ArticleHealth expectations : an international journal of public participation in health care and health policy2020
The reported impact of public involvement in biobanks: A scoping review.
Article in Health expectations : an international journal of public participation in health care and health policy, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
20 citing papers in PubMed, 34 citations in OpenAlex.
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- Between data providers and concerned citizens: Exploring participation in precision public health in Switzerland.Public understanding of science (Bristol, England) · 2024Article
- To donate or not to donate? Future healthcare professionals' opinions on biobanking of human biological material for research purposes.BMC medical ethics · 2023Article
- Toward an open access genomics database of South Africans: ethical considerations.Frontiers in genetics · 2023Article
- A leap of faith: building the trust in human biobanks.Frontiers in genetics · 2023Article
- LGBTQ+ Perspectives on Conducting Genomic Research on Sexual Orientation and Gender Identity.Behavior genetics · 2022Article
- Public awareness and attitudes toward biobank and sample donation: A regional Chinese survey.Frontiers in public health · 2022Article
- Co-designing genomics research with a large group of donor-conceived siblings.Research involvement and engagement · 2021Article
- Basic principles of biobanking: from biological samples to precision medicine for patients.Virchows Archiv : an international journal of pathology · 2021Review
- What does engagement mean to participants in longitudinal cohort studies? A qualitative study.BMC medical ethics · 2021Article
- Recommendations for a Dutch Sustainable Biobanking Environment.Biopreservation and biobanking · 2021Article
- Engaged genomic science produces better and fairer outcomes: an engagement framework for engaging and involving participants, patients and publics in genomics research and healthcare implementation.Wellcome open research · 2021Article
- The reported impact of public involvement in biobanks: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 2 countries.
Funding
Abstract
backgroundBiobanks 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.
methodsA 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.
conclusionsFunctional 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.
Indexed as
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.