Registered access: a 'Triple-A' approach.
Identifieur interne : 000019 ( Main/Exploration ); précédent : 000018; suivant : 000020Registered access: a 'Triple-A' approach.
Auteurs : Stephanie O M. Dyke [Canada] ; Emily Kirby [Canada] ; Mahsa Shabani [Belgique] ; Adrian Thorogood [Canada] ; Kazuto Kato [Japon] ; Bartha M. Knoppers [Canada]Source :
- European journal of human genetics : EJHG [ 1476-5438 ] ; 2016.
Abstract
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.European Journal of Human Genetics advance online publication, 28 September 2016; doi:10.1038/ejhg.2016.115.
DOI: 10.1038/ejhg.2016.115
PubMed: 27677416
Affiliations:
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Le document en format XML
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<front><div type="abstract" xml:lang="en">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.European Journal of Human Genetics advance online publication, 28 September 2016; doi:10.1038/ejhg.2016.115.</div>
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