Good science at heart: Lessons on ethics from big data research in sudden cardiac arrest

We all have something to hide from someone. Especially in the field of health research with vulnerable subjects, the age of big data brings major ethical dilemmas. The current balance between values such as privacy on the one hand and the value of scientific research on the other, is a delicate one. In this PhD thesis a case study is presented of a European research consortium (a project called ESCAPE-NET) which conducts large-scale collection and analysis of personal data and DNA samples from sudden cardiac arrest patients. This book explores how to responsibly handle such research data from a patient population that cannot give prior informed consent – as victims are at least temporarily incapacitated and many do not survive the sudden cardiac arrest at all. Using an ethics parallel approach, various empirical and conceptual studies were performed that involved patients, their next-of-kin, researchers, ethicists, and legal experts.
Respectively, the main themes addressed in this thesis are the benefits and harms of health data research, the post-mortem use of data for research, and the translation of data into clinical practice. Specific recommendations are provided for the sudden cardiac arrest setting but findings have broader relevance. The author shows that there are no a priori objections to health data research, but that the goodness of science can only be evaluated when ethical aspects are taken into account that relate to the data themselves, to their governance, and to their eventual use. To responsibly guide future developments in health data research, we will need a contextual approach that is grounded in trust and built upon data democracy.