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  1. Locating Biobanks in the Canadian Privacy Maze.Katie M. Saulnier & Yann Joly - 2016 - Journal of Law, Medicine and Ethics 44 (1):7-19.
    Although Canada has not yet enacted any biobanking-specific privacy law, guidance and oversight are provided via various federal and provincial health and privacy-related laws as well as via ethics and policy documents. The primary policy document governing health research, the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, provides the framework for the strong role of Research Ethics Boards in Canada, and limits research funding from Canada's three main federal funding agencies to those who agree to adhere to its (...)
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  • Communicating Identifiability Risks to Biobank Donors.T. J. Kasperbauer, Mickey Gjerris, Gunhild Waldemar & Peter Sandøe - 2018 - Cambridge Quarterly of Healthcare Ethics 27 (1):123-136.
    Recent highly publicized privacy breaches in health care and genomics research have led many to question whether current standards of data protection are adequate. Improvements in de-identification techniques, combined with pervasive data sharing, have increased the likelihood that external parties can track individuals across multiple databases. This paper focuses on the communication of identifiability risks in the process of obtaining consent for donation and research. Most ethical discussions of identifiability risks have focused on the severity of the risk and how (...)
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