Skip to main content

Table 1 Clustering of ethical aspects related to SCA research with observational data

From: Ethical aspects of sudden cardiac arrest research using observational data: a narrative review

Cluster Ethical theme Examples from the literature References
Potential harms Privacy • Linkage across datasets in critical care research increases the risk of re-identification of the individual [41]
Genetic discrimination • Genetic testing for SCA-associated conditions creates the potential for stigma and discrimination [30, 31]
Disclosure of individual findings • Dilemma: whether or not to inform patients with a high risk of SCA who refuse to know their test results [36]
Research design • SCA data may be of low quality due to the acute setting and variety of data sources: sound methodology is vital [38,39,40,41,42]
• Incorrect subject selection may exacerbate SCA knowledge gaps between developed and developing countries
Applications • The creation of (incorrect) risk profiles (e.g. for hypertrophic cardiomyopathy) may give rise to health disparities [41, 46]
Protective measures Informed consent • Insistence on informed consent for use of data from emergency medical settings would bias research [18, 41, 53,54,55, 60]
• Deferred consent for data collection is seen by patients as an acceptable consent model in emergency settings
Data governance • Critical care research without consent requires safeguards (e.g. safe-havens) to protect data security [41, 54]