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Human Variome Project Launches Initiative to Address Genetic Blood Disorders

NEW YORK (GenomeWeb) – The Human Variome Project today announced that it has launched a new international initiative called the Global Globin 2020 Challenge (GG2020) to address genetic blood disorders. The announcement came at the Human Genome Organisation meeting inKuala Lumpur, Malaysia.

GG2020 will apply recent developments in human genomics, especially the systematic collection and sharing of data on genetic variation, to the treatment of blood disorders known as hemolytic anemias. The project plans to build a base of evidence for the better management and local delivery of treatment, care, and eventually cures for the diseases, the organization said in a statement.

A major goal of the project is to develop skills and expertise in genomic medicine in low- and middle-income countries.

"The hemolytic anemias collectively are cause for significant morbidity and mortality, especially in parts of the world where health systems are often less well-developed," Human Variome Project International Chairman Chris Arnold said in a statement, adding children are the most severely affected. While knowledge about the genetics and biology of hemolytic anemias have existed and been used in some countries for some time to reduce the burden of disease, "low- and middle-income countries have remained practically untouched by this knowledge and [these] innovations," he said.

Helen Robinson, of the University of Melbourne added, "Commitment to systematic variant data collection is increasing, but this is occurring mostly in high-income countries where much of the diagnosis and testing takes place. There is a risk that countries where the burden of these diseases is highest — low- and middle-income countries — are being left behind in a form of 'genomic divide.' The capacity to generate quality data on variants, [and] to store it so that it can be shared internationally, needs to be built in these countries."

GG2020 will be lead by geneticists Zilfalil bin Alwi of Malaysia and Raj Ramesar of South Africa, who are both members of the Human Variome Project Board.