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Report to the International Genetic Alliance on the development of a UN Convention on the Rights of the Disabled
This report is prepared by John Forman, Executive Director on the New Zealand Organisation for Rare Disorders, for the information of delegates to the International Genetic Alliance meeting, Lyon, April 2005.
More than three years ago the United Nations started the process of developing a convention on the rights of disabled people, and a series of meetings have been held at the UN with major input from disability groups from around the world.
Disabled Peoples International and Inclusion International are two of the major disability groups leading the many groups bringing the disability sector´s input.
The topics of their discussion and items brought forward for consideration by the UN, indicate significant progress in furthering the rights of disabled people around the world, and the disability sector should be praised for the energy, commitment and progress made on many fronts towards rights and equality.
However there is one area of debate that impinges directly on the interests of those at risk of inherited diseases and significant disability in their family. This is the topic of Prevention. In the convention forums the topic of Prevention has been discussed under the heading of Right to Life, in Article 8.
Many of the arguments put forward by DPI, II and other groups at the UN committee discussions, have sought to restrict or prohibit prevention strategies. The positions these groups have adopted have reflected the often intense and narrow views of committed activists and academic commentators who dominate these groups.
The current draft of Article 8 - Right to Life - that is currently on the agenda, is one that is not of great concern. It reads:
"that States parties would take all measures necessary to ensure the enjoyment of this right by persons with disabilities on an equal basis with others. An additional article would recognize the particular vulnerability of persons with disabilities in situations of risk and the need for States to take all feasible measures for their protection".
This appears innocuous enough, but in separate commentary one of the UN Ambassadors working on this convention spoke of the possibility that:
“depending on the negotiations´ outcome, governments might be asked to prevent the abortion of a foetus……solely on the grounds that it had a disability.”
He was further quoted as saying the discussion was not yet resolved, and it would be one of the most difficult issues.
Whatever the views of individuals or groups about the issue of abortion because of disability, or other prevention measures such as pre-implantation genetic diagnosis, it should be a matter of great concern to us that the rights and interests of parents and families are being debated in this forum, with possible restrictive implications for us, without us having a place at the table.
Websites that contain some detail about the Convention are:
Disabled Persons´ International:
http://www.dpi.org/en/resources/topics/topics-convention.htm
Inclusion International:
http://project.tomekklas.com/en/index.php?section=priority&show=63
United Nations Convention page:
http://www.un.org/esa/socdev/enable/rights/adhoccom.htm
Recommendation:
That this meeting endorses an approach by the Officers of the International Genetic Alliance to the appropriate bodies (the special committeeUN itself and perhaps also the International Bioethics Committee of UNESCO) to seek discussion on the draft Convention on the Rights of Disabled People:
1. to ensure stakeholder representation of parents and families through our Alliance and other appropriately representative groups, in discussions that may impact on our rights and interests,
2. to reinforce that the ability to have control over the incidence and severity of disease and disability in a family, is a right held by many families in many countries, and one that is highly valued by a great many families, 3. that a well established ethical standard in many countries allows the interests of parents, in particular the mother, to predominate over the interests of a foetus that has not yet been born,
4. to emphasise that is not ethical to impose rules that are judgmental and directive about the actions that others may or may not take in relation to the health and disability characteristics of their family.
John Forman
6 April 2005
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