Speech by Professor Xitao Li announcing the Human Variome Project/China Country Development Program
Mr Chairman, fellow Board members, members of the Human Variome Project Consortium.
Last November, the Human Variome Project held the first ever meeting of the International Confederation of Countries Advisory Council in my home city of Beijing. Representatives from all twelve HVP Country Nodes, as well as representatives from many human genetics societies, met to discuss one thing: how to get information on genetic variants and their effect on patients out of countries and into international databases so that global health can be improved.
It is a difficult problem, and it is a problem that we must solve together in order for the Human Variome Project to be judged a success. Our genome is the common thread that binds humanity. Information about our genome must therefore belong to all of humanity. There is no way to justify the retention of this information within national borders. No one country can discover all there is to know about our genome on their own. No one country has a large enough population to find anywhere near the total amount of variation possible. It is only by working together that we will know enough to make a difference to human health.
But this information does not exist in a vacuum. It must be generated. DNA must be sequenced, variants must be classified and phenotypes described. And it is an unfortunate reality that not every country has the technical or knowledge capacity to be able to do this routinely and effectively. Usually, as I’m sure we can all agree, diversity is a thing to be celebrated. But the huge diversity that is present in the world’s ability to provide adequate genetic healthcare is a problem and needs to be improved.
If we look to the mission of the Human Variome Project, it states that we are working to alleviate needless human suffering for many millions of the world’s people by facilitating the collection, curation, interpretation and sharing of data on genetic variation. This facilitation can come in many forms. Yes we are primarily concerned with producing standards and guidelines for databases. But the Human Variome Project has always recognised the need to assist researchers and healthcare professionals who are working to build capacity in their own countries.
Genomics projects are the greatest undertaking mankind can make: they use the most advanced technology in the world and are the largest scientific, industrial and engineering projects. China has a population of 1.3 billion with 56 nationalities represented. These are the determining factors in the centrality and diversity of genomics and regularity when studying the effects of human genome variations on diseases.
The new Project Roadmap articulates this position beautifully. It structures the work of the Human Variome Project under four pillars: setting normative function, behaving ethically, sharing knowledge and building capacity.
As the first Core Member of the Human Variome Project, China wants to play a leading role in this facilitation. As a nation we are fortunate to have a large population and the resources to support it. We would like nothing better than to share our genomic knowledge with the world. But as I said before, no one nation can do this in isolation. For the Human Variome Project to have maximum benefit, we must all be able to share our knowledge freely and openly.
This is why, the Human Variome Project Chinese Node, in conjunction with the international Human Variome Project, is today announcing the Human Variome Project/China Country Development Program. This Program will provide a US$1 Million pool of funds from which grants of US$75,000 will be awarded to fund projects run by Consortium members that promote knowledge sharing and capacity building initiatives and collaboration across national and cultural boundaries.
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 broader aims of the Human Variome Project and lead to better health outcomes for patients across the globe.
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. But more importantly, we want to see these collaborations and these projects reach a position where they can continue well beyond the life of the funding provided under this grant.
The funding that we are making available can be used for any number of projects, from running training programs for doctors in a developing country, to developing an ethics framework for the practice of medical genetics across a region involving multiple countries with geographic, linguistic or religious ties. Applications for funding will open on the 1st of July and can be submitted at any time, up until the 30th of June, 2013.
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. 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. Yes, there will still be big discoveries that affect thousands of lives, but those moments will be harder and harder to come by. It will be the little things, the classification of a variant here, the discovery of a gene there that will have the larger impact on individuals and on the world.
The Human Variome Project exists to support these little discoveries—to share them and to make them possible. As a global consortium, we are working in unison to improve the health of individuals in every nation. And with this program announced here today, China and the Human Variome Project are helping members of the Human Variome Project Consortium to build their countries’ capacities to make these little discoveries every day events. Together, we can all share data and reduce disease.