A Recap of the Open Knowledge Human Genomics Meetup
Professor Dr. Johan den Dunnen shook things up with his idea for a ‘DNA-bank’ — a place where account holders have full discretion over access to their genetic sequence.
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NGO Operational relations with UNESCO
The Human
Variome Project
An international non-governmental organisation working to ensure that all information on genetic variation and its effect on human health can be collected, curated, interpreted and shared — freely and openly.
1,100+Consortium
members
members
81Countries
represented
represented
2006Founded in
Melbourne
Melbourne
100%Free & open
data principle
data principle
What we do
Three pillars of a global
Three pillars of a global
knowledge-sharing system
01
Project Activities
We unite global efforts to share genetic data responsibly, improving public health through ethical and sustainable collaboration.
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02Data Sharing Solutions
Guidance and global standards that support the ethical and open sharing of genetic variation data.
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03Find Data Resources
Global resources on genetics, ethics and data sharing, promoting accurate reporting of genetic variants.
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About the Project
Building a global network for responsible genetic data sharing
The Human Variome Project is a worldwide initiative dedicated to improving global health through the open and ethical sharing of genetic variation information. By connecting scientists, clinicians and researchers across countries, we work to create standards, infrastructure and best practices that make genetic data accessible, reliable and beneficial for all.
- Technical standards and harmonised, interoperable approaches
- An international platform for genomics in global health
- Knowledge exchange between world-leading institutions and professionals
- A global evidence base for knowledge sharing in medical genetics
Latest from the blog
Notes from the Consortium
When the “Publish or Perish” model does more harm than good
Focussing on publication quantity has detrimental effects on publication quality — and in genomics, the consequences reach the clinic.
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A Recap of the Open Knowledge Human Genomics Meetup
Johan den Dunnen on the DNA bank: deposits, withdrawals, and a future where everyone knows their genetic makeup and makes no point of it.
Read more
Upcoming events
14th International Symposium on Variants in the Genome
Detection · Sequencing · Interpretation
A biennial meeting presenting the latest developments in the field: the best methodologies for scanning, sequencing, databasing, bio-informatic analysis, functional testing and classification of variants in DNA, RNA and protein.
Resources
Global tools and knowledge for genetic data sharing
Access resources that support ethical, accurate and open sharing of human genetic variation data — from country activities to global databases and journals.
Country Activities
Discover how nations around the world are advancing genetics and public health through Human Variome Project initiatives.
Gene/Disease Databases
Explore trusted databases curated by experts for specific genes and diseases to support research and diagnostics.
Ethical & Legal Resources
Find essential guidelines addressing the social, ethical and legal aspects of genetic data storage and sharing.
Journals & Publications
View leading journals and research publications supporting transparent and standardised genetic reporting.
Frequently asked questions
Answers to common questions
Answers to common questions
about the Project
The Human Variome Project is an international non-governmental organisation working to ensure that all information on genetic variation and its effect on human health can be collected, curated, interpreted and shared freely and openly. It maintains operational relations with UNESCO and a Memorandum of Understanding with the World Health Organisation.
Researchers, healthcare professionals, policy makers and organisations are all welcome. Membership is organised into three categories — Individual Members, Institutional Members and Data Providers — each with its own benefits and requirements.
No. The Project is not directly involved in the development and operation of physical data storage and sharing infrastructure — that is the responsibility of international disease groups, national consortia and health systems, and individual members. The Project exists to help those groups work together through shared standards and coordination.
They are the two categories of recommendation the Consortium produces. HVP Standards are systems, procedures and technologies the Consortium has determined should be used by the community. HVP Guidelines are less prescriptive — systems and practices the Consortium has determined would be beneficial for the community to adopt.
Through HVP Country Nodes, training, education and capacity building. The Project engages with partners and stakeholders in each country so that variation data generated during routine diagnostic and predictive testing is collected and shared in a way that respects local laws, regulations and cultural context.
Coordination is undertaken by Global Variome Limited, a not-for-profit entity. The International Coordinating Office is hosted by the School of Medical Sciences at Universiti Sains Malaysia.
Work with us
Partner with us to advance global genetic knowledge
Join our mission to build a connected world of ethical and open genetic data sharing. Together we can develop solutions that strengthen healthcare and research globally.