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

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. The Project 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.comhttp://www.prideh-gen.custodix.com

4. The Project PRIDEHINFOGENE PRIDEH-GEN

5. INFOGENE 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

6. INFOGENE Objectives 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

7. PRIDEH 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 http://www.prideh.custodix.com

8. What is a Take-Up project ? 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

9. Take-up Focus 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)

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

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

12. Privacy Enhancing Techniques (P.E.T.s) 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. APPROACH 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 No Information Exchange P.E.T.s

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

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

15. Genomic Data Privacy 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)

16. PRIDEH-GEN 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)

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 brecht.claerhout@custodix.com  www.prideh-gen.custodix.com www.prideh-gen.custodix.com

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