Closure of a human tissue biobank: Individual, institutional, and field expectations during cycles of promise and disappointment

Neil Stephens*, Rebecca Dimond

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

20 Citations (Scopus)

Abstract

Biobanks are increasingly being established to act as mediators between patient-donors and researchers. In practice, some of these will close. This paper details the experiences of one such bank. We report interviews with the bank's staff and oversight group during the period when the bank ceased biobanking activity, reconfigured as a disseminator of best practice, before then closing altogether. The paper makes three distinct contributions: (i) to provide a detailed account of the establishment, operational challenges, and eventual closure of the bank, which makes clear the rapid turnover in a cycle of promise and disappointment; (ii) to explore this in terms of a novel analytical focus upon field, institutional, and individual expectations; and (iii) to use this typology to demonstrate how, even after the bank's closure, aspects of its work were reconfigured and reused in new contexts. This provides a unique empirical analysis of the under-reported issue of biobank closure.

Original languageEnglish
Pages (from-to)417-436
Number of pages20
JournalNew Genetics and Society
Volume34
Issue number4
DOIs
Publication statusPublished - 2 Oct 2015

Bibliographical note

Funding Information:
The support of the UK’s Economic and Social Research Council (ESRC) is gratefully acknowledged. This work is part of the research program of the ESRC Genomic Network at Cesagen (ESRC Centre for Economic and Social Aspects of Genomics RES-145-28-0003).

Publisher Copyright:
© 2015 The Author(s). Published by Taylor & Francis.

Keywords

  • biobanks
  • closure
  • expectations
  • field
  • individual
  • institution
  • promise

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health(social science)
  • Genetics
  • Health Policy

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