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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 t...

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Detalles Bibliográficos
Autores principales: Dyke, Stephanie O M, Kirby, Emily, Shabani, Mahsa, Thorogood, Adrian, Kato, Kazuto, Knoppers, Bartha M
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Nature Publishing Group 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5117919/
https://www.ncbi.nlm.nih.gov/pubmed/27677416
http://dx.doi.org/10.1038/ejhg.2016.115
Descripción
Sumario: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.