title: Towards a data sharing Code of Conduct for international genomic research.
abstract: Data sharing is increasingly regarded as an ethical and scientific imperative that advances knowledge and thereby respects the contributions of the participants. Because of this and the ever-increasing amount of data access requests currently filed around the world, three groups have decided to develop data sharing principles specific to the context of collaborative international genomics research. These groups are: the international Public Population Project in Genomics (P3G), an international consortium of projects partaking in large-scale genetic epidemiological studies and biobanks; the European Network for Genetic and Genomic Epidemiology (ENGAGE), a research project aiming to translate data from large-scale epidemiological research initiatives into relevant clinical information; and the Centre for Health, Law and Emerging Technologies (HeLEX). We propose seven different principles and a preliminary international data sharing Code of Conduct for ongoing discussion.
authors.affiliation: Department of Human Genetics, McGill University, 740 Dr Penfield Avenue, Montreal, Quebec H3A 1A4, Canada. bartha.knoppers@mcgill.ca.
authors.forename: Bartha Maria
authors.initials: BM
authors.lastname: Knoppers
authors.forename: Jennifer R
authors.initials: JR
authors.lastname: Harris
authors.forename: Anne Marie
authors.initials: AM
authors.lastname: Tassé
authors.forename: Isabelle
authors.initials: I
authors.lastname: Budin-Ljøsne
authors.forename: Jane
authors.initials: J
authors.lastname: Kaye
authors.forename: Mylène
authors.initials: M
authors.lastname: Deschênes
authors.forename: Ma'n H
authors.initials: MH
authors.lastname: Zawati