caa a22 4500 445860855 CHVBK 20190327083712.0 cr unu---uuuuu 170323e20110901xx s 000 0 eng 10.1007/s00439-011-1019-4 doi (NATIONALLICENCE)springer-10.1007/s00439-011-1019-4 Closure of population biobanks and direct-to-consumer genetic testing companies [Elektronische Daten] [Ma'n Zawati, Pascal Borry, Heidi Howard] Genetic research gained new momentum with the completion of the Human Genome Project in 2003. Formerly centered on the investigation of single-gene disorders, genetic research is increasingly targeting common complex diseases and in doing so is studying the whole genome, the environment and its impact on genomic variation. Consequently, biobanking initiatives have emerged around the world as a tool to sustain such progress. Whether they are small scale or longitudinal, public or private, commercial or non-commercial, biobanks should consider the possibility of closure. Interestingly, while raising important ethical issues, this topic has hardly been explored in the literature. Indeed, ethical issues associated with sale, insolvency, end of funding, or transfer of materials to other entities (which are all issues either related to or possible consequences of closure) are seldom the subject of discussion. In an attempt to fill this gap, this paper will discuss—using population and direct-to-consumer (DTC) genetic testing companies' biobanks as case studies—(1) international and national normative documents addressing the issue of closure and (2) the internal policies of population biobanks and DTC genetic testing companies. The analysis will inform the debate on biobank closure and elucidate the underlying ethical issues, which include, but are not limited to informed consent, storage and privacy. Springer-Verlag, 2011 Zawati Ma'n Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, Room 5209, H3A 1A4, Montréal, QC, Canada aut Borry Pascal Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Kapucijnenvoer 35, BOX 7001, 3000, Leuven, Belgium aut Howard Heidi Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Kapucijnenvoer 35, BOX 7001, 3000, Leuven, Belgium aut Human Genetics Springer-Verlag 130/3(2011-09-01), 425-432 0340-6717 130:3<425 2011 130 439 https://doi.org/10.1007/s00439-011-1019-4 text/html Onlinezugriff via DOI 1 review-article jats NATIONALLICENCE 856 40 https://doi.org/10.1007/s00439-011-1019-4 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Zawati Ma'n Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, Room 5209, H3A 1A4, Montréal, QC, Canada aut NATIONALLICENCE 700 1- Borry Pascal Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Kapucijnenvoer 35, BOX 7001, 3000, Leuven, Belgium aut NATIONALLICENCE 700 1- Howard Heidi Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Kapucijnenvoer 35, BOX 7001, 3000, Leuven, Belgium aut NATIONALLICENCE 773 0- Human Genetics Springer-Verlag 130/3(2011-09-01), 425-432 0340-6717 130:3<425 2011 130 439 Metadata rights reserved Springer special CC-BY-NC licence nationallicence BK010053 XK010053 XK010000 NATIONALLICENCE NATIONALLICENCE NL-springer