ArticleJournal of investigative medicine : the official publication of the American Federation for Clinical Research2010
Technical and policy approaches to balancing patient privacy and data sharing in clinical and translational research.
Article in Journal of investigative medicine : the official publication of the American Federation for Clinical Research, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 48 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
48 citing papers in PubMed.
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- A real-world data challenge: guidance for aligning data privacy compliance and fit-for-purpose usability.Health affairs scholar · 2025Article
- Leveraging foundation and large language models in medical artificial intelligence.Chinese medical journal · 2024Review
- Open science practices in traditional, complementary, and integrative medicine research: A path to enhanced transparency and collaboration.Integrative medicine research · 2024Article
- Article
- Toward an open access genomics database of South Africans: ethical considerations.Frontiers in genetics · 2023Article
- Current recommendations/practices for anonymising data from clinical trials in order to make it available for sharing: A scoping review.Clinical trials (London, England) · 2022Article
- The ethics of AI-assisted warfighter enhancement research and experimentation: Historical perspectives and ethical challenges.Frontiers in big data · 2022Article
- Using game theory to thwart multistage privacy intrusions when sharing data.Science advances · 2021Article
- Recent Developments in Privacy-Preserving Mining of Clinical Data.ACM/IMS transactions on data science · 2021Article
- A privacy-preserving design for sharing demand-driven patient datasets over permissioned blockchains and P2P secure transfer.PeerJ. Computer science · 2021Article
- PheMap: a multi-resource knowledge base for high-throughput phenotyping within electronic health records.Journal of the American Medical Informatics Association : JAMIA · 2020Article
- A comprehensive tool for creating and evaluating privacy-preserving biomedical prediction models.BMC medical informatics and decision making · 2020Article
- Use and Understanding of Anonymization and De-Identification in the Biomedical Literature: Scoping Review.Journal of medical Internet research · 2019Article
- A two-site survey of medical center personnel's willingness to share clinical data for research: implications for reproducible health NLP research.BMC medical informatics and decision making · 2019Article
- Biomedical Research Cohort Membership Disclosure on Social Media.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2019Article
- Is It Ethical to Use Genealogy Data to Solve Crimes?Annals of internal medicine · 2018Article
- Automated Real-Time Collection of Pathogen-Specific Diagnostic Data: Syndromic Infectious Disease Epidemiology.JMIR public health and surveillance · 2018Article
- Biospecimens and Biobanking in Global Health.Clinics in laboratory medicine · 2018Review
- Assessing privacy risks in population health publications using a checklist-based approach.Journal of the American Medical Informatics Association : JAMIA · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
Abstract
introductionClinical researchers need to share data to support scientific validation and information reuse and to comply with a host of regulations and directives from funders. Various organizations are constructing informatics resources in the form of centralized databases to ensure reuse of data derived from sponsored research. The widespread use of such open databases is contingent on the protection of patient privacy.
methodsWe review privacy-related problems associated with data sharing for clinical research from technical and policy perspectives. We investigate existing policies for secondary data sharing and privacy requirements in the context of data derived from research and clinical settings. In particular, we focus on policies specified by the US National Institutes of Health and the Health Insurance Portability and Accountability Act and touch on how these policies are related to current and future use of data stored in public database archives. We address aspects of data privacy and identifiability from a technical, although approachable, perspective and summarize how biomedical databanks can be exploited and seemingly anonymous records can be reidentified using various resources without hacking into secure computer systems.
resultsWe highlight which clinical and translational data features, specified in emerging research models, are potentially vulnerable or exploitable. In the process, we recount a recent privacy-related concern associated with the publication of aggregate statistics from pooled genome-wide association studies that have had a significant impact on the data sharing policies of National Institutes of Health-sponsored databanks.
conclusionBased on our analysis and observations we provide a list of recommendations that cover various technical, legal, and policy mechanisms that open clinical databases can adopt to strengthen data privacy protection as they move toward wider deployment and adoption.
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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.