OBJECTIVES: To introduce some of the privacy protection problems related to genomics based medicine and to highlight the relevance of Trusted Third Parties (TTPs) and of Privacy Enhancing Techniques (PETs) in the restricted context of clinical research and statistics. METHODS: Practical approaches based on two different pseudonymisation models, both for batch and interactive data collection and exchange, are described and analysed. RESULTS AND CONCLUSIONS: The growing need of managing both clinical and genetic data raises important legal and ethical challenges...
Keywords: Genomic medicine, privacy, Confidentiality, stigmatization, discrimination, TTPs, PETs, pseudonymisation
01/2003 | Methods of Information in Medicine, SchattauerOBJECTIVES: CLEF is an MRC sponsored project in the E-Science programme that aims to establish methodologies and a technical infrastructure for the next generation of integrated clinical and bioscience research. METHODS: The heart of the CLEF approach to this challenge is to design and develop a pseudonymised repository of histories of cancer patients that can be accessed by researchers...
Keywords: Electronic Health Records, data repository, pseudonymisation, Grid computing, access control
01/2005 | Methods of Information in Medicine, SchattauerBiobanks raise numerous questions concerning data protection, especially, how samples and data can be anonymized and/or pseudonymized, how the donors should be informed and whether the donors can give generalized consent...
Keywords: biobanks, data protection, personal data, informed consent, pseudonymisation
06/2007 | it Information Technology (vormals it+ti), Oldenbourg Wissenschaftsverlag