Health Information Beyond Pandemic Emergencies: Privacy for Social Justice

The COVID-19 pandemic has forcefully revealed the critical importance of timely information to identify emerging infections, discern patterns of disease, and stop disease spread. Information about individuals both as patients, and as ordinary people in the world is necessary for each of these tasks. Yet the implications for information use and efforts to achieve social justice are significant. This Article first surveys information needs as revealed by the pandemic.

It then articulates different normative approaches to privacy and confidentiality to develop two implications for privacy and justice: that information gleaned in clinical care and information possessed by public health should be far more integrated, and that sectoral regulatory structures are deleterious. These implications suggest a third: that notice and choice models are misguided as a method for protecting individuals from discrimination and injustice. Individualistic notice and choice are particularly problematic from the perspective of risks of discrimination and social inequality. The Article concludes by suggesting that U.S. law should move away from the notice and choice model as the primary method for protecting privacy.