Title of Presentation
Data protection in a de-centralised environment
Date and Place
Rumyana Proynova is a computer scientist at the German Cancer Research Center (DKFZ). She started her research in medical informatics in 2009, in a project concerning the usability of clinical information systems.
She is currently a member of Prof. Ückert’s group in Heidelberg. She works on a project which will provide the IT infrastructure for interconnecting biobanks from the participating European countries. In the team that develops key software components of this infrastructure, she coordinates their work with the other teams distributed throughout Europe, and focuses on providing a solution which covers the users’ personal, organizational and legal needs in the heterogenous environment of European biobanking.
Biobanks can only serve their purpose when their samples are discoverable and available for scientific use. However, granting the public free access to a biobank’s information is not feasible. Due to the potential for misuse and to privacy considerations, many biobanks prefer to keep their data in their own secured network. This makes it very challenging to construct a search service or catalogue for biobank samples.
We use an approach which enables searching, while allowing the biobanks to remain in control of their data. It relies on a combination of central and local components. Sensitive information is never sent from the local components (“connectors”, one per biobank) to the central search interface. The connectors themselves are administered by the biobank’s IT staff, who also define the data structures exchanged between the connector and the biobank’s data storage.
This approach allows the biobank to keep data sovereignity while remaining open to legitimate search inquiries and collaboration requests. When integrated with pseudonimization, authentication and autorization components, it provides fine-grained access control and enables the biobank to implement the current legal requirements for data protection. The acceptance among our biobank partners is high, and trust issues are minimized.