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INFOBIOMED HNPCC (DK) - Custodix (BE) Cooperation

INFOBIOMED HNPCC (DK) - Custodix (BE) Cooperation. Expertise of the partners involved. Danish Healthcare Network Provision of users with secure communications over the Internet Established and accepted by the healthcare community Danish Hereditary Non Polyposis Colon Cancer Registry

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INFOBIOMED HNPCC (DK) - Custodix (BE) Cooperation

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  1. INFOBIOMED HNPCC (DK) - Custodix (BE) Cooperation

  2. Expertise of the partners involved • Danish Healthcare Network • Provision of users with secure communications over the Internet • Established and accepted by the healthcare community • Danish Hereditary Non Polyposis Colon Cancer Registry • Established registry of molecular genetic information on HNPCC • Screening program • Migration from paper to electronic form • Custodix • Privacy protection services • Security consulting services

  3. HNPCC pilot as a concrete case for: Recommendations on ethical, legal and technical (security & privacy protection measures) aspects • To meet the design and operation of • Registries for genetically inheritable diseases • For treatment and research purposes

  4. Ethical and Legal Aspects Procedures w.r.t. Identification/Contacting/Information Exchange • What is the current consensus on the proper treatment of sensitive data, in particular: genetic and pedigree data. Overview of the appropriate European Directives • Interpretation in the context of registry systems containing genetic information • Particular issues pertaining to member state implementations

  5. Technical Aspects From the treatment viewpoint • Nominative access to identifiers generally required • Authentication and Authorisation requirements and recommendations • Fine-grained access control techniques • Flexible to accommodate changing user roles • Secure Electronic Document Interchange • Operational Procedures From a research viewpoint • Nominative access to identifiers generally not required • Promote Privacy Protection by Default (see next slide)

  6. Privacy Protection versus Classical Security Privacy “Information” “Information” Security Security TrustedPerson TrustedPerson Un-trustedPerson Un-trustedPerson “Privacy measures will be added afterwards” is an invalid approach for privacy issues, information leakage is an irreversible process

  7. Joint Paper Contribution Title/abstract should reference the following terms: • Registry systems for both practice (targeted screening) and research • Containing biomedical information • For (complex) geneticallyinheritable diseases Target date fordraft: end-of-june 2005

  8. Thank you for your attention! Custodix NV Verlorenbroodstr. 120 B-9820 Merelbeke Belgium http://www.custodix.com/ or info@custodix.com

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