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Media Release
For Immediate Release

Paris, 10 June — Over 150 scientists, diplomats and interested members of the public paused today to commemorate and reflect on three important anniversaries that have dramatically shaped biomedical research and set the stage for the delivery of personalised healthcare. The event, "60 Years of DNA" held at the headquarters of the United Nations Educational Scientific and Cultural Organisation (UNESCO) in Paris, France and co-organised by the Human Variome Project and the UNESCO International Basic Sciences Program, celebrated the 60th anniversary of the discovery of the structure of DNA, and the 10th anniversaries of the completion of the Human Genome Project and the adoption of the International Declaration on Human Genetic Data.

In opening the event, Mr David Abraham, Chairman of the Board of Human Variome Project International, which operates the Project’s International Coordinating Office, reminded those present why these anniversaries deserve notice. “Genetics and genomics drastically impacts almost all aspects of human disease. 7 million children are born each year with a genetic disorder or birth defect; 90% of these children are from low income countries. We need better ways to share our genomic knowledge so that all people can share in the benefits of our common genetic heritage.”

The Human Variome Project is an international consortium of scientists and health professionals working to improve global health through the free and open sharing of genetic variation information. “The role of the HVP is to facilitate the collection, curation, interpretation and sharing of genetic variation information across the world,” said Abraham.

The Project has a proud working relationship with UNESCO. “Together we promote research to better understand and manage human disease, to share progress in human genetics across national boundaries and stimulate further breakthroughs,” said UNESCO Deputy Director-General, Mr Getachew Engida. “UNESCO is working to raise awareness among member states about the importance of genetic research especially for health. Governments and other players must invest far more in genetics and genomics. At the same time, we need greater cooperation across borders. Humanity has no choice but to move forward together.”

Paris, 12 June — During the opening session of its 4 th Biennial Meeting today, the Human Variome Project announced the establishment of a major grant program to be administered in collaboration with the Human Variome Project Chinese Node. The Human Variome Project/China Country Development Program will provide grants of $75,000 to projects that promote knowledge exchange across national boundaries in the areas of medical genetics and genomics.

“Now, more than ever, we are living in a world where our individual genetic makeup will determine the course of the medical treatment we will undergo,” said Professor Xitao Li, Director of the Human Variome Project Chinese Node and a member of the Board of Directors for the
International Human Variome Project, while announcing the HVPCCDP. “But more importantly, we are living in a world that is beginning to realise that every piece of information discovered about our genes and their function will have tremendous impact on a number of people all around the world.”

The aim of the Human Variome Project/China Country Development Program is to support the growth of a viable, sustainable network of HVP Country Nodes across the world. This growing network will support the achievement of the broader aims of the Human Variome Project
including ensuring that all information on genetic variation can be collected, curated, interpreted and shared freely and openly, and that this open sharing will result in speedier, better and cheaper diagnosis and treatment of genetic disorders.

“By focusing on projects involving partnerships of art least two countries we will increase opportunities for collaboration in the field of medical genetic and genomics. In particular, we want to build and strengthen existing collaborations between HVP Consortium members that
have been operating for some time,” said Li.

ENDS

Media Release
For Immediate Release

Q1: Why is the Human Variome Project Meeting?

The Human Variome Project is an international consortium of scientists and health professionals working to improve global health through the free and open sharing of genetic variation information. Every two years the Consortium meets to discuss, debate and decode
on plans and priorities for the next two years.

These meetings have been occurring since the Human Variome Project was initiated in 2006. Since 2010, the meeting has been held at the headquarters of the United Nations Education, Scientific and Cultural Organisation in Paris, France.

Q2: What will happen at the meeting?

Media Release
For Immediate Release

Beijing, 13 December — The Human Variome Project Beijing Meeting wrapped up yesterday after five days of high level talks between members of the Human Variome Project Consortium and the Human Variome Project Chinese Node. The meeting focussed on encouraging new international collaborations that will enable the world’s genomic knowledge to be shared in a bid to improve global health. A particular focus of the meeting was how low- and middle-income countries can be supported.

