Human Genetics

, 130:425

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

  • Ma’n H. Zawati
  • Pascal Borry
  • Heidi Carmen Howard
Review Paper

DOI: 10.1007/s00439-011-1019-4

Cite this article as:
Zawati, M.H., Borry, P. & Howard, H.C. Hum Genet (2011) 130: 425. doi:10.1007/s00439-011-1019-4

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.

Copyright information

© Springer-Verlag 2011

Authors and Affiliations

  • Ma’n H. Zawati
    • 1
  • Pascal Borry
    • 2
    • 3
    • 4
  • Heidi Carmen Howard
    • 2
    • 5
  1. 1.Centre of Genomics and PolicyMcGill UniversityMontréalCanada
  2. 2.Centre for Biomedical Ethics and LawKatholieke Universiteit LeuvenLeuvenBelgium
  3. 3.Department of Clinical Genetics, EMGO Institute for Health and Care ResearchVU University Medical CenterAmsterdamThe Netherlands
  4. 4.Department of Medical Humanities, EMGO Institute for Health and Care ResearchVU University Medical CenterAmsterdamThe Netherlands
  5. 5.The Institute for Bioethics and Medical EthicsUniversity of BaselBaselSwitzerland

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