title: Controlled Access under Review: Improving the Governance of Genomic Data Access.
abstract: In parallel with massive genomic data production, data sharing practices have rapidly expanded over the last decade. To ensure authorized access to data, access review by data access committees (DACs) has been utilized as one potential solution. Here we discuss core elements to be integrated into the fabric of access review by both established and emerging DACs in order to foster fair, efficient, and responsible access to datasets. We particularly highlight the fact that the access review process could be adversely influenced by the potential conflicts of interest of data producers, particularly when they are directly involved in DACs management. Therefore, in structuring DACs and access procedures, possible data withholding by data producers should receive thorough attention.
authors.affiliation: Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, University of Leuven, Leuven, Belgium.
authors.forename: Mahsa
authors.initials: M
authors.lastname: Shabani
authors.affiliation: Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Quebec, Canada.
authors.forename: Stephanie O M
authors.initials: SO
authors.lastname: Dyke
authors.affiliation: Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Quebec, Canada.
authors.forename: Yann
authors.initials: Y
authors.lastname: Joly
authors.affiliation: Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, University of Leuven, Leuven, Belgium.
authors.forename: Pascal
authors.initials: P
authors.lastname: Borry
mesh_terms: D022126:Access to Information; D000818:Animals; D030561:Databases, Nucleic Acid; D016678:Genome; D015894:Genome, Human; D023281:Genomics / Q000379:methods* / Q000639:trends; D017408:Guidelines as Topic; D006801:Humans; D017146:Models, Organizational; D058996:Quality Improvement; D012941:Social Responsibility