The meeting also saw the official opening of the Human Variome Project Chinese Node, a multi-million dollar initiative of the Chinese Government to dramatically improve the country’s capacity in medical genetics, genetic diagnostics and genetic counselling. The Human Variome Project Chinese Node has also committed to undertaking 25% of the total effort required to complete the Human Variome Project, a figure in line with their contribution to the world’s population.

At the close of the meeting the Human Variome Project Consortium released a joint statement with the Human Variome Project Chinese Node, reaffirming their commitment to the free and open sharing of genetic disease in a manner that protects the privacy and dignity of patients and their families. The Human Variome Project next meets at UNESCO headquarters in Paris in June, at their fourth biennial meeting.

ENDS

The international Human Variome Project Consortium and the Human Variome Project Chinese Node

Recognising that our genes are fundamental to human life and diversity and are a common thread that binds all peoples and cultures,

Emphasising that the free and open sharing of information on genetic variations and their effects will improve human health by enabling faster, cheaper and more accurate diagnosis, therapy and treatment,

Recalling that Article 1 of the UNESCO Universal Declaration on the Human Genome and Human Rights states, “The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity,”

Noting that the mantra of the Human Variome Project is sharing data · reducing disease, and

Media Release
For Immediate Release

Beijing, 9 December — The Human Variome Project Beijing Meeting was officially opened this morning at a ceremony involving many local dignitaries including former Ministers of Health and Science. The Human Variome Project Beijing Meeting is a joint meeting of the international Human Variome Project Consortium and the Human Variome Project Chinese Node. It will focus on increasing opportunities for collaboration between China and the international Human Variome Project, which is run out of Melbourne, Australia.

The meeting was addressed by Mr David Abraham, Chairman of the Board, Professor Xitao Li, Human Variome Project Chinese Node Director, Professor Richard Cotton, Human Variome Project Scientific Director, Mr Ramasamy Jayakumar, Programme Specialist at UNESCO, and, via video message, Professor Peter Doherty, Nobel Laureate and 1997 Australian of the Year. A welcome message from the Australian Foreign Minister, the Honourable Kevin Rudd, was also read.

Earlier this year, the Chinese Government committed US$300 million to meeting the goals of the Human Variome Project. This money will be spent to improve clinical genetics services in China and ensure that complete information on mutations in 5,000 genes from around the world is made freely and openly available. This meeting is the first step in this process that will take almost 10 years to complete.

The Human Variome Project Beijing Meeting will be a forum where with the support of China, the necessary international collaborations can be discussed, debated and formalised. It will continue to address the complex issues of how collaborative projects can be initiated and developed to produce positive clinical and research outcomes and allow the work to start. Meeting participants are drawn from the most prominent and representative experts in each of the relevant disciplines worldwide. The Human Variome Project Beijing Meeting aims to take the Project to the next level of international collaboration by specifically:

Media Release
For Immediate Release

Melbourne, 18 July — The Chairman, Mr David Abraham, and the Scientific Director, Professor Richard Cotton are delighted to announce that Human Variome Project International Limited has been admitted into operational relations with UNESCO (United Nations Educational, Scientific and Cultural Organisation).

“This is a major step forward for science in Australia, as well as Human Variome Project International Limited, the International Coordinating Office of the Human Variome Project, based in Melbourne,” said Mr Abraham. He also stated that this is a significant endorsement by the international community of the Human Variome Project, a project that has been promoted by its founder Professor Richard Cotton.

“This is the first scientific project approved by UNESCO in Australia,” said Professor Cotton, “and the first genetics project in the world.”

ENDS

Media Release
For Immediate Release

Melbourne, 21 January — China committed to the global fight to eradicate genetic disease today with representatives of the Chinese Government pledging around US$300 million to establish a new institute to directly contribute to the work of the Human Variome Project.

