ArticleHuman genetics2011
Reflexive governance in biobanking: on the value of policy led approaches and the need to recognise the limits of law.
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 28 papers, 1 of them a synthesis that pooled it.
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
28 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Responsible data sharing in international health research: a systematic review of principles and norms.BMC medical ethics · 2019Pooled it
- Broad consent for biobank research in South Africa - Towards an enabling ethico-legal framework.Global bioethics = Problemi di bioetica · 2024Article
- Identification and Assessment of Risks in Biobanking: The Case of the Cancer Institute of Bari.Cancers · 2022Article
- What can data trusts for health research learn from participatory governance in biobanks?Journal of medical ethics · 2022Article
- Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore.Journal of personalized medicine · 2021Article
- The social licence for data-intensive health research: towards co-creation, public value and trust.BMC medical ethics · 2021Review
- Governing Personalized Health: A Scoping Review.Frontiers in genetics · 2021Article
- We need to think about data governance for dementia research in a digital era.Alzheimer's research & therapy · 2020Article
- Participatory governance over research in an academic research network: the case of Diabetes Action Canada.BMJ open · 2019Article
- The Experience of Establishing Data Sharing & Linkage Platforms for Administrative, Research and Community-Service Data.International journal of population data science · 2019Article
- Contextual Anonymization for Secondary Use of Big Data in Biomedical Research: Proposal for an Anonymization Matrix.JMIR medical informatics · 2018Article
- Sharing longitudinal, non-biological birth cohort data: a cross-sectional analysis of parent consent preferences.BMC medical informatics and decision making · 2018Article
- Health Research with Big Data: Time for Systemic Oversight.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2018Article
- Balancing the local and the universal in maintaining ethical access to a genomics biobank.BMC medical ethics · 2017Review
- Consent, ethics and genetic biobanks: the case of the Athlome project.BMC genomics · 2017Review
- A critique of the regulation of data science in healthcare research in the European Union.BMC medical ethics · 2017Article
- A qualitative study of participants' views on re-consent in a longitudinal biobank.BMC medical ethics · 2017Article
- "Forward-Thinking" in U.S. Biobanking.Genetic testing and molecular biomarkers · 2017Article
- Article
- Animal Health Surveillance in Scotland in 2030: Using Scenario Planning to Develop Strategies in the Context of "Brexit".Frontiers in veterinary science · 2017Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Although a few jurisdictions around the world have legislated in response to the phenomenon of biobanking, the far more common response has been policy led with funders and other stakeholders initiating multi-level policy initiatives to guide biobanking practice. An example of this is UK Biobank which has developed and operates according to an Ethics and Governance Framework. Such an instrument has no basis in law and yet it has played a crucial role in the set up and ongoing management of the resource. It will continue to do so, as related policies emerge, such as access and intellectual property policies. Numerous biobanking initiatives have similar high-level policy documents that guide decisions and practice. These are often framed as a commitment to participants, researchers and society more broadly and invoke notions such as the public good and the public interest. As such, they serve as a benchmark against which to measure a biobank's performance. Moreover, policies become an important means by which biobankers are held accountable. This article critically analyses this policy-driven phenomenon asking how effectively policy--often as an alternative to law--serves to police and to promote biobanking. It argues that a policy of reflexive governance--defined and developed herein--can best meet the challenges faced by many biobanks and without the need for recourse to law.
Indexed as
Identifiers
21766192What 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.