Biobanking and deceased persons |
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Authors: | Anne Marie Tassé |
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Institution: | (1) McGill University, 740, Dr Penfield Ave. suite 5202, Montreal, QC, H3A 1A4, Canada |
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Abstract: | Early biomedical research focused primarily on the study of specific diseases or sets of diseases within small groups of living
research participants. Accordingly, the first ethical frameworks governing biomedical research addressed short-term, limited-scope
research involving living research participants. Due to recent interest in longitudinal population studies and biobanking,
research is increasingly long term. This shift raises several ethical and legal issues concerning the impact of a participant’s
death on research. This paper offers an overview of these issues in the context of longitudinal biobanking genetic research.
Our first part outlines the legal and ethical frameworks that govern the effect of the participants’ death on consent. This
will be followed by an analysis of the legal and ethical frameworks that govern the secondary use of deceased participants’
data and samples and the return of deceased participants’ individual research results to biological family members. In our
second part, we will review the current literature and discuss the above mentioned issues using the bioethics “principlism”
theory before concluding. |
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Keywords: | |
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