title: Developing registries of volunteers: key principles to manage issues regarding personal information protection.
abstract: Much biomedical research cannot be performed without recruiting human subjects. Increasingly, volunteer registries are being developed to assist researchers with this challenging task. Yet, volunteer registries raise confidentiality issues. Having recently developed a registry of volunteers, the authors searched for normative guidance on how to implement the principle of confidentiality. The authors found that the protection of confidentiality in registries are based on the 10 key elements which are elaborated in detail in the Canadian Standards Association Model Code. This paper describes how these 10 detailed key principles can be used during the developmental stages of volunteer registries.
authors.affiliation: Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University, Montréal, QC, Canada. emmanuelle.levesque@mcgill.ca
authors.forename: Emmanuelle
authors.initials: E
authors.lastname: Lévesque
authors.forename: Dominic
authors.initials: D
authors.lastname: Leclerc
authors.forename: Jack
authors.initials: J
authors.lastname: Puymirat
authors.forename: Bartha Maria
authors.initials: BM
authors.lastname: Knoppers
mesh_terms: D035843:Biomedical Research; D003219:Confidentiality; D003625:Data Collection / Q000592:standards; D006801:Humans; D016247:Information Storage and Retrieval / Q000592:standards*; D018579:Patient Selection / Q000941:ethics*; D012042:Registries / Q000592:standards*