Published November 17, 2023 | Version v1
Project deliverable Open

Guideline on ELSI compliant Governance Models

  • 1. NED G.I.E.
  • 1. BBMRI-ERIC
  • 2. PNED G.I.E.

Description

This deliverable focuses on the ELSI-compliant governance of Health Research & Innovation Clouds (HRICs). The deliverable builds on the insights and learnings generated by multiple Work Packages over the course of the HealthyCloud project, synthesising these outputs into a comprehensive analysis of the ELSI compliance framework for the HRICs. In its conceptual analysis, this deliverable takes a broad view on data processing in the HRIC, examining the entire data reuse lifecycle taking place in the HRIC ecosystem. In doing so, the deliverable analyses compliance challenges encountered by relevant parties beyond the providers of HRIC Infrastructures. This bigger-picture approach focusing on the global compliance needs across the HRIC ecosystem helps identify potential gaps where the providers of the HRIC Infrastructure services could support relevant stakeholders achieve their legal, regulatory, and ethical governance obligations. The insights elicited through this analysis are subsequently transposed into actionable guidance primarily aimed at HRIC Infrastructures, as well as the ancillary support services being currently defined by the HealthyCloud consortium.

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HealthyCloud_D2.4ELSI Guidance_v1.1-final.pdf

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