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.
- 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
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.
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.
Read the full text or download the PDF:
Other content recommended for you
- Holding personal information in a disease-specific register: the perspectives of people with multiple sclerosis and professionals on consent and access
- Impact of privacy legislation on the number and characteristics of people who are recruited for research: a randomised controlled trial
- Public good, personal privacy: a citizens' deliberation about using medical information for pharmacoepidemiological research
- Implementation of a consent for chart review and contact and its impact in one clinical centre
- A qualitative study of women’s views on medical confidentiality
- Patients' consent preferences for research uses of information in electronic medical records: interview and survey data
- Urban monitoring, evaluation and application of COVID-19 listed vaccine effectiveness: a health code blockchain study
- Extracting information from hospital records: what patients think about consent
- Electrophysiological evaluation of oropharyngeal swallowing in myotonic dystrophy
- Public attitudes to the use in research of personal health information from general practitioners' records: a survey of the Irish general public