Please use this identifier to cite or link to this item: http://hdl.handle.net/2381/26649
Title: Practical guidelines addressing ethical issues pertaining to the curation of human locus-specific variation databases (LSDBs)
Authors: Povey, S.
Al Aqeel AI
Cambon-Thomsen, A.
Dalgleish, R.
den Dunnen JT
Firth, H. V.
Greenblatt, M. S.
Barash, C. I.
Parker, M.
Patrinos, G. P.
Savige, J.
Sobrido, M. J.
Winship, I.
Cotton, R. G.
Ethics Committee of the Human Genome Organization (HUGO)
First Published: 28-Oct-2010
Publisher: Wiley for Human Genome Variation Society
Citation: Human Mutation, 2010, 31 (11), pp. 1179-1184
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The initiators of the Human Variome Project recently recognized that having access to some of the immense resources of unpublished information already present in diagnostic laboratories would provide critical data to help manage genetic disorders.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).
DOI Link: 10.1002/humu.21339
eISSN: 1098-1004
Links: http://hdl.handle.net/2381/26649
http://onlinelibrary.wiley.com/doi/10.1002/humu.21339/abstract
Type: Journal Article
Rights: Copyright © 2010 Wiley-Liss, Inc. The file attached to this record is distributed under the Creative Commons “Attribution Non-Commercial No Derivatives” licence, further details of which can be found via the following link: http://creativecommons.org/licenses/by-nc-nd/4.0/
Appears in Collections:Published Articles, Dept. of Genetics

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