Bioterrorism, Public Health and the Law 
Law 801: Health Care Law Seminar
Professor Vernellia R. Randall

The Historical Development of Reporting as a Public Health Practice


Lesson Schedule
00: Intro to the Course
01: Intro to the Problem
02: Public Health System
03: Real Threat?
04: Public Health Law
05: Disease-Reporting
06: Quarantine
07: Model Act
08: Military Presence
09: Health Law Revisited


Lawrence O. Gostin and James G. Hodge, Jr.

excerpted from: Lawrence O. Gostin and James G. Hodge, Jr.,The "Names Debate": the Case for National Hiv Reporting in the United States , 61 Alb. L. Rev. 679 - 743, 689-698 (1998) (351 footnotes)

A. Early Reporting Practices

The history of reporting is internally connected to the history of public health surveillance. Modern public health surveillance, or "the ongoing, systematic collection, analysis, and interpretation of data on specific health events" for public health uses, originates from the early development of governmental activities to control and prevent communicable diseases during the late Middle Ages. Crude forms of monitoring illnesses led to societal regulations deterring the polluting of public thoroughfares and water supplies, requiring proper burials, and implementing safer handling of food supplies. With the application of numerical analysis to death counts and mortality in Europe in the 1660's and the advent of statistical methods of analysis a century later, pioneers of public health practice in Europe and the United States developed some of the foundations for modern surveillance in the nineteenth century.

William Farr, often recognized as "the founder of the modern concept of surveillance," systematically collected, evaluated, and reported *690 data on vital statistics as Superintendent of the Statistical Department of the General Registrar's Office of England and Wales from 1839 to 1879. Farr spoke on the utility of surveillance:

[Morbidity registration] will be an invaluable contribution to therapeutics, as well as to hygiene, for it will enable the therapeutists to determine the duration and fatality of all forms of disease . . . . Illusion will be dispelled, quackery . . . suppressed, a science of therapeutics created, suffering diminished, life shielded from many dangers. Farr's work was furthered in Europe by Edwin Chadwick, also of the United Kingdom, who researched environmental causes of disease and Louis Villerme who linked poverty with factors of mortality in Paris.

In the United States, surveillance practices including reporting stem back to colonial law. By the middle of the nineteenth century, significant strides had been made. Lemuel Shattuck related mortality and communicable diseases to living conditions in his influential 1850 report of the Massachusetts Sanitary Commission. Shattuck recommended state- supported collection of health data "by age, gender, occupation, socioeconomic level, and locality." That same year, the federal government began publishing its first national mortality statistics based on the decennial census. Within the next thirty years, morbidity data began to be organized and collected by state and federal governments. National morbidity data collection on several infectious diseases began as early as 1878 in the United States.

*691 Increased development and reliance on morbidity data led to greater organization of public health departments. Surveillance techniques began to focus on detecting and controlling the spread of infectious disease. A key component toward successfully implementing surveillance systems was the effective gathering of health information, primarily through reporting requirements imposed on physicians and laboratories. The United Kingdom began a program of compulsory reporting, (or notification as it is known in Europe), for selected diseases in 1899. By 1907, several European member states organized the International Office of Public Hygiene which gathered and published information on the prevalence of epidemic diseases.

In the United States, many states passed mandatory reporting statutes of varying application. These laws often generalized the *692 classes of disease to be reported. Classifications of reportable conditions included cases of contagious, infectious, or communicable disease, as well as "all diseases dangerous to the public health." Some state legislatures deferred to the judgment of state health departments to decide which diseases should be reported. Only later did states begin to delineate specific diseases for which reporting was required. Reporting practice in the early twentieth century generally involved the circulation of notification cards by state or local health departments to physicians. The "standard notification blank" required physicians to provide the patient's name, age, sex, race, local address, occupation, and occupational address together with the disease or "suspected disease," the date of diagnosis, and the physician's signature and address. These cards were mailed to local or state health authorities for verification, documentation, and data analysis.

Reporting requirements differed extensively across jurisdictions in the United States, making national disease monitoring tenuous at best. A model reporting law circulated by the United States Public Health Service as early as 1913 in an attempt to homogenize reporting requirements for communicable and occupational diseases was passed by only a few states. Not until 1925 did all states report occurrences of certain infectious diseases to the United States Public Health Service. Yet, over the next several *693 decades, better organized public health efforts coupled with increasingly sophisticated surveillance techniques and elaborate publication of morbidity information were instrumental in controlling epidemic diseases including poliomyelitis, malaria, and smallpox.

B. The Tensions Between the Practice of Medicine and Public Health

As mandatory reporting of infectious conditions became focal points of public health strategies in the early twentieth century a tension arose between physicians and public health authorities. Public health officials saw their first duty to the population. Reporting dangerous conditions was essential to public health. And since reporting practices relied on the efforts of practicing physicians, public health objectives required their voluntary cooperation. Physicians, on the other hand, saw their first duty to the individual patient. Mandatory duties to report required physicians to produce the names and other information of their patients, breaching the traditional confidential relationship between doctors and patients. Yet, failing to report cases of infectious disease tacitly perpetuated the transmission of disease to "innocent victims."

*694 A doctor's duty of confidentiality, however, is more than an ethical promise to preserve a patient's health information pursuant to the Hippocratic Oath. Physicians may be liable for disclosing such information to third parties without the patient's consent. Often described in tort law as a breach of confidentiality, courts have also relied on various other theories of recovery, including invasion of privacy, implied term of contract, and breach of fiduciary relationship. Breach of confidentiality claims have been upheld where a physician makes an unauthorized disclosure of information obtained in the course of a therapeutic relationship to various parties, including employers or family members.

