NFDI ELSI Workshop with GHGA participation
To advance networking and exchange among NFDI consortia on the topic of 'Anonymization and Data Trusteeship', an ELSA workshop was offered in Berlin on October 12 and 13, 2022.
In this workshop, the main focus was on the technical possibilities and procedures of pseudonymization and anonymization as well as different models of potential data trusteeship solutions. Furthermore, the ethical and legal challenges of this topic were discussed and the concept of data trusteeship was further conceptualised.
Six use cases from different consortia and perspectives were presented during the workshop. One such use case came from GHGA Director Prof Eva Winkler, who gave a presentation on 'Ethical Trust Concepts in Medicine and their Implications '. Data trusteeship plays an important role in medical ethics and Prof Winkler explained in her lecture what is meant by this, what concepts are being used, and the roles of the parties involved.
In the course of this workshop, role models, access modes, and the responsibility of the researchers in the use cases were identified as common challenges. As a result, it can be noted 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.
In addition to representatives of the consortia, the NFDI directorate and the BMBF (Federal Ministry of Education and Research) were also involved in the workshop.
More information can be found here (in German only.)