Searching Eyes: Privacy, the State, and Disease Surveillance in America / Edition 1

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Overview


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.
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Product Details

  • ISBN-13: 9780520253254
  • Publisher: University of California Press
  • Publication date: 11/7/2007
  • Series: California/Milbank Books on Health and the Public Series
  • Edition description: New Edition
  • Edition number: 1
  • Pages: 368
  • Sales rank: 1,321,763
  • Product dimensions: 6.00 (w) x 9.00 (h) x 1.00 (d)

Meet the Author


The authors are with the Center for History and Ethics of Public Health in the Department of Sociomedical Sciences at Columbia University’s Mailman School of Public Health. Amy L. Fairchild, Associate Professor, is the author of Science at the Borders: Immigration Medical Inspection and the Shaping of the Modern Industrial Labor Force (2003). Ronald Bayer, Professor, is the author of many books including Shattered Dreams: An Oral History of the South Africa AIDS Epidemic (2007) with Gerald Oppenheimer. James Colgrove, Assistant Professor, is the author of State of Immunity: The Politics of Vaccination Twentieth-Century America (2006).
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Read an Excerpt

Searching Eyes

Privacy, the State, and Disease Surveillance in America
By Amy L. Fairchild

University of California Press

Copyright © 2007 The Regents of the University of California
All right reserved.

ISBN: 978-0-520-25325-4


Chapter One

Opening Battles

Tuberculosis and the Foundations of Surveillance

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, been concerned about the more extraordinary measures that health officials might take-especially isolation and quarantine-it was not such liberty-limiting measures that were primarily at stake. At issue was who was responsible for monitoring and controlling the health of the patient-physician or health official? The often pitched battles between physicians and health officials would be cast in the language of paternalistic privacy.

FIRST FORAYS

A number of states and municipalities began to discuss the notification of tuberculosis (TB) in the early 1890s. Michigan passed legislation requiring TB reporting in 1893. The following year William Osler-the towering Johns Hopkins physician whose textbooks and curriculum marked a new direction in American medicine-strongly supported Philadelphia's efforts to require name reporting for TB. The result was a bitter and contentious battle within the College of Physicians and Surgeons of Philadelphia, where a majority took great exception to the measure. As Dr. Frank Woodbury argued, "Registration would eventually divide physicians into two classes-those who reported their consumptive patients and those who did not. The physicians having the reputation of not reporting their cases would naturally have a larger clientele than others." This would not only be patently unfair but would defeat the objective of reporting.

Others centered their opposition to surveillance on claims about its potential utility. Dr. James B. Walker, citing the example of typhoid, asserted that reporting had never lowered mortality. In his mind, it was with physicians themselves that the responsibility for the protection of the public health rightfully rested: "The physician," he insisted, "is capable of doing all that the Board of Health can, without the manifold evils and annoyances of public registration." But others doubted that much could be done to control the disease among the "poorer classes" because of the sheer scale of the problem, limited resources, and inadequate understanding of effective measures: "If it were possible by systematic notification for the Board of Health to locate a considerable number of these infected houses, what steps would it take to purify them? How would it deal with those of the poorer classes who are affected with this disease, and with the furniture, bedding and rooms?"

Lawrence Flick, Philadelphia's chief proponent of notification, suggested that the city's leading medical men failed to understand the demographics of this disease: "I grant that it may be hard," he argued, "for wealthy people to be recorded as suffering from tuberculosis, but this is a disease of the poor; the vast majority of consumptives are very poor, and the necessities of the poor so demand registration that it should outweigh the sensitiveness of the rich." Responding to the sensitivities of the rich, he proposed to register only the houses of the infected rather than infected individuals themselves.

For others, the opposition to reporting hinged on the continuing belief in a hereditary predisposition to the disease and in its lack of contagiousness. Fear and stigma would be the only result. Dr. Owen J. Wister imagined that notification "may lash the whole community into a panic" and create "a feeling of hostility" toward "the unfortunate victims," encouraging their treatment "as criminals guilty of consumption." Wister was joined by Dr. J. M. Da Costa, who asked, "Why fix the brand of leper on the poor unfortunate because he has consumption? ... Why have him pursued from house to house, why have him a marked man?"

Deep suspicions about the contagious nature of tuberculosis and its stigma carried the day in Philadelphia. The College of Physicians and Surgeons resolved that "the attempt to register consumptives and to treat them as the subjects of contagious disease would be adding hardship to the lives of these unfortunates, stamping them as outcasts of society. In view of the chronic character of the malady, it could not lead to any measures of real value not otherwise attainable." It was a decision that protected the privacy of the poor but also denied them any resources that might have been provided by the health department. For better or worse, Philadelphia's tubercular would have to rely on what physicians could offer. But if in Philadelphia paternalistic privacy worked to shield both the wealthy and the poor from the intrusions-benevolent or punitive, welcomed or opposed-of health officials, in other locales it would allow the public health and medical communities to chart a very different course. In New York City, after a protracted controversy that revolved around the relative authority of private physicians and the department of health, municipal authorities embraced notification.

