ArticleEuropean journal of human genetics : EJHG2019
Return of individual genomic research results: are laws and policies keeping step?
Article in European journal of human genetics : EJHG, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 59 papers, 3 of them syntheses 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
59 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- The Psychosocial Impact of Receiving Whole Genome and Whole Exome Sequencing Results in Adults: A Systematic Review.Journal of genetic counseling · 2026Pooled it
- Ethical Principles, Constraints and Opportunities in Clinical Proteomics.Molecular & cellular proteomics : MCP · 2021Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Multiscale predictive cellular modeling: integrating hypothesis grammars, digital twins, and multi-omics for In silico oncology and precision theranostics.Functional & integrative genomics · 2026Review
- The European Health Data Space and biobanking in Europe: synergies, tensions and the future governance of data-driven health research.Frontiers in genetics · 2026Review
- Building sustainable cohort studies in China: a hybrid model for public health research.BMJ (Clinical research ed.) · 2025Article
- Deep Learning for the Early Detection of Invasive Ductal Carcinoma in Histopathological Images: Convolutional Neural Network Approach With Transfer Learning.JMIR formative research · 2025Article
- Who owns that blood? Recontacting donors with results from genetic testing after allogeneic hematopoietic cell transplantation.HemaSphere · 2025Article
- Returning raw genomic data to research participants in a pediatric cancer precision medicine trial.NPJ genomic medicine · 2025Article
- When families bridge the research-clinical divide: An exploration of values regarding cascade screening in genomic research.Genetics in medicine open · 2025Article
- Ethical challenges of conducting and reviewing human genomics research in Malaysia: An exploratory study.Developing world bioethics · 2024Article
- Research participant perceptions of personal utility in disclosure of individual research results from genomic analysis.Journal of community genetics · 2024Article
- Astronaut omics and the impact of space on the human body at scale.Nature communications · 2024Review
- Population Neuroscience: Strategies to Promote Data Sharing While Protecting Privacy.Current topics in behavioral neurosciences · 2024Review
- Feasibility and Clinical Utility of Reporting Hereditary Cancer Predisposition Pathogenic Variants Identified in Research Germline Sequencing: A Prospective Interventional Study.JCO precision oncology · 2024Article
- Broad consent for biobank research in South Africa - Towards an enabling ethico-legal framework.Global bioethics = Problemi di bioetica · 2024Article
- Uptake of Genetic Research Results and Patient-Reported Outcomes With Return of Results Incorporating Web-Based Predisclosure Education.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2023Article
- Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal.Annual review of genomics and human genetics · 2023Review
- Feeding back of individual genetic results in Botswana: mapping opportunities and challenges.BMC medical ethics · 2023Article
- A practical checklist for return of results from genomic research in the European context.European journal of human genetics : EJHG · 2023Article
Corrections and comments
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Authors and funding
3 authors.
Funding
Abstract
Efforts are underway to harmonise the return of individual results and incidental findings from whole genome sequencing (WGS) across research contexts and countries. We reviewed international, regional and national laws and policies applying to return across 20 countries to identify areas of convergence and divergence. Discrepancies between laws and policies are most problematic where they cannot be reconciled through harmonisation of project-level governance. Rules for the return of results apply at different levels in different jurisdictions (e.g., human subjects research, biobanks, clinical trials, genomic sequencing, and genetic/personal data), complicating comparison. A particular concern for harmonisation are the (often contradictory) rules about when results must, should, may, or must not be returned. Adding confusion are different thresholds for utility (medical, familial, reproductive, and/or personal). The importance of respecting individual choices to know or not know is widely recognised, though some norms emphasise respect for personal preferences. Another troubling observation is that requirements for data quality, variant assessment, and the effective communication of results are evolving in uneven ways. There is a growing gap between researchers with the expertise, infrastructure, and resources to meet these requirements and those without, threatening international collaboration. Best practices for the return of individual genomic results are sorely needed to inform not only the ethical return of results, but also future legislative and policy efforts.
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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.