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Over the last decade genetics and bio technology have greatly increased the KNOWLEDGE of the structure and function of human genes and their relation towards health, disease and behaviour.
This knowledge has IMPLICATIONS for society at large, for officials working in health and healthcare and for (potential) patients and their family.
Society
faces controversial topics such as human embryonic stem cell research, therapeutic and reproductive cloning, genetic modified foods, commercialisation of genomic data, equity of genetic benefits, pre implementation diagnosis.
Officials in healthcare
face new paradigms such as new options for health maintenance, individualised predictive medicin and genetic treatment.
Patients and their families
face dilemmas regarding childwish and lifestyle, to know or not to know about genetic risks.
These implications also raise ethical, legal, psycho social and cultural questions and involve RESPONSIBILITIES for society, politicians, governments, healthcare workers, scientists and individuals.
These responsibilities require COMPETENCES from all parties involved to be able to understand the implications and to be able
to find answers on imposing questions,
to find solutions for the problems at stage and
to determine policy,
to have opinions and vision on the major political themes in force.
These competences include
knowledge, skills, appropriate attitude.
To exercise these competences MAJOR EFFORTS are needed from society and more specifically from governments, to empower citizens, (potential) patients and NGOs and enable them to address the questions and problems, the chances and opportunities at stake.
This include
- population based information campaigns
- public dialogue & societal debate
- structural and mandatory school education and inclusion of genetics in all curricula
- training of non genetic healthcare professionals.
Governments
have to take appropriate measures to create the facilities for the availability of, and access to, reliable, up-to-date, well balanced and target group tailored INFORMATION.
This could be achieved by centers for clinical and community genetics, genetic resource centers (NL), genetic knowledge parks (UK),
Citizens and (potential) patients
must be able
- to identify bottlenecks in healthcare,
- to signal discrimination and stigmatisation,
- to exercise their rights
- to fight/cater for their interests.
This is also, and even specifically, valid for individuals belonging to minority groups or involved in rare disorders.
The media, the scientific and industrial communities are important stakeholders who could contribute to the communication of genetic and biotech knowledge towards society whilst acknowledging the international norms of human rights, human dignity and freedom.
The political, ethical and legal community
should see after a well considered legal framework that recognises that the human genome is part of the common heritage of humanity and that strengthens citizens' and patients' rights.
Key questions of life and death
and the promise (or curse?) of genetics and bio genetic technology to improve the quality of life (or endanger its very existence) can only be addressed by a well informed, well educated, well prepared society and by well empowered patient and parent organisations.
IGA-statement, Vienna, Austria, 2002.
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