The "GeneTrustee": a universal identification system that ensures privacy and confidentiality for human genetic databases

This article describes a generic model for access to samples and information in human genetic databases. The model utilises a "GeneTrustee", a third-party intermediary independent of the subjects and of the investigators or database custodians. The GeneTrustee model has been implemented su...

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Bibliographic Details
Published inJournal of law and medicine Vol. 10; no. 4; p. 506
Main Authors Burnett, Leslie, Barlow-Stewart, Kris, Proos, Anné L, Aizenberg, Harry
Format Journal Article
LanguageEnglish
Published Australia 01.05.2003
Subjects
Confidentiality
Databases, Genetic
Genetic Privacy
Genetic Research - legislation & jurisprudence
Humans
Medical Records - legislation & jurisprudence
Models, Theoretical
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Summary:This article describes a generic model for access to samples and information in human genetic databases. The model utilises a "GeneTrustee", a third-party intermediary independent of the subjects and of the investigators or database custodians. The GeneTrustee model has been implemented successfully in various community genetics screening programs and has facilitated research access to genetic databases while protecting the privacy and confidentiality of research subjects. The GeneTrustee model could also be applied to various types of non-conventional genetic databases, including neonatal screening Guthrie card collections, and to forensic DNA samples.
ISSN:1320-159X