Privacy in Canadian Paediatric Biobanks: A Changing Landscape
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McGill University, Department of Genomics and Policy
Various instruments acknowledge an individual’s right to privacy and confidentiality. In Canada, privacy legislation is comprised of various federal and provincial statutes and regulations, the common law, and constitutional law. Indeed, respect for privacy is, first and foremost, a constitutional principle in Canada. There is no explicit right to privacy in the Canadian Charter of Rights and Freedoms, but as in the United States (through US Supreme Court jurisprudence) there is a recognized penumbral constitutional right to privacy.
Within the ambit of privacy legislation, there are a variety of privacy statutes governing the collection, use and disclosure of personal information and/or health information.
Three main areas were analyzed:
- Personal Information. The term “personal information” is often very broadly defined and may include health-related information generally as well as information related to human biological materials.
- Consent. It is well accepted that obtaining the informed consent of individuals is necessary in research involving human subjects. Given that children do not have the legal capacity to consent to their own inclusion in research, parental consent is needed. Certain privacy statutes explicitly recognize the role of parents or other legally recognized guardians of minors exercising rights regarding the minor’s personal information.
- Research. Recognizing that re-consenting may be impossible in a research context, especially if the research concerns a large population study, privacy legislation often contains a research safety harbour that allows researchers access to personal information absent consent of the individual to whom the information relates.
The application of existing privacy legislation to paediatric biobanks is unclear, as highlighted by the variability in existing laws (Appendix 1) and main policy governing Canadian researchers conducting research under the auspices of an institution receiving federal research funds (Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans).
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OPC Funded Project
This project received funding support through the Office of the Privacy Commissioner of Canada’s Contributions Program. The opinions expressed in the summary and report(s) are those of the authors and do not necessarily reflect those of the Office of the Privacy Commissioner of Canada. Summaries have been provided by the project authors. Please note that the projects appear in their language of origin.
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