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).
