ReviewCritical care (London, England)2018
Ethical aspects of sudden cardiac arrest research using observational data: a narrative review.
Review in Critical care (London, England), 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 3 of them syntheses 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
15 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Current Trends in Biohumoral Screening for the Risk of Sudden Cardiac Death: A Systematic Review.Medicina (Kaunas, Lithuania) · 2024Pooled it
- Specific measures for data-intensive health research without consent: a systematic review of soft law instruments and academic literature.European journal of human genetics : EJHG · 2024Pooled it
- Stakeholders' perspectives on the post-mortem use of genetic and health-related data for research: a systematic review.European journal of human genetics : EJHG · 2020Pooled it
- Research participant perceptions of personal utility in disclosure of individual research results from genomic analysis.Journal of community genetics · 2024Article
- Out-of-hospital cardiac arrest research progress and challenges in Lithuania.Resuscitation plus · 2024Review
- Rationale and design of the BECA project: Smartwatch-based activation of the chain of survival for out-of-hospital cardiac arrest.Resuscitation plus · 2024Article
- Data-driven sudden cardiac arrest research in Europe: Experts' perspectives on ethical challenges and governance strategies.Resuscitation plus · 2023Review
- Towards trust-based governance of health data research.Medicine, health care, and philosophy · 2023Article
- Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research.Science and engineering ethics · 2022Article
- Individual-level income and out-of-hospital cardiac arrest survival in men and women.Open heart · 2022Article
- Resuscitation with an AED: putting the data to use.Netherlands heart journal : monthly journal of the Netherlands Society of Cardiology and the Netherlands Heart Foundation · 2021Review
- Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin.BMC medical ethics · 2021Article
- [Ethics of resuscitation and end of life decisions].Notfall & rettungsmedizin · 2021Review
- Big data and data processing in rheumatology: bioethical perspectives.Clinical rheumatology · 2020Review
- Women have lower chances than men to be resuscitated and survive out-of-hospital cardiac arrest.European heart journal · 2019Article
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
Sudden cardiac arrest (SCA) accounts for half of all cardiac deaths in Europe. In recent years, large-scale SCA registries have been set up to enable observational studies into risk factors and the effect of treatment approaches. The increasing scale and variety of data sources, coupled with the implementation of a new European data protection legal framework, causes researchers to struggle with how to handle these 'big data'. Data protection in the SCA setting is especially complex since patients become at least temporarily incapacitated, and are thus unable to provide prospective informed consent, and because the majority of patients do not survive. A narrative review employing a systematic literature search was conducted to thematically analyse ethical aspects of non-interventional emergency medicine and critical care research. Although the identified issues may apply to a wider patient population, we describe them within the context of SCA research. Potential harms were found to include: privacy breaches, genetic discrimination and issues associated with the disclosure of individual findings, study design and application of research results. Measures proposed to mitigate harms were: alternative informed consent models including deferred or waived consent and data governance approaches promoting data security, responsible sharing and public engagement. The themes identified in this study may serve as a basis for a much-needed ethical framework regarding research with data from patients with acute and critical illness such as SCA.
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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.