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Biobank consent models – are we moving toward increased participant engagement in biobanking?

Authors Solberg B, Steinsbekk KS

Received 21 March 2015

Accepted for publication 14 May 2015

Published 23 July 2015 Volume 2015:3(1) Pages 23—33

DOI https://doi.org/10.2147/BSAM.S64577

Checked for plagiarism Yes

Review by Single-blind

Peer reviewer comments 3

Editor who approved publication: Dr Martin H. Bluth

Video abstract presented by B Solberg and KS Steinsbekk

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Berge Solberg, Kristin Solum Steinsbekk

Department of Public Health and General Practice, Norwegian University of Science and Technology (NTNU), Trondheim, Norway

Abstract: Engagement, involvement, and active participation are buzzwords used in today's ethical debate on research biobanking. There are a variety of context-sensitive governance frameworks for research biobanks. However, many biobanks, especially large-scale population-based ones, seem to endorse a framework of broad consent, participation with minimal or no ongoing engagement, and no return of results. An alternative vision of involvement and active participation in this type of research has become increasingly visible in the literature. The problem, seen from the biobankers' perspective, is that the alternative vision might be costly, cumbersome, and risky, while the prevailing system for governance will maximize the scientific value of the biobank with minimal ethical, legal, and social efforts. Therefore, solid and convincing arguments are needed to determine if biobank institutions should take a radical step toward more ongoing engagement and donor involvement. In this paper, we review the arguments found in articles addressing dynamic consent, participatory research, reciprocity, and participant engagement in biobank research. We identify four core ideas on which the arguments for increased involvement are based. The strength of the arguments are then analyzed. We conclude that despite challenges with increased engagement, there seem to be substantial reasons to increase participant engagement in biobanking.

Keywords: biobank ethics, participatory research, dynamic consent, reciprocity

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