DescriptionGenetic services in Europe, while based on high quality scientific
know-how, suffer from an intolerably high level of technical errors
and poor reporting, caused by a lack of structuring and complementarity
at the European level and the absence of a common European objective
to provide quality services to all its consumers now and in the
future. Diverse and heterogeneous quality schemes, lack of reference
systems and differing Member State (MS) regulations, have added
to the overall disorganization and fragmentation of services.
Nevertheless, genetic services face an ever-increasing number of
requests for testing, while widespread susceptibility testing and
pharmacogenetic tests are lurking on the horizon.
With the active participation of stakeholders, the proposed EuroGentest
NoE (Network of Excellence) intends to structure, harmonize and
improve the overall quality of these services, while paying substantial
attention to issues resulting from testing including legal, health
policies and health economic impact, IPR (Intellectual Property
Rights), ethical and social questions: confidentiality, informed
consent, employment and insurance.
The EuroGentest NoE will improve the organization and harmonization
of external quality assessment/assurance schemes, facilitate the
development of guidelines and support the accreditation/certification
of the genetic services. In addition, collaboration between academic
centers and the private sector on technology development and the
validation of genetic tests, should generate more rapid translation
and accurate, more economical and overall better testing technologies.
A quality website, with all relevant information will be developed
and made accessible to experts and customers.
With the help of Parent and Patient Support Groups, the EuroGentest
NoE will collect quality tools for education of different categories
of stakeholders.Training for personnel both from within and from
outside the EU will be provided.
The already substantial number of female scientists involved in
the EuroGentest NoE, will be further increased and a female scientist
will assume responsibility of supervising gender issues.
Finally, the EuroGentest NoE aims at becoming a model for similar
initiatives in developing countries and will provide appropriate
support for their development.
The proposed program will create a leading European Network of Excellence
based on the four principles of medical ethics.