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

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...

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Autores principales: Steinsbekk, Kristin Solum, Kåre Myskja, Bjørn, Solberg, Berge
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Nature Publishing Group 2013
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3746258/
https://www.ncbi.nlm.nih.gov/pubmed/23299918
http://dx.doi.org/10.1038/ejhg.2012.282
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author Steinsbekk, Kristin Solum
Kåre Myskja, Bjørn
Solberg, Berge
author_facet Steinsbekk, Kristin Solum
Kåre Myskja, Bjørn
Solberg, Berge
author_sort Steinsbekk, Kristin Solum
collection PubMed
description 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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spelling pubmed-37462582013-09-01 Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem? Steinsbekk, Kristin Solum Kåre Myskja, Bjørn Solberg, Berge Eur J Hum Genet Article 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. Nature Publishing Group 2013-09 2013-01-09 /pmc/articles/PMC3746258/ /pubmed/23299918 http://dx.doi.org/10.1038/ejhg.2012.282 Text en Copyright © 2013 Macmillan Publishers Limited http://creativecommons.org/licenses/by-nc-nd/3.0/ This work is licensed under the Creative Commons Attribution-NonCommercial-No Derivative Works 3.0 Unported License. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-nd/3.0/
spellingShingle Article
Steinsbekk, Kristin Solum
Kåre Myskja, Bjørn
Solberg, Berge
Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?
title Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?
title_full Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?
title_fullStr Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?
title_full_unstemmed Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?
title_short Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?
title_sort broad consent versus dynamic consent in biobank research: is passive participation an ethical problem?
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3746258/
https://www.ncbi.nlm.nih.gov/pubmed/23299918
http://dx.doi.org/10.1038/ejhg.2012.282
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