Aim and Objectives
Aim
The aim of the project is to create a democratic, independent
alliance of national umbrella groups for all genetic conditions
and of European disease specific groups, able to voice and
articulate a clear, patient focussed perspective on genetic
and biotech. issues and its ethical, legal, psycho social
and cultural implications in the political, scientific and
industry arena.
A genetic condition is defined as a disease or anomaly of
which the origin and /or treatment is related to genetics
and/or biotechnology.
For many reasons, although probably not correct from a biological
point of view, the acquired birth disorders are regarded as
belonging to the target group. .
Operational objectives
Operational objectives are:
| a. |
representation of the interests of patients and their
families in the public/political dialogue about developments
in science |
| b. |
stimulation of dialogue, opinion making and decision
making |
| c. |
fostering of public awareness towards the links between
genetics/biotechnology, human health and disease |
| d. |
promotion of research into causes, prevention and treatment
for genetic disease |
| e. |
capitalisation on new and expected knowledge for the
benefit of patients and their families |
| f. |
combat unfair discrimination based on individual or
family genetics |
In a more general sense the project strives at establishing
a paradigm shift in the attitude and communication of patients
and citizens in general.
This means a change
| from: |
to: |
| unconscious adaptation |
conscious anticipation |
| top down |
bottom up |
| submissive citizen |
critical democratic citizen |
| paternalistic |
empowering |
| one way communication |
dialogue & participation |
| transfer of knowledge |
practice e-related & competence
building |
| public understanding |
awareness & appreciation |
| economic & utilitarian |
value pluralism |
| value imposition |
value communication & reflective judgment |
|
