Health Information Beyond Pandemic Emergencies: Privacy for Social Justice

Abstract

Moving beyond notice and choice is necessary if data are to be used responsibly for public health. But what directions might this movement take? Transparency and enactment of statutory limits on data uses are the two most prominent possibilities.

Transparency could require entities collecting, possessing and using information drawn from more than a specified number of individuals to make public disclosures of their information collection, possession, and use. There are models for developing such transparency requirements. The California CPPA could provide a model for delineating the size of entities required to make such disclosures. The requirements to disclose the results of federally funded research could provide a model for the form disclosures could take. The Native American Graves Protection and Repatriation Act (NAGPRA) could provide a model for how making information available could enable watchdog groups or groups with particular interest to call attention to particular forms of data protection and use.

Prohibition of certain forms of data collection and use is both more drastic and more problematic. The observation that over-regulation may lead to under-regulation is common. Although there are models of prohibition, in particular GINA and the ADA, these models are limited in scope and of limited efficacy because they can be avoided in so many ways. At present, moreover, our knowledge of the universe of data use and the impacts of these uses is woefully incomplete. Required transparency about data collection, possession, and use may be a needed initial step to increase public discussion about the benefits and burdens of data use, including its use in pandemic emergencies. Notice and choice is a move in the wrong direction for the evolution of data use in pandemics.

Keywords: health data, data collection, transparency, pandemics