Title: Closure of population biobanks and direct-to-consumer genetic testing companies
Authors: Zawati, Ma'n H ×
Borry, Pascal
HOWARD, Heidi #
Issue Date: Jun-2011
Publisher: Springer-Verlag
Series Title: Human Genetics vol:130 issue:3 pages:425-432
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.
ISSN: 0340-6717
Publication status: published
KU Leuven publication type: IT
Appears in Collections:Interfaculty Centre for Biomedial Ethics and Law
× corresponding author
# (joint) last author

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