Saul Albert on 21 Dec 2000 14:30:01 -0000 |
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[Nettime-bold] Disabled People Speak on the New Genetics |
Dear Nettimers, Disabled People's International (DPI) have recently published thier position statement on biotech. On Tuesday the UK house of commons decided that farming human embryos for stem cell research was a good idea, despite the fact that (less cost effectives) alternative stem cell sources exist in the use of umbilical fluid and bone marrow. This has yet to become law and may well be amended in the house of Lords...we'll see. The debate in the commons was full of bleeding heart appeals on behalf of the poor little disabled people who will be condemned to suffer for the rest of their pathetic lives without this great scientific advance. Blair backed the motion fully with the worrying conviction that "there should be no barriers to scientific advance, once we have the technology we can worry about regulation". The DPI report is interesting because it comes from the people in whose name these "advances" are being bulldozed into legislation by the biotech industry and industry financed lobby groups. I've attached thier list of 10 demands because the report seemed to long for a post. The full report is available in English, Spanish and Italian on their website: http://www.dpieurope.org/htm/bioethics/dpsngmenu.htm If anyone else has any good links on this subject I'd love to know about them. Cheers, Saul. _________________________________________________________________ Disabled People Speak on the New Genetics Disabled Peoples International (DPI) is a human rights organisation 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 organisations of disabled people in over 130 countries, including 29 in the European region (DPI Europe). DPI Europe has become greatly concerned about the threat to our human rights posed by developments in human genetics research and practice. In the mean-time, our voice struggles to be heard in the bioethical and scientific debates. Recognising 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: 1). 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, 2). genetic counselling is non-directive, rights based, widely and freely available and reflects the real experience of disability, 3). parents are not formally or informally pressured to take pre-natal tests or undergo "therapeutic" terminations, 4). all children are welcomed into the world and provided with appropriate levels of social, practical and financial support, 5). 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, 6). organisations of disabled people are represented on all advisory and regulatory bodies dealing with human genetics, 7). legislation is amended to bring an end to discrimination on the grounds of impairment as exceptional legal grounds for abortion, 8). there is a comprehensive program of training for all health and social care professionals from a disability equality perspective, 9). as the human genome is the common property of humanity, no patents are allowed on genetic material, 10). the human rights of disabled people who are unable to consent are not violated through medical interventions. DPI Europe © November 2000 _______________________________________________ Nettime-bold mailing list Nettime-bold@nettime.org http://www.nettime.org/cgi-bin/mailman/listinfo/nettime-bold