Guidance for human genome data collection, access, use and sharing

1:1

The ethical, legal, and equitable sharing of human genomic data is critical to advancing global health research and ensuring fair access to the benefits of genomics. The WHO’s new document outlines a comprehensive set of globally applicable principles designed to guide stakeholders in the responsible collection, use, and sharing of human genome data.

This document serves as a key resource to navigate complex issues surrounding data governance, with the aim of fostering transparency, promoting equity, and safeguarding individual and collective rights.

These principles are intended to support the implementation of best practices across diverse settings, thereby enhancing the global capacity for genomic research and its translation into health benefits for all.

Year of publication

2024

ISBN

9789240102149

Source

World Health Organization

Author

Research for Health (RFH), Technical Advisory Group on Genomics (TAG-G)

You might also be interested in

At the European Human Genetics Conference 2026 in Gothenburg, ERDERA’s Diagnostic Research Workstream reviewed progress, highlighted early results and used a major European genetics meeting to examine how advances in data sharing and genomic analysis may strengthen rare disease diagnosis across countries.
Boston, 9–11 June 2026: ERDERA's Scientific Coordinator joined the World Orphan Drug Congress USA to set out how stronger clinical research networks can make rare disease trials more feasible across sites and borders.
The 2nd International Conference on Clinical Research Networks (CRNs), organised by European Rare Diseases Research Alliance (ERDERA), Rare Disease International (RDI) and International Rare Diseases Research Consortium (IRDiRC), brought together the global rare disease community to advance innovative clinical research solutions, with a special focus on low- and middle-income countries (LMICs).
On 3–4 June, EURORDIS–Rare Diseases Europe and Orphanet convened the rare disease community at ECRD 2026 in Prague around a shared call for coordinated European action, including the forthcoming European Blueprint for Rare Diseases.