Data-driven sudden cardiac arrest research in Europe: Experts' perspectives on ethical challenges and governance strategies.

ABSTRACT:

Background

Observational studies using large-scale databases and biobanks help improve prevention and treatment of sudden cardiac arrest (SCA) but the lack of guidance on data protection issues in this setting may harm patients' rights and the research enterprise itself. This qualitative study explored the ethical aspects of observational SCA research, as well as solutions.

Methods

European experts in SCA research, medical ethics and health law reflected on this topic through semi-structured interviews (N = 29) and a virtual roundtable conference (N = 18). The ESCAPE-NET project served as a discussion case. Findings were coded and thematically analysed.

Results

The first theme concerned the potential benefits and harms (at individual and group level) of

SUBMITTER: Bak MAR 

PROVIDER: S-EPMC10285638 | biostudies-literature | 2023 Sep

REPOSITORIES: biostudies-literature