Human Variome Project (HVP)

Description

The Human Variome Project is an international non-governmental organisation that is working to ensure that all information on genetic variation and its effect on human health can be collected, curated, interpreted and shared freely and openly. The Human Variome Project exists to foster communication and collaboration around its central vision: the free and open sharing of genetic variation information to improve public health. Goals of the GG2020 challenge fall into the following main areas: (1) To see growth in the quality and quantity of curated inputs from low- and middle-income countries participating in the project into internationally recognized genetic databases. Tackling haemoglobinopathies is an ideal entry point for these countries to develop the necessary infrastructure and expertise that can expand genetics and genomic medicine into other areas of health-service delivery (2) To harmonize the sharing of all relevant variant data between countries in accordance with international best practice that integrates all the relevant ethical and regulatory frameworks and policies required to serve and protect patients at the same time that the necessary biotechnical systems and procedures are developed (3) To ensure that the storage, curation and sharing of the relevant DNA variation information is sustainable in the medium and longer term by expanding and strengthening the international network of professionals, including curators, researchers, clinicians, bioinformaticians, counsellors, patient groups and health bureaucrats Pursuit of these goals will raise the profile of genomic medicine in low and middle income countries among health bureaucrats in national, regional and international health organizations. It will also develop the capability of health professionals required for diagnosing, treating and counseling carriers in low and middle income countries thus giving them a greater voice and profile among genomic researchers and clinicians globally, regionally and nationally. This will mean that they can actively participate in the various partnerships required to encourage genomic medicine research and innovative health service delivery in low-resource settings.

Organisation's Type

Research Project/Multi-Center Study, Scientific Organisation/Network