ArticleHuman genetics2014
A human rights approach to an international code of conduct for genomic and clinical data sharing.
Article in Human genetics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 50 papers, 1 of them a synthesis 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
50 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The ethical and legal landscape of brain data governance.PloS one · 2022Pooled it
- European Reference Networks as core health structures where referring genetic newborn screening positive infants: an innovative operational research framework.Frontiers in public health · 2026Article
- A Scoping Review on Genetic Mutations and Single-Nucleotide Polymorphisms Associated with Pectus Excavatum.Journal of multidisciplinary healthcare · 2026Review
- Recent advances in epigenetic therapeutics for Rett syndrome: from mechanisms to clinical trials.Frontiers in behavioral neuroscience · 2026Review
- Imagining Genomics and Population Health in 2050: Anticipating Future Research, Policy, and Governance Needs.Public health genomics · 2026Article
- A call to action to scale up research and clinical genomic data sharing.Nature reviews. Genetics · 2025Review
- Australian public perspectives on genomic data governance: responsibility, regulation, and logistical considerations.European journal of human genetics : EJHG · 2024Article
- Exploring the dimensions of responsible research systems and cultures: a scoping review.Royal Society open science · 2024Article
- Challenges and opportunities in sharing microbiome data and analyses.Nature microbiology · 2023Review
- The human genome as the common heritage of humanity.Frontiers in genetics · 2023Article
- Regulating human genomic research in Africa: why a human rights approach is a more promising conceptual framework than genomic sovereignty.Frontiers in genetics · 2023Article
- Ethics and governance challenges related to genomic data sharing in southern Africa: the case of SARS-CoV-2.The Lancet. Global health · 2022Review
- Core elements of participant consent documents for Canadian human genomics research and the National Human Genome Library: guidance for policy.CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne · 2022Article
- Leveraging Algorithms to Improve Decision-Making Workflows for Genomic Data Access and Management.Biopreservation and biobanking · 2022Article
- Sharing and Safeguarding Pediatric Data.Frontiers in genetics · 2022Article
- Editorial: COVID-19 pandemics: Ethical, legal and social issues.Frontiers in genetics · 2022Article
- Article
- Human genome editing: how to prevent rogue actors.BMC medical ethics · 2020Article
- A Distributed Whole Genome Sequencing Benchmark Study.Frontiers in genetics · 2020Article
- Bioinformatics in Mexico: A diagnostic from the academic perspective and recommendations for a public policy.PloS one · 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
No grant is acknowledged in the PubMed record.
Abstract
Fostering data sharing is a scientific and ethical imperative. Health gains can be achieved more comprehensively and quickly by combining large, information-rich datasets from across conventionally siloed disciplines and geographic areas. While collaboration for data sharing is increasingly embraced by policymakers and the international biomedical community, we lack a common ethical and legal framework to connect regulators, funders, consortia, and research projects so as to facilitate genomic and clinical data linkage, global science collaboration, and responsible research conduct. Governance tools can be used to responsibly steer the sharing of data for proper stewardship of research discovery, genomics research resources, and their clinical applications. In this article, we propose that an international code of conduct be designed to enable global genomic and clinical data sharing for biomedical research. To give this proposed code universal application and accountability, however, we propose to position it within a human rights framework. This proposition is not without precedent: international treaties have long recognized that everyone has a right to the benefits of scientific progress and its applications, and a right to the protection of the moral and material interests resulting from scientific productions. It is time to apply these twin rights to internationally collaborative genomic and clinical data sharing.
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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.