The False Promise of Health Data Ownership

Abstract

In recent years there have been increasing calls by patient advocates, health law scholars and would-be data intermediaries to recognize personal property interests in individual health information (IHI). While the propertization of IHI appeals to notions of individual autonomy, privacy and distributive justice, the implementation of a workable property system for IHI presents significant challenges. This essay addresses the issues surrounding the propertization of IHI from a property law perspective. It first observes that IHI does not fit recognized judicial criteria for recognition as personal property, as IHI defies convenient definition, is difficult to possess exclusively, and lacks justifications for exclusive control. Second, it argues that if IHI property were structured along the lines of traditional common law property, as suggested by some propertization advocates, prohibitive costs could be imposed on socially valuable research and public health activity and IHI itself could become mired in unanticipated administrative complexities. Third, it discusses potential limitations and exceptions on the scope, duration and enforceability of IHI property, both borrowed from intellectual property law and created de novo for IHI.

Yet even with these limitations, inherent risks arise when a new form of property is created. When owners are given broad rights of control, subject only to enumerated exceptions that seek to mitigate the worst effects of that control, Constitutional constraints on governmental takings make the subsequent refinement of those rights difficult if not impossible, especially when rights are distributed broadly across the entire population. Moreover, embedding a host of limitations and exceptions into a new property system simply to avoid the worst effects of propertization begs the question whether a property system is needed at all, particularly when existing contract, privacy and anti-discrimination rules already exist to protect individual privacy and autonomy in this area. It may be that one of the principal results of propertizing IHI is enriching would-be data intermediaries with little net benefit to individuals or public health. This essay concludes by recommending that the propertization of IHI be rejected in favor of sensible governmental regulation of IHI research coupled with existing liability rules to compensate individuals for violations of their privacy and abusive conduct by data handlers.

Keywords: property, genetic data, health information, medical records, ownership