Consent in crisis: the need to reconceptualize consent to tissue banking research

Authors

  • W. Lipworth,

    Corresponding author
    1. 1 Centre for Values, Ethics and the Law in Medicine, University of Sydney and 2Unit for History and Philosophy of Science, University of Sydney, Australia
      Wendy Lipworth, Centre for Values, Ethics and the Law in Medicine, Blackburn Building D06, University of Sydney, NSW 2006, Australia.
      Email: wendylipworth@yahoo.com.au
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  • 1,2 R. Ankeny,

    1. 1 Centre for Values, Ethics and the Law in Medicine, University of Sydney and 2Unit for History and Philosophy of Science, University of Sydney, Australia
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  • and 1,2 I. Kerridge 1,2

    1. 1 Centre for Values, Ethics and the Law in Medicine, University of Sydney and 2Unit for History and Philosophy of Science, University of Sydney, Australia
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  • Funding: None

    Potential conflicts of interest: The Centre for Values, Ethics and the Law in Medicine, University of Sydney, was commissioned by the Department of Surgery, Concord Hospital, to write a position paper on tissue banking ethics. The research reported here is part of a larger project that has been submitted to fulfill the requirements of a Master of Science and represents only the views of the author

Wendy Lipworth, Centre for Values, Ethics and the Law in Medicine, Blackburn Building D06, University of Sydney, NSW 2006, Australia.
Email: wendylipworth@yahoo.com.au

Abstract

The issues surrounding consent to tissue banking research in Australia are complex and have created a forum of intense debate, thus providing a window of opportunity to critically appraise and challenge standard models of consent for research in general and for tissue banking research in particular. The usual practical difficulties associated with meeting the criteria for valid consent to research (including adequate information provision and voluntariness) are amplified in the case of tissue banking research. A number of models, based on widely accepted ethical principles, have been proposed to improve the process of obtaining consent to tissue banking research, all of which assume that the consent of individual tissue donors is needed to meet the criteria for valid consent. Feminist and communitarian theories use many of the same criteria for valid consent but interpret these criteria differently and de-emphasize the importance of individual autonomy as the central criterion for valid consent. An enriched model of consent incorporating feminist and communitarian ideas could satisfy the currently accepted criteria for valid consent while also furthering a broader range of community values.

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