down sydrome new zealand Screening for down syndrome – A community perspective

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
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  1. 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.
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  2. Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition.
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  3. 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.
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  4. The screening pathway is non-therapeuticIt imposes more harm than benefit to a mother’s unborn child, through miscarriage and morbidity due to diagnostic testing.
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  5. The screening pathway leads to maternal anxiety and foetal hazardInterrupting the pregnancy has adverse mental health outcomes for the mother.
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  6. 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.
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  7. 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.
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  8. It costs around $70,000 to detect an unborn child with down syndrome.
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  9. 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 syndromeA 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.
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  10. The New Zealand Down Syndrome Association does not consider down syndrome in itself a reason for termination of a pregnancy.
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  11. 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 GenevaIt 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 eugenicsas 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 mike.b.sullivan@xtra.co.nz for further information.

I swear by Apollo, the healer

On August 17, 2011, in Blog, by Alisdair

hippocratic oath new zealand I swear by Apollo, the healer

Cross posted from Michael Cook at Mercatornet.

Year after year doctors are ranked among the most trusted professions. In the UK, they have been top-ranked for 25 years running. One reason for this must surely be the prestige of the 2400-year-old Hippocratic Oath. This is so revered that it is constantly being used as a gold standard for other professions.

In 2007 the UK’s chief scientific advisor, Sir David King, published an ethical code for scientists modelled on the oath. AFter Climategate, some American researchers called for an oath for climatologists  (“I vow to always advise against any intervention into the functioning of Earth systems that I believe might harm humanity, the biosphere…”). An oath for software engineers has been mooted (first, do no malware…). And in the wake of the media scandal in Britain,columnist George Monbiot suggested a Hippocratic Oath for journalists (“ We will not curry favour with politicians, businesses or other dominant groups…”).

However, before other professions rush off to draft their own oaths, they ought to know something about the chequered history of the Hippocratic Oath and how effective it has been in keeping doctors on the straight and narrow.

Non-doctors commonly think that 25 centuries of the medical profession have been united in a solemn commitment to work for the welfare of their patients. Surprisingly, though, the Hippocratic Oath is a relatively recent phenomenon. It was first administered to students at the University of Wittenberg in Germany in 1508. Not until 1804 in France did it become a formal part of a graduation ceremony. And even in the 1920s in the United States only one-fifth of medical schools required it.

What made the oath popular was the disgraceful conduct of Nazi doctors. Doctors were key participants in the Nazi ideology, which some of its theorists described as “applied biology”. Doctors provided the rationale for sterilising 400,000 German citizens in the 1930s and 1940s and for the euthanasia of 200,000 mentally or physically handicapped. Some Nazi doctors helped to organise the death camps and conducted barbaric experiments upon prisoners.

After World War II there was a movement to consciously reframe medicine as a humanitarian service rather than just as a technical discipline. This gave rise to codes of medical ethics, the emergence of bioethics and photos of medical students taking the Hippocratic Oath.

However, Hippocrates would not recognise his oath if he were to attend a graduation ceremony today. Obviously some of its anachronistic features had to go. Swearing by Apollo, Asclepius, Hygieia, and Panacea is no longer binding. Hippocrates’ students were exhorted to share their goods with their master and “To look upon his children as my own brothers”. If only…

More controversially, the Greek oath contained clauses forbidding abortion and euthanasia. It was said to be the first time that killing and curing had been separated. Hippocrates was devoted only to healing his patients regardless of rank, age or sex. But both of these procedures are highly contested today. In a 1993 survey of medical oaths in the US and Canada, only 14 percent banned euthanasia, and only 8 percent abortion.

Hippocrates also took a much tougher line on sexual relations with patients. “In every house where I come I will enter only for the good of my patients, keeping myself far from all intentional ill-doing and all seduction and especially from the pleasures of love with women or with men, be they free or slaves.” Only 3 percent of US and Canadian oaths prohibited such contact.

But the contemporary oath is more than window-dressing. Physicians need to feel that their professional lives have a moral compass higher than self-interest. Furthermore, doctors know that regulations, financial incentives and public reporting are not enough to guarantee that patients receive the best possible care.

Updated oaths include clauses addressing issues like financial conflicts-of-interest, use of technology, medical error, whistle-blowing and racial discrimination. However, a survey in the Annals of Internal Medicine a few years ago indicated that doctors often ignore these guidelines. For instance, more than 90 percent agreed that doctors should report significantly impaired or incompetent colleagues – but only half did so.

A survey this year in the journal BMJ Quality and Safety found that only 80% of doctors strongly agreed that “Doctors should put patients’ welfare above the doctor’s own financial interests”. About 8% did not agree that it was “never appropriate” to have a sexual relationship with a patient.

Perhaps the point is that protocols and codes are not enough to produce ethical doctors or ethical journalists. There has to be something deeper. Hippocrates would have called it virtue. But how to make people virtuous is a problem that we still are far from solving.

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