ArticleEuropean journal of human genetics : EJHG2016
The risk of re-identification versus the need to identify individuals in rare disease research.
Article in European journal of human genetics : EJHG, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 41 papers.
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
41 citing papers in PubMed.
- Precision medicine in low-income settings and small island developing states.Nature reviews. Endocrinology · 2026Review
- Mapping Rare Disease Registries in Brazil: Situational Analysis and Proposal for National Unification.Journal of medical systems · 2026Article
- LLM research on public biosignals data is needed to protect patients.NPJ digital medicine · 2026Review
- Generative AI-Assisted Medical Illustrations in Pediatric Neurosurgery : Workflows, Ethical Safeguards, and Journal Policy Considerations.Journal of Korean Neurosurgical Society · 2026Review
- Bridging Data, Semantics, and Clinical Reasoning: A Knowledge Graph Framework for Pediatric Obstructive Sleep Apnea.Children (Basel, Switzerland) · 2026Article
- Foundation model embeddings for multimodal oncology data integration.NPJ digital medicine · 2026Article
- Privacy-by-Design with Federated Learning will drive future Rare Disease Research.Journal of neuromuscular diseases · 2026Review
- Diagnosing a genetic disease in a donor-conceived child: case report and discussion of the ethical, legal, and practical issues.Pediatric nephrology (Berlin, Germany) · 2025Review
- Considerations for Social Networks and Health Data Sharing: An Overview.Annals of epidemiology · 2025Review
- Private pathological assessment via machine learning and homomorphic encryption.BioData mining · 2024Article
- EU-US data transfers: an enduring challenge for health research collaborations.NPJ digital medicine · 2024Review
- An Ethical Approach to Genomic Privacy Preserving Technology Development.Proceedings. IEEE International Conference on Healthcare Informatics · 2024Article
- Preferences on Governance Models for Mental Health Data: Qualitative Study With Young People.JMIR formative research · 2024Article
- SHARE: An ethical framework for equitable data sharing in Caribbean health research.Revista panamericana de salud publica = Pan American journal of public health · 2024Article
- Cancer treatment comes to age: from one-size-fits-all to next-generation sequencing (NGS) technologies.BioImpacts : BI · 2024Review
- Aligning Semantic Interoperability Frameworks with the FOXS Stack for FAIR Health Data.Methods of information in medicine · 2023Article
- Addressing the ethical and societal challenges posed by genome-wide association studies of behavioral and brain-related traits.Nature neuroscience · 2023Review
- A one-size-fits-all approach to data-sharing will not suffice in lifecourse research: a grounded theory study of data-sharing from the perspective of participants in a 50-year-old lifecourse study about health and development.BMC medical research methodology · 2023Article
- Toward an open access genomics database of South Africans: ethical considerations.Frontiers in genetics · 2023Article
- BEYOND LEGAL FRAMEWORKS AND SECURITY CONTROLS FOR ACCESSING CONFIDENTIAL SURVEY DATA IN THE UNITED STATES: ENGAGING DATA USERS IN DATA PROTECTION.The Journal of privacy and confidentiality · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors.
Funding
Abstract
There is a growing concern in the ethics literature and among policy makers that de-identification or coding of personal data and biospecimens is not sufficient for protecting research subjects from privacy invasions and possible breaches of confidentiality due to the possibility of unauthorized re-identification. At the same time, there is a need in medical science to be able to identify individual patients. In particular for rare disease research there is a special and well-documented need for research collaboration so that data and biosamples from multiple independent studies can be shared across borders. In this article, we identify the needs and arguments related to de-identification and re-identification of patients and research subjects and suggest how the different needs may be balanced within a framework of using unique encrypted identifiers.
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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.