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Existing laws do not often comport with modern scientific understanding relating to the epidemiology, treatment, and interventions necessary to impede the spread of disease.

Existing laws do not often comport with modern developments in constitutional law, including equal protection of the law, substantive due process, and procedural due process.

Existing laws often do not provide clarity of criteria