ArticleMedicine, health care, and philosophy2020
«If you give them your little finger, they'll tear off your entire arm»: losing trust in biobank research.
Article in Medicine, health care, and philosophy, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 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
10 citing papers in PubMed.
- "Using dried blood spots beyond newborn screening - is Hong Kong ready?": navigating the intersection of innovation readiness, privacy concerns, and Chinese parenting culture.BMC public health · 2024Article
- Trust and Support for Cancer Research Biobanks: Insights from Cancer Patients in Poland.Medical science monitor : international medical journal of experimental and clinical research · 2024Article
- Exploring biorepository donation patterns, experiences, and recommendations: a mixed-methods study among Appalachian adults enrolled in a sugary drink reduction program.Frontiers in public health · 2024Article
- UPO Biobank: The Challenge of Integrating Biobanking into the Academic Environment to Support Translational Research.Journal of personalized medicine · 2023Article
- Motives for withdrawal of participation in biobanking and participants' willingness to allow linkages of their data.European journal of human genetics : EJHG · 2022Article
- Associations between the Willingness to Donate Samples to Biobanks and Selected Psychological Variables.International journal of environmental research and public health · 2022Article
- Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions.Frontiers in public health · 2022Article
- Biobanking and risk assessment: a comprehensive typology of risks for an adaptive risk governance.Life sciences, society and policy · 2021Review
- What does engagement mean to participants in longitudinal cohort studies? A qualitative study.BMC medical ethics · 2021Article
- Knowledge repositories. In digital knowledge we trust.Medicine, health care, and philosophy · 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
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Why do some people withdraw from biobank studies? To our knowledge, very few studies have been done on the reflections of biobank ex-participants. In this article, we report from such a study. 16 years ago, we did focus group interviews with biobank participants and ex-participants. We found that the two groups interestingly shared worries concerning the risks involved in possible novel uses of their biobank material, even though they drew opposite conclusions from their worries. Revisiting these interviews today reveals a remarkable relevance to present concerns, since the possible developments that worried ex-participants and participants 16 years ago now are becoming realities. Drawing on conceptual distinctions by sociologist and philosopher Niklas Luhmann, we argue that while ex-participants express a loss of trust in the biobank institution to manage the use of their biobank material in a legitimate way, remaining participants expressed confidence in the management of the biobank institution to secure their interests. This analysis brings out important aspects of emerging trends in biobank research participation.
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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.