<nettime> Disabled People Speak on the New Genetics

["Saul Albert" <saul.albert@virgin.net>]

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

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