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

被引:0
作者
Kristin Solum Steinsbekk
Bjørn Kåre Myskja
Berge Solberg
机构
[1] Norwegian University of Science and Technology,Department of Public Health and General Practice
[2] Norwegian University of Science and Technology,Department of Philosophy
来源
European Journal of Human Genetics | 2013年 / 21卷
关键词
broad consent; dynamic consent; biobank; research participation; ethics;
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中图分类号
学科分类号
摘要
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.
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页码:897 / 902
页数:5
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