Ethical and legal perspectives on big data in research

This PhD thesis focuses on the legal and ethical aspects of Big Data in general and in research. Big Data holds the promise of resolving many pressing questions in commercial and research settings. In fact, the use of Big Data to reveal individual or group patterns and the use of predictive analysis are already effective in several areas ranging from building smart hospitals and cities to fighting climate change and to predict individual health related topics. Big Data thus touches the core of today’s massively interlinked and connected society; this omnipresent use raises societal questions and also affects individual rights, raising many issues for regulators. To assess issues in regulation and identify ethical challenges with the use of Big Data, interviews were conducted in Switzerland and the USA. In Switzerland we interviewed Data-Protection-Officers of all cantons with Universities and University hospitals) and hospital lawyers. The US sample consisted of lawyers with a connection to Big Data or dealing with medical Big Data. The publications that arose from the project can be grouped into the following categories. A first group of publications deals with the relationship between tech companies and their users and explores how to build a “trusted partnership”. A second group has the focus on health data in general and the fact that the distinction between health and non-health data gets more and more blurry. A third group of publications based on the results of our interviews deals with legal and ethical issues on the use of big Data ranging from special hands on topics of for example data sharing (Social Messaging) in the hospital to discussing the building blocks of data protection law and ownership.