Research Library

Domestic Health Policy

Center for Health and Biosciences

Child health, big data & ethics

Child health, big data & ethics.

By Quianta Moore, Tara Blagg and Hannah Todd

The Advancing Care for Exceptional Kids Act proposes a national database that would serve as a centralized source of information on children with medically complex conditions. The aim is to improve treatment and care coordination. The authors of this brief argue, however, that the database could put children and their families at risk of discrimination by making their health information public, and therefore accessible to employers and health insurers.