Abstract
More than 1000 web-based locus-specific variation databases (LSDBs) are listed on the website of the Human Genetic Variation Society (HGVS). These individual efforts which often relate phenotype to genotype are a valuable source of information for clinicians, patients and their families as well as for basic research. The initiators of the Human Variome Project recently recognised that having access to some of the immense resources of unpublished information already present in diagnostic laboratories would provide critical data to help manage genetic disorders. However, there are significant ethical issues involved in sharing these data worldwide An international working group presents second generation guidelines addressing ethical issues relating to the curation of human LSDBs which provide information via a web-based interface. It is intended that these should help current and future curators and may also inform the future decisions of ethics committees and legislators . These guidelines have been reviewed by the Ethics committee of the Human Genome Organisation (HUGO).