The Human Variome Project and its new coordination arrangements
Dear colleagues and friends,
It has been sometime since I posted an update.
The Human Variome Project
The Human Variome Project is a global consortium with 1300+ members across 81 countries, that is committed to building capacity worldwide in the collection, curation, interpretation and open sharing of information on variation in the human genome. It has both Associate NGO status with UNESCO, and a Memorandum of understanding with the World Health Organisation.
For 10 years, the HVP has been coordinated by an Australian body, Human Variome Project International Ltd, a not-for-profit, Australian public company limited by guarantee.
In the last few years:
- HVP member numbers and countries have almost doubled;
- two major global projects have been commenced: one for Breast/Ovarian cancer (BRCA Challenge) in association with the Global Alliance for Genomics and Health, bringing together the may different databases around the world on the BRCA1 and BRCA2 genes into a single global database (supported by a grant from AstraZeneca); the other the GLobal Globin 2020 Challenge that is exploring how new genomic techniques can be responsibly and cost-effectively implemented in low- and middle-income countries to support the diagnosis and management of people suffering from haemolytic anaemias; and
- the board has become truly global with UK, US, Malaysian and South African members, plus two Australian directors.
For the past two years I have acted as the Executive Chairman of HVPI Ltd, working with a small dedicated staff in our Melbourne office.
Human Variome Project International Ltd has enjoyed the generous philanthropic support from organisations and individuals, including the Howard Florey Institute, William Buckland Foundation, Ian Potter Foundation, Cass Foundation, Scobie & Claire MacKinnon Trust, Geoff & Helen Handbury Foundation, the Cotton Family (incl. Human Variome Project founder Professor Richard Cotton), and many others. All saw the value in this wonderful project and that its important international coordination work needed to be funded. In addition, the Project attracted funds from several Chinese affiliates, generating export dollars for Australia. Apart from a single grant for the conference launching HVP in 2006, I regret that, despite numerous requests, no government money has been forthcoming.
In spite of all this financial support and considerable success overseas, on 30 June this year, we have had to wind up HVPI Ltd, as the Australian-based coordinating entity. This was a matter of significant regret.
But this is not the end of the Human Variome Project. You will be pleased to know that coordination of the Human Variome Project is now being undertaken from the United Kingdom via Global Variome Ltd, recently established as a not-for-profit entity by former HVPI Ltd director Professor Sir John Burn (a current member of the National Health Service England Board). I am delighted that many of the former HVPI Ltd directors have also agreed to join this new organisation as directors. Professor Ingrid Winship, Head of Research and Director of Genetics at Melbourne Health has joined me as the second Australian director.
I have agreed to become Chairman, and work with the team to drive further expansion of the Human Variome Project and build strong relationships with other global genomics consortia, a number of whom with which we are currently discussing the establishment of formal Memorandums of Understanding.
I am confident that the new and re-invigorated Human Variome Project will make a real difference.
I would encourage you to look at the Human Variome Project website to learn more about this important project.
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