A qualitative study of participants’ views on re-consent in a longitudinal biobank

Mary Dixon-Woods (Lead Author), David Kocman, Liz Brewster, Janet Willars, Graeme Laurie, Carolyn Tarrant

Research output: Contribution to journalArticlepeer-review

Abstract

Biomedical research increasingly relies on long-term studies involving use and re-use of biological samples and data stored in large repositories or “biobanks” over lengthy periods, often raising questions about whether and when a re-consenting process should be activated. We sought to investigate the views on re-consent of participants in a longitudinal biobank.

Participants’ perceptions of research as a process of mutual co-operation between volunteer and researcher were fundamental to their views on consent. Consenting arrangements for biobanks should respect the cooperative values that are important to participants, recognise the two logics used by research volunteers, and avoid rigidity. Agility may be favoured by tiered consent combined with strong oversight mechanisms; this approach requires evaluation.
Original languageEnglish
Article number18:22
Pages (from-to)1-11
Number of pages11
JournalBMC Medical Ethics
DOIs
Publication statusPublished - 23 Mar 2017

Keywords

  • biomedical research
  • social science research
  • research ethics
  • human subjects research
  • informed consent

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