Ubaka Ogbogu, Sarah Burningham, & Timothy Caulfield, “The Right to Control and Access Genetic Research Information: Does McInerney Offer a Way Out of the Consent/Withdrawal Conundrum?”

Working Abstract

Genetic and cell-based research raises many ethical and legal challenges, including the question of whether individuals who donate biological materials for research purposes can withdraw consent to the use of their materials at any point in time. In this article, we explore whether Canadian judicial doctrine provides any guidance on the nature and scope of an individual’s legal right to access and control the use and disclosure of information derived from human biological materials donated for research purposes. Specifically, we rely on the Supreme Court of Canada’s decision in McInerney v MacDonald to argue that Canadian case law embraces a robust and ongoing right of access to and control over genetic information that is grounded in the nature and character of genetic information, personal autonomy, and fiduciary law. We contend further that this right of access and control includes a meaningful and enduring right to withdraw consent to research use of biological materials and associated genetic information.

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