Please use this identifier to cite or link to this item: https://hdl.handle.net/10356/148711
Title: The reported impact of public involvement in biobanks : a scoping review
Authors: Puerta, Lidia Luna
Kendall, Will
Davies, Bethan
Day, Sophie
Ward, Helen
Keywords: Science::Medicine
Issue Date: 2020
Source: Puerta, L. L., Kendall, W., Davies, B., Day, S. & Ward, H. (2020). The reported impact of public involvement in biobanks : a scoping review. Health Expectations, 23(4), 759-788. https://dx.doi.org/10.1111/hex.13067
Journal: Health Expectations
Abstract: Background: Biobanks increasingly employ public involvement and engagement strategies, though few studies have explored their impact. This review aims to (a) investigate how the impact of public involvement in biobanks is reported and conceptualized by study authors; in order to (b) suggest how the research community might re‐conceptualize the impact of public involvement in biobanks. Methods: A systematic literature search of three electronic databases and the INVOLVE Evidence Library in January 2019. Studies commenting on the impact of public involvement in a biobank were included, and a narrative review was conducted. Results and discussion: Forty‐one studies covering thirty‐one biobanks were included, with varying degrees of public involvement. Impact was categorized according to where it was seen: ‘the biobank’, ‘people involved’ and ‘the wider research community’. Most studies reported involvement in a ‘functional’ way, in relation to improved rates of participation in the biobank. Broader forms of impact were reported but were vaguely defined and measured. This review highlights a lack of clarity of purpose and varied researcher conceptualizations of involvement. We pose three areas for further research and consideration by biobank researchers and public involvement practitioners. Conclusions: Functional approaches to public involvement in biobanking limit impact. This conceptualization of involvement emerges from an entrenched technical understanding that ignores its political nature, complicated by long‐standing disagreement about the values of public involvement. This study urges a re‐imagination of impact, re‐conceptualized as a two‐way learning process. More support will help researchers and members of the public to undergo such reflective exercises.
URI: https://hdl.handle.net/10356/148711
ISSN: 1369-6513
DOI: 10.1111/hex.13067
Rights: © 2020 The Authors (published by John Wiley & Sons Ltd). This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
Fulltext Permission: open
Fulltext Availability: With Fulltext
Appears in Collections:LKCMedicine Journal Articles

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