""

FAIR-DS: FAIR-Data Spaces

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

Funding

The project is funded by the Federal Ministry of Education and Research (BMBF). The start of the funding period of 3 years was in May 2021.

The project is being coordinated by the Fraunhofer-Institut für Angewandte Informationstechnik (FIT) and the Verein Nationale Forschungsdateninfrastruktur (NFDI) e.V. The other partners are Fraunhofer-Institut für Software- und Systemtechnik (ISST), Justus-Liebig-Universität Gießen, TIB, Universität zu Köln, Universität Leipzig, RWTH Aachen, FIZ Karlsruhe, Eberhard Karls Universität Tübingen, Heidelberger Akademie der Wissenschaften, Europäisches Laboratorium für Molekularbiologie (EMBL), Philipps-Universität Marburg, Westfälische Wilhelms-Universität Münster, Leibniz-Informationszentrum Wirtschaft (ZBW) and Atos.