Cover

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pp. 1-1

Title page, Copyright Page

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pp. 2-7

Contents

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pp. vii-viii

List of Illustrations

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pp. ix-x

List of Abbreviations

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pp. xi-xii

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Foreword

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pp. xiii-xiv

The Milbank Memorial Fund is an endowed operating foundation that works to improve health by helping decision makers in the public and private sectors acquire and use the best available evidence to inform policy for health care and population health. The Fund has engaged in nonpartisan analysis, study, research, and communication since its inception in 1905. ...

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Preface: The Politics of Privacy, the Politics of Surveillance

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pp. xv-xx

Disease provokes enormous fear. Dread of sickness and death is often matched by anxiety about the loss of privacy, which can place one’s reputation, resources, and even autonomy and liberty at risk. These two deeply rooted apprehensions come together as the state seeks to monitor diseases in the name of the public’s health. ...

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Acknowledgments

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pp. xxi-xxiv

During the course of this project, which we first imagined in the early 1990s and began in earnest more than five years ago, we accumulated more debts than we can acknowledge, but we shall do our best. The first goes to our colleague Daniel Wolfe, who provided incisive comments on many aspects of the book and was the primary researcher and author of the occupational disease chapter. ...

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1. Introduction: Surveillance and the Landscape of Privacy in Twentieth-Century America

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pp. 1-30

The discovery that cases of paralytic polio in 1955 were caused by a single manufacturer of Salk vaccine, the linkage of toxic shock syndrome to tampons in 1979, the identification of the sentinel cases of AIDS on the East and West Coasts in the early 1980s, the recognition of West Nile virus, SARS, and avian flu at the turn of the twenty-first century— ...

Part I. The Rise of Surveillance and the Politics of Resistance

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2. Opening Battles: Tuberculosis and the Foundations of Surveillance

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pp. 33-57

It was with tuberculosis that the extensive, systematic, and contested surveillance of disease began in the United States. This effort was triggered by the bacteriological revolution and informed by the juridical and ideological articulation of the state’s authority to intervene to protect the communal well-being. ...

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3. Raising the Veil: Syphilis and Secrecy

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pp. 58-80

In 1920 Dr. William Edler, a PHS officer and director of the Bureau of Venereal Diseases at the Louisiana State Board of Health, made clear that he was ready to use the threat of prosecution to compel physicians to report disease and that public health warranted limits on privacy. ...

Part II. Extending Surveillance:The Politics of Recognition

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4. The Right to Know: Detection, Reporting, and Prevention of Occupational Disease

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pp. 83-112

As efforts were made to expand disease reporting beyond infectious conditions, the interests and institutions engaged in the encounter over surveillance broadened. Tension between clinical medicine and public health, in particular, became less central. ...

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5. The Right to Be Counted: Confronting the “Menace of Cancer”

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pp. 113-143

After an initial period of enthusiasm for routine surveillance of cancer incidence in the 1910s and 1920s, the idea of universal reporting along the lines of infectious disease notification dropped off the radar screen for several decades.1 By mid-century only about half the states had established population- based registries to collect data on cancer incidence. ...

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6. Who Shall Count the Little Children? From “Crippled Kiddies” to Birth Defects

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pp. 144-170

Although birth certificates had tracked congenital defects since the early twentieth century,1 the surveillance of “crippled kiddies” was spearheaded in the 1920s by white, middle-class men and women concerned with restoring a generation of children to their full economic potential.2 ...

Part III. Surveillance at Century’s End: The Politics of Democratic Privacy

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7. AIDS, Activism, and the Vicissitudes of Democratic Privacy

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pp. 173-203

In June 1981 the Centers for Disease Control reported the appearance in previously healthy gay men of conditions that usually occurred only in individuals with compromised immune systems. The CDC’s official publication, Morbidity and Mortality Weekly Report, recounted that between October 1980 and May 1981 five young men had been diagnosed with pneumocystis carinii pneumonia.1 ...

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8. Counting All Kids: Immunization Registries and the Privacy of Parents and Children

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pp. 204-227

As the list of vaccines recommended for routine administration to children grew from just one (smallpox) in 1900 to almost a dozen by 2000, immunization achieved almost mythic status among public health interventions for its ability to control and even eliminate formerly endemic scourges such as diphtheria and whooping cough. ...

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9. Panoptic Visions and Stubborn Realities in a New Era of Privacy

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pp. 228-250

As the twentieth century drew to a close, concerns about the erosion of privacy in medicine and other realms focused attention on the need for federal measures to secure health records. These concerns were not new. For almost forty years there had been repeated expressions of anxiety about intrusions into the world of privacy. ...

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Conclusion: An Enduring Tension

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pp. 251-256

We conclude this more than century-long history of public health surveillance by returning to the enduring tension between the claims of privacy and the challenge of securing the public’s well-being. ...

Notes

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pp. 257-328

Index

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pp. 329-342