Searching Eyes Privacy, the State, and Disease Surveillance
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CALIFORNIA/MILBANK BOOKS ON HEALTH AND THE PUBLIC
1. The Corporate Practice of Medicine: Competition and Innovation in Health Care,
by James C. Robinson
2. Experiencing Politics: A Legislator’s Stories of Government and Health Care,
by John E. McDonough
3. Public Health Law: Power, Duty, Restraint, by Lawrence O. Gostin
4. Public Health Law and Ethics: A Reader, edited by Lawrence O. Gostin
5. Big Doctoring in America: ProWles in Primary Care, by Fitzhugh Mullan, M.D.
6. Deceit and Denial: The Deadly Politics of Industrial Pollution,
by Gerald Markowitz and David Rosner
7. Death Is That Man Taking Names: Intersections of American Medicine, Law,
and Culture, by Robert A. Burt
8. When Walking Fails: Mobility Problems of Adults with Chronic Conditions,
by Lisa I. Iezzoni
9. What Price Better Health? Hazards of the Research Imperative,
by Daniel Callahan
10. Sick to Death and Not Going to Take It Anymore! Reforming Health Care for
the Last Years of Life, by Joanne Lynn
11. The Employee Retirement Income Security Act of 1974: A Political History,
by James A. Wooten
12. Evidence-Based Medicine and the Search for a Science of Clinical Care,
by Jeanne Daly
13. Disease and Democracy: The Industrialized World Faces AIDS,
by Peter Baldwin
14. Medicare Matters: What Geriatric Medicine Can Teach American Health Care,
by Christine K. Cassel
15. Are We Ready? Public Health since 9/11, by David Rosner and
Gerald Markowitz
16. State of Immunity: The Politics of Vaccination in Twentieth-Century America,
by James Colgrove
17. Low Income, Social Growth, and Good Health: A History of Twelve Countries,
by James C. Riley
18. Searching Eyes: Privacy, the State, and Disease Surveillance in America,
by Amy L. Fairchild, Ronald Bayer, and James Colgrove
Searching Eyes
Privacy, the State,
and Disease Surveillance
in America
Amy L. Fairchild
Ronald Bayer
James Colgrove
with Daniel Wolfe
UNIVERSITY OF CALIFORNIA PRESS
Berkeley Los Angeles London
MILBANK MEMORIAL FUND
New York
The Milbank Memorial Fund is an endowed operating foundation
that engages in nonpartisan analysis, study, research, and communi-
cation on signiWcant issues in health policy. In the Fund’s own publi-
cations, in reports or books it publishes with other organizations, and
in articles it commissions for publication by other organizations, the
Fund endeavors to maintain the highest standards for accuracy and
fairness. Statements by individual authors, however, do not necessarily
reflect opinions or factual determinations of the Fund. For more
information, visit www.milbank.org.
University of California Press, one of the most distinguished university
presses in the United States, enriches lives around the world by
advancing scholarship in the humanities, social sciences, and natural
sciences. Its activities are supported by the UC Press Foundation
and by philanthropic contributions from individuals and institutions.
For more information, visit www.ucpress.edu.
University of California Press
Berkeley and Los Angeles, California
University of California Press, Ltd.
London, England
© 2007 by The Regents of the University of California
Library of Congress Cataloging-in-Publication Data
Fairchild, Amy L.
Searching eyes : privacy, the state, and disease surveillance in
America / Amy L. Fairchild, Ronald Bayer, James Colgrove ; with
Daniel Wolfe.
p. cm. (California/Milbank books on health and the public)
Includes bibliographical references and index.
isbn: 978 – 0 – 520-25202-8 (cloth : alk. paper)
isbn: 978 – 0 – 520-25325-4 (pbk. : alk. paper)
1. Public health surveillance. 2. Privacy, Right of. I. Bayer,
Ronald. II. Colgrove, James Keith. III. Wolfe, Daniel, 1960 –
IV. Title. V. Series.
[DNLM: 1. Population Surveillance — United States.
2. ConWdentiality — United States. 3. Health Policy — history —
United States. 4. Privacy — United States. 5. Public Health
Practice — history — United States. WA 105 F165s 2007]
RA652.2.P82F35 2007
362.10973 — dc22 2007001053
Manufactured in the United States of America
16 15 14 13 12 11 10 09 08 07
10 9 8 7 6 5 4 3 2 1
This book is printed on Natures Book, which contains 50% post-
consumer waste and meets the minimum requirements of ansi/niso
z39.48 – 1992 (r 1997) (Permanence of Paper).
