WP3


Lead by Luxembourg National Data Service, WP lead Davit Chokoshvili and co-led by Biomedical Research Foundation, Academy of Athens, co-lead Olga Tzortzatou
This work package focuses on ethical, legal, and societal issues (ELSI) relating to the GoE project. The work package has three broad objectives: 1) to support, in an ethically and legally compliant manner, the establishment of the GoE databases of genomic variation and their use in demonstrator use cases envisaged in the projects (i.e., “primary use” of the GoE data collections); 2) to facilitate the lawful reuse of the GoE data collections for research, healthcare and health policy purposes, particularly through the 1+MG legal entity (EDIC, if available), (i.e., “secondary use” of the GoE data collections); and 3) to address overarching ethical and legal issues relating to the governance, access, and use of GoE data collections.
The work is divided into 5 tasks:
- Compliance of activities in the GoE consortium
- Compliance of future secondary uses of GoE data collections
- Legal issues
- Alignment within and beyond the GoE consortium
- Societal implications of intended data use within and beyond the GoE consortium