ArticleHuman genetics2011
Biobanks and the phantom public.
Article in Human genetics, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 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
19 citing papers in PubMed.
- The social aspects of genome editing: publics as stakeholders, populations and participants in animal research.Laboratory animals · 2022Article
- Current Status and Future Challenges of Biobank Research in Malaysia.Asian bioethics review · 2021Article
- Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India.Wellcome open research · 2021Article
- Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?American journal of human genetics · 2020Article
- Public awareness of and attitudes towards research biobanks in Latvia.BMC medical ethics · 2020Article
- Engagement and social acceptance in genome editing for human benefit: Reflections on research and practice in a global context.Wellcome open research · 2020Article
- Biobanking in Israel 2016-17; expressed perceptions versus real life enrollment.BMC medical ethics · 2017Article
- 'You should at least ask'. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research.European journal of human genetics : EJHG · 2016Article
- Lessons from HeLa Cells: The Ethics and Policy of Biospecimens.Annual review of genomics and human genetics · 2016Review
- Constructing populations in biobanking.Life sciences, society and policy · 2015Article
- Fair Shares and Sharing Fairly: A Survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking.PloS one · 2015Article
- Community engagement for big epidemiology: deliberative democracy as a tool.Journal of personalized medicine · 2014Article
- Biobanking across the phenome - at the center of chronic disease research.BMC public health · 2013Article
- Publics and biobanks: Pan-European diversity and the challenge of responsible innovation.European journal of human genetics : EJHG · 2013Article
- Participant-Centric Initiatives: Tools to Facilitate Engagement In Research.Applied & translational genomics · 2012Article
- Power to the people: a wiki-governance model for biobanks.Genome biology · 2012Article
- Inclusion of residual tissue in biobanks: opt-in or opt-out?PLoS biology · 2012Article
- The art and science of biobanking.Human genetics · 2011Article
- Mining the Data: Exploring Rural Patients' Attitudes about the Use of Their Personal Information in Research.AJOB empirical bioethicsArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This paper surveys the current state of knowledge about the relationship between different national publics and biobanks, how different publics perceive biobanks, and which issues are identified as important by various stakeholders. We discuss existing studies and emerging governance strategies dealing with the biobank-publics interface and argue that the search for phantom (biobank) public(s) is on, but still much needs to be done. We argue that the existing data originate in a relatively few regions, among them Northern Europe, the United Kingdom, and in certain U.S. states and are often based on survey research with small samples and short questionnaires. Combined usage of qualitative and quantitative methodology in studies is still rare though of great importance in order to investigate distributions of public opinion and also to be able to explain these patterns. Many important questions in the relationship between publics and biobanks are unexplored, or the existing data are inconsistent.
Indexed as
Identifiers
21773770What 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.