ReviewHuman genetics2011
Identifiability in biobanks: models, measures, and mitigation strategies.
Review in Human genetics, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 43 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
43 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Privacy technology to support data sharing for comparative effectiveness research: a systematic review.Medical care · 2013Pooled it
- A case study comparing anonymized and synthetic health insurance claims data for medication safety assessments.NPJ digital medicine · 2026Article
- From reactive to proactive: Continuous protein monitoring for preventive health care.Science (New York, N.Y.) · 2025Review
- Legal aspects of privacy-enhancing technologies in genome-wide association studies and their impact on performance and feasibility.Genome biology · 2024Review
- The Costs of Anonymization: Case Study Using Clinical Data.Journal of medical Internet research · 2024Article
- [Artificial intelligence and secure use of health data in the KI-FDZ project: anonymization, synthetization, and secure processing of real-world data].Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2024Review
- [Re-identification potential of structured health data].Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2024Review
- Decentralised clinical trials: ethical opportunities and challenges.The Lancet. Digital health · 2023Review
- Privacy risks of whole-slide image sharing in digital pathology.Nature communications · 2023Article
- Statistical biases due to anonymization evaluated in an open clinical dataset from COVID-19 patients.Scientific data · 2022Article
- Biobanking and risk assessment: a comprehensive typology of risks for an adaptive risk governance.Life sciences, society and policy · 2021Review
- Using game theory to thwart multistage privacy intrusions when sharing data.Science advances · 2021Article
- Secondary Use of Clinical Data in Data-Gathering, Non-Interventional Research or Learning Activities: Definition, Types, and a Framework for Risk Assessment.Journal of medical Internet research · 2021Article
- MarkVCID cerebral small vessel consortium: I. Enrollment, clinical, fluid protocols.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2021Article
- Considerations for an integrated population health databank in Africa: lessons from global best practices.Wellcome open research · 2021Article
- Design and evaluation of a data anonymization pipeline to promote Open Science on COVID-19.Scientific data · 2020Article
- Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review.Journal of medical Internet research · 2020Article
- Consent requirements for research with human tissue: Swiss ethics committee members disagree.BMC medical ethics · 2018Article
- How Sensitive Is Genetic Data?Biopreservation and biobanking · 2017Article
- Security controls in an integrated Biobank to protect privacy in data sharing: rationale and study design.BMC medical informatics and decision making · 2017Article
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
The collection and sharing of person-specific biospecimens has raised significant questions regarding privacy. In particular, the question of identifiability, or the degree to which materials stored in biobanks can be linked to the name of the individuals from which they were derived, is under scrutiny. The goal of this paper is to review the extent to which biospecimens and affiliated data can be designated as identifiable. To achieve this goal, we summarize recent research in identifiability assessment for DNA sequence data, as well as associated demographic and clinical data, shared via biobanks. We demonstrate the variability of the degree of risk, the factors that contribute to this variation, and potential ways to mitigate and manage such risk. Finally, we discuss the policy implications of these findings, particularly as they pertain to biobank security and access policies. We situate our review in the context of real data sharing scenarios and biorepositories.
Indexed as
Identifiers
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.