Format

Send to

Choose Destination
Eur J Hum Genet. 2016 Dec;24(12):1676-1680. doi: 10.1038/ejhg.2016.115. Epub 2016 Sep 28.

Registered access: a 'Triple-A' approach.

Author information

1
Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, QC, Canada.
2
Public Population Project in Genomics and Society (P3G), Montreal, QC, Canada.
3
University of Leuven, Leuven, Belgium.
4
Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, Osaka, Japan.

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.

PMID:
27677416
PMCID:
PMC5117919
DOI:
10.1038/ejhg.2016.115
[Indexed for MEDLINE]
Free PMC Article

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.

Supplemental Content

Full text links

Icon for Nature Publishing Group Icon for PubMed Central
Loading ...
Support Center