The reported impact of public involvement in biobanks: a scoping review
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Published version
Author(s)
Luna Puerta, Lidia
Kendall, Will
Davies, Bethan
Day, sophie
Ward, helen
Type
Journal Article
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.
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.
Date Issued
2020-05-06
Date Acceptance
2020-04-08
Citation
Health Expectations, 2020, 23 (4)
ISSN
1369-6513
Publisher
Wiley Open Access
Journal / Book Title
Health Expectations
Volume
23
Issue
4
Copyright Statement
© 2020 The Authors Health Expectations published by John Wiley & Sons Ltd
This is an open access article under the terms of the Creative Commons Attribution License http://creativecommons.org/licenses/by/4.0/, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
This is an open access article under the terms of the Creative Commons Attribution License http://creativecommons.org/licenses/by/4.0/, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
License URL
Sponsor
Imperial College Healthcare NHS Trust- BRC Funding
Imperial College Healthcare NHS Trust: Research Capability Funding (RCF)
Wellcome Trust
Identifier
PII: 788
Grant Number
RDF01
RDF04
205456/A/16/Z
Subjects
Science & Technology
Life Sciences & Biomedicine
Health Care Sciences & Services
Health Policy & Services
Public, Environmental & Occupational Health
biobank
impact
public involvement
COMMUNITY ENGAGEMENT
STAKEHOLDER ENGAGEMENT
GENETIC RESEARCH
GREY LITERATURE
PERSPECTIVES
POLICY
CONSULTATION
PARTNERSHIP
DISCUSSIONS
LESSONS
biobank
impact
public involvement
1110 Nursing
1117 Public Health and Health Services
1701 Psychology
Public Health
Publication Status
Published
Date Publish Online
2020-05-06