Article

European Journal of Human Genetics (2013) 21, 897–902; doi:10.1038/ejhg.2012.282; published online 9 January 2013

Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?
EJHGOpen

Kristin Solum Steinsbekk1, Bjørn Kåre Myskja2 and Berge Solberg1

  1. 1Department of Public Health and General Practice, Norwegian University of Science and Technology, Trondheim, Norway
  2. 2Department of Philosophy, Norwegian University of Science and Technology, Trondheim, Norway

Correspondence: Dr KS Steinsbekk, Department of Public Health and General Practice, Norwegian University of Science and Technology, NTNU, Trondheim 7491, Norway. Tel: +47 95 27 01 97; E-mail: kristin.steinsbekk@samfunn.ntnu.no

Received 10 September 2012; Revised 24 October 2012; Accepted 15 November 2012
Advance online publication 9 January 2013

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Abstract

In the endeavour of biobank research there is dispute concerning what type of consent and which form of donor–biobank relationship meet high ethical standards. Up until now, a ‘broad consent’ model has been used in many present-day biobank projects. However it has been, by some scholars, deemed as a pragmatic, and not an acceptable ethical solution. Calls for change have been made on the basis of avoidance of paternalism, intentions to fulfil the principle of autonomy, wish for increased user participation, a questioning of the role of experts and ideas advocating reduction of top–down governance. Recently, an approach termed ‘dynamic consent’ has been proposed to meet such challenges. Dynamic consent uses modern communication strategies to inform, involve, offer choices and last but not the least obtain consent for every research projects based on biobank resources. At first glance dynamic consent seems appealing, and we have identified six claims of superiority of this model; claims pertaining to autonomy, information, increased engagement, control, social robustness and reciprocity. However, after closer examination, there seems to be several weaknesses with a dynamic consent approach; among others the risk of inviting people into the therapeutic misconception as well as individualizing the ethical review of research projects. When comparing the two models, broad consent still holds and can be deemed a good ethical solution for longitudinal biobank research. Nevertheless, there is potential for improvement in the broad model, and criticism can be met by adapting some of the modern communication strategies proposed in the dynamic consent approach.

Keywords:

broad consent; dynamic consent; biobank; research participation; ethics