Consent for the sharing of biological materials and data in genetics/genomics research

This session examines the dynamic role of consent for the processing of genetic/genomic biological materials and associated data in an evolving European data-driven society. It explores how the evolution of consent for health-related research — with specific attention to genetic/genomic biological materials and associated data — is increasingly driven by data and AI policies in European legislation from the GDPR to the DGA, EHDS, AI Act, and EOSC. 

The session is designed to be interactive and create a space for open discussion on a critical topic of importance to ethics and citizen rights, at the interface between data, AI systems, and genetic/genomic research.

The session elucidates the developing legal and ethical relationship between the data subject and his/her data, examining how evolution in consent frameworks and requirements impacts fundamental concepts of privacy, control, and governance in genetic/genomic research. 

The session will look at the ongoing modifications of consent, from "taking control over one’s data" to questions of "legacy consent" to "broad consent" to "informed choice" to "data donation" to "a common European data altruism consent form" for genetic/genomic research. Where will consent land for human biological materials and associated data in genetic/genomic research in the evolving EU context, where machine learning and AI are developed in regulatory sandboxes for uses in the European Health Data Space?

The session confronts genetic/genomic research with the evolving role and understanding of consent within the fundamental EU Charter rights, and the ethics of high-risk AI systems developed for data management in data sharing and open-science structures.

Recording link
Thursday, April 20, 2023
9:00 AM - 10:30 AM (BST)
Session chairs
Francis P. Crawley
On-site location
Kohn Centre (Ground Floor)