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euCanSHare. Deliverable D1.2 - Policy "Points to Consider" tool to guide research projects, policy makers

Knoppers, Bartha Maria; Bernier, Alexander

The Centre of Genomics and Policy at McGill University has conducted an analysis of the ethico-legal requirements enshrined in data privacy law and research ethics guidance in Canada and the European Union. This Points-to-Consider document is intended to synthesize the elements of that research that are of relevance to the secondary use of health data by the cohorts of the euCanSHare project.
In this summary, we have provided a general overview of our research. In Part 1, we assess the sources of the ethico-legal requirements discussed. In Part 2, we consider a number of regulatory requirements in the laws of Canada and the European Union. Elements discussed include legal prerequisites to data use, individual rights in data, and prerequisites to the international transfer of data. In Part 3, the identifiability of data, and the use of safeguards to protect data, are considered. In Part 4, the foregoing ideas are synthesized into holistic proposals for data governance.
The conclusions of this Points-to-Consider document reprise the contents of recent and forthcoming academic publications that elaborate our findings in further detail.

This deliverable has been produced in the context of the euCanSHare (An EU-Canada joint infrastructure for next-generation multi-Study Heart research) Research and Innovation Action, funded by the European Union's Horizon 2020 programme (grant agreement No 825903), the Canadian Institutes of Health Research (CIHR) and the Fonds de recherche du Québec – Santé under the framework of Canada‐EU Commission Flagship Collaboration for Human data storage, integration and sharing.
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