CPDP 2020: Open Science with Health and Genetic Data: A Contradiction?
DATE: Thursday 23 January 2020
VENUE: Area 42 Petit
SLOT: 08.45
ORGANISED BY: BBMRI-ERIC
MODERATOR: Heidi Beate Bentzen, University of Oslo (NO)
SPEAKERS: Joe Cannataci, UN Special Rapporteur on the right to privacy (INT); Claire Gayrel, EDPS (EU); Deborah Mascalzoni, EURAC Research (IT); Michaela Th. Mayrhofer, BBMRI-ERIC (AT); Jeremy Rollison, Microsoft (BE)
Panel Description
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
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