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Disabled People Speak on The New Genetics

Disabled Peoples International (DPI) is a human rights organization committed to the protection of disabled people's rights and the promotion of their full and equal participation in society. Established in 1981, DPI is represented through active membership of national organizations of disabled people in over 130 countries, including 29 in the European region (DPI Europe). This policy statement was developed through a project on bioethical issues and initiated in accordance with DPI Europe's Action Plan 1999-2002, adopted in Syracuse, Italy.

Ten Key Demands

DPI Europe has become greatly concerned about the threat to our human rights posed by developments in human genetics research and practice. In the meantime, our voice struggles to be heard in the bioethical and scientific debates. Recognizing that advances in human genetics and medical-based quality of life decisions raise serious ethical issues for both disabled and non-disabled people, issues which must be considered within the framework of the essential enduring diversity of humankind;

We demand that:

The use of new human genetic discoveries, techniques and practices are strictly regulated to avoid discrimination and protect fully, and in all circumstances, the human rights of disabled people;

Genetic counselling is non-directive, rights based, widely and freely available and reflects the real experience of disability;

Parents are not formally or informally pressured to take pre-natal tests or undergo "therapeutic" terminations;

All children are welcomed into the world and provided with appropriate levels of social, practical and financial support;

Human diversity is celebrated and not eliminated by discriminatory assessments of quality of life, which may lead to euthanasia, infanticide and death as a result of non-intervention;

Organizations of disabled people are represented on all advisory and regulatory bodies dealing with human genetics;

Legislation is amended to bring an end to discrimination on the grounds of impairment as exceptional legal grounds for abortion;

There is a comprehensive program of training for all health and social care professionals from a disability equality perspective;

As the human genome is the common property of humanity, no patents are allowed on genetic material;

The human rights of disabled people who are unable to consent are not violated through medical interventions.

INSERT: THE DPI 2004 WORLD SUMMIT: DIVERSITY WITHIN WILL BE HELD IN WINNIPEG, MANITOBA SEPTEMBER 8-10 2004. For more information, visit www.dpi.org/summit2004