Incorporating ELSI as a core support for international genomic data access and sharing

Health data collected in cohort studies are valuable sources for knowledge generation and
the advance of biomedical research. However, the use of these data for research projects
beyond the initial purpose raises several ethical, legal, and societal questions regarding the
sensitivity of genomic data sourced from vulnerable and ethnic groups, such as African
genetic data and material.
Federated data infrastructures have become a key approach to make population-scale
genomic and biomolecular data accessible across international borders. While the FAIR
principles have become a guiding technical resource for data sharing, legal and socio-ethical
considerations are equally important for a fair data ecosystem for further uses of genomic
data.

The Horizon 2020 project CINECA aims to provide a federated cloud-based infrastructure
for the discovery, access, and analysis of human genetic and phenotypic data, based on a
virtual cohort of 1.4 million individuals from 10 cohorts in Europe, Canada, and Africa.
Beside technical solutions, CINECA addresses and provides valuable experience and input
on essential ethical, legal, and societal implications and requirements for transnational
health data access, sharing and secondary processing for research purposes.