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Guideline
. 2010 Nov;31(11):1179-84.
doi: 10.1002/humu.21339.

Practical guidelines addressing ethical issues pertaining to the curation of human locus-specific variation databases (LSDBs)

Sue Povey  1 , Aida I Al Aqeel, Anne Cambon-Thomsen, Raymond Dalgleish, Johan T den Dunnen, Helen V Firth, Marc S Greenblatt, Carol Isaacson Barash, Michael Parker, George P Patrinos, Judith Savige, Maria-Jesus Sobrido, Ingrid Winship, Richard G H Cotton; Ethics Committee of the Human Genome Organization (HUGO)
Affiliations
Free PMC article
Guideline

Practical guidelines addressing ethical issues pertaining to the curation of human locus-specific variation databases (LSDBs)

Sue Povey et al. Hum Mutat. 2010 Nov.
Free PMC article

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The initiators of the Human Variome Project recently recognized that having access to some of the immense resources of unpublished information already present in diagnostic laboratories would provide critical data to help manage genetic disorders.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).

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