Ethiek van big data onderzoek in medische noodsituaties

This research is part of a European consortium known as ESCAPE-NET (the European Sudden Cardiac Arrest network towards Prevention, Education and NEw Treatment). ESCAPE-NET is an EU-funded project (Horizon 2020) which aims to fully exploit available data towards improving Sudden Cardiac Arrest (SCA) management. The project involves 16 expert centers from ten European countries, and the Amsterdam UMC (location AMC) is in charge of the ‘ethics work package’.

Sudden cardiac arrest (SCA) is lethal within minutes if left untreated. In Europe, SCA accounts for approximately 50% of cardiac death and 20% of all natural deaths. In recent years, various large observational SCA cohorts have been established around the world and international research collaborations have emerged to study SCA prevention and treatment. However, the collection and use of big observational data in healthcare brings about a number of ethical dilemmas relating to issues such as informed consent and privacy, thereby giving rise to debates about the correct balance between medical research and data subjects’ rights. In SCA research, these issues are intensified by the emergency circumstances that prevent patients from giving prior informed consent to the use of their data, which is especially problematic for the majority of patients that do not survive the arrest. Although ethical issues in SCA trials have been widely debated, there is a paucity of literature on the ethical aspects of non-interventional research with data obtained from patients in emergency circumstances. As part of the ESCAPE-NET project, several sub-studies on ethical issues related to data collection of SCA victims and data merging are being performed, studying ethics surrounding the transfer and combination of large amounts of data about SCA patients on the one hand, and the translation of data into treatment strategies on the other.