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Publication Details
AFRICAN RESEARCH NEXUS
SHINING A SPOTLIGHT ON AFRICAN RESEARCH
biochemistry, genetics and molecular biology
Practical guidelines addressing ethical issues pertaining to the curation of human locus-specific variation databases (LSDBs)
Human Mutation, Volume 31, No. 11, Year 2010
Notification
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Description
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The initiators of the Human Variome Project recently recognized that having access to some of the immense resources of unpublished information already present in diagnostic laboratories would provide critical data to help manage genetic disorders.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). © 2010 Wiley-Liss, Inc.
Authors & Co-Authors
Povey, Susanne M.
United Kingdom, London
University College London
Al-Aqeel, Aida Imbrahim
South Africa, Riyadh
King Faisal Specialist Hospital
Cambon-Thomsen, Anne
France, Toulouse
Université Toulouse Iii - Paul Sabatier
Dalgleish, Raymond
United Kingdom, Leicester
University of Leicester
den Dunnen, Johan T.
Netherlands, Leiden
Leids Universitair Medisch Centrum
Firth, Helen V.
United Kingdom, Cambridge
Addenbrooke's Hospital
Greenblatt, Marc S.
United States, Burlington
University of Vermont Larner College of Medicine
Barash, Carol Isaacson
United States, Boston
Ethics and Policy Consulting, Inc.
Parker, Michael James
United Kingdom, Oxford
University of Oxford Medical Sciences Division
Patrinos, George P.
Greece, Patra
School of Health Sciences
Savige, Judith
Australia, Melbourne
University of Melbourne
Sobrido, Maria Jesus
Spain, Santiago de Compostela
Fundación Pública Galega de Medicina Xenómica
Spain, Madrid
Centro de Investigación Biomédica en Red de Enfermedades Raras
Winship, Ingrid M.
Australia, Melbourne
University of Melbourne
Cotton, Richard G.H.
Australia, Melbourne
Faculty of Medicine, Dentistry and Health Sciences
Australia, Melbourne
The Florey
Statistics
Citations: 37
Authors: 14
Affiliations: 15
Identifiers
Doi:
10.1002/humu.21339
ISSN:
10597794
e-ISSN:
10981004
Research Areas
Genetics And Genomics
Health System And Policy