RT Journal Article
SR Electronic
T1 Developing registries of volunteers: key principles to manage issues regarding personal information protection
JF Journal of Medical Ethics
JO J Med Ethics
FD BMJ Publishing Group Ltd and Institute of Medical Ethics
SP 712
OP 714
DO 10.1136/jme.2010.036715
VO 36
IS 11
A1 Emmanuelle Lévesque
A1 Dominic Leclerc
A1 Jack Puymirat
A1 Bartha Maria Knoppers
YR 2010
UL http://jme.bmj.com/content/36/11/712.abstract
AB 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.