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Abstract

Casual proposals for data democracy abound in the bioethical literature on medicalized data privacy. However, experts construe this goal differently according to their personal priorities, political proclivities, and institutional experience, and systematic attempts to reconcile these visions and evaluate their feasibility are lacking. Starting from first principles of constitutional law and privacy ethics, this paper considers the origins and validity of four data democracy philosophies spanning the political spectrum: deregulation, regulation, intermediary advocacy, and collective organizing. It canvasses potential approaches to enacting this system and presents structural impediments to privacy preference aggregation and data governance. References are primarily medicalized privacy philosophy studies and literature reviews but also include technical big data studies, public opinion surveys, legal scholarship and forecasts, public legislative records, and an interview with Dr. Peter Angelos at the UChicago Maclean Center for Clinical Medical Ethics. I argue based on this investigation that data democracy as commonly conceived of is – perhaps unsurprisingly – a worthy aim and a powerful tool to safeguard privacy. The intermediary approach to governance presents an especially compelling and realistic case. But before enacting systematic change, American society might do well to return to first principles, drumming up more grassroots participation, fortifying our institutions, and elevating democratic values besides privacy in our pursuit of an egalitarian regime.

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