Screening for Down syndrome – A community perspective

Screening for Down syndrome – A community perspective

Saving Downs are a New Zealand based group of parents and siblings of people with Down syndrome. Thye have formed in response to the New Zealand Government’s new state funded eugenic antenatal screening programme that targets and identifies unborn children with Down syndrome for selective abortion.   They have recently produced the following resource for Health Professionals.

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 & other conditions.

The Down syndrome community has been excluded from participation in the workshops and we are taking this opportunity to provide our perspective on the screening programme.

11 facts for Midwives, GPs and Parents to know; see below

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.

2.Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition.

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.

4.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.

5.The screening pathway leads to maternal anxiety and foetal hazard. Interrupting the pregnancy has adverse mental health outcomes for the mother.

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.

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.

8.It costs around $70,000 to detect an unborn child with Down syndrome.

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 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.

10.The New Zealand Down Syndrome Association does not consider Down syndrome in itself a reason for termination of a pregnancy.

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 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 mike.b.sullivan@xtra.co.nz for further information.

Comments

    • says

      We are struggling to understand what your point is here Faye. I’m not sure the Down Syndrome Association would appreciate the joke though.

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