Health Data Sharing for Scientific Research: Closing Data “As Necessary” and Opening it “As Possible”

Data use and sharing are of paramount importance within the domain of medical and biomedical research. However, there are several reasons why data is not easily shared at national and international levels. This chapter considers the individual’s right to the protection of personal data, which plays a pivotal role in regulating and limiting health data sharing, and the Open Science, Open Access, Open Data and Open Research Data movements and policies, which instead aim to facilitate the opening up of scientific research. In particular, the chapter discusses the international law on the protection of personal health data in scientific research and the policies for data sharing, analyses the interplay between them, and presents and compare the rules with the European Union framework. Comparative law and its plural methodologies will be fundamental in order to search the similarities and differences of the rules in different legal frameworks and eventually frame the solutions in common perspectives.