ArticleNPJ genomic medicine2016
Sharing health-related data: a privacy test?
Article in NPJ genomic medicine, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 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
18 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Responsible data sharing in international health research: a systematic review of principles and norms.BMC medical ethics · 2019Pooled it
- Privacy in perspective: research participants' priorities and concerns related to sharing data generated in human neuroscience studies.Neuroethics · 2025Article
- Public Attitudes Regarding Trade-offs Between the Functional Aspects of a Contact-Confirming App for COVID-19 Infection Control and the Benefits to Individuals and Public Health: Cross-sectional Survey.JMIR formative research · 2022Article
- 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
- Ensuring ethical data access: the Sierra Leone Ebola Database (SLED) model.Annals of epidemiology · 2020Article
- Researcher Perspectives on Data Sharing in Deep Brain Stimulation.Frontiers in human neuroscience · 2020Article
- Dynamic-informed consent: A potential solution for ethical dilemmas in population sequencing initiatives.Computational and structural biotechnology journal · 2020Review
- Why Do Data Users Say Health Care Data Are Difficult to Use? A Cross-Sectional Survey Study.Journal of medical Internet research · 2019Article
- Federated discovery and sharing of genomic data using Beacons.Nature biotechnology · 2019Article
- Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
- Genomic variant sharing: a position statement.Wellcome open research · 2019Article
- Registered access: authorizing data access.European journal of human genetics : EJHG · 2018Article
- Enhancing diversity to reduce health information disparities and build an evidence base for genomic medicine.Personalized medicine · 2018Article
- The development of large-scale de-identified biomedical databases in the age of genomics-principles and challenges.Human genomics · 2018Review
- "Matching" consent to purpose: The example of the Matchmaker Exchange.Human mutation · 2017Article
- Aftermath of bustamante attack on genomic beacon service.BMC medical genomics · 2017Article
- A critique of the regulation of data science in healthcare research in the European Union.BMC medical ethics · 2017Article
- Registered access: a 'Triple-A' approach.European journal of human genetics : EJHG · 2016Article
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
Greater sharing of potentially sensitive data raises important ethical, legal and social issues (ELSI), which risk hindering and even preventing useful data sharing if not properly addressed. One such important issue is respecting the privacy-related interests of individuals whose data are used in genomic research and clinical care. As part of the Global Alliance for Genomics and Health (GA4GH), we examined the ELSI status of health-related data that are typically considered 'sensitive' in international policy and data protection laws. We propose that 'tiered protection' of such data could be implemented in contexts such as that of the GA4GH Beacon Project to facilitate responsible data sharing. To this end, we discuss a Data Sharing Privacy Test developed to distinguish degrees of sensitivity within categories of data recognised as 'sensitive'. Based on this, we propose guidance for determining the level of protection when sharing genomic and health-related data for the Beacon Project and in other international data sharing initiatives.
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.