title: Evolving data access policy: The Canadian context.
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.
authors.affiliation: Department of Human Genetics, Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, QC H3A 0G1, Canada.
authors.forename: Stephanie O M
authors.initials: SO
authors.lastname: Dyke
authors.affiliation: Department of Human Genetics, Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, QC H3A 0G1, Canada.
authors.forename: Katie M
authors.initials: KM
authors.lastname: Saulnier
authors.affiliation: Department of Human Genetics, Epigenomics Mapping Centre, Faculty of Medicine, McGill University, Montreal, QC H3A 0G1, Canada.
authors.forename: Tomi
authors.initials: T
authors.lastname: Pastinen
authors.affiliation: Department of Human Genetics, Epigenomics Mapping Centre, Faculty of Medicine, McGill University, Montreal, QC H3A 0G1, Canada.
authors.forename: Guillaume
authors.initials: G
authors.lastname: Bourque
authors.affiliation: Department of Human Genetics, Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, QC H3A 0G1, Canada.
authors.forename: Yann
authors.initials: Y
authors.lastname: Joly
keywords: consent; controlled access; data access; data sharing; ethics; privacy