University of Utah S.J. Quinney College of Law Professor Jorge Contreras has co-authored a newly published article with Francisca Nordfalk, a graduate student from Copenhagen University who spent one month at the U during 2018.
The article, entitled “Liability (and) Rules for Health Information,” was published in Health Matrix: The Journal of Law-Medicine. It includes two case studies related to the use of individual health information in biomedical research: the Utah Population Database and Statistics Denmark. In each of these cases, the government has established a rich set of data about the local population and made this data available to researchers under strict requirements concerning privacy and individual re-identification. Contreras and Nordfalk used these case studies to analyze recent proposals that individual health data be treated as personal property – a movement that would run counter to at least a century of U.S. statutory and judicial law. They concluded that propertizing information would cause more harm than good, and that sensible regulation of data usage, coupled with liability remedies for breaches of data use requirements – as exemplified by our case studies in Utah and Denmark – strike the right balance between individual privacy and socially-beneficial research.
Contreras spoke further about data ownership issues at the annual conference of the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics at Harvard Law School in May, where the focus was direct-to-consumer genetic testing technologies. His post discussing these issues entitled “Do You Own Your Genetic Test Results? What About Your Temperature?” appeared on Harvard’s Bill of Health blog, and his draft paper “The False Promise of Health Data Ownership” (forthcoming in NYU Law Review) addresses these issues in greater depth.