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CORDIS - Resultados de investigaciones de la UE
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Contenido archivado el 2024-05-24

INteractive platform FOr personal GENEtic profile construction, decision support

Objetivo

INFOGENE will design, implement and evaluate a set of information technology (IT) components communicating through Internet to enable citizens to manage their lifestyle in the light of modern genetic knowledge. Personal digital assistants will be linked to a multilingual web-based system through wireless or wired networks in order to guide users in creating their personal genetic profile and family disease history. Based on this, is, users receive confidential relevant advice. Users can also access easy-to-understand, quality-assured knowledge on the aspects of genetics that impact on their own life including: risk factors, diseases with a genetic determinism (e.g. some cancers and cardio-vascular troubles), reproduction behaviour, genetic testing, ethical guidelines, and a directory for medical and social assistance in their area if needed. Emphasis is put on the consensus of professionals on disseminated genetic information and on creating a business model for the long-term support and evolution of INFOGENE as a strategic European genetics resource.

Objectives:
Each week sees new discoveries in genetic, genetic engineering is booming, genetic influence is established for an increasing number of life-threatening diseases, and gene therapy is nearing clinical practice. Citizens are concerned about the impact of genetically engineered products on humans and their environment: Faced with these increasing social and medical challenges, citizens cannot find answers to questions of primary concern to them. Most are unaware of the impact of genetics on their daily life; those who are aware are confronted with information that is difficult to understand. But in essence, genetics is the paradigm of differences between individuals; citizens thus require.

Work description:
To fulfil the citizens, patients and doctors needs for genetic knowledge having direct impact on daily life, the INFOGENE project will design, implement and evaluate the INFOGENE SERVER offering two modes of use :
- a public genetic web-kiosk, hereafter called Gene Kiosk;
- an intelligent personal advisor, hereafter called Info Genie.
Gene Kiosk is an authoritative public web site, which is regularly updated by an editorial board of geneticists and healthcare professionals using a web-based collaborative platform (XML/DTD), hereafter called Virtual Studio (Iniogene Server back door). Users directly accessing the Gene Kiosk find information on genetic testing, genetic diseases, family factors, predictive genetics. There is also a directory to provide guidance if they wish to locate a nearby genetic consultant or laboratory, or find relevant associations dedicated to people suffering from inherited or acquired genetic diseases or disabilities. Info Genie is a software application implemented on a PC or (preferably) on a "personal digital assistant" or pocket computer. Info Genie accesses a genetic guidelines advisory module of the INFOGENE SERVER, hereafter called Gene Advisor, and which is a state-of-the-art medical decision support, which automatically analyses information provided by users according to pre-defined guidelines coded by geneticists. The usual scenario is that anybody can enter into his Info Genie requested relevant personal information such as: sex, birth date, ethnic origin, information on his parents, relatives and progeny, diseases, diet, and any personal features. Communications between the Info Genie and the Gene Advisor are based on multimedia documents. Emphasis is put on the consensus of the professionals on the disseminated genetic information and the formulation of a business model for the long term support and evolution of such targeted genetic web-based resources.

Milestones:
By the end of the project, the INFOGENE server and the personal Info Genie, the Gene Kiosk, and Gene Advisor will be self sufficient and delivered to the community of geneticists for further completion and updating of the content using the Virtual Studio module. The INFOGENE Server will be enacted by a dynamic web interface or Front Door managing all communications and which offers additional services such as "News", "Dictionary", "Forum", "Directory". It is designed to be a multilingual service.

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Coordinador

CLINIQUE UNIVERSITAIRE SAINT-LUC
Aportación de la UE
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Dirección
AVENUE HIPPOCRATE 10
1200 BRUXELLES
Bélgica

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