ArticleEuropean journal of human genetics : EJHG2020
Rethinking the ethical principles of genomic medicine services.
Article in European journal of human genetics : EJHG, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 2 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
23 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Population genetic considerations for using biobanks as international resources in the pandemic era and beyond.BMC genomics · 2021Pooled it
- Ethical Principles, Constraints and Opportunities in Clinical Proteomics.Molecular & cellular proteomics : MCP · 2021Pooled it
- Toward the establishment of best practice guidelines for human research in Genomic Medicine in Brazil.Genetics and molecular biology · 2026Article
- Leveraging real-time genomic surveillance to combat infectious diseases and antimicrobial resistance in cancer patients.Frontiers in public health · 2026Article
- Metagenomic Next-Generation Sequencing in Infectious Diseases: Clinical Applications, Translational Challenges, and Future Directions.Diagnostics (Basel, Switzerland) · 2025Review
- Incorporating familial risk, lifestyle factors, and pharmacogenomic insights into personalized noncommunicable disease (NCD) reports for healthcare funder beneficiaries participating in the Open Genome Project.Annals of human genetics · 2025Article
- Ethical and Psychosocial Issues Associated with Genetic Testing for Hereditary Tumor Predisposition Syndromes.Healthcare (Basel, Switzerland) · 2025Review
- Challenges and opportunities in uncertainty quantification for healthcare and biological systems.Philosophical transactions. Series A, Mathematical, physical, and engineering sciences · 2025Review
- Storing paediatric genomic data for sequential interrogation across the lifespan.Journal of medical ethics · 2025Article
- Clinical metagenomics: ethical issues.Journal of medical microbiology · 2025Article
- Emerging and evolving values in the changing landscape of genomics.Frontiers in genetics · 2025Article
- MicroRNA Significance in Cancer: An Updated Review on Diagnostic, Prognostic, and Therapeutic Perspectives.EJIFCC · 2024Review
- A brief clinical genetics review: stepwise diagnostic processes of a monogenic disorder-hypertriglyceridemia.Translational pediatrics · 2024Review
- Ethical and social reflections on the proposed European Health Data Space.European journal of human genetics : EJHG · 2024Article
- Whole genome sequencing in clinical practice.BMC medical genomics · 2024Review
- Ethical Considerations in Research with Genomic Data.The New bioethics : a multidisciplinary journal of biotechnology and the body · 2023Article
- Targeted haplotyping in pharmacogenomics using Oxford Nanopore Technologies' adaptive sampling.Frontiers in pharmacology · 2023Article
- The promise of public health ethics for precision medicine: the case of newborn preventive genomic sequencing.Human genetics · 2022Review
- Ethical implications of epigenetics in the era of personalized medicine.Clinical epigenetics · 2022Review
- Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data management in Queensland, Australia.BMC medical ethics · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
Clinical genome and exome sequencing is currently used in only a small fraction of patients, yet large scale genomic initiatives are becoming more embedded in clinical services. This paper examines the ethical principles that should guide regulatory processes regarding consent and data sharing in this context. We argue that a genomic dataset administered by the health system carries substantial societal benefits, and that the collective nature of this initiative means that at least those patients who benefit from genome sequencing have an ethical obligation to share their health information. This obligation is grounded in considerations of fairness. Furthermore, we argue that the use of genomic data for the advancement of medical knowledge should be permitted without explicit consent and that international and other bodies should be granted access to these data, provided certain conditions are satisfied.
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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.