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 (pdf)
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

Genetic Mapping

ERDERA unites 10 000 rare disease datasets in a single, secure European resource

In its first year, ERDERA has brought together 10 000 harmonised genomic and phenotypic datasets from unsolved rare disease cases across Europe, creating a secure, standardised and scalable resource.
Medicines

EMA starts review of Tavneos for rare autoimmune diseases GPA and MPA

The European Medicines Agency has begun a formal review of Tavneos (avacopan) after emerging information raised questions about the integrity of key clinical trial data supporting its EU authorisation, with potential implications for adults living with rare autoimmune vasculitis.
Black Pearl Awards

EURORDIS Black Pearl Awards 2026: celebrating rare disease champions in Brussels and online

On 24 February, in Brussels and online, EURORDIS will bring the rare disease community together for its fifteenth Black Pearl Awards ceremony, held in the lead‑up to Rare Disease Day.
Young Patients Training

ERDERA opens call for young rare disease advocates to join training in Paris

Taking place on 23–25 April at Institut Imagine in Paris

ERDERA's

search form