Workshop: Opening and sharing of personal data: ethical and legal issues and solutions. ENRIO 2021 Congress on Research Integrity Practice

Opening and sharing of personal data: ethical and legal issues and solutions

Monday, 27 September, 10-12 am CEST.

Description:

When working with personal data, the General Data Protection Regulation (GDPR) poses an ethical conundrum to European researchers: the protection of the personal data of the study subjects can limit the transparency and sustainability of the scientific process by restricting data sharing and reuse. The aim of this workshop is to identify solutions that are both ethical and GDPR-compliant for the sharing of research personal data with the global scientific community. The workshop will present some existing solutions by actually showing how to adopt them in practice. Participants will learn how to adapt those solutions to their specific research case, while engaging in the discussion of the compromises and risks that each solution might carry.

Organisers:

• Enrico Glerean, staff scientist, Aalto University, Finland (neuroscience, brain imaging, scientific computing)
• Cyril Pernet, Senior Research Software Engineer, Copenhagen University Hospital, Copenhagen, Denmark (neuroscience, brain imaging, open science)
• Richard Darst, staff scientist, Aalto University, Finland (scientific computing)
• Riitta Salmelin, professor, Department of Neuroscience and Biomedical Engineering, Aalto University; member of TENK, Finland (neuroscience, brain imaging, research ethics)
• Maria Rehbinder, senior legal counsel, Aalto University, Finland (GDPR for research, Finnish and European legislation, IP)
• Ilari Lähteenmäki, project manager, Aalto University, Finland (research data management, security)

Workshop structure:

• 10:00 - 10:10 Round of introduction
• 10:10 - 10:30 Enrico Glerean: "Ethically and legally sharing research data with personal data" [link to slides]
• 10:30 - 11:00 Cyril Pernet: "The case of opening brain images to advance cognitive and clinical neuroscience" [link to slides]
• 11:00 - 11:30 Interactive part: Ethical and legal issue in sharing individual's personal data in research [link to polls after workshop]

Contact

You can email [email protected] for any questions or requests. We are gathering a group of interested people who would like to work on this together, please join us!