An Epidemic Of Disease Reporting

Abstract

Most of us are familiar with the practice of reporting the names of patients with dangerous, communicable diseases to the state health department so that officials can investigate the cause of an epidemic. It might come as a surprise, however, that this practice has spread beyond contagious diseases such as severe acute respiratory syndrome (SARS) to chronic conditions such as cancers, asthma, and lupus, as well as to immunizations, genetic and congenital anomalies in newborns, and even blood sugar levels in people with diabetes. The proliferation of statutes and regulations requiring providers to report patients’ names and medical information to the state has itself begun to look like an epidemic, for reasons that are not easily detected. All mandatory reporting proposals raise the same basic constitutional question: does the state have a sufficiently important need for identifiable information to override a person’s right to keep that information private? Identifying patients with a dangerous contagious disease may detect a budding epidemic and prevent its spread. Today, however, case reports are often collected to track the incidence and prevalence of diseases, study cancer risks and treatments, and estimate funding needs for grants and public programs. Many programs operate much like ordinary research studies. Thus, mandatory reporting of identifiable medical information can clash squarely with legal and ethical principles forbidding research without consent. The few U.S. Supreme Court cases that address reporting laws offer little guidance for deciding whether researchoriented reporting laws would be upheld. Although reporting laws are rarely challenged in court, they can generate controversy. Searching Eyes chronicles the controversies in mandatory reporting laws for TB, syphilis, occupational diseases, cancer, birth defects, HIV/ AIDS, and immunizations. The book’s title comes from Justice William O. Douglas’s 1957 warning against “the searching eyes of government” during the cold war (p. xvi). Amy Fairchild, Ronald Bayer, and James Colgrove— a historian, a political scientist, and a public health specialist, respectively—present a fascinating glimpse into the little-known field of disease surveillance, its personalities, and its politics. The authors’ thesis is that a patient’s need (or desire) for privacy often conflicts with government’s need (or desire) for information. Yet the conflict has frequently been a turf battle between medicine and public health (p. 80) or between government agencies. For example, in the late 1800s, New York City physicians, wary of government control, initially resisted reporting patients with active TB. A preliminary compromise required reporting “charity” patients, but not private, paying patients. The class division reflected what historian Alan Kraut called “medicalized nativism,” beliefs that the working class practiced poor hygiene