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. / Thesis / Doctor of Philosophy (PhD)

This thesis draws on a community-engaged digital-mapping project with the Vancouver Island Coast Salish community of the Stz’uminus First Nation. In this paper, I discuss the ways in which conventional cartographic representations of Indigenous peoples are laden with methodological and visual assumptions that position Indigenous peoples’ perspectives, stories, and experiences within test-, proof-, and boundary-driven legal and Eurocentric contexts. In contrast, I frame this project’s methodology and digital mapping tools as an effort to map a depth of place, the emotional, spiritual, experiential, and kin-based cultural context that is routinely glossed over in conventional mapping practices. I argue elders’ place-based stories, when recorded on video and embedded in a digital map, produce a space for the “unmappable,” that which cannot, or will not, be expressed within the constructs of a static two-dimensional map. This thesis also describes a refusal to steep maps too deeply in cultural context for a public audience. I detail the conversations that emerged in response to a set of deeply spiritual, cultural, and personal stories to mark how the presence of Coast Salish law, customs, power structures, varying intra-community perspectives, and refusal came to bear on the production of “blank space” (interpreted colonially and legally as terra nullius) in this project’s cartographic representation. Finally, I conclude that Coast Salish sharing customs are embedded within networks of Coast Salish customary legal traditions, which fundamentally affects tensions that arise between storytelling and digital mapping technologies, between academic and community accountabilities, and between collective and individual consent. / Graduate / 2019-10-13