title: Epigenome data release: a participant-centered approach to privacy protection.
abstract: Large-scale epigenome mapping by the NIH Roadmap Epigenomics Project, the ENCODE Consortium and the International Human Epigenome Consortium (IHEC) produces genome-wide DNA methylation data at one base-pair resolution. We examine how such data can be made open-access while balancing appropriate interpretation and genomic privacy. We propose guidelines for data release that both reduce ambiguity in the interpretation of open-access data and limit immediate access to genetic variation data that are made available through controlled access.
authors.affiliation: Centre of Genomics and Policy, Department of Human Genetics, McGill University, Montreal, QC, H3A 0G1, Canada. Stephanie.Dyke@mcgill.ca.
authors.forename: Stephanie O M
authors.initials: SO
authors.lastname: Dyke
authors.affiliation: Department of Human Genetics, McGill University and Genome Quebec Innovation Centre, Montreal, QC, H3A 0G1, Canada.
authors.forename: Warren A
authors.initials: WA
authors.lastname: Cheung
authors.affiliation: Centre of Genomics and Policy, Department of Human Genetics, McGill University, Montreal, QC, H3A 0G1, Canada.
authors.forename: Yann
authors.initials: Y
authors.lastname: Joly
authors.affiliation: Institute of Human Genetics, University Hospital Schleswig-Holstein, Campus Kiel & Christian-Albrechts-University Kiel, 24105, Kiel, Germany.
authors.forename: Ole
authors.initials: O
authors.lastname: Ammerpohl
authors.affiliation: Saarland University, 66123, Saarbrücken, Germany.
authors.forename: Pavlo
authors.initials: P
authors.lastname: Lutsik
authors.affiliation: Institute for Bioethics, Health Policy and Law, University of Louisville School of Medicine, Louisville, KY, 40202, USA.
authors.forename: Mark A
authors.initials: MA
authors.lastname: Rothstein
authors.affiliation: Department of Human Genetics, McGill University and Genome Quebec Innovation Centre, Montreal, QC, H3A 0G1, Canada.
authors.forename: Maxime
authors.initials: M
authors.lastname: Caron
authors.affiliation: Department of Human Genetics, McGill University and Genome Quebec Innovation Centre, Montreal, QC, H3A 0G1, Canada.
authors.forename: Stephan
authors.initials: S
authors.lastname: Busche
authors.affiliation: Department of Human Genetics, McGill University and Genome Quebec Innovation Centre, Montreal, QC, H3A 0G1, Canada.
authors.forename: Guillaume
authors.initials: G
authors.lastname: Bourque
authors.affiliation: Department of Medical Sciences, Science for Life Laboratory, Uppsala University, SE-751 85, Uppsala, Sweden.
authors.forename: Lars
authors.initials: L
authors.lastname: Rönnblom
authors.affiliation: European Molecular Biology Laboratory, European Bioinformatics Institute, Wellcome Genome Campus, Hinxton, Cambridge, CB10 1SD, UK.
authors.forename: Paul
authors.initials: P
authors.lastname: Flicek
authors.affiliation: Medical Genomics, UCL Cancer Institute, University College London, London, WC1E 6BT, UK.
authors.forename: Stephan
authors.initials: S
authors.lastname: Beck
authors.affiliation: Centre for High-Throughput Biology, University of British Columbia and Canada's Michael Smith Genome Sciences Centre, BC Cancer Agency, Vancouver, British Columbia, V5Z 4S6, Canada.
authors.forename: Martin
authors.initials: M
authors.lastname: Hirst
authors.affiliation: Department of Molecular Biology, RIMLS, Faculty of Science, Radboud University, 6500 HB, Nijmegen, The Netherlands.
authors.forename: Henk
authors.initials: H
authors.lastname: Stunnenberg
authors.affiliation: Institute of Human Genetics, University Hospital Schleswig-Holstein, Campus Kiel & Christian-Albrechts-University Kiel, 24105, Kiel, Germany.
authors.forename: Reiner
authors.initials: R
authors.lastname: Siebert
authors.affiliation: Saarland University, 66123, Saarbrücken, Germany.
authors.forename: Jörn
authors.initials: J
authors.lastname: Walter
authors.affiliation: Department of Human Genetics, McGill University and Genome Quebec Innovation Centre, Montreal, QC, H3A 0G1, Canada. Tomi.Pastinen@mcgill.ca.
authors.forename: Tomi
authors.initials: T
authors.lastname: Pastinen
mesh_terms: D019175:DNA Methylation; D000068240:Data Anonymization; D044127:Epigenesis, Genetic; D057890:Epigenomics; D030661:Genetic Privacy; D014644:Genetic Variation; D059014:High-Throughput Nucleotide Sequencing; D006801:Humans; D017422:Sequence Analysis, DNA