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. 2016 Sep 15;1(1):138-147.
doi: 10.1139/facets-2016-0002.

Evolving data access policy: The Canadian context

Stephanie O M Dyke  1 , Katie M Saulnier  1 , Tomi Pastinen  2 , Guillaume Bourque  2 , Yann Joly  1
Affiliations

Evolving data access policy: The Canadian context

Stephanie O M Dyke et al. Facets (Ott). .

Abstract

In setting up a data access policy to share controlled access data from the McGill Epigenomics Mapping Centre (EMC), an International Human Epigenome Consortium (IHEC) partner project, we encountered ethical and legal challenges that are likely to be relevant to other researchers sharing data, especially from Canadian projects. We discuss our solutions to the following data-sharing challenges, based on comparative legal and policy analysis: (1) providing access to data to a growing number of researchers; (2) maintaining Canadian privacy standards while sharing controlled access data internationally; (3) freedom of information requests; and (4) providing more incentives for researchers to share pre-publication data.

Keywords: consent; controlled access; data access; data sharing; ethics; privacy.

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Conflict of interest statement

YJ is currently serving as a Subject Editor for FACETS, but was not involved in review or editorial decisions regarding this manuscript.

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