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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
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author Dyke, Stephanie O M
Kirby, Emily
Shabani, Mahsa
Thorogood, Adrian
Kato, Kazuto
Knoppers, Bartha M
author_facet Dyke, Stephanie O M
Kirby, Emily
Shabani, Mahsa
Thorogood, Adrian
Kato, Kazuto
Knoppers, Bartha M
author_sort Dyke, Stephanie O M
collection PubMed
description 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.
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spelling pubmed-51179192016-12-10 Registered access: a ‘Triple-A' approach Dyke, Stephanie O M Kirby, Emily Shabani, Mahsa Thorogood, Adrian Kato, Kazuto Knoppers, Bartha M Eur J Hum Genet Article 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. Nature Publishing Group 2016-12 2016-09-28 /pmc/articles/PMC5117919/ /pubmed/27677416 http://dx.doi.org/10.1038/ejhg.2016.115 Text en Copyright © 2016 The Author(s) http://creativecommons.org/licenses/by-nc-sa/4.0/ This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. The images or other third party material in this article are included in the article's Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-sa/4.0/
spellingShingle Article
Dyke, Stephanie O M
Kirby, Emily
Shabani, Mahsa
Thorogood, Adrian
Kato, Kazuto
Knoppers, Bartha M
Registered access: a ‘Triple-A' approach
title Registered access: a ‘Triple-A' approach
title_full Registered access: a ‘Triple-A' approach
title_fullStr Registered access: a ‘Triple-A' approach
title_full_unstemmed Registered access: a ‘Triple-A' approach
title_short Registered access: a ‘Triple-A' approach
title_sort registered access: a ‘triple-a' approach
topic Article
url 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
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