Private Interests in the Public Domain: Provacy and Confidentiality in Observational Health Research

Abstract

The expectation of privacy and confidentiality in health care presents a unique dilemma for public health interests. A great deal of observational health research such as epidemiological studies, disease surveillance, and quality assurance depends on access and use of personal information in the absence of individual consent. Understandably, this raises concerns about personal privacy since sensitive disclosures of information can result in harm such as stigma, discrimination, and loss of socio-economic goods. However, the issue has been largely framed and discussed as a dichotomy: the privacy interest of the individual versus the social interest in research. to individualist paradigm informed by a traditional liberal conception of privacy that emphasizes autonomy drives this dichotomy and inevitably leads to an intractable conflict. In this thesis, I attempt to re-frame the issue by moving away from individualism in shifting the focus towards confidentiality which is relational and founded on trust. I argue that confidentiality is broader than the concern for individual privacy and is thus capable of capturing other relevant interests, such as collective and social interests. I advance a broad conception of confidentiality grounded in a mixed deontic-consequentialist moral framework that can account for respect for persons and social interests.