The Human Variome Project is an international consortium of clinicians, geneticists and researchers from over 30 countries led by Professor Richard Cotton, a world renowned expert in the area of genetic variation detection and data collection. It was formally initiated in 2006 at a World Health Organisation sponsored meeting in Melbourne, Australia and seeks to facilitate the establishment and maintenance of standards, systems and infrastructure for the worldwide collection and sharing of all genetic variations effecting human disease. The ultimate goal of the Project is to integrate the systematic collection and sharing of genetic variant information into routine clinical practice.

"This is an unprecedented step forward for the field of genetic health," says Professor Richard Cotton, the Project’s Scientific Director and a Professorial Fellow of the University of Melbourne. "By committing this level of funds directly to achieving the vision of the Human Variome Project, China has shown the world that not only do they recognise genetic disease as a serious global health issue, but that they are serious about addressing it"

With a population of some 1.4 billion people, a quarter of the world’s population, there is a huge amount of genetic diversity within China. The new institute, based in Beijing, will leverage that diversity to build new—and supplement existing—databases that catalogue genetic variation within genes implicated in hundreds of genetic diseases.

Media Relase
For Immediate Release

Washington, 2 November — The Human Variome Project today announced that it had exceeded some very important milestones set out in its Project Roadmap 2010-2012 by officially partnering with consortiums to coordinate the collection of genetic data from four countries: China, Kuwait, Malaysia and Australia. “We are very happy to have formed these valuable partnerships so quickly after the release of our Project Roadmap,” said Professor Richard Cotton, the Project’s Scientific Director and a Professorial Fellow of the University of Melbourne, Australia.

“The consortiums from these four countries have initiated what we are calling HVP Country Nodes: secure repositories of all the genetic variants being discovered in the diagnostic laboratories of individual countries,” said Cotton.

HVP Country Nodes will not only be valuable sources of information to inform better diagnostic decisions and healthcare planning within the countries possessing nodes, but will also share portions of their datasets with international gene and disease specific databases.

“This is exactly the kind of work the Human Variome Project was conceived to support,” said Cotton, “The free and open sharing of genetic data across national and cultural boundaries. However, we still need to be sensitive to the different legal and ethical landscapes that are out there. That’s what makes the concept of HVP Country Nodes so powerful: each country gets to control how their data is collected and how it is shared.”

Media Release
For Immediate Release

Paris, 11 May – Some 200 researchers are taking part in the third Human Variome Project meeting which began at UNESCO headquarters on 10 May. The Director-General of UNESCO, Irina Bovoka, has granted the Organization’s patronage to the meeting, which is focused on how human genetic variation data can be collected and shared and used to develop treatments against disease.

The Human Variome Project is an international consortium of researchers committed to reducing the burden of genetic disease on the world’s population. The consortium believes that the collection of information on every instance of a genetic variation and its effect on human health is the only way that the vision can be achieved. The sharing of information on genetic variation and its consequences among scientists and within civil society allows existing treatments to be delivered more effectively to patients and new treatments and cures to be developed.

The complete sequencing of the human genome met with worldwide acclaim, not only because a significant mountain had been climbed but because scientists acquired the potential to simplify the analysis of both non-inherited and inherited genetic disease. The next frontier is the discovery and documentation of all variations present in human genes so that the results of the Human Genome can be put to practical use for disease treatment and prevention. The Human Variome Project, gathering and sharing genetic variation data, aims to make this happen.

"UNESCO wishes to underline the importance of utilizing basic research to meet societal needs and bringing together scientists and civil society for dialogue and co-operation" said Walter Erdelen, UNESCO Assistant Director-General for Natural Sciences, in his welcoming address to the meeting. “The multidisciplinary nature of the Human Variome Project, which includes scientists and practitioners from different disciplines (molecular biologists, geneticists, clinicians, epidemiologists, bioinformaticians and IT specialists), allows for basic research findings to be accessible to and useful for clinicians and the people they serve.”