Coreon - Towards a Code of Conduct for data driven health research

Parallel session of the Health-RI conference 2021

• Date: 4 March 2021 
• Time: 15:50-16:20

Summary

Millions of patients and citizens continuously contribute sensitive, personal data and tissue samples to health research. It’s of crucial importance that these are handled responsibly. At the same time, legal uncertainty and conflicting interpretations over what this should entail in practice give cause for concern. COREON (de Commissie Regelgeving Onderzoek) is committed to balanced regulation of health research and drives the revision of the Code of conduct for data protection in health research. The Code of conduct will be released for public consultation in the coming months and submitted for approval to the Dutch data protection authority (Autoriteit Persoonsgegevens).

In this session, we will share the progress of the revision of the Code and raise the discussion about next steps: how can implementation of the code contribute to responsible, efficiently organized data-driven health research infrastructure?

More information about COREON can be found here (in Dutch): https://www.coreon.org

More information about the revision of the Code of Conduct can be found here (in Dutch): https://www.coreon.org/codegoedgedrag/

Organizers

• Martin Boeckhout, MLCF
• Peggy Manders, Radboudumc
• Michel Paardekooper, Amsterdam UMC
• Susanne Rebers, Netherlands Cancer Institute
• Marjanka K. Schmidt, Netherlands Cancer Institute & LUMC
• Evert-Ben van Veen, MLCF

On behalf of COREON