ELSA Workshop on 12 and 13 October 2022
An ELSA workshop on “Anonymisation and Data Escrow” was offered on 12 and 13 October 2022 in Berlin. The aim of the workshop was to network and exchange consortia on the topics of data trusteeship and anonymisation solutions. Six use cases from different consortia and perspectives were presented at the workshop. You can download the agenda here.
Bettina Klingbeil, Head of Division at the BMBF (Framework Conditions for Digitisation), shed light on the BMBF’s perspective and presented the various funding guidelines as well as the accompanying research.
The technical possibilities and procedures of pseudonymisation and anonymisation were discussed in depth, as well as different models of potential data trust solutions. In addition to the ethical and legal challenges, the definition of data trusteeship also played a role. Role models, access modes and the responsibility of researchers in the use cases were identified as common challenges. As a result, it can be stated that there are already well-functioning models for the provision of research data, which – although they partly address special cases – can serve as a model for other disciplines.
- Sandra Dummert: Anonymisierung und Datenzugang am Forschungsdatenzentrum des Instituts für Arbeitsmarkt- und Berufsforschung (IAB)
- Prof. Dr. med. Dr. phil. Eva Winkler; Lukas Kiefer: Ethische Treuhandkonzepte in der Medizin und ihre Implikationen für die Datentreuhand
- Tobias Kussel: Pseudonymisierung und Record Linkage
- Matthias Löbe: Pseudonymisierung und Anonymisierung von klinischen Daten in den Datenintegrationszentren der MII
- Dr. Kati Mozygemba: QualiAnon – Das Qualiservice Anonymisierungstool für Textdaten
- Petra Ritter: Datenschutzkonforme virtuelle Forschungsinfrastrukturen für Gesundheitsdaten Actionable Multilevel Health Data