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Other literature type . 2026
License: CC BY
Data sources: ZENODO
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Project deliverable . 2026
License: CC BY
Data sources: Datacite
ZENODO
Project deliverable . 2026
License: CC BY
Data sources: Datacite
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GDI D2.4 Framework for data governance

Authors: Becker, Regina;

GDI D2.4 Framework for data governance

Abstract

This document establishes the data governance framework for the Genome EDIC Secondary Use Framework, defining the rights and responsibilities of all actors throughout the data lifecycle for secondary use of genomic and health data. The framework identifies and delineates roles for key actors including the Genome EDIC governance structure (Assembly of Members, Central Coordination, and 1+MG Data Access Committee), data providers, 1+MG Data Holders, national DACs, IT infrastructure providers, National Coordination Points (1+MG NCP), and users with their hosting organisations. All recommendations have been consolidated into a comprehensive table designed to provide clarity on each actor's responsibilities within the framework. The governance model is built on two fundamental principles: data sovereignty (data remain in countries) and national responsibility (governments ensure necessary structures are in place). The framework balances national implementation flexibility with harmonisation requirements, particularly ensuring a homogeneous user experience across Member States. Clear distinction is made between the Genome EDIC's governing level (Assembly of Members setting principles and minimum requirements) and operational level (Central Coordination acting as one-stop-shop and ensuring quality adherence). Member States bear responsibility for establishing the required competencies in genomic and health data management, secure IT infrastructure operations, and appropriate tools for data subject interaction. The Genome EDIC Central Coordination will streamline operations by handling tasks more efficiently at the central level, avoiding duplication of efforts across countries. The framework is designed for integration with the European Health Data Space, with detailed recommendations and an overview table provided to support targeted implementation by stakeholders.

Related Organizations
Keywords

European Genomic Data Infrastructure, Genome EDIC, 1+ Million Genomes Initiative, 1+MG, NCP, GDI, Secondary Use Framework, Data Access Committee

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selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
0
Average
Average
Average