posted on 2015-05-07, 10:18authored bySusan E. Wallace, Elli G. Gourna, G. Laurie, Osama Shoush, Jessica E. Wright
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.
Funding
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.
History
Citation
Bioethics 2015
Author affiliation
/Organisation/COLLEGE OF MEDICINE, BIOLOGICAL SCIENCES AND PSYCHOLOGY/School of Medicine/Department of Health Sciences