ArticleGenomics, society, and policy2010
Community engagement in biobanking: Experiences from the eMERGE Network.
Article in Genomics, society, and policy, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 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
35 citing papers in PubMed.
- Development of a patient advocate committee for a pediatric biobank.Research involvement and engagement · 2026Article
- Ethical navigation of biobanking establishment in Ukraine: learning from the experience of developing countries.Journal of medical ethics · 2026Article
- Researchers' Perspectives Regarding Ethical Issues of Biobank Research in the Arab Region.Biopreservation and biobanking · 2024Article
- Studying the impact of translational genomic research: Lessons from eMERGE.American journal of human genetics · 2023Review
- Promoting patient engagement in cancer genomics research programs: An environmental scan.Frontiers in genetics · 2023Article
- Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity.AJOB empirical bioethics · 2023Article
- Assessing Vietnamese American patient perspectives on population genetic testing in primary care: A community-engaged approach.HGG advances · 2022Article
- Addressing underrepresentation in genomics research through community engagement.American journal of human genetics · 2022Review
- Amplifying Their Voices: Advice, Guidance, and Perceived Value of Cancer Biobanking Research Among an Older, Diverse Cohort.Journal of cancer education : the official journal of the American Association for Cancer Education · 2022Article
- Establishing an expert consensus for the operational definitions of asthma-associated infectious and inflammatory multimorbidities for computational algorithms through a modified Delphi technique.BMC medical informatics and decision making · 2021Article
- What does engagement mean to participants in longitudinal cohort studies? A qualitative study.BMC medical ethics · 2021Article
- Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India.Wellcome open research · 2021Article
- Public engagement with genomic medicine: a summary of town hall discussions.Journal of community genetics · 2021Article
- The reported impact of public involvement in biobanks: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Artificial intelligence approaches using natural language processing to advance EHR-based clinical research.The Journal of allergy and clinical immunology · 2020Review
- Responsiveness and adaptability in community engaged biobanking research: experiences from a Hispanic community.Journal of community genetics · 2019Article
- PIE: A prior knowledge guided integrated likelihood estimation method for bias reduction in association studies using electronic health records data.Journal of the American Medical Informatics Association : JAMIA · 2018Article
- The Public's Awareness of and Attitude Toward Research Biobanks - A Regional German Survey.Frontiers in genetics · 2018Article
- Pathogenic variants in the healthy elderly: unique ethical and practical challenges.Journal of medical ethics · 2017Article
- The ECOUTER methodology for stakeholder engagement in translational research.BMC medical ethics · 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
6 authors.
Funding
Abstract
Advances in genomic technologies and the promise of "personalised medicine" have spurred the interest of researchers, healthcare systems, and the general public. However, the success of population-based genetic studies depends on the willingness of large numbers of individuals and diverse communities to grant researchers access to detailed medical and genetic information. Certain features of this kind of research - such as the establishment of biobanks and prospective data collection from participants' electronic medical records - make the potential risks and benefits to participants difficult to specify in advance. Therefore, community input into biobank processes is essential. In this report, we describe community engagement efforts undertaken by six United States biobanks, various outcomes from these engagements, and lessons learned. Our aim is to provide useful insights and potential strategies for the various disciplines that work with communities involved in biobank-based genomic research.
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.