In this thesis, I establish whether, and how, a ‘privacy-based’ approach can help regulate secondary uses of patients’ data. I use Article 8 of the European Convention on Human Rights as bedrock of my definition of ‘privacy.’ My approach thus re-grounds the law governing patients’ data in a foundational legal standard, which cuts across multiple strands of legal doctrine.
I address this question over the course of seven publications, through which run the threads of five case-studies of secondary use: scientific research, tissue donation, immigration, software development and public health analytics. The result of my analysis is a clarified conception of three key aspects of Article 8, which help determine the scope and nature of patients’ rights in their data:
• Identification;
• Private Life;
• Justification.
This thesis is structured in three Parts, with each Part centring on one of these concepts in turn. Parts 1 and 2 respectively define ‘identification’ and ‘private life’ as relating to information which can interfere with Article 8. Part 3 then considers how secondary uses of patients’ data should be justified under Article 8, with particular emphasis on the requirements of proportionality and non-discrimination.
Ultimately, I argue that these clarified conceptions of identification, private life and
justification can help govern secondary uses of patients’ data. They help interpret data protection, confidentiality and privacy law in a way that not only creates greater intellectual coherence, but also improves legal protection for patients. I conclude that all secondary uses of identifiable patient data engage Article 8, and thus require robust, systematic justification.
