Much Ado About Data Ownership

Abstract: Recently there have been calls to clarify ownership of data held in large health information networks. This article explores the realities of what patient data ownership would imply to explain why a clearer allocation of entitlements to raw health data would neither enhance patient privacy nor promote access to valuable data resources for public health and research. It updates the debate to account for the 2009 HITECH Act, which correctly recognized that raw patient data are not the valuable resource; these data acquire value only through the application of infrastructure services. The HITECH Act drew on a long tradition of American infrastructure regulation that offers real promise in resolving the infrastructure bottlenecks which (rather than the unresolved status of data ownership) have been the key impediment to data access. Despite this progress there are two unresolved problems, both heretofore neglected in the literature: First, the existing federal regulatory framework governing data access conceives the state’s police power to use data to promote public health much more narrowly than the police power is conceived in all other legal contexts. Second, existing regulatory provisions allowing nonconsensual access to data for research fail to incorporate any “public use” requirement to ensure that unconsented research uses of data are justified by a publicly beneficial purpose. As things stand, persons whose health data are used in research have no assurance that the use will serve any socially beneficial purpose at all. This article reframes the debate. The right question is not who owns health data. Instead, the debate should be about appropriate public uses of private data and how best to facilitate them while adequately protecting individuals’ interests.

Barbara J. Evans: Associate Professor; Co-director, Health Law & Policy Institute, University of Houston Law Center, : Barbara J. Evans, Much Ado About Data Ownership, 25 HARVARD JOURNAL OF LAW & TECHNOLOGY (forthcoming 2011), available at: http://ssrn.com/abstract=1857986
bjevans@central.uh.edu. J.D., Yale Law School; Ph.D., Stanford University; Post-doctoral Fellow, The University of Texas M.D. Anderson Cancer Center. This research has been supported by the Greenwall Foundation and by the University of Houston Law Foundation.