For Allan RosenWeld
Dean, Mailman School of Public Health, Columbia University
Contents
List of Illustrations / ix
List of Abbreviations / xi
Foreword by Daniel M. Fox and Samuel L. Milbank / xiii
Preface: The Politics of Privacy, the Politics of Surveillance / xv
Acknowledgments / xxi
1. Introduction: Surveillance and the Landscape of Privacy in
Twentieth-Century America / 1
Part I. The Rise of Surveillance and
the Politics of Resistance
2. Opening Battles: Tuberculosis and the Foundations of
Surveillance / 33
3. Raising the Veil: Syphilis and Secrecy / 58
Part II. Extending Surveillance:
The Politics of Recognition
4. The Right to Know: Detection, Reporting, and Prevention of
Occupational Disease / 83
5. The Right to Be Counted: Confronting the “Menace of Cancer” / 113
6. Who Shall Count the Little Children? From “Crippled Kiddies” to
Birth Defects / 144
Part III. Surveillance at Century’s End:
The Politics of Democratic Privacy
7. AIDS, Activism, and the Vicissitudes of Democratic Privacy / 173
8. Counting All Kids: Immunization Registries and the Privacy of Parents
and Children / 204
9. Panoptic Visions and Stubborn Realities in a New Era of Privacy / 228
Conclusion: An Enduring Tension / 251
Notes / 257
Index / 329
I l l u s t r at i o n s
1. Buttons from The Nation / 8
2. Isolation placard for poliomyelitis / 10
3. Names of new cases and deaths from poliomyelitis with
addresses / 11
4. Press coverage of the proposed National Data Center / 18
5. Elliott 803 computer / 19
6. Social Security Administration Wling cabinets / 21
7. Silence = Death / 29
8. New York City tuberculosis registry form / 42
9 & 10. New York City tuberculosis registry / 43
11. Home nursing visit / 44
12. Organization of the New York City tuberculosis program / 52
13. Stamp Out Syphilis / 72
14. Reported cases of primary and secondary syphilis / 75
15. Work Is Dangerous to Your Health / 95
16 & 17. Bone Sarcoma Registry / 119
18. “Evolution of the Cancer Clinic Record” / 122
19. Fighting in the Dark / 153
ix
x Illustrations
20. Virginia Apgar with a mother and child / 158
21. ACT UP poster / 180
22. ACT UP demonstration / 186
23. New York City Immunization Reminder System / 209
24 & 25. Delaware immunization record / 211
A b b r e v i at i o n s
AACC Association for the Aid of Crippled Children
AALL American Association for Labor Legislation
ABLES Adult Blood Lead Epidemiological Survey Program
ACLU American Civil Liberties Union
ACoS American College of Surgeons
AICP Association for the Improvement of the Condition of the Poor
AMA American Medical Association
APHA American Public Health Association
ASCC American Society for the Control of Cancer
ASTHO Association of State and Territorial Health Officers
BLS Bureau of Labor Statistics
CCHC Citizens’ Council on Health Care
CDC Communicable Disease Center; subsequently Center for Disease
Control; then Centers for Disease Control and Prevention
CIFS Childhood Immunization Follow-Up System
CSS Community Service Society
CSTE Council of State and Territorial Epidemiologists
DHEW Department of Health, Education, and Welfare
DHHS Department of Health and Human Services
FAC Federation of Associations of Cripples
FDA Food and Drug Administration
FERPA Family Educational Rights and Privacy Act
HIPAA Health Insurance Portability and Accountability Act
IOM Institute of Medicine
MOD March of Dimes
NARA National Archives and Records Administration
NCI National Cancer Institute
xi
xii Abbreviations
NEDSS National Electronic Disease Surveillance System
NFIP National Foundation for Infantile Paralysis
NIH National Institutes of Health
NIOSH National Institute for Occupational Safety and Health
OCAW Oil, Chemical and Atomic Workers Union
OSH Occupational Safety and Health
OSHA Occupational Safety and Health Administration
PANIC Prevent AIDS Now Initiative Committee
PHS Public Health Service
PLAC Privacy Law Advisory Committee
PROVE Parents Requesting Open Vaccine Education
RODS Real Time Outbreak and Disease Surveillance System
RWJ The Robert Wood Johnson Foundation
SEER Surveillance, Epidemiology, and End Results Program
SENSOR Sentinel Event Notification System for Occupational Risks
SHE(O)s Sentinel Health Events (Occupational)
UNITE Union of Needletrades, Industrial and Textile Employees
F o r e wo r d
The Milbank Memorial Fund is an endowed operating foundation that
works to improve health by helping decision makers in the public and pri-
vate 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 America is 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 Wndings from
research that could contribute to more effective health policy.
The authors of Searching Eyes offer a new approach to surveillance policy.
They analyze surveillance as an issue in the politics of policy making for
public health, which it has been for more than a century.
Fairchild, Bayer, and Colgrove, with a signiWcant contribution from
Daniel Wolfe, describe the practical tension between privacy and the welfare
of society since the nineteenth century. Their extensive research in primary
sources reveals how difWcult it has been to make and implement surveil-
lance policy. The book begins in the late nineteenth century when, as a
result of advances in scientiWc knowledge, “public health ofWcials moved,”
the authors write, “to pull chronic infectious disease into the ambit of pub-
lic health surveillance.” Next the authors describe signiWcant occasions dur-
ing the twentieth century when “many people with illness [for example,
occupational disease, cancer, and birth defects] would demand the right to
be counted so that the extent of their afflictions could serve as a prod for . . .
ameliorative legislation.” This aspect of the history of surveillance, the
authors Wnd, “democratized” privacy as “different constituencies balanced
privacy against what they perceived to be their own greater interests.”
xiii
xiv Foreword
The era of “democratic privacy” is likely to continue indeWnitely as new
issues of surveillance policy arise. One such issue is the tension between pol-
icy to create immunization registries and the privacy of parents and chil-
dren. Another is likely to be whether and how to use information about rou-
tine laboratory testing of the blood of persons with diabetes to improve the
quality of care for individual patients.
Daniel M. Fox
President
Samuel L. Milbank
Chairman
