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Developing registries of volunteers: key principles to manage issues regarding personal information protection
  1. Emmanuelle Lévesque1,
  2. Dominic Leclerc2,
  3. Jack Puymirat2,
  4. Bartha Maria Knoppers1
  1. 1Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University, Montréal, Canada
  2. 2Human Genetics Research Unit, Research Centre, CHUQ University Hospital, Laval University, Québec, Canada
  1. Correspondence to Emmanuelle Lévesque, Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University, 740, Dr Penfield Avenue, Room 5202, Montréal (QC) H3A 1A4, Canada; emmanuelle.levesque{at}mcgill.ca

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.

  • Ethics
  • research [K01.316.366]
  • bioethics [k01.316.070]
  • registries [l01.280.950]
  • information management [l01.399]
  • research subjects [M01.774]
  • scientific research
  • codes of/position statements on professional ethics
  • confidentiality/privacy

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Footnotes

  • Funding Network of Applied Genetic Medicine (3175, Côte-Ste-Catherine, Montréal, Canada) and French Association Against Myopathies (1, Internationale Avenue - 91002 Evry, France).

  • Competing interests None.

  • Ethics approval This study was conducted with the approval of the CHUQ University Hospital.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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