Regulating Data Privacy in the American Political Economy: The Case of Health Information Technology and Health Insurance

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Degree type
Doctor of Philosophy (PhD)
Graduate group
Political Science
Discipline
Political Science
Public Affairs, Public Policy and Public Administration
Public Health
Subject
American political development
American politics
Data privacy
Health policy
Political economy
Social sciences
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Copyright date
01/01/2024
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Author
Ma, Claire, Lee
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Abstract

The modern data economy has reignited concerns about the privacy of consumer data and revitalized calls for more robust federal protections against data misuse. Yet, both data privacy and consumer advocates have struggled for decades to pass legislation to protect consumers. When and why does the federal government intervene to protect consumers from data-driven discrimination? I use three historical cases of federal consumer protection in health data technological change – the emergence of experience rating in health insurance in the 1940s, the development of electronic health records systems in the 1980s and 1990s, and the revolutionary discovery of the links between genetics and human health at the turn of the century – to understand federal responses to protect consumers from discrimination on the basis of their health status. Drawing from Congressional records, secondary policy analyses and reports, historiographies, archival records, news reporting, and trade organization documents, I argue that the federal government’s increased role in governing consumer health data was shaped by the increased delegation of rationalization to private actors in health care. Specifically, as market reforms delegated responsibility for cutting costs and increasing the efficiency of healthcare delivery to private actors and individuals, a diverse set of interests became politically invested in a national system of data governance. These rationalization policies encouraged interest groups and federal policymakers to converge over support for greater federal intervention in consumer health data protections to protect the viability of interconnected health information systems.

Advisor
Lynch, Julia, F.
Date of degree
2024
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