Registered access: a 'Triple-A' approach.
We propose a standard model for a novel data access tier - registered access - to facilitate access to data that cannot be published in open access archives owing to ethical and legal risk. Based on an analysis of applicable research ethics and other legal and administrative frameworks, we discuss the general characteristics of this Registered Access Model, which would comprise a three-stage approval process: Authentication, Attestation and Authorization. We are piloting registered access with the Demonstration Projects of the Global Alliance for Genomics and Health for which it may provide a suitable mechanism for access to certain data types and to different types of data users.
Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC, Canada.
Stephanie O M
SO
Dyke
Public Population Project in Genomics and Society (P3G), Montreal, QC, Canada.
Emily
E
Kirby
University of Leuven, Leuven, Belgium.
Mahsa
M
Shabani
Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC, Canada.
Adrian
A
Thorogood
Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, Osaka, Japan.
Kazuto
K
Kato
Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC, Canada.
Bartha M
BM
Knoppers
D022126:Access to Information; D030541:Databases, Genetic; D033181:Information Dissemination; D012637:Security Measures / Q000458:organization & administration / Q000592:standards*
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