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International Federation for Spina Bifida and Hydrocephalus
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International Federation for Spina Bifida and Hydrocephalus - Homepage

Introduction

Standard rules for people with disabilities

EDF Madrid Resolution

Prenatal diagnosis and termination of pregnancy

Literature

 

Human rights

Human rights and prenatal diagnosis

Perfection should not be a goal. Diversity enriches society. Everybody has talents, skills, weaknesses and has the right to live. All have equal rights.

Generally accepted Conventions and Resolutions such as “The Nuremberg Treaty,” “The Human Rights Bill,” “The Right of the Child Bill” and “Standard Rules on the Equalization of Opportunities for Persons with Disabilities” safeguard the right to live and to be different.

Why discuss issues which everybody agrees on?

In many countries most unborn children with Hydrocephalus and/or Spina Bifida are detected during pregnancy by an ultrasound scan. Some people openly state that people with a disability should not exist and that the “problem” can be solved by termination of pregnancy.

During the past seven years IF has been studying this matter in close consultation with members and assisted by prominent experts. This started an internal debate. Even now the medical world still speaks about Spina Bifida and Hydrocephalus in terms of ‘”useless existence” and “lifelong unbearable pain,” and “treatment would even be unwanted and dangerous.”

IF widened its own discussion to include all disabilities. IF supports this because unborn children with other disabilities - for example Down Syndrome and Cleft palate – are also detected during pregnancy and the medical profession also proposes termination of pregnancy in these cases.

If parents do not seek out more correct information themselves, most (90%) of them follow the doctor’s advice. This is not necessarily a free choice because - if an impairment is detected – termination of pregnancy is often offered as a standard procedure. Parents are intimidated by the negative prognosis where the life of people with impairments is reduced to its medical limits. 
 
Experience shows that when future parents get non-judgmental counselling with access to the full range of issues relating to Spina Bifida and Hydrocephalus, most are willing to fight for a optimal quality of life for their child. Two examples: in the United States some parents try to improve the medical outcome of their unborn child with Spina Bifida by foetal surgery in the womb. In Queensland correct counselling, including correct and balanced information, proves that the majority of the parents choose to continue the pregnancy.

In more and more countries abortion is legally and socially acceptable, and in many countries there is no time limit on legal abortion when the unborn child has an impairment. Recently in the Netherlands in the case of Molenaars and last year Perruche in France,  Court decisions allowed  “wrongful life”  claims,  compensation being given to the person with a disability because he lives.

The right not to live has been accepted but the right to live seems to be non-existent for the unborn child with a disability.  The foetus has no legal status. 
 
Consideration should be given to provide protection for the unborn child under the UN Standard Rules, and the convention of the right of the child.
Compensation awards in recent “wrongful life” claims make gynaecologists unsure and overactive in tests for prenatal diagnosis to detect all disabilities and propose abortion.

IF has major objections to this development and made Press Statements calling on politicians to amend legislation.  IF promotes correct imaging of disability in the media on national and international levels

At the 12th International Conference for Spina Bifida and Hydrocephalus of IF in Toulouse in 2000 a resolution emphasised the right to live of people with Spina Bifida and/or Hydrocephalus. In 2002 this resolution was completed with the following call for action by IF members:

1. Create and promote an International Knowledge Centre to provide access to the full range of issues related to Spina Bifida and Hydrocephalus.
2. Promote research into the causes of Neural Tube Defects and in particular the role folate plays.
3. Monitor the message promoted in prevention campaigns to safeguard the dignity of people with a disability.
4. Promote awareness of the effects of discriminatory practices both in the language used by professionals and the practice of administering medical insurance.
5. Organise awareness raising activities so that more people are aware of Spina Bifida and Hydrocephalus.

Based on the resolution ‘the right to be different’ IF worked together with the Human Right Committee of the European Disability forum (EDF) on a European resolution on Prenatal Diagnosis and Termination of Pregnancy for all Disabilities. This resolution was unanimously accepted at the EDF General Meeting in Athens in 2003. The IF resolution was presented and accepted at the General Meeting of the American Association for Spina Bifida.

IF is preparing a statement on late termination on pregnancy directed at the UN. IF expects that in this specific discussion the new European Member States will have a strong impact because of their religious backgrounds, and should therefore be actively involved.

Supported by the European Union (budget line ‘Youth, Civil Society, Communication’), IF has worked out a project to continue and monitor the ethical discussion on prenatal selection in all European countries and specifically to initiate the discussion in the new European Member States, involving the spina bifida and/or hydrocephalus user groups network towards legislative reflection and action. This project will run from May 2004 till August 2005 and will map the actual political and ethical situation in the European countries, including the new Member States, map all actors and factors in the ethical discussion and select examples of good practice on national and European levels.

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