ArticleGenetics in medicine : official journal of the American College of Medical Genetics2015
Stakeholder engagement in policy development: challenges and opportunities for human genomics.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04331535 (Pragmatic Randomized Trial of Polygenic Risk Scoring for Common Diseases in Primary Care), which is not on this map. Cited by 67 papers, 1 of them a synthesis that pooled it.
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.
Pragmatic Randomized Trial of Polygenic Risk Scoring for Common Diseases in Primary Care
Who cites it
67 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Systematic Review of Quantitative Measures of Stakeholder Engagement.Clinical and translational science · 2017Pooled it
- Polygenic risk scores (PRS) in society. Healthcare providers and researchers' views on the public health and socio-cultural implications of PRS in healthcare contexts.Journal of community genetics · 2026Article
- Community and stakeholder engagement in national priority setting and participatory research for HIV, Tuberculosis, and Malaria programs in Nepal.Research involvement and engagement · 2026Article
- Exploring Salt Reduction Strategies: Navigating Policy Implementation in the Middle East.Food science & nutrition · 2026Review
- Governance of polygenic embryo screening: a qualitative study on the perspectives of clinicians and patients.Fertility and sterility · 2026Article
- North Carolina primary care provider perspectives on expanded genomic screening in children.BMC medical genomics · 2026Article
- Stakeholder engagement in genetics research development in diverse urban communities in the Midwestern United States: process and considerations.Frontiers in medicine · 2026Article
- Examining bhutan's zoonotic disease policies through a One Health lens: a qualitative policy analysis using the policy triangle framework.One health outlook · 2025Article
- Primary Care Provider Perspectives on Expanded Genomic Screening in Children.Research square · 2025Article
- Implementation of the framework for disability and rehabilitation in Gauteng, South Africa.African journal of primary health care & family medicine · 2025Article
- Implementation of Sexual and Reproductive Health Education Policy in Schools in Asia and Africa: A Scoping Review.International journal of sexual health : official journal of the World Association for Sexual Health · 2025Article
- Community Collaboration in Public Health Genetic Literacy: Methods for Co-Designing Educational Resources for Equitable Genomics Research and Practice.Public health genomics · 2025Article
- Emerging and evolving values in the changing landscape of genomics.Frontiers in genetics · 2025Article
- Stakeholders' engagement for improved health outcomes: a research brief to design a tool for better communication and participation.Frontiers in public health · 2025Article
- Age-Based Genomic Screening: Pediatric Providers' Perspectives on Implementation.Public health genomics · 2025Article
- The representation of Australians living with dementia in voluntary assisted dying research: A scoping review.Australasian journal on ageing · 2024Article
- How to communicate and what to disclose to participants in a recall-by-genotype research approach: a multistep empirical study.Journal of community genetics · 2024Article
- "I just don't know enough": Australian perspectives on community involvement in health and medical research.Research involvement and engagement · 2024Article
- Article
- Using visual storytelling to share aggregate findings with families participating in clinical genomics research.Genetics in medicine open · 2024Article
7 more citing papers are in PubMed but not listed here.
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
Along with rapid advances in human genomics, policies governing genomic data and clinical technologies have proliferated. Stakeholder engagement is widely lauded as an important methodology for improving clinical, scientific, and public health policy decision making. The purpose of this paper is to examine how stakeholder engagement is used to develop policies in genomics research and public health areas, as well as to identify future priorities for conducting evidence-based stakeholder engagements. We focus on exemplars in biobanking and newborn screening to illustrate a variety of current stakeholder engagement in policy-making efforts. Each setting provides an important context for examining the methods of obtaining and integrating informed stakeholder voices into the policy-making process. While many organizations have an interest in engaging stakeholders with regard to genomic policy issues, there is broad divergence with respect to the stakeholders involved, the purpose of engagements, when stakeholders are engaged during policy development, methods of engagement, and the outcomes reported. Stakeholder engagement in genomics policy development is still at a nascent stage. Several challenges of using stakeholder engagement as a tool for genomics policy development remain, and little evidence regarding how to best incorporate stakeholder feedback into policy-making processes is currently available.
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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.