Work Package 10

Ethical, Legal and Societal Implications


WP 10 is to develop an inventory, analysis and guideline(s) for the Ethical, Legal and Social Implications of integrating novel types of data into the VEO core data hubs. A guiding principle within the WP is building the public’s trust in innovative use of big data for health protection.

10.1 To provide an overview of the ethical and legal interoperability implications and limitations of different types of big data repositories for EID;
10.2 To explore and discuss among stakeholders dilemmas where interoperability limitations of data lead to a collision between the public health mission, open science demands, and privacy principles and civil rights;
10.3 To develop ethical/legal guidelines for professional use of societal data for public health on the basis of FAIR principles, and to develop advice for regulatory and governance mechanisms, during and outside crisis.
10.4 To explore ELSI questions connected to citizen-aided science projects and instruments, and elaborate on how to facilitate legal considerations to support the engagement of interested citizens on public health research;
10.5 To assess the feasibility and acceptability of implementing citizen science projects on the field of EIDs by understanding citizens’ interests and concerns on engagement and the desired level of participation;
10.6 To explore through real world experiments how citizen science can be better implemented to contribute in practice to an improved public health action, balancing the ELSI considerations.