year old son was horrified to learn that the doctors and midwives pressured me to abort his now 17 year old younger brother with DS. He also said there is no way he would ever abort a baby with DS. He knows the truth about DS but that truth is not accepted by our communities. AS for the eugenicists-there are evil, sociopathic people in the world who have no concept of conscience (and I’m not saying all eugenicists are sociopathic-I’d say a large percentage are though)-that’s the reality. I think there should be pre-natal screening for sociopaths (and this will be availbel some day) so that we can monitor their behaviour and ensure they do not threaten humanity and do not cause pain.
Mike, I am near speechless. Let me elaborate on your …amazing informative article. It drove a knife into my heart to just imagine the trauma those blessed little children must endure. Let them live!!!! Mike help them to live, they are well worth the efforts we must all make to save their lives. Please keep us imformed, and if I personally can be of assistance, you may notify me at [email protected]. I want to help save the lives of all unborn babies, even those who are considerd “defective” by a gross unlearned society. Thank you Mike for your work and interest.
Thank you Roni for your kind and gracious words. We all stand together. Please Sign up for future blogs at the top right of the page and follow us on Facebook.
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