Review Paper

Human Genetics

, Volume 130, Issue 3, pp 425-432

First online:

Closure of population biobanks and direct-to-consumer genetic testing companies

  • Ma’n H. ZawatiAffiliated withCentre of Genomics and Policy, McGill University Email author 
  • , Pascal BorryAffiliated withCentre for Biomedical Ethics and Law, Katholieke Universiteit LeuvenDepartment of Clinical Genetics, EMGO Institute for Health and Care Research, VU University Medical CenterDepartment of Medical Humanities, EMGO Institute for Health and Care Research, VU University Medical Center
  • , Heidi Carmen HowardAffiliated withCentre for Biomedical Ethics and Law, Katholieke Universiteit LeuvenThe Institute for Bioethics and Medical Ethics, University of Basel

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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.