title: The "GeneTrustee": a universal identification system that ensures privacy and confidentiality for human genetic databases.
abstract: 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.
authors.affiliation: Institute of Community Genetics, Pacific Laboratory Medicine Services (PaLMS), Northern Sydney Health, Kolling Institute of Medical Research, University of Sydney, Australia. Lburnett@med.usyd.edu.au
authors.forename: Leslie
authors.initials: L
authors.lastname: Burnett
authors.forename: Kris
authors.initials: K
authors.lastname: Barlow-Stewart
authors.forename: Anné L
authors.initials: AL
authors.lastname: Proos
authors.forename: Harry
authors.initials: H
authors.lastname: Aizenberg
mesh_terms: D003219:Confidentiality; D030541:Databases, Genetic; D030661:Genetic Privacy; D036281:Genetic Research / Q000331:legislation & jurisprudence; D006801:Humans; D008499:Medical Records / Q000331:legislation & jurisprudence*; D008962:Models, Theoretical