ArticleJournal of community genetics2012
Biobank governance: heterogeneous modes of ordering and democratization.
Article in Journal of community genetics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 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
22 citing papers in PubMed.
- Extending Specimens to Save Plant DNA: Structuring Department DNA Collections in Times of Biodiversity Loss.Ecology and evolution · 2026Article
- The European Health Data Space and biobanking in Europe: synergies, tensions and the future governance of data-driven health research.Frontiers in genetics · 2026Review
- Trusted partners, community priorities, and data protections: requirements for precision medicine research with Alaska Native peoples.Journal of community genetics · 2025Article
- The Government Should Play a Role Greater Than That of Construction Supervisor in the National Bio-Big Data Infrastructure.Journal of Korean medical science · 2024Article
- Establishing a Pregnancy Lyme Disease Biobank.Methods in molecular biology (Clifton, N.J.) · 2024Article
- Thalassemia, biobanking infrastructures, and personalized stem cell therapies in Chennai.Frontiers in sociology · 2023Article
- Advancing clinical and translational research in germ cell tumours (GCT): recommendations from the Malignant Germ Cell International Consortium.British journal of cancer · 2022Review
- Better governance starts with better words: why responsible human tissue research demands a change of language.BMC medical ethics · 2022Article
- Current Status and Future Challenges of Biobank Research in Malaysia.Asian bioethics review · 2021Article
- Stakeholder perspectives on the ethico-legal dimensions of biobanking in South Africa.BMC medical ethics · 2021Article
- Genomic data and the dividual self.Genetics research · 2019Article
- An Introduction to Starting a Biobank.Methods in molecular biology (Clifton, N.J.) · 2019Review
- Raising to the Challenge: Building a Federated Biobank to Accelerate Translational Research-The University Biobank Limburg.Frontiers in medicine · 2019Article
- Needs and Requirements of Modern Biobanks on the Example of Dystonia Syndromes.Frontiers in neurology · 2017Article
- "It's all about trust": reflections of researchers on the complexity and controversy surrounding biobanking in South Africa.BMC medical ethics · 2016Article
- Biobanks in the era of personalized medicine: objectives, challenges, and innovation: Overview.The EPMA journal · 2015Review
- Public's attitudes on participation in a biobank for research: an Italian survey.BMC medical ethics · 2014Article
- Future of biobanks - bigger, longer, and more dimensional.Croatian medical journal · 2013Article
- Challenges in biobank governance in Sub-Saharan Africa.BMC medical ethics · 2013Review
- Genetics and democracy-what is the issue?Journal of community genetics · 2013Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
The great interest in biobanks, the related, substantial investments, and the expectations connected with them raises the question of how to explain the relative successes and failures of contemporary biobank projects. In this article we will present and discuss areas that need ongoing attention by many stakeholders in order stabilize and utilize biobanks and biobank networks in the future. Our aim is to present and utilize an analytical model for comparing structures of biobank governance. The governance model we deduce from empirical case studies is not a well-ordered, almost bureaucratic type of government. The patchwork character and the interrelatedness of heterogeneous activities that constitute biobank governance in its multiple dimensions will be highlighted. Biobank governance should therefore be understood as strategy for patterning a network of interaction that unfolds within and across a number of different fields including a variety of activities that go beyond regulatory activities: the scientific/technological field, the medical/health field, the industrial-economic field, the legal-ethical, and the sociopolitical field. Our account emphasizes that biobanks are not technical visions that operate vis-à-vis an external society. The article discusses attempts to develop participatory governance structures. It concludes that facilitating and managing the integration of a network of more or less interrelated actors, in many nonhierarchic ways, should not be equated with democratization per se, but can nevertheless be regarded as an important step towards a more pluralistic and inclusive style of policy making.
Identifiers
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.