Significant ethical and legal dilemmas arose from this conflict concerning the extent to which a patient's confidentiality should be *695 sacrificed in the performance of the duty to report. Perhaps resenting their incorporation as "adjunct[s] of the [public] health department," doctors initially objected to state reporting laws requiring them effectively to breach their duty of confidentiality. "Among practicing physicians, at least in the United States, there has at times been the feeling that the knowledge of a disease in a patient is privileged information which they should not be called upon to impart." Some doctors refused to honor reporting requirements altogether, subjecting themselves to criminal sanctions. Eventually, legislative and judicial action relieved medical professionals from liability for failure to comply with the reporting statutes. While release from liability did not, in the medical profession's view, release them from their ethical obligations to protect patient privacy, compliance with reporting requirements by the medical profession gradually became commonplace by the late 1960s.

With these developments came a marked shift of responsibility for maintaining the confidentiality of personal medical information for the purposes of public health. Individuals could no longer rely on doctors to preserve the confidentiality of their medical records from governmental reporting requirements. The responsibility for preserving private medical facts, instead, rested with the individuals alone who might choose not to see a physician rather than have his name reported to government officials.

C. The Inception of the Modern Epidemic: National AIDS Reporting

With the protection of medical confidentiality concerning infectious diseases shifting from doctor to patient as a partial result of *696 the reporting practices of the early twentieth century, the AIDS pandemic presented a new arena for this historic conflict between medical confidentiality and public health. Relieved of their duty of confidentiality by way of reporting statutes, doctors no longer could protect their patients' highly sensitive medical conditions. At-risk and infected individuals organized to protect their interests in preserving private medical information. Through well- organized campaigns, the privacy interests of infected individuals were vocalized. Yet, curiously, a national system of AIDS reporting developed almost from the inception of the HIV/AIDS epidemic. Remarkably, while advocacy groups fiercely opposed HIV reporting, they exhibited little opposition to reporting CDC-defined AIDS.

The development of AIDS reporting can be understood only by examining its unique history. The AIDS epidemic emerged in the early 1980's. After observing clusters of unusual pneumonia and rare cancers among gay men, the CDC determined that the syndrome's likely cause was a transmissible agent spread via the same routes as sexually transmitted diseases (STDs) like hepatitis B. While this determination dispelled widespread fears of other forms of transmission, medical researchers were unable to determine early in the epidemic the causative agent of AIDS.

The CDC immediately recommended tracking similar cases of AIDS nationwide to further determine the parameters of the new disease and tailor prevention efforts to those at risk. In response to the CDC's recommendation, states uniformly implemented AIDS *697 reporting through the traditional named basis, a practice that continues today. The names and other pertinent information of persons diagnosed with CDC-defined AIDS are collected locally and forwarded to state public health authorities. This information is further relayed to the CDC (absent names or other identifying characteristics) for purposes of national surveillance.

AIDS reporting was introduced at a time when the condition lacked a known source, much less the means to test for it. Without definite knowledge of the pathogen that causes AIDS, named AIDS reporting generated little public or political controversy despite the inherent privacy concerns. AIDS surveillance was, and still is, broadly accepted by persons living with HIV/AIDS. The relatively short period of patient survival once diagnosed, as well as the need for health and human services for infected individuals, were thought to offset the social risks of AIDS surveillance.

It was not until late 1983 that medical researchers identified the causative agent for AIDS, then called Human T-Cell Lymphotropic virus, Type III (HTLV-III) in the United States and Lymphadenopathy-associated virus (LAV) in France, and presently known as the human immuno-deficiency virus (HIV). The United States Food and Drug Administration did not license an antibody test for HIV until 1985, and then only to screen the nation's blood supply.

*698 Thus, name-based AIDS reporting was successfully implemented in response to this new epidemic. Reporting was accepted as a necessary practice to track those living with a disease whose cause was once unknown, but whoseeffect on health and well-being were overwhelming.

[a1]. This Article is substantially based on the previously published article, Lawrence O. Gostin et al., National HIV Case Reporting for the United States--A Defining Moment in the History of the Epidemic, 337 New Eng. J. Med. 1162 (1997), which itself was based on a national consultation on HIV surveillance conducted by the Centers for Disease Control and Prevention [[[hereinafter CDC] and the Council of State and Territorial Epidemiologists [[[hereinafter CSTE] held at the Carter Presidential Center in Atlanta, Georgia on May 21-22, 1997. Additional consultations held by the CDC in Atlanta on October 7, 1997 and November 5-6, 1997 also form the basis for this Article. The views expressed by the authors in this Article are not necessarily the views of the CDC, CSTE, or Carter Presidential Center.

[aa1]. Professor of Law, Georgetown University Law Center; Professor of Law and Public Health, Johns Hopkins University School of Hygiene and Public Health; Co-Director, Georgetown/Johns Hopkins Program on Law and Public Health; CDC Advisory Committee on HIV and STD Prevention.

[aaa1]. Adjunct Professor of Law, Georgetown University Law Center; Fellow, Greenwall Fellowship Program in Bioethics and Health Policy (supported by the Greenwall Foundation and jointly administered by Georgetown University and Johns Hopkins University).

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