IDEAS home Printed from
   My bibliography  Save this article

From consent to institutions: Designing adaptive governance for genomic biobanks


  • O'Doherty, Kieran C.
  • Burgess, Michael M.
  • Edwards, Kelly
  • Gallagher, Richard P.
  • Hawkins, Alice K.
  • Kaye, Jane
  • McCaffrey, Veronica
  • Winickoff, David E.


Biobanks are increasingly hailed as powerful tools to advance health research. The social and ethical challenges associated with the implementation and operation of biobanks are equally well-documented. One of the proposed solutions to these challenges involves trading off a reduction in the specificity of informed consent protocols with an increased emphasis on governance. However, little work has gone into formulating what such governance might look like. In this paper, we suggest four general principles that should inform biobank governance and illustrate the enactment of these principles in a proposed governance model for a particular population-scale biobank, the British Columbia (BC) Generations Project. We begin by outlining four principles that we see as necessary for informing sustainable and effective governance of biobanks: (1) recognition of research participants and publics as a collective body, (2) trustworthiness, (3) adaptive management, and (4) fit between the nature of a particular biobank and the specific structural elements of governance adopted. Using the BC Generations Project as a case study, we then offer as a working model for further discussion the outlines of a proposed governance structure enacting these principles. Ultimately, our goal is to design an adaptive governance approach that can protect participant interests as well as promote effective translational health sciences.

Suggested Citation

  • O'Doherty, Kieran C. & Burgess, Michael M. & Edwards, Kelly & Gallagher, Richard P. & Hawkins, Alice K. & Kaye, Jane & McCaffrey, Veronica & Winickoff, David E., 2011. "From consent to institutions: Designing adaptive governance for genomic biobanks," Social Science & Medicine, Elsevier, vol. 73(3), pages 367-374, August.
  • Handle: RePEc:eee:socmed:v:73:y:2011:i:3:p:367-374

    Download full text from publisher

    File URL:
    Download Restriction: Full text for ScienceDirect subscribers only

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    1. Haddow, Gillian & Laurie, Graeme & Cunningham-Burley, Sarah & Hunter, Kathryn G., 2007. "Tackling community concerns about commercialisation and genetic research: A modest interdisciplinary proposal," Social Science & Medicine, Elsevier, vol. 64(2), pages 272-282, January.
    Full references (including those not matched with items on IDEAS)


    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.

    Cited by:

    1. Nicol, Dianne & Critchley, Christine & McWhirter, Rebekah & Whitton, Tess, 2016. "Understanding public reactions to commercialization of biobanks and use of biobank resources," Social Science & Medicine, Elsevier, vol. 162(C), pages 79-87.
    2. Douglas, Conor M.W. & Wilcox, Elizabeth & Burgess, Michael & Lynd, Larry D., 2015. "Why orphan drug coverage reimbursement decision-making needs patient and public involvement," Health Policy, Elsevier, vol. 119(5), pages 588-596.


    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:73:y:2011:i:3:p:367-374. See general information about how to correct material in RePEc.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: (Dana Niculescu). General contact details of provider: .

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service hosted by the Research Division of the Federal Reserve Bank of St. Louis . RePEc uses bibliographic data supplied by the respective publishers.