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Respecting Autonomy Over Time: Policy and Empirical Evidence on Re-consent in Longitudinal Biomedical Research

Research output: Contribution to journalArticle

  • Graeme Laurie
  • Susan E Wallace
  • Elli G. Gourna
  • Osama Shoush
  • Jessica Wright

Related Edinburgh Organisations

Original languageEnglish
Article numberPMID: 25960157
Number of pages8
JournalBioethics
Early online date9 May 2015
DOIs
StatePublished - 2015

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 re-consent 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.

Research areas

  • re-consent, consent, autonomy, biobank, policy

ID: 19589762