Searching Eyes

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 EyesPrivacy, the State,

and Disease Surveillance in America

Amy L. FairchildRonald Bayer

James Colgrovewith Daniel Wolfe

UNIVERSITY OF CALIFORNIA PRESSBerkeley Los Angeles London

MILBANK MEMORIAL FUNDNew York

The Milbank Memorial Fund is an endowed operating foundationthat 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, andin articles it commissions for publication by other organizations, theFund endeavors to maintain the highest standards for accuracy andfairness. Statements by individual authors, however, do not necessarilyreflect opinions or factual determinations of the Fund. For moreinformation, visit www.milbank.org.

University of California Press, one of the most distinguished universitypresses in the United States, enriches lives around the world byadvancing scholarship in the humanities, social sciences, and naturalsciences. 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 PressBerkeley 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 DataFairchild, Amy L.

Searching eyes : privacy, the state, and disease surveillance inAmerica / Amy L. Fairchild, Ronald Bayer, James Colgrove ; withDaniel 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 HealthPractice—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 0710 9 8 7 6 5 4 3 2 1This 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 ofOccupational Disease / 83

5. The Right to Be Counted: Confronting the “Menace of Cancer” / 113

6. Who Shall Count the Little Children? From “Crippled Kiddies” toBirth 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 Parentsand Children / 204

9. Panoptic Visions and Stubborn Realities in a New Era of Privacy / 228

Conclusion: An Enduring Tension / 251

Notes / 257

Index / 329

Illustrations

ix

1. Buttons from The Nation / 8

2. Isolation placard for poliomyelitis / 10

3. Names of new cases and deaths from poliomyelitis withaddresses / 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

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

x Illustrations

Abbreviations

xi

AACC Association for the Aid of Crippled ChildrenAALL American Association for Labor LegislationABLES Adult Blood Lead Epidemiological Survey ProgramACLU American Civil Liberties UnionACoS American College of SurgeonsAICP Association for the Improvement of the Condition of the PoorAMA American Medical AssociationAPHA American Public Health AssociationASCC American Society for the Control of CancerASTHO Association of State and Territorial Health OfficersBLS Bureau of Labor StatisticsCCHC Citizens’ Council on Health CareCDC Communicable Disease Center; subsequently Center for Disease

Control; then Centers for Disease Control and PreventionCIFS Childhood Immunization Follow-Up SystemCSS Community Service SocietyCSTE Council of State and Territorial EpidemiologistsDHEW Department of Health, Education, and WelfareDHHS Department of Health and Human ServicesFAC Federation of Associations of CripplesFDA Food and Drug AdministrationFERPA Family Educational Rights and Privacy ActHIPAA Health Insurance Portability and Accountability ActIOM Institute of MedicineMOD March of DimesNARA National Archives and Records AdministrationNCI National Cancer Institute

NEDSS National Electronic Disease Surveillance SystemNFIP National Foundation for Infantile ParalysisNIH National Institutes of HealthNIOSH National Institute for Occupational Safety and HealthOCAW Oil, Chemical and Atomic Workers UnionOSH Occupational Safety and HealthOSHA Occupational Safety and Health AdministrationPANIC Prevent AIDS Now Initiative CommitteePHS Public Health ServicePLAC Privacy Law Advisory CommitteePROVE Parents Requesting Open Vaccine EducationRODS Real Time Outbreak and Disease Surveillance SystemRWJ The Robert Wood Johnson FoundationSEER Surveillance, Epidemiology, and End Results ProgramSENSOR Sentinel Event Notification System for Occupational RisksSHE(O)s Sentinel Health Events (Occupational)UNITE Union of Needletrades, Industrial and Textile Employees

xii Abbreviations

Foreword

xiii

The Milbank Memorial Fund is an endowed operating foundation thatworks to improve health by helping decision makers in the public and pri-vate sectors acquire and use the best available evidence to inform policy forhealth care and population health. The Fund has engaged in nonpartisananalysis, study, research, and communication since its inception in 1905.

Searching Eyes: Privacy, the State, and Disease Surveillance in America is theeighteenth of the California/Milbank Books on Health and the Public. Thepublishing partnership between the Fund and the University of CaliforniaPress seeks to encourage the synthesis and communication of Wndings fromresearch 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 forpublic health, which it has been for more than a century.

Fairchild, Bayer, and Colgrove, with a signiWcant contribution fromDaniel Wolfe, describe the practical tension between privacy and the welfareof society since the nineteenth century. Their extensive research in primarysources reveals how difWcult it has been to make and implement surveil-lance policy. The book begins in the late nineteenth century when, as aresult 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 tobe counted so that the extent of their afflictions could serve as a prod for . . .ameliorative legislation.” This aspect of the history of surveillance, theauthors Wnd, “democratized” privacy as “different constituencies balancedprivacy against what they perceived to be their own greater interests.”

The era of “democratic privacy” is likely to continue indeWnitely as newissues 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 thequality of care for individual patients.

Daniel M. Fox

President

Samuel L. Milbank

Chairman

xiv Foreword