Developing registries of volunteers: key principles to manage issues regarding personal information protection

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 aut...

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Bibliographic Details
Authors: Lévesque, Emmanuelle (Author) ; Leclerc, Dominic (Author) ; Puymirat, Jack (Author) ; Knoppers, Bartha Maria (Author)
Format: Electronic Article
Language:English
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Published: BMJ Publ. 2010
In: Journal of medical ethics
Year: 2010, Volume: 36, Issue: 11, Pages: 712-714
Online Access: Volltext (JSTOR)
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Summary: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.
ISSN:1473-4257
Contains:Enthalten in: Journal of medical ethics
Persistent identifiers:DOI: 10.1136/jme.2010.036715