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Human Tissue ResearchA European perspective on the ethical and legal challenges$
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Christian Lenk, Nils Hoppe, Katharina Beier, and Claudia Wiesemann

Print publication date: 2011

Print ISBN-13: 9780199587551

Published to Oxford Scholarship Online: May 2011

DOI: 10.1093/acprof:oso/9780199587551.001.0001

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PRINTED FROM OXFORD SCHOLARSHIP ONLINE (oxford.universitypressscholarship.com). (c) Copyright Oxford University Press, 2021. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in OSO for personal use. date: 23 January 2022

Exploring an alternative to informed consent in biobank research 1

Exploring an alternative to informed consent in biobank research 1

(p.15) Chapter 2 Exploring an alternative to informed consent in biobank research1
Human Tissue Research

Rieke van der Graaf

Johannes J. M. van Delden

Oxford University Press

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

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