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Locus‐specific databases: from ethical principles to practice
Author(s) -
Cotton Richard G. H.,
Sallée Clémentine,
Knoppers Bartha M.
Publication year - 2005
Publication title -
human mutation
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.981
H-Index - 162
eISSN - 1098-1004
pISSN - 1059-7794
DOI - 10.1002/humu.20245
Subject(s) - hum , biology , clinical practice , relevance (law) , genetic data , ethical issues , engineering ethics , medicine , family medicine , political science , population , environmental health , law , engineering , art , performance art , art history
Locus‐specific databases (LSDBs) play an essential role in clinical care and research. They differ from traditional genetic databases in that they propose to place the mutations of “anonymized” patients directly on the World Wide Web. The proliferation of ethical guidelines and legal requirements affects the rapid and free transmission of clinical data, which is vital for both the daily management of patients and research into better diagnostics and treatment. This paper proposes a review of ethical principles endorsed by international instruments that are of particular relevance to LSDBs. It aims to translate them into 12 proposed practical guidelines that LSDB curators can use in collecting data for clinical research. Perhaps these guideposts will serve as a first step toward translating principles into practice. Hum Mutat 26(5), 489–493, 2005. © 2005 Wiley‐Liss, Inc.