Alleviating the burden of genetic disease
Changes in our genes, both small and large, are a fact of life. The statistics are overwhelming: 60% of all humans will be affected by a mutation in their lifetime. They drive evolution, constantly introducing phenotypic variability into the population, ensuring that we, as a species, can adapt to changing environments. However, this same process can also cause disease and illness.
We are suffering from a critical lack of information about the consequences of the vast majority of the mutations possible within the human genome. And, even more concerning, is the fact that even when that information exists, it is not being shared and captured by the global medical research community in a manner that guarantees widespread dissemination and long-term preservation.
The Human Variome Project (HVP) is an international consortium of clinicians and researchers which was founded in 2006 at the Genomic Disorders Research Centre in Melbourne, Australia. Seen as the successor to the Human Genome Project, HVP’s ultimate aim is to heal all diseases associated with genetic variations through the collection and sharing of information. This has the enormous potential to empower scientists and clinicians to achieve better and more affordable diagnosis and cure for some of the most devastating and challenging diseases and to accelerate the progress made in this field. Since its conception the initiative has now grown to 700 members from 67 countries.
UNESCO will host the 4th biennial meeting of the Human Variome Project at the Organization’s Headquarters in Paris, from 11th to 15th June 2012. To be attended by a network of 250 international scientists, this meeting is particularly poignant in that it is the first since the Human Variome Project International Limited became admitted as an NGO in operational relationship with UNESCO.
This year, the meeting will present the strategic plan for the Project for the next five years. The five days will see the establishment of new collaborations and discussions relating to how the objectives laid out in the Project roadmap (2012-2016) can be achieved, principally relating to the creation and maintenance of diseases specific genetic variation databases.
‘There are challenges ahead we will have to face. More data is becoming available for use, along with access and equity issues that accompany rapidly changing technology landscapes. But I have no doubt that working together, we can create a brighter future for thousands of people around the world whose diseases have a genetic component’ Professor Richard Cotton, Scientific Director of the Human Variome Project comments in his welcome message to participants.
By transferring and sharing scientific information, providing scientific expertise and networking researchers, the HVP shares most of the main objectives of the International Basic Sciences Programme (IBSP). UNESCO’s activities will provide valuable support for the HVP in light of its experience in creating partnerships, capacity building and fostering cooperation between centres of excellence. We are delighted to once again be hosting this meeting at the UNESCO Headquarters and look forward to the exchange of ideas and data amongst world class researchers.
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