Searching Eyes: Privacy, the State, and Disease Surveillance in America (review)

Ever since George Orwell’s 1949 classic 1984, the image of “Big Brother” has loomed in the imagination of those who fear for freedom when personal privacy is violated by government surveillance. However, the social benefit derived when such surveillance involves matters of health and disease complicates matters. Now a comprehensive volume, stunning in its scope and erudition, explores the intersection of privacy rights, public health, and epidemiology in the United States since the late nineteenth century.

Coauthors Amy L. Fairchild, Ronald Bayer, and James Colgrove, all faculty at Columbia University’s Mailman School of Public Health, begin with the premise that “Surveillance serves as the eyes of public health” (p. 1). As early as 1741, the Rhode Island colony required tavern keepers to report patrons with infectious disease to local authorities, but it was not until after the Civil War that the Massachusetts Board of Health called on physicians to create a “systematic weekly registration of diseases” (p. 3). Following the bacteriological revolution at the end of the century, surveillance became the foundation of disease control. Isolation, contact tracing, and house-to-house inspection were ways of containing disease and charting its path through a community.

Public health giants, such as New York’s health commissioner, Hermann Biggs, thought surveillance crucial in the late-nineteenth-century struggle against tuberculosis and venereal diseases. In this era of “paternalistic privacy” (p. xviii), there was competition among those who hoped to do the looking and reporting. Jousting for control, public health officials butted heads with physicians who advocated privacy, insisting that they, and not public health officials, ought to decide what information about their patients might be divulged and to whom.

Those under surveillance often resisted. Patients’ fears about the social stigma of being identified as a victim of venereal disease or tuberculosis prompted the development of identification techniques that did not require names. During the twentieth century, the struggle over privacy became more nuanced, or “democratized” (p. xix). Those suffering from or vulnerable to a specific illness or disability often demanded to be on the radar scope, hoping that highlighting their needs might result in better understanding of their conditions and resources for research and treatment. Those battling occupational diseases, birth defects, and cancer bartered privacy for inclusion.

But accuracy was problematic. Were tumor registries, for example, kept with sufficient precision to make them valuable weapons against disease? Definitions, likewise, were tricky. Among birth defects, cleft palate and spina bifida are readily apparent, but fetal alcohol syndrome is hard to diagnose and not evident at birth. As federal and state medical surveillance has increased, so have debates on reporting techniques and funding.

Individual privacy remains an issue. HIV/AIDS and the stigma it engenders has stoked significant controversy. This study examines surveillance debates surrounding AIDS, such as name reporting versus case reporting by unique identifiers and whether such reports should be used only to determine the contours of the epidemic or to craft interventions such as partner notification.

The authors conclude by exploring legislative efforts to reconcile the demands for confidentiality and the need for surveillance, such as the 1990s’ Model State Public Health Privacy Act, a pattern for some state laws. The federal Health Insurance Portability and Accountability Act of 1996 (HIPAA) includes limits protecting patient privacy while still permitting valuable health surveillance.

Post–9/11 security fears about bioterrorism created new demands for government and military scrutiny of various kinds; yet an integrated system of health surveillance data remains unrealized. The debate over the conflicting demands of patient confidentiality is likely to remain a perennial. Searching Eyes may be too detailed for most undergraduates, but graduate students will find it a treasure trove of dissertation topics, and for scholars, it is indispensable reading...