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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This research was supported through funds from the European Community’s Seventh Framework Programme (FP7/2007-2013) ENGAGE Consortium, grant agreement HEALTH-F4-2007-201413 and the European Community’s Seventh Framework Programme (FP7/2010-2015) BioSHaRE grant agreement FP7-HEALTH 261433. The author would like to thank Michael Le Huynh for assistance in editing the text.
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The author declares no conflict of interest.
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Tassé, A.M. Biobanking and deceased persons. Hum Genet 130, 415–423 (2011). https://doi.org/10.1007/s00439-011-1049-y