The Human Variome Project (HVP) is an international consortium of scientists and health-care professionals who are working towards a significant reduction in the burden of genetic disease on the world’s populations. The aim of the Human Variome Project is to ensure that all information on genetic variation can be collected, curated, interpreted and shared freely and openly. This will lead to speedier, better and cheaper diagnosis and treatment of genetic disorders, and better insight into the causes, severity and effect of common disease. HVP’s objects and power include:
to promote the prevention or the control of diseases in human beings;
to develop and provide educational programs, training and courses in public administration, public sector management, public policy, public affairs and any other related fields;
to alleviate human suffering by collecting, organising and sharing data on genetic variation;
to further the Human Variome Project;
to act as the co-ordinating office for the Human Variome Project;
to attract and employ academics, researchers, practitioners and other staff as required;
to provide and support the services to further the objects of the Company;
to provide facilities for research, study and education related to the Human Variome Project;
to carry out and conduct the business of provider of administrative and consulting services;
to seek, encourage and accept gifts, grants, donations or endorsements; and
to affiliate with and enter into co-operative agreements with research educational institutions, government, local governments, practitioner bodies, non-government organisations.
The activities of HVP are focused on following pillars:
establishing standards,systems and infrastructure for sharing genetic data
advocating and promoting ethical behavior in use of human generic data
assisting nations build capacity in genetics
documenting genotype-phenotype correlations for interpretative purposes;
creating processes for the submission of data;
providing education on developments in curation and variant interpretation.
organizing summits, conferences, meetings and fora.
coordinating pilot studies; assists working groups.