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 language | English |
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Pages (from-to) | 417-436 |
Number of pages | 20 |
Journal | New Genetics and Society |
Volume | 34 |
Issue number | 4 |
DOIs | |
Publication status | Published - 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