title: From the principles of genomic data sharing to the practices of data access committees.
abstract: Sharing genomic research data through controlled-access databases has increased in recent years. Policymakers and funding organizations endorse genomic data sharing in order to optimize the use of public funds and to increase the statistical power of databases. Well-established data access arrangements and data access committees (DACs)-responsible for reviewing and managing requests for access to genomic databases-are therefore central for implementing the policies and principles of data sharing. This article aims to investigate the functionality of DACs through the perspective of existing practices.
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, McGill University, Montreal, QC, Canada.
authors.forename: Bartha Maria
authors.initials: BM
authors.lastname: Knoppers
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: D023281:Genomics / Q000379:methods* / Q000592:standards; D017408:Guidelines as Topic; D006801:Humans; D033181:Information Dissemination / Q000941:ethics / Q000379:methods*