caa a22 4500 445860871 CHVBK 20180317145442.0 cr unu---uuuuu 170323e20110901xx s 000 0 eng 10.1007/s00439-011-1049-y doi (NATIONALLICENCE)springer-10.1007/s00439-011-1049-y Tassé Anne McGill University, 740, Dr Penfield Ave. suite 5202, H3A 1A4, Montreal, QC, Canada aut Biobanking and deceased persons [Elektronische Daten] [Anne Tassé] 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. Springer-Verlag, 2011 Human Genetics Springer-Verlag 130/3(2011-09-01), 415-423 0340-6717 130:3<415 2011 130 439 https://doi.org/10.1007/s00439-011-1049-y text/html Onlinezugriff via DOI 1 review-article jats NATIONALLICENCE 856 40 https://doi.org/10.1007/s00439-011-1049-y text/html Onlinezugriff via DOI NATIONALLICENCE 100 1- Tassé Anne McGill University, 740, Dr Penfield Ave. suite 5202, H3A 1A4, Montreal, QC, Canada aut NATIONALLICENCE 773 0- Human Genetics Springer-Verlag 130/3(2011-09-01), 415-423 0340-6717 130:3<415 2011 130 439 Metadata rights reserved Springer special CC-BY-NC licence nationallicence BK010053 XK010053 XK010000 NATIONALLICENCE NATIONALLICENCE NL-springer