blank
blank

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.

Acces this publication
Guidance for human genome data collection, access, use and sharing

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

EU Flags

European Commission opens call for evidence on future Joint Undertakings

Feedback is open until 14 July 2026, giving stakeholders an early opportunity to comment during the preparation of a likely legislative proposal for a Council regulation.
European Human Genetics Conference - Rotterdam, The Netherlands June 12-15, 2027

European Human Genetics Conference 2027

June 12 - June 15
The conference will take place in Rotterdam on 12–15 June 2027 and is planned as a hybrid event by the European Society of Human Genetics.
uropean Human Genetics Conference (ESHG) 2026

At ESHG 2026 in Gothenburg, ERDERA’s diagnostics work reviewed early progress and the next phase ahead

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.
WODC Boston 2026

At World Orphan Drug Congress USA, ERDERA highlights how connected clinical research networks can make rare disease trials more feasible

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.

ERDERA's

search form