History and Health Policy in the United States: Putting the Past Back In

5. The Democratization of Privacy: Public-Health Surveillance and Changing Conceptions of Privacy in Twentieth-Century America

The right to privacy has never been regarded as absolute. In the late nineteenth century, health officials adopted the practice of name-based reporting for infectious diseases in order to isolate cases, quarantine the exposed, and monitor the health and behavior of the diseased and their contacts as a means of reducing morbidity and mortality. Public-health surveillance has persistently called into question the appropriate limits of privacy ever since. Despite the inherent tension between surveillance and privacy—that is, between a public and a private good—the nature of the conflict has changed, reflecting radical changes in the conception of privacy over the course of the twentieth century. From the 1890s through the 1960s, privacy concerns were embedded in a medical and public-health culture that was both paternalistic and authoritarian . The prevailing conception of privacy yoked the patient’s well-being to the physician’s authority: physicians represented the gatekeepers to the patients and protected them from unwarranted interference by public-health authorities . Health officials accommodated physician demands to determine when they might intervene—a concession that privileged “respectable” middleclass or wealthy patients. The 1960s and 1970s were witness to extraordinary challenges to the authority of medicine broadly understood. The paternalistic authority of physicians was brought into question by a new culture and ethics that gave pride of place to the concept of autonomy (Rothman 1991). Privacy ceased to be instrumental to the clinical relationship and became a right that belonged exclusively to the patient. Dovetailing with the “my body, my business ” ideal in the clinical setting, some patients ultimately challenged the The Democratization of Privacy Public-Health Surveillance and Changing Conceptions of Privacy in Twentieth-Century America Chapter 5 Amy L. Fairchild 111 public-health practice of surveillance as a violation of individual privacy rights. Paternalism and Public Health Reporting The centrality of bacteriology to both medical and public-health practice helps to explain the instrumental nature of public-health privacy as it developed in the late nineteenth century. By the 1870s and 1880s, a scientific revolution began to alter the practice of medicine and place public health on a new footing. Louis Pasteur, Robert Koch, and others laid the foundations for understanding that diseases were caused by germs, microbes too small to see with the human eye but capable of spreading from person to person. In the 1880s and 1890s, medical schools successfully began to incorporate bacteriology and basic science—the hallmarks of a new scientific medicine—into their curricula as a means of transforming medical education and increasing the status of the medical profession (Fee 1987). Scientific medicine promised to shore up the professional authority of the physician, who was almost always male, and fortify him against irregular medical practitioners (Starr 1982; Latour 1988; Ludmerer 1985; Warner 1986). One of the consequences was that a new “scientific reductionism” replaced a more holistic environmental , social, and moral view of the patient (Rosenberg 1979). In the wake of these changes, the physician-patient relationship became highly paternalistic and characterized by deference to scientific authority (Pernick 1982). Bacteriology also heightened a sense of authority over disease among a new cadre of public-health practitioners, many of whom were physicians educated in northeastern medical schools and further trained in European laboratories (Duffy 1990; Starr 1982). Within the field of public health, bacteriology justified new public-health strategies such as isolation, contact tracing, and house-to-house inspections as measures to control disease in the population on a day-to-day basis. But the bedrock of public-health practice was disease noti- fication: again and again public-health officials argued that without the name and location of diseased individuals they might “as well hunt birds by shooting into every green bush” (Trask 1915, 2). If reporting was the foundation of public-health practice, it was the responsibility of physicians to report cases of disease. Thus, surveillance created a struggle between public-health and medical practitioners over power and authority—a struggle largely couched in terms of the limits of privacy (Fox 1975). The histories of tuberculosis and venereal disease surveillance—the first instances in which surveillance was mandated and hotly contested—allows us 112 Amy L. Fairchild to map the contours of privacy as it was shaped by physicians and publichealth officials from the late nineteenth century through the 1960s. Tuberculosis The prospect of TB reporting...