Abstract
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.
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Acknowledgments
MZ is funded by the European Council’s Erasmus Mundus Scholarship and the Canadian Partnership for Tomorrow Project; PB is funded by the Research Fund Flanders (FWO); HCH is funded by the European Commission FP7 Marie Curie initiative. The authors would like to thank Amélie Rioux, Michael Le Huynh and Adrian Thorogood for their assistance.
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The authors declare that they have no conflict of interests.
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Zawati, M.H., Borry, P. & Howard, H.C. Closure of population biobanks and direct-to-consumer genetic testing companies. Hum Genet 130, 425–432 (2011). https://doi.org/10.1007/s00439-011-1019-4
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DOI: https://doi.org/10.1007/s00439-011-1019-4