Privacy, health insurance, and medical research: tensions raised by European data protection law

Medical research, particularly using biobanking and genetic information, relies upon a full disclosure of medical information from as wide a group as possible. This reveals individuals' vulnerabilities that could lead to disease, but also to early diagnosis and treatment where it is available. In health insurance, this same information is used to inform decisions about the availability (including cost) of cover for the individual. In individual risk-based insurance this creates a tension with the social purposes of medical research. Within the regulatory framework, one of the most important legal instruments in Europe is the Data Protection Directive (95/46/EC). It operates within a context of the right to a private life in the European Convention on Human Rights. This paper asks how this central piece of legislation, within a discussion of the conceptualization of privacy, addresses the tension between medical research and health insurance.