CPDP 2020 - BBMRI-ERIC is organising a panel on "Open Science with Health and Genetic Data: A Contradiction?"

Brussels, Thursday 23 January 2020 at 08:45 – Area 42 – Registration at La Cave

The panel is co-organized by the research infrastructure BBMRI-ERIC and the academic interdisciplinary research project “Governance of health data in cyberspace” (University of Oxford, Uppsala University, University of Iceland and University of Oslo).

Moderator: Heidi Beate Bentzen, University of Oslo (NO)

Speakers: Michaela Th. Mayrhofer, BBMRI-ERIC (AT); Deborah Mascalzoni, EURAC Research (IT); Joseph Cannataci, UN Special Rapporteur on the right to privacy (INT); Jeremy Rollison, Microsoft (BE), Claire Gayrel (EDPS)

The European Commission encourages public-funded research results to be available in the public sphere to strengthen science and the knowledge-based economy, thus moving from ‘open access’ towards ‘open science’. There is a similar strong push by the scientific community, funders and publishers. Researchers have started depositing health and genetic data in research databases, ranging from being open only to scientists, to being open online without access control. This data is extensively (re)used by industry, research institutions and citizen scientists for the purposes of AI, technological innovation and scientific research. Open science has yet to be scrutinized as a concept by the ethical and legal community, especially in relation to unintended uses, protection of fundamental rights and compliance with the GDPR. The panel will address these issues in light of governance approaches aimed at balancing individual rights with open science goals.

The panel will consider the following: open science, data reuse, human rights, AI.

Website and programme: https://www.cpdpconferences.org