Exploring an alternative to informed consent in biobank research<sup>1</sup>

Rieke van der Graaf and Johannes J. M. van Delden

in Human Tissue Research

Published in print March 2011 | ISBN: 9780199587551
Published online May 2011 | e-ISBN: 9780191725630 | DOI:
Exploring an alternative to informed consent in biobank research1

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This chapter argues that the Kantian formula that ‘research participants must not be used merely as a means in medical research’ can shed new light on issues in biobank research. It shows that Kantian formula includes both an element of consent and an element of end-sharing. In particular, it argues that the formula plays a role at a fundamental level, where we ask whether people have sufficient reasons to consent to being used for biobank research purposes. The chapter's analysis of the formula has several implications for biobank research, amongst others on the much-debated broad consent for biobank research, on the issue of recontacting donors at the moment that their bodily material is used, and on the issue of withdrawal from biobank research. The chapter also sets out how end-sharing can be ensured in the case of new, archived, and leftover material.

Keywords: archived material; broad consent; end-sharing; informed consent; Kantian formula; leftover material; merely as a means; recontacting; withdrawal

Chapter.  5492 words. 

Subjects: Public Health and Epidemiology

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