On the eve of the Paralympics, BBC Newsnight ran a segment called ‘Eugenics, Helping or Eradicating Disability?’ The show began with the question “is it a noble aim to rid the world of mental and physical disability”? As if for the sake of completeness, the piece then described how “the most heinous crimes of the 20th century, the holocaust, the mass murder of the disabled, the enforced sterilisation of anyone considered inferior, all took place in the name of eugenics”. It continued: “Many of the Paralympians we’ll be celebrating in London have the same disabilities as those whose rights have been violated. But does this mean we should write off eugenics in its totality?…Should the prospect of designer babies be ignored just because of its associations with Nazism?”
The insensitivity of this pitch is mind-boggling. But could such a question be asked here?
Of course it could. Implicitly it already has been. For many years pregnant mothers have been routinely offered tests to detect conditions such as Down syndrome and spina bifida with a view to abortion. Two years ago this screening programme was beefed up with the object of eliminating more disabled children. Saving Downs, an organised group of parents of children with Down’s Syndrome, has lodged a complaint with the International Criminal Court on the basis that such programs are eugenic and an affront to the Down’s Syndrome community. The fanatics are already suggesting that not only are there the means to do away with the disabled but a duty to do so – a duty to design.
Both here and in the UK this trend is being driven not by latter-day Hitlers but by sober professors. The BBC programme in question put bioethicist John Harris up against two non-academics who had personal interests in disability issues. As it happens, Harris’ case for eugenics was fatally undermined when one of his opponents, Ian Birrell (a columnist and foreign correspondent in the UK with a disabled daughter), pointed out that the professor also supports infanticide.
What was striking about the programme was the evident bias of the BBC. Music, images, rhetoric, the prior briefing of Dr Harris — all were designed to make the audience see “the promise of eugenics”. And this was not an isolated case: a few weeks earlier the BBC showed a short segment called “Nature vs. Nurture” which looked at the dominance of black athletes at the Olympics. The piece implied that genetic cleansing is positive and that the Nazis merely distorted it. When referring to the victims of the Nazis’ eugenics policies, the extermination of hundreds of thousands of disabled people was completely ignored.
What of the broadcaster’s ethical duties in this case? Surely it has a responsibility to engage in balanced reporting and not manipulate its audience to accept one view only. Impartiality is all the more important when the issue concerns such basic questions as the right to life and the equal dignity of all human beings.
To reflect on the horrors of Nazi eugenics policies and to then advocate, under the pretext of scientific reporting, “a new eugenics, enlightened by empathy, leavened by liberty” with an identical aim of ridding the world of disabled people, is not only highly offensive to disabled people everywhere but is frankly quite frightening. Has it been so long since the Holocaust that we have already forgotten its lessons?
Disabilities are obviously not something we hope for and it may well be a “noble aim” to eradicate disability. But there is nothing noble about trying to eradicate disabled people whether before birth, after birth or by sending them to the fringes of society by failing to afford them the same rights and dignity as those who are not disabled.
As Ian Birrell quite rightly pointed out, the presumption behind this “new eugenics” as with that propagated by the Nazis, is that disabled people are inferior and that we should do all we can to eliminate them. This is not only a grotesque view but it encourages negative attitudes towards disabled people in society.
The New Zealand media too should examine themselves on their attitude to disabled persons. If the lack of coverage of the Paralympics is disappointing, the lack of investigative and balanced reporting on practices such as prenatal screening, pre- implantation diagnosis and the moves towards designer babies in trendsetting countries is ominous. Are we going to blindly follow them back to the fascism of the 1930s? As the saying goes, “those who cannot remember the past are condemned to repeat it”.
Saving Downs are a New Zealand based group of parents and siblings of people with down syndrome. They have formed in response to the New Zealand Government’s new state funded antenatal screening programme that targets and identifies unborn children with Down syndrome for selective abortion.
Midwives and general practitioners have been invited to a series of nationwide workshops in May and June 2012 to further enhance skills, knowledge and understanding in relation to antenatal screening for down syndrome and other conditions.
The down syndrome community has been excluded from participation in the workshops and they are taking this opportunity to provide their perspective on the screening programme.
They have recently produced the following resource for health professionals. For more information on Saving Downs visit their website - www.savingdowns.com.
Eleven facts for midwives, GPs and parents
- Like all people, those with Down syndrome are defined by their basic human dignity and not by their genetic makeup. They are loved and valued members of our families and communities. They make positive contributions to our society.
- Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition.
- In a recent Children’s Hospital Boston survey 99 percent of parents of children with Down syndrome reported that they loved their child, 97 percent were proud of their child, and 79 percent attributed a more positive outlook on life to their child.
- The screening pathway is non-therapeutic. It imposes more harm than benefit to a mother’s unborn child, through miscarriage and morbidity due to diagnostic testing.
- The screening pathway leads to maternal anxiety and foetal hazard. Interrupting the pregnancy has adverse mental health outcomes for the mother.
- There is no evidence that babies with down syndrome can have a better medical outcome due to screening and testing. Medical problems associated with down syndrome can be detected by routine antenatal clinical care without a diagnosis.
- For every 100 women who screen at high risk for Down syndrome, RANZCOG state that only between four and six of them will be carrying a baby with down syndrome.
- It costs around $70,000 to detect an unborn child with down syndrome.
- Before the 2010 quality improvements around 55% of all babies with Down syndrome were not born due to antenatal screening and intervention. When Denmark introduced the same “quality improvements” the impact was a further halving in births of children with Down syndrome. A similar trend here would result in around 80% of all births of children with Down syndrome being prevented. Many people recognise that this is eugenics.
- The New Zealand Down Syndrome Association does not consider down syndrome in itself a reason for termination of a pregnancy.
- People with down syndrome and their families are best placed to provide parents with a diagnosis with accurate information and knowledge based in direct experience.
Ethics and the Hippocratic Oath
The original Hippocratic Oath has been updated by the Declaration of Geneva. It has been adopted by the World Medical Association and reflects the dedication of medical professionals to the humanitarian goals of medical practice. It includes:
- A commitment to the service of humanity. A duty to act with conscience and dignity.
- A commitment to not allow a disability to intervene between ones duty and their patients. Upholding the utmost respect for human life.
Many people in the down syndrome community consider the screening programme to be eugenics, as it targets this community for birth prevention based on their biological difference. Such practices offend medical ethics, human dignity and the basic principles of humanitarian justice and international law.
Midwives and general practitioners have a statutory right to refuse to participate in antenatal screening for disabilities under Section 174 of the Health Practitioners Competence Assurance Act 2003. This provides for conscientious objection in relation to any reproductive health service.
Loving Every Child: Defying Eugenics
It is one of life’s great paradoxes that the most gentle, loving and enduring amongst us have always been the target of the eugenicists – those with down syndrome: the very people who embrace those defining human qualities of unconditional love and compassion.
The down syndrome community has witnessed with grave concern the return of eugenics in New Zealand under the guise of prenatal health care, reproductive choice and human rights. It is inflicting serious harm on our unborn children, parents and the down syndrome community.
In response to this Family Life International NZ and SavingDowns are holding a one-day seminar “Loving Every Child: Defying Eugenics”. This will be held in Auckland on the 4th August 2012 at the Columba centre. This will be an opportunity for people to learn about the history of eugenics and its recent emergence into New Zealand society. The seminar will be looking to raise awareness around the issue and to map out a response towards restoring respect and dignity towards the down syndrome community. Midwives and general practitioners have a commitment to the service of humanity and are particularly welcome to attend and participate in this seminar.
Please contact Mike Sullivan at email@example.com for further information.
Cross posted from the Culture Vulture.
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.