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ResourcesHuman Research EthicsInformed consent in international normative texts and biobanking policies: Seeking the boundaries of broad consent (Papers: Palmira Granados Moreno and Yann Joly | 2016)

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Informed consent in international normative texts and biobanking policies: Seeking the boundaries of broad consent (Papers: Palmira Granados Moreno and Yann Joly | 2016)

 


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Abstract
With the progress in bioinformatics, genomics, and epidemiology, biobanks, as repositories of populations’ biological samples as well as of personal and medical information, are becoming an essential research tool. Despite the potential benefits biobanks may bring and the options presented by some of the current biobanks’ consent policies, there remain ethical concerns regarding the autonomy and dignity of research participants if consent is not fully informed as dictated in the terms of traditional informed consent. This article aims at providing an overview of the approaches taken by the main international norms with respect to informed and broad consent and how well these norms are integrated by biobanks or biobank consortia. We conclude that broad consent could be an important tool to achieve the benefits of large-scale biobanks projects. If it is to be accepted, its regulation and implementation need to be mindful of the participant’s dignity and autonomy and sensitive to the need for international coherence and harmonization.

Keywords
Broad consent, comparative analysis of informed consent practices in international biobanks, international biobanks, international biobanks informed consent policies, international biobanks informed consent regulations

Moreno, P.G. and Joly, Y (2016) Informed consent in international normative texts and biobanking policies: Seeking the boundaries of broad consent.  Medical Law International.  7(35) https://doi.org/10.1177/0968533215626773
Publisher: https://journals.sagepub.com/doi/10.1177/0968533215626773



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