title: Practical guidelines addressing ethical issues pertaining to the curation of human locus-specific variation databases (LSDBs).
abstract: More than 1,000 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The initiators of the Human Variome Project recently recognized that having access to some of the immense resources of unpublished information already present in diagnostic laboratories would provide critical data to help manage genetic disorders.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 that 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 Organization (HUGO).
authors.affiliation: Department of Genetics, Evolution and Environment, University College London, London, United Kingdom. s.povey@ucl.ac.uk
authors.forename: Sue
authors.initials: S
authors.lastname: Povey
authors.forename: Aida I
authors.initials: AI
authors.lastname: Al Aqeel
authors.forename: Anne
authors.initials: A
authors.lastname: Cambon-Thomsen
authors.forename: Raymond
authors.initials: R
authors.lastname: Dalgleish
authors.forename: Johan T
authors.initials: JT
authors.lastname: den Dunnen
authors.forename: Helen V
authors.initials: HV
authors.lastname: Firth
authors.forename: Marc S
authors.initials: MS
authors.lastname: Greenblatt
authors.forename: Carol Isaacson
authors.initials: CI
authors.lastname: Barash
authors.forename: Michael
authors.initials: M
authors.lastname: Parker
authors.forename: George P
authors.initials: GP
authors.lastname: Patrinos
authors.forename: Judith
authors.initials: J
authors.lastname: Savige
authors.forename: Maria-Jesus
authors.initials: MJ
authors.lastname: Sobrido
authors.forename: Ingrid
authors.initials: I
authors.lastname: Winship
authors.forename: Richard G H
authors.initials: RG
authors.lastname: Cotton
mesh_terms: D003219:Confidentiality / Q000941:ethics; D030541:Databases, Genetic / Q000941:ethics*; D014644:Genetic Variation; D006801:Humans