ArticlePublic health genomics2014
Community engagement in US biobanking: multiplicity of meaning and method.
Article in Public health genomics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
What it found
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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.
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Who cites it
14 citing papers in PubMed.
- From Data to Harm: Exploring Ethical and Social Implications of Polygenic Scores for Social Traits.The American journal of bioethics : AJOB · 2025Article
- Ready, Set, Sort! A User-Guide to Card Sorts for Community-Engaged Empirical Bioethics.Journal of empirical research on human research ethics : JERHRE · 2024Article
- Data Management in Biobanking: Strategies, Challenges, and Future Directions.Biotech (Basel (Switzerland)) · 2024Review
- Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity.AJOB empirical bioethics · 2023Article
- Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India.Wellcome open research · 2021Article
- Responsiveness and adaptability in community engaged biobanking research: experiences from a Hispanic community.Journal of community genetics · 2019Article
- "I'm a Little More Trusting": Components of Trustworthiness in the Decision to Participate in Genomics Research for African Americans.Public health genomics · 2019Article
- Grudging Trust and the Limits of Trustworthy Biorepository Curation.The American journal of bioethics : AJOB · 2018Article
- Towards a practical model for community engagement: Advancing the art and science in academic health centers.Journal of clinical and translational science · 2017Article
- Engaging Diverse Stakeholders to Inform Biobank Governance.Biopreservation and biobanking · 2017Article
- With great (participant) rights comes great (researcher) responsibility.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Article
- Stakeholder engagement in policy development: challenges and opportunities for human genomics.Genetics in medicine : official journal of the American College of Medical Genetics · 2015Article
- Introducing Biospecimen Science to Communities: Tools from Two Cities.Progress in community health partnerships : research, education, and action · 2015Article
- Constructing populations in biobanking.Life sciences, society and policy · 2015Article
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
BACKGROUND/
aimsEfforts to improve individual and population health increasingly rely on large-scale collections of human biological specimens and associated data. Such collections or 'biobanks' are hailed as valuable resources for facilitating translational biomedical research. However, biobanks also raise important ethical considerations, such as whether, how and why biobanks might engage with those who contributed specimens. This paper examines perceptions and practices of community engagement (CE) among individuals who operate 6 diverse biobanks in the US.
methodsTwenty-four people from a diverse group of 6 biobanks were interviewed in-person or via telephone from March to July 2011. Interview transcripts were coded and analyzed for common themes.
resultsEmergent themes include how biobank personnel understand 'community' and CE as it pertains to biobank operations, information regarding the diversity of practices of CE, and the reasons why biobanks conduct CE.
conclusionDespite recommendations from federal agencies to conduct CE, the interpretation of CE varies widely among biobank employees, ultimately affecting how CE is practiced and what goals are achieved.
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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.