Privacyprotectionforclinicalandgenomicdata Theuseofprivacy.pdfVIP

International Journal of Medical Informatics (2005) 74, 257—265 Privacy protection for clinical and genomic data The use of privacy-enhancing techniques in medicine a b,∗ B. Claerhout , G.J.E. DeMoor a CUSTODIX nv, Merelbeke, Belgium b Department of Medical Informatics and Statistics, University Hospital Gent, Building 3, 5th floor, De Pintelaan 185, 9000 Gent, Belgium Received 7 November 2003 ;accepted 11 March 2004 KEYWORDS Summary Privacy includes the right of individuals and organisations to determine Genomic medicine for themselves when, how and to what extent information about them is communi- Confidentiality cated to others. The growing need of managing large amounts of both clinical and Privacy-enhancing genetic data raises important legal and ethical challenges. This paper introduces techniques some of the privacy-protection problems related to classical and genomic medicine, Trusted third parties and highlights the relevance of trusted third parties and of privacy-enhancing tech- niques (PETs) in the context of data collection, e.g., for research. Practical ap- Pseudonymisation proaches based on two pseudonymisation models, for both batch data collection and interactive data storage, are presented. The actual application of the described techniques today proves the possible ben- efits for medicine that innovative privacy-enhancing techniques can provide. Tech- nical PET solutions can unlock valuable data sources, otherwise not available. © 2004 Published b