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. 2016 Dec;24(12):1676-1680.
doi: 10.1038/ejhg.2016.115. Epub 2016 Sep 28.

Registered access: a 'Triple-A' approach

Stephanie O M Dyke  1 , Emily Kirby  2 , Mahsa Shabani  3 , Adrian Thorogood  1 , Kazuto Kato  4 , Bartha M Knoppers  1
Affiliations

Registered access: a 'Triple-A' approach

Stephanie O M Dyke et al. Eur J Hum Genet. 2016 Dec.

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.

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Conflict of interest statement

As part of its International Policy interoperability and data Access Clearinghouse (IPAC), the Public Population Project in Genomics and Society (P3G) offers DACO services to the research community.

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