Health Data Federalism

Health Data Federalism

Imagine that you are a patient in a large health system. Information about your biometrics (heart rate, blood pressure, temperature), ailments (sleep disorders, COVID-19 history, cancer), demographics (age, sex, address), sexual and reproductive history (sexually transmitted infections, tests, pregnancies, and pregnancy terminations), medications, insurance coverage, allergies, genetic and family history, and vaccinations is all stored in your electronic health record (EHR).1 Your healthcare system, insurance company, and related EHR vendors can all access this data.2 These firms use your data not just for their own analyses but also to sell to the highest bidder.3 That said, the firms are also subject to long-standing state regulation, requiring that they share data for the public good while at the same time maintaining privacy.4 Further imagine that the federal government intervenes not just to rein in states but to hand those reins over to private entities. Private firms then would control a new national data network and could determine when and whether to follow any state rules with respect to your most intimate medical details over the course of your entire life. Such control over data would allow them to engage in price manipulation, stymie research, and create risks for individual consumers, including discrimination, blackmail, and identity theft.5 This scenario implicates the future of health dataand of federalism.


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