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The Need to Downregulate: A Minimal Ethical Framework for Biobank Research

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Methods in Biobanking

Part of the book series: Methods in Molecular Biology ((MIMB,volume 675))

Abstract

There are currently multiple international bodies suggesting legal and ethical frameworks for regulating international biobank research. One will for obvious reasons find inconsistencies in terminology and differences in procedures suggested for biobank research among all those guidelines, emanating from many different moral and legal traditions. A central question is whether this constitutes a threat to making progress in international biobank research, as some have argued. In this book, Chapter 1 suggests that there are sufficient and well-established instruments and ethical principles available to guide research in this area. Basically I argue that there is no need for a top-down superstructure of detailed rules and guidelines to be imposed on biobank researchers. With the existing ethical review boards (ERBs) playing a central role guided by well-established ethical guidelines (e.g., the Helsinki Declaration) and solutions to specific ethical problems suggested in the literature, self-regulation by researchers providing arguments for balancing of interests in association with different research initiatives and protocols will be sufficient. Traditional information and consent procedures suffice and data protection implies a sovereign right of the individual citizen to grant the use of biobank material and personal data that is needed for biobank research. Clearly, there may still be inconsistencies in terminology when researchers of different nationalities meet in common enterprises, but both they and the ERBs are well equipped to sort out what is actually meant and propose different instruments for, for example, coding following recently established nomenclatures. The existing ERBs should play the key role, guided by the sound argumentation of the researchers in their applications to the board.

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Acknowledgement

I am grateful to Alastair Campbell, Don Chalmers, and Terry Kaan Sheung-Hung for valuable comments to an earlier version of this chapter.

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Authors and Affiliations

  1. Department of Public Health and Caring Sciences, Centre for Research Ethics & Bioethics, Uppsala University, Uppsala, Sweden

    Mats G. Hansson

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  1. Mats G. Hansson
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Correspondence to Mats G. Hansson .

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Editors and Affiliations

  1. , Bio Banking and Molecular Resource, Karolinska Institutet, Stockholm, 205 02, Sweden

    Joakim Dillner

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Hansson, M.G. (2011). The Need to Downregulate: A Minimal Ethical Framework for Biobank Research. In: Dillner, J. (eds) Methods in Biobanking. Methods in Molecular Biology, vol 675. Humana Press, Totowa, NJ. https://doi.org/10.1007/978-1-59745-423-0_2

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  • DOI: https://doi.org/10.1007/978-1-59745-423-0_2

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  • Publisher Name: Humana Press, Totowa, NJ

  • Print ISBN: 978-1-58829-995-6

  • Online ISBN: 978-1-59745-423-0

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