Dissemin is shutting down on January 1st, 2025

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Wiley, Bioethics, 3(30), p. 210-217, 2015

DOI: 10.1111/bioe.12165

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Respecting autonomy over time: policy and empirical evidence on re-consent in longitudinal biomedical research

This paper is available in a repository.
This paper is available in a repository.

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Abstract

Re-consent in research, the asking for a new consent if there is a change in protocol or to confirm the expectations of participants in case of change, is an under-explored issue. There is little clarity as to what changes should trigger reconsent and what impact a re-consent exercise has on participants and the research project. This article examines applicable policy statements and literature for the prevailing arguments for and against re-consent in relation to longitudinal cohort studies, tissue banks and biobanks. Examples of re-consent exercises are presented, triggers and non-triggers for re-consent discussed and the conflicting attitudes of commentators, participants and researchers highlighted. We acknowledge current practice and argue for a greater emphasis on ‘responsive autonomy,’ that goes beyond a one-time consent and encourages greater communication between the parties involved. A balance is needed between respecting participants’ wishes on how they want their data and samples used and enabling effective research to proceed. ; This article was written as part of the on-going project ‘Re-consent to Research: Views of Participants’, for which the authors are grateful to the Wellcome Trust [WT097093MA] and the UK Medical Research Council for funding. ; Peer-reviewed ; Publisher version