The exchange of data is a central concern for information- and knowledge-based societies. Innovation in research and technology depends to a large extent on the existence of infrastructures which allow the shift, secure, and effective exchange of information.
The project FAIR-Data Spaces (FAIR-DS) brings together the National Research Data Infrastructure (NFDI) and the secure infrastructure Gaia-X to develop shared data spaces between science and industry. The NFDI initiative aims at making data from science and research useable in a sustainable and qualitative manner for the entire German science system. Gaia-X aims at developing technologies for a secure and open data system for Europe. FAIR-DS connects these efforts in accordance with the FAIR principles: data should be processed and shared in such a way that it is Findable, Accessible, Interoperable and Reusable. The project demonstrates the use of Gaia-X technologies for the sharing of various types of data and analyses the legal and ethical framework for data exchange between public researchers and business actors.
Our subproject within FAIR-DS focuses on ethical issues surrounding the sharing of medical data. In this context, our work is driven by four major objectives:
- To propose informed consent modules for the secondary use of medical data in the context of the connection of NFDI and Gaia-X
- To develop a catalogue of criteria for fair data access and exchange between academic and private business actors
- To investigate possible ways to build trustful relationships between data subjects and researchers where research is at least partly driven by concerns for profit, e.g., through transparency and appropriate governance
- To map out the ethical obligations of different actors regarding data sharing, including data subjects, data providers, and data controllers