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2002-09-20

PRIDEH-GEN. IST-2001-38719. PRIVACY ENHANCEMENT IN DATA MANAGEMENT IN E-HEALTH for GENomic Medicine. 2002-09-20. The Consortium. Custodix N.V., Belgium (project co-ordinator) Trust Service Provider (Privacy Enhancing Technologies). VITAMIB SARL, France

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2002-09-20

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  1. PRIDEH-GEN IST-2001-38719 PRIVACY ENHANCEMENT IN DATA MANAGEMENT IN E-HEALTH for GENomic Medicine 2002-09-20

  2. The Consortium • Custodix N.V., Belgium (project co-ordinator) • Trust Service Provider (Privacy Enhancing Technologies) • VITAMIB SARL, France • “Dot-Com” Research Organisation with experience in Genetic Medicine

  3. PRIDEH-GEN : PRIvacy enhancement in Data management in E-Health in Genetic Medicine IST-2001-38719 Starting Date: 1.09.2002 Duration 18 months Efforts:21 Manmonths Type of project: Accompanying measure url= http://www.prideh-gen.custodix.com The Project

  4. The Project PRIDEH INFOGENE PRIDEH-GEN

  5. INteractive platform FOr personal GENEtic profile construction, decision support IST-2001-32647 Starting Date: 1.10.2001 Duration 36 months Research http://infogene.vitamib.com INFOGENE

  6. INFOGENE server GeneKiosk: public genetic web kiosk InfoGenie: intelligent personal advisor GeneStudio: design & verify user interaction Towards citizens and healthcare professionals Genetic risk advice / Knowledge INFOGENE Objectives

  7. PRIDEH: PRIvacy enhancement in Data management in E-Health IST-2001-32647 Starting Date: 1.09.2001 Duration 24 months Efforts: 62 Manmonths Type of project: Take-up (Trials) url= http://www.prideh.custodix.com PRIDEH

  8. Builds on services/products already available Take up by the market is perceived as slow Better acceptance and take-up through the project Pre Take-Up Take-Up Increased Use & Deployment What is a Take-Up project ?

  9. Lowering of threshold for deployment of PETs Highlight the added value of PETs Information unblocking Privacy protection, legal added value Trust in TTP based PET service provision through QA Legal framework (legal experts) Take-up Focus

  10. First order identifiability Direct linkage to nominative values. Second order identifiability Information hidden in data records. Correlation between data records. Degrees of Identifiability

  11. Role of PET Privacy Protection Legitimate Processing of Sensitive Information e-Privacy Enhancing Techniques

  12. Privacy Enhancing Techniques (P.E.T.s) No Information Exchange P.E.T.s APPROACH Prohibiting creators and maintainers of information from disclosing it to inappropriate parties. Preventing the unauthorized or inappropriate (direct or indirect) establishment of a person’s or an organization’s identity. • E-Privacy includes the right of individuals and organisations to determine for themselves when, how and to what extent information about them is communicated to others • Examples of P.E.T.s: Anonymisation, Pseudonymisation, Controlled Database Pollution, Proxy-services and Privacy Enhanced Intelligent Software Agents

  13. Privacy Processing Engine Sources Processing is based on Cryptographic techniques PPE Registers No storage All traffic between entitiesis encrypted & entities authenticate each other

  14. The Interactive Data Collection Model Secure HTTP Server Pseudonymisation Server HTTP Server Pseudonymisation TTP Register CUSTODIX Sources

  15. New Issues: determine degree of identifiability. (Infogene-Vitamib, Prof. Dr. G. Brugal) Advanced Knowledge Discovery technology (A.I., pattern detection, neural networks, self learning systems, intelligent agents) Intelligent PETs (PRIDEH-Custodix, Prof. Dr. G. De Moor) Genomic Data Privacy

  16. WP 1: Management and co-ordination WP 2: Inventory of the Techniques D 2.1: Inventory Report on Privacy Enhancing Techniques (Sept. 2003). By Custodix (Belgium), PRIDEH WP 3: Inventory of the Needs D 3.1: Inventory of the Privacy Protection Needs (Sept. 2003) By INFOGENE, Vitamib (France) WP 4: Production of the Guidelines & Dissemination. D 4.1: Privacy Protection Guidelines for Genomic Medicine (Dec 2003) PRIDEH-GEN

  17. Contact Address • CUSTODIX (Project Co-ordination) • Phone: +32 9 210 78 90 • Fax: + 32 9 211 09 99 • E-mail: brecht.claerhout@custodix.com • www.prideh-gen.custodix.com

  18. Thanks for listening With privacy in mind ....

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