DAta FIDUciaries in MEdical Research: ethical and legal foundations and implementations (DAFIDUMER)

• Applicants: Professor Dr. Stefan Geibel; Professorin Eva Winkler, Ph.D.
• Subject Area: Private Law ; Practical Philosophy
• Term: since 2023
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 528528062

High expectations are associated with the development of data fiduciary models for medical research. They are expected to make the decisive contribution to raising so far fragmented data treasures especially for research purposes. However, the legal basis of the data fiduciary has been little explored, and many legal uncertainties remain in order to bring research on personal data in line with the fundamental right to data protection. Because the concept of data fiduciaries is already well known in ethics and has been studied in a differentiated manner, it is precisely the interdisciplinary bridging between ethics and law that promises decisive added value for the development of balanced solutions for the regulation and self-regulation of data fiduciary models. These solutions can be built on instruments of Union and national law and will be embedded in existing initiatives such as the broad-consent model of the Medical Informatics Initiative, biobank models or genome data initiatives, and further develop these initiatives. The overarching goal of the project is to design a legally secure and trustworthy infrastructure for the secondary use of health data for research purposes and to develop a governance framework for its legal implementation as well as a toolbox suitable for the regulation and self-regulation of data fiduciaries.

• DFG Programme: Research Grants