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Contenido archivado el 2024-04-30

Genetics and public and professional policy in Europe

Objetivo



Problem:
During the past decade, there have been tremendous advances in molecular technology from the Human Genome programme. This emergence of genetic technology is accompanied by increasing concern regarding the use and misuse of genetic information in society. It is the duty of professionals in the field of human genetics to anticipate the potential applications of their discoveries, to transfer their knowledge as fast as possible when a benefit may by expected for the community, to provide guidelines and recommendations to help the less experienced professionals minimize misuses and misinterpretations.

Objective:
The overall objective of this proposal is to issue policy statements, guidelines and reports on ongoing topics of concern in the field of Human Genetics. These documents will contribute to the debate among the community and will serve as references for policy makers in European countries and at the European Union level. The topics which will be addressed are those that impact on professional practice and on the relationship between human geneticists and the public. Four topics for issuing a report containing both statements and guidelines, have been selected. These are:
Genetic screening: technical and ethical issues, including commercialization of genetic tests Insurance and employement: technical, social and ethical issues Guidelines for the provision of genetic services in Europe Data storage and DNA banking: quality issues, confidentiality, informed consent
The Team:
The European geneticists are organized through a scientific society named the European Society of Human Genetics (ESHG) which comprises more than a thousand members from all the European countries. The ESHG has established the "Public and Professional Policy Committee" (PPPC) which is the applicant of the present project. All partners are senior academics, holding substancial grants in their own country. The majority have successfully completed earlier EU funded projects. The team is multidisciplinary, with molecular biologists, medical geneticists, cytogeneticists and genetic counsellors.

Method:
The reports will be produced as a result of working parties organised as follows: The EuroGAPPP partners will meet once to define the workplan and identify the national experts to be invited. These experts will be asked to prepare their answers to defined questions which will be debated during the workshop. The EuroGAPPP partners will then be in charge of the first draft of the report, following the workshop. This draft will be sent electronically to all the ESHG members for comments. A final report will be issued and published in an appropriate peerreviewed journal.
This scheme has been operated successfully in two previously funded BIOMED concerted-actions (EUCROMIC et CAGSE).

Benefits to the EU:
The proposed shared-cost action will provide a sound empirical base upon which to develop consensus policies in the field of human genetics biotechnology, respecting both the state of art and the values in different Member states.

Ámbito científico (EuroSciVoc)

CORDIS clasifica los proyectos con EuroSciVoc, una taxonomía plurilingüe de ámbitos científicos, mediante un proceso semiautomático basado en técnicas de procesamiento del lenguaje natural. Véas: El vocabulario científico europeo..

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Programa(s)

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Coordinador

Institut National de la Santé et de la Recherche Médicale
Aportación de la UE
Sin datos
Dirección
Avenue Paul Vaillant-Couturier
94807 Villejuif
Francia

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Coste total

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Participantes (2)

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