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Contenido archivado el 2024-05-24

PRIvacy Enhancement in Data Management in E-Health for GENomic medicine

Objetivo

Genomic medicine encompasses predictive and diagnostic genetic testing. Information derived from genetic testing will also help in selecting or fashioning the best drug or other therapeutic regimen for a patient, e.g. one that maximizes efficacy but minimizes side effects (what is called pharmacogenetics). Due to the highly sensitive nature of today's electronic interchange of individually identifiable genetic data serious concerns about privacy have been raised. An advantageous approach for protecting privacy is based on so-called Privacy Enhancing Techniques (P.E.T.s) which are methods that prevent the unauthorised or inappropriate (direct or indirect) establishment of a person's identity. CUSTODIX provides pseudonymisation trust services and through the PRIDEH project wants to encourage the take-up of such activities. Genomic medicine deals with very sensitive data and therefore privacy is ever so important in that field.

Objectives:
The main aim of this cluster project is to establish co-operation between two projects (PRIDEH and INFOGENE) and two fields (e-Security / PETs and Medical Genomics) as to maximise interaction and obtain mutual benefits. Regarding privacy protection and genomic medicine in particular, it is important to recognise and further identify the domain-specific problems. A better understanding of these characteristic issues will lead to more specific and better-adapted privacy protection measures.

Work description:
INFOGENE (Interactive platform For personal Genetic profile construction, decision and support) (IST-2001-33402) will link, through networks, Personal Digital Assistants (PDAs) to a multilingual web-based system in order to guide users in registering their personal genetic profile and family disease history. The system will give its users confidential personal advice and easy-to-understand, but quality-assessed knowledge, pertaining to their individual health conditions. PRIDEH (Privacy Enhancement in Data Management in E-Health)(IST-2001-32647) is an accompanying measure that concentrates on Privacy Enhancing Techniques (P.E.T.s)-based services. CUSTODIX is the co-ordinator of the PRIDEH project and has implemented Batch and Interactive Pseudonymisation Services. Through the use of such PET-based services (pseudonymisation) personal health data can be much better protected from unauthorised use or disclosure. This project proposal will bring together the two leading partners of both projects: VITAMIB for INFOGENE and CUSTODIX for PRIDEH in order to produce guidelines for the protection of privacy in the context of genetics related data exchange. The guidelines will be the synthesis of an analysis conducted by both partners viewed from their domain specific perspectives: the domain of Privacy Enhancing Techniques and the domain of Genomics.

Milestones:
The project will result in added value for both projects. PRIDEH will gain a better understanding in the specific privacy protection requirements in genomic medicine. INFOGENE, which is developing E-Services through its INFOGENE server, will gain a better understanding of privacy protection solutions for E-Health. The knowledge gathered by both parties will be made publicly available in guidelines.

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Coordinador

CUSTODIX
Aportación de la UE
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Dirección
VERLORENBROODSTRAAT 120 BUS 14
9820 MERELBEKE
Bélgica

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Participantes (1)

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