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Is Consent Required for Genetic Research in a Death Investigation System in Canada?
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- Author / Creator
- Boone, Sharon
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A two-step consent process is required for genetic research performed on decedents that fall within the jurisdiction of a statutory death investigation system in Canada. Removal of tissue and organs necessary to fulfill the mandate of a death investigation does not require consent from the decedent’s legal next of kin, which if mandatory, would undermine the death investigation process. Consent is needed from either the decedent in life, or his biological next of kin after death for the use of the body, organs and tissue for subsequent genetic research purposes. Informed consent, including the risks associated with breach of the decedent’s genetic privacy, should also be obtained as part of the consent process. The need for consent is grounded in the principle of personal autonomy, and the dignity of the individual in life and death, supported by academic literature and Canadian jurisprudence. Vital to the integrity and function of both death investigation systems and genetic research is public trust, which can be achieved by balancing the need for genetic research with the individual’s right to informational privacy in their genetic information, both in life and death, through policy and governance.
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- Subjects / Keywords
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- Graduation date
- Fall 2019
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- Type of Item
- Thesis
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- Degree
- Master of Laws
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- License
- Permission is hereby granted to the University of Alberta Libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. Where the thesis is converted to, or otherwise made available in digital form, the University of Alberta will advise potential users of the thesis of these terms. The author reserves all other publication and other rights in association with the copyright in the thesis and, except as herein before provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission.