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Searching Eyes

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

Amy L. Fairchild
Ronald Bayer
James Colgrove
with Daniel Wolfe
Copyright Date: 2007
Edition: 1
Pages: 368
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  • Book Info
    Searching Eyes
    Book Description:

    This is the first history of public health surveillance in the United States to span more than a century of conflict and controversy. The practice of reporting the names of those with disease to health authorities inevitably poses questions about the interplay between the imperative to control threats to the public's health and legal and ethical concerns about privacy. Authors Amy L. Fairchild, Ronald Bayer, and James Colgrove situate the tension inherent in public health surveillance in a broad social and political context and show how the changing meaning and significance of privacy have marked the politics and practice of surveillance since the end of the nineteenth century.

    eISBN: 978-0-520-94121-2
    Subjects: Health Sciences

Table of Contents

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  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. List of Illustrations
    (pp. ix-x)
  4. List of Abbreviations
    (pp. xi-xii)
    (pp. xiii-xiv)
    Daniel M. Fox and Samuel L. Milbank

    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.

    Searching Eyes: Privacy, the State, and Disease Surveillance in Americais the eighteenth of the California/Milbank Books on Health and the Public. The publishing partnership between the Fund and the University of California Press seeks to encourage the synthesis and communication of findings from...

    (pp. xv-xx)
    (pp. xxi-xxiv)
  8. 1 Introduction: Surveillance and the Landscape of Privacy in Twentieth-Century America
    (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 identiWcation 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—all were the result of surveillance systems, through which alert and troubled physicians could communicate with public health officials. In each instance, it was such vigilance that permitted the recognition of new threats and the initiation of...


    • 2 Opening Battles: Tuberculosis and the Foundations of Surveillance
      (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. Although historians have typically, although not uniformly,¹ been concerned about the more extraordinary measures that health ofWcials might take—especially isolation and quarantine—it was not such liberty-limiting measures that were primarily at stake.² At issue was who was responsible for monitoring and controlling the health of the patient—physician or health official? The often...

    • 3 Raising the Veil: Syphilis and Secrecy
      (pp. 58-80)

      In 1920 Dr. William Edler, a PHS ofWcer 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. He challenged the “principle of privileged communications between the physician and his patient” in matters concerning the public welfare: “No system of government could long endure if it were based on any other principle than that of the right of the individual is always subservient to that of the mass. Any...


    • 4 The Right to Know: Detection, Reporting, and Prevention of Occupational Disease
      (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. In the instance of occupational diseases, debates over reporting turned primarily on questions about the rights of employers to run businesses free of interference on the one hand and the obligations of the state to protect vulnerable workers on the other.

      Calls for reporting occupational illness to state governments in the early twentieth century emerged as part of a broad progressive era movement to protect the...

    • 5 The Right to Be Counted: Confronting the “Menace of Cancer”
      (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 midcentury only about half the states had established population-based registries to collect data on cancer incidence. Surveillance more commonly took the form of hospital-based registries, which did not measure incidence or prevalence but rather provided detailed information on selected groups of patients.

      The piecemeal and relatively tardy development of population-based registries is the result of what one analysis called a “triangular accommodation.”²...

    • 6 Who Shall Count the Little Children? From “Crippled Kiddies” to Birth Defects
      (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 Building on the efforts of their progressive era predecessors, fraternal clubs, business groups, and cause-based volunteers would create the foundation for a surveillance effort that would broaden in scope until it ultimately included congenital birth defects. In the years after World War I, as business and fraternal groups emerged as the leaders of the movement to assist “crippled children,” certainty...


    • 7 AIDS, Activism, and the Vicissitudes of Democratic Privacy
      (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 withpneumocystis cariniipneumonia.¹ By way of explanation, the CDC noted the possibility that some aspect of homosexual lifestyle or disease acquired through sexual contact might be involved.² One month later the CDC reported that in the prior two and a half years Kaposi’s sarcoma, a malignancy rare in...

    • 8 Counting All Kids: Immunization Registries and the Privacy of Parents and Children
      (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. Surveys showed that overwhelming numbers of parents favored having their children receive doses of all recommended vaccines.¹ That such registries would raise concerns over privacy and conWdentiality might seem unlikely, given the broad public support vaccination enjoys.

      At a time of increasing concern about the extent of health information held...

    • 9 Panoptic Visions and Stubborn Realities in a New Era of Privacy
      (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. But in the 1990s the political context had changed, making the time ripe for comprehensive federal regulation designed to protect medical records from misuse on the part of those who wielded either public or commercial power. At the same time, however, there were moves to extend...

  12. Conclusion: An Enduring Tension
    (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.

    Privacy evokes worlds of intimacy. For law professor Alan Westin, who did so much to chart the vicissitudes of privacy in the 1960s, privacy meets a psychological need, not only for exercising autonomy but also for enjoying opportunities for emotional release and self-reflection.¹ To protect such vital needs, privacy requires a “sanctuary,” a means of “prohibiting other persons from seeing, hearing, and knowing.”² Charles Fried, who served as solicitor general...

  13. NOTES
    (pp. 257-328)
  14. INDEX
    (pp. 329-342)
  15. Back Matter
    (pp. 343-343)