The Human Variome Project was first conceived at a meeting of various international genetic bodies in Melbourne, Australia in 2006and founded by Professor Richard Cotton. The Human Variome Project (HVP) 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 provides a central coordinating function for national and international efforts to integrate the collection, curation, interpretation, and sharing of information on variation in the human genome into clinical practice and research. They are a Consortium of researchers, healthcare professionals, policy makers, and organizations from 81 countries. Organizations partnered with the HVP include UNESCO, national and regional human genetics societies and national governments.
The HVP establishes standards, guidelines and best practices for the responsible development and operation of genetic variation data sharing infrastructure, facilities training, public education and education of the clinical genomics field. The organization assists in embedding data sharing into routine clinical practice.
HVP establishes HVP Country Nodes to ensure handling of data is respectful of diverse ethical, legal and social differences in member countries. An HVP Country Node has three components: I) a repository for collection and storage of genomic variation generated within each country; II) a governance structure that is consistent with ethical, legal and social requirements; III) a set of policies and procedures that ensure operation and maintenance of the repository in a responsible and accountable manner. As of 2015 there were 23 HVP Country Nodes.
Beyond the genomics blueprint: the 4th Human Variome Project Meeting, UNESCO, Paris, 2012
Maija R.J. Kohonen-Corish MSc, PhD et al.
The Human Variome Project. - PubMed - NCBI
Burn J and Watson M
What is the Human Variome Project?