Abstract
Wearable self-tracking devices capture multidimensional health data and offer several advantages including new ways of facilitating research. However, they also create a conflict between individual interests of avoiding privacy harms, and collective interests of assembling and using large health data sets for public benefits. While some scholars argue for transparency and accountability mechanisms to resolve this conflict, an average user is not adequately equipped to access and process information relating to the consequences of consenting to further uses of her data. As an alternative, this paper argues for fiduciary relationships, which put deliberative demands on digital health data controllers to keep the interests of their data subjects at the forefront as well as cater to the contextual nature of privacy. These deliberative requirements ensure that users can engage in collective participation and share their health data at a lower risk of privacy harms. This paper also proposes a way to balance the flexible and open-ended nature of fiduciary law with the specific nature and scope of fiduciary duties that digital health data controllers should owe to their data subjects.
Highlights
Much has been written about the opportunities of a health revolution offered by the recent proliferation of digital devices, associated apps and network based platforms (Lupton 2015)
The stakes are high for health data, as inappropriate handling of health information can inflict objective harms on individuals as well as psychological or subjective harm (Gostin and Hodge 2001; Konnoth 2015)
Transparency and consent mechanisms, I argue in this paper, are inadequate in protecting against privacy harms, or creating trustworthiness required for users to share health data, on account of the ‘costs’ of transparency
Summary
Much has been written about the opportunities of a health revolution offered by the recent proliferation of digital devices, associated apps and network based platforms (Lupton 2015). Transparency and consent mechanisms, I argue in this paper, are inadequate in protecting against privacy harms, or creating trustworthiness required for users to share health data, on account of the ‘costs’ of transparency. I argue that digital health data controllers should be assigned an information fiduciary role, wherein, they are required to keep the interests of data subjects at the forefront, with regards to the protection of privacy. Similar arguments have since led to efforts to define fiduciary principles, such that facts, rather than status, can be used to determine fiduciary relationships Defining these principles allows for making decisions about relationships that are new (such as between health data controllers and users) or may arise in the future. Vulnerability, as an indicium for fiduciary relationships, seems too broad and imprecise
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