THE "JEALOUS" EYES OF MEDICINE

The prospect of TB reporting had been discussed in New York City as early as 1868. Stephen Smith put it simply: "When a Commissioner of Health from 1868 to 1875, I endeavored to have tuberculosis reported as contagious, but failed." Efforts in 1889 likewise failed to bear fruit after the health commissioner wrote to "twenty-four of the most prominent and influential physicians of the city" to solicit their opinions about the "necessity" of reporting. The very few physicians who even bothered to reply to the health commissioner indicated that the medical professional would not offer "cordial support."

It would take almost three decades from Smith's 1868 effort before notification would be mandated. Although the climate of medical opinion had hardly become any warmer, the Board of Health was ready to wager on a new consensus regarding the danger and the imperative to act: "The communicability of pulmonary tuberculosis has been so thoroughly established ... that the time has arrived when active steps should be taken looking towards its prevention in this city." In 1893 Hermann M. Biggs-in his capacity as chief inspector of the Division of Pathology, Bacteriology, and Disinfection-recommended that public institutions be required to report the names of the infected. "It was not deemed wise, however, in the beginning, to make it obligatory for physicians to report cases, especially as it was comparatively easy to obtain reports from public institutions, which would give the most numerous classes of patients and those whom it was most important to instruct." The Board of Health merely sent out a circular requesting private physicians and institutions to report cases of TB.

Although it was clear that the city planned to investigate cases and that reporting was intended as a means of allowing direct health department intervention, every effort was made to assuage the fears of physicians regarding encroachments upon their professional authority. Biggs thus stated that "this information will be solely for the use of the Department, and in no case will visits be made to such persons by the Inspectors of the Department, nor will the Department assume any sanitary surveillance of such patients, unless the person resides in a tenement-house, boarding-house or hotel, or unless the attending physician requests that an inspection of the premises be made." Even then, "in no case where the person resides in" multifamily or multiperson residences "will any action be taken if the physician requests that no visits be made by Inspectors and is willing himself to deliver" information circulars regarding the spread of TB and how to prevent its transmission.

In 1894 the department of health acceded to Biggs's request for mandatory notification on the part of public institutions. The TB registry not only contained the name of the infected and tracked all changes in address but also recorded every public health action taken in the case until the patient's death or recovery. Individual case records were only destroyed following a patient's death. The Sun, in New York, predicted that compulsory notification "will come later on. It is the only thing that remains to be done, to put the worst of all contagious diseases into the column where it properly belongs."

The Sun was prescient. In 1897 Biggs recommended and the Board adopted "more comprehensive and radical measures": compulsory notification for all cases. Biggs's full report regarding mandatory notification was reprinted in the Medical News, which described it as "one of the most important reports it ha[d] ever received." While the health department's careful observation of the rights of private physicians and their patients garnered Biggs and the department some medical support regarding compulsory notification, the overall medical response was decidedly hostile. This was not, of course, a test case for notification. Systems of reporting were already in place for conditions like smallpox and typhoid. They had elicited no controversy. When reporting was extended to polio in the early decades of the twentieth century, it too would provoke no backlash from the medical community. Indeed, the medical community had expressed outright support for such reporting.

Tuberculosis-the "white plague"-was different. Mortality from tuberculosis began to decline in a continuous fashion in the United States in the 1860s and 1870s. Nonetheless, the "grim monster" remained the most significant scourge of progressive era America. The overall annual mortality rate from tuberculosis was, in 1900, approximately 200 per 100,000 in the white population. Among blacks, the rate was 400 per 100,000. Urban areas suffered the most. In New York City, for example, the overall mortality rate was 428 per 100,000 in 1870 and 256 per 100,000 in 1890. The New York City mortality rate varied from 49 per 100,000 on the Upper West Side to 776 per 100,000 in the tenement district of lower Manhattan.

Compounding this high death rate, TB was also chronic. Measures that had become standard for the control of epidemic infections-vaccination, isolation, and quarantine-would have marginal relevance in the instance of tuberculosis. New York City's health commissioner, George Fowler, sought to assuage the medical community by stressing that his department had not declared tuberculosis to be a contagious disease requiring immediate intervention, but "had [instead] declared it to be among the infectious and communicable diseases, dangerous to the public health." But this assurance did little to comfort physicians, because there was no "clear-cut idea" about what these terms meant. To the extent that there was a general understanding that by "communicable," the department meant that transmission required prolonged exposure to infection, some retorted that "there was high authority against the positive statement that tuberculosis was infectious and communicable." In Philadelphia, where conflict over how the disease was spread also raged, Lawrence Flick felt certain that once the distinction was made clear, the feeling that TB surveillance represented "unnecessary espionage" would dissipate. But the classification of TB as a communicable disease was offensive even for those who felt no confusion because surveillance for this class of disease represented an extension of notification into new terrain.

Biggs would later comment, "I have always felt that much harm has been done by calling tuberculosis a contagious disease; it produces confusion in the minds of both the laity and the medical profession, because the conception of a contagious disease is always related to such diseases as scarlet fever, smallpox, etc., in which very limited contact or even simple proximity may result in their transmission. Every intelligent person knows that tuberculosis is different in nature from these diseases, and I believe that this distinction should be made and kept clear and definite. Tuberculosis is communicable, but not contagious." It was precisely because the city had "always drawn a very sharp distinction between tuberculosis and the other infectious diseases which sanitary authorities ordinarily deal with" that notification was so threatening. It was unprecedented for the health department to require reporting when there was no clear course to prevent the spread of a disease. If the traditional interventions were unlikely to stem transmission and avert or contain an epidemic, some believed the health department should stay its hand. John Shaw Billings proclaimed, "If we knew of some way by which we could prevent the spread of pneumonia, the compulsory notification of such cases would be the first steps taken toward that end." Given that health officials were not going to be able to approach TB as they did other contagious threats, how did they intend to act on case reports?

To the medical community, it seemed obvious that this was an effort to usurp physician authority over cases. Medical Record editor George Shrady, who had explicitly supported notification for conditions like typhoid and even advocated for small physician remuneration for such services, complained, "The compulsory step taken is a mistaken, untimely, irrational, and unwise one.... The real obnoxiousness of this amendment to the sanitary code is its offensively dictatorial and defiantly compulsory character. It places the Board in the rather equivocal position of dictating to the profession and of creating a suspicion of an extra bid for public applause by unduly magnifying the importance of its bacteriological department." Already, he continued, "The profession as a whole has watched with jealous eye the encroachments of the Board upon many of the previously well-recognized privileges of the medical attendant."

Surveillance raised the question of who would be making decisions on behalf of the patient. As another clinical combatant explained, "If the sanitary code of the present city should become that of the greater city ... the health board would be given practically the treatment of all infectious diseases, and it had only to declare a disease infectious in order to take charge of it." The medical community thus claimed, "There is no objection to the reports of pulmonary cases for statistical purposes" but objected stringently to "the extra missionary work assumed by the board which is the ominous and threatening quantity in the equation-the desire to assume official control of the cases after they have been reported, thus not only, by means of alarming bacteriological edicts, directly interfering with the physician in the diagnosis and treatment of the patient, but in the end, by creation of a public suspicion of his ignorance, possibly depriving him of one of the means of a legitimate livelihood."

Thus the medical community insisted that reporting entail "no direct or indirect interference between patient and physician, either in the way of official inspections, bacteriological diagnosis, forced isolation, suggestions for treatment, or presumptuous instructions to the patient regarding hygienic precaution." In fact, the Standing Committee on Hygiene of the Medical Society of the county of New York endorsed the reporting measure with only the proviso that lay at the heart of notions of paternalistic privacy: "Inspectors are forbidden to visit or have any communication with the patient without the consent of the attending physician, believing that the attending physician is capable of giving all the necessary instruction." If health officials had no access to the patient, then the authority of physicians remained unchallenged, and they too could enjoy the "right to be let alone."

Other medical groups remained hostile to any form of notification. The New York and Kings County Medical Societies had bills introduced into the state legislature that would have rescinded those portions of the New York City charter giving the health department its authority to deal with tuberculosis as a communicable disease. C.-E. A. Winslow, a notable public health figure and Biggs's biographer, spun a dramatic tale about how, with considerable effort and negotiation by Biggs, who reportedly spent the winter in Albany during the legislature's 1898 and 1899 sessions, the health department blocked passage of the bills.

(Continues...)



Excerpted from Searching Eyes by Amy L. Fairchild Copyright © 2007 by The Regents of the University of California. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents


List of Illustrations
List of Abbreviations
Foreword by Daniel M. Fox and Samuel L. Milbank
Acknowledgments
Preface: The Politics of Privacy, the Politics of Surveillance
1. Introduction: Surveillance and the Landscape of Privacy in Twentieth-Century America

PART I. THE RISE OF SURVEILLANCE AND THE POLITICS OF RESISTANCE
2. Opening Battles: Tuberculosis and the Foundations of Surveillance
3. Raising the Veil: Syphilis and Secrecy
PART II. EXTENDING SURVEILLANCE: THE POLITICS OF RECOGNITION
4. The Right to Know: Detection, Reporting, and Prevention of Occupational Disease
5. The Right to Be Counted: Confronting the “Menace of Cancer”
6. Who Shall Count the Little Children? From “Crippled Kiddies” to Birth Defects

PART III. SURVEILLANCE AT CENTURY’S END: THE POLITICS OF DEMOCRATIC PRIVACY
7. AIDS, Activism, and the Vicissitudes of Democratic Privacy
8. Counting All Kids: Immunization Registries and the Privacy of Parents and Children
9. Panoptic Visions and Stubborn Realities in a New Era of Privacy

Conclusion: An Enduring Tension
Notes
Index

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