WHO Guidance for human genomic data
26 November 2024
Guidance for human genomic data collection, access, use and sharing
The World Health Organization has recently released “Guidance for human genomic data collection, access, use and sharing”, which outlines globally relevant principles to guide everyone involved with genomic data. These principles have been developed to facilitate advances in genomics-based health care for individuals and populations, whilst protecting the rights and interests of individuals by mitigating the ethical, legal, social and cultural issues that are likely to arise.
The document covers eight principles, each with a series of recommendations for policy-makers, researchers, clinicians, and others involved in human genome data:
- To affirm and value the rights of individuals and communities to make decisions
- Social justice
- Solidarity
- Equitable access to and benefit from human genome data
- Collaboration, cooperation and partnership
- Stewardship of human genome data
- Transparency
- Accountability
We are pleased to have had and Aboriginal voice contribute to this important document, with Professor Alex Brown taking part in the consultation process.
You can download the document here, or find it on our Resources page.
