ArticleFrontiers in public health2019
Public Involvement in Global Genomics Research: A Scoping Review.
Article in Frontiers in public health, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 40 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
40 citing papers in PubMed.
- The Australian Public's Awareness, Knowledge and Perspectives Towards Pharmacogenomics: A Nationwide Survey, and Semi-Structured Interviews.Clinical and translational science · 2026Article
- Community perspectives on the return of research results and ownership of data and specimens for brain tumor genomic research.SSM. Qualitative research in health · 2026Article
- From input to impact: embedding PPI in computational ovarian cancer research.Research involvement and engagement · 2026Article
- Press release guide for genomic research and medicine: a framework co-developed with public contributors in Japan.Journal of human genetics · 2026Article
- How are patient partners involved in health service research? A scoping review of reviews.Research involvement and engagement · 2025Review
- The expanding global genomics landscape: Converging priorities from national genomics programs.American journal of human genetics · 2025Review
- Patient and public involvement in basic and clinical psychiatric research: a scoping review of reviews.BMC psychiatry · 2025Article
- Emerging and evolving values in the changing landscape of genomics.Frontiers in genetics · 2025Article
- Community Collaboration in Public Health Genetic Literacy: Methods for Co-Designing Educational Resources for Equitable Genomics Research and Practice.Public health genomics · 2025Article
- "I just don't know enough": Australian perspectives on community involvement in health and medical research.Research involvement and engagement · 2024Article
- Engagement of patients and the public in personalised prevention in Europe using genomic information: a scoping review.Frontiers in public health · 2024Article
- Extending an Antiracism Lens to the Implementation of Precision Public Health Interventions.American journal of public health · 2023Article
- Article
- A review of reviews exploring patient and public involvement in population health research and development of tools containing best practice guidance.BMC public health · 2023Review
- How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community.BMC medical ethics · 2023Article
- How does the genomic naive public perceive whole genomic testing for health purposes? A scoping review.European journal of human genetics : EJHG · 2023Article
- Public engagement with genomics.Wellcome open research · 2023Review
- Applying Patient and Public Involvement in preclinical research: A co-created scoping review.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Valuing the Diversity of Research Methods to Advance Nutrition Science.Advances in nutrition (Bethesda, Md.) · 2022Article
- Standardised data on initiatives-STARDIT: Beta version.Research involvement and engagement · 2022Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Public involvement in research occurs when the public, patients, or research participants are actively contributing to the research process. Public involvement has been acknowledged as a key priority for prominent human genomics research initiatives in many different countries. However, to date, there has been no detailed analysis or review of the features, methods, and impacts of public involvement occurring in human genomics research projects worldwide. Here, we review the reported public involvement in 96 human genomics projects (initiatives), based on a database of initiatives hosted by the Global Alliance for Genomics and Health, according to information reported on public domain websites. To conduct the scoping review, we applied a structured categorization of criteria to all information extracted from the search. We found that only a third of all initiatives reported public involvement in any capacity (32/96, 33%). In those reporting public involvement, we found considerable variation in both the methods and tasks of involvement. Some noteworthy initiatives reported diverse and comprehensive ways of involving the public, occurring through different stages of the research project cycle. Three notable initiatives reported a total of eight distinct impacts as a result of involving people. Our findings suggest there would be intrinsic value in having more public involvement occur in human genomics research worldwide. We also suggest that more systematic ways of reporting and evaluating involvement would be highly beneficial, to help develop best practices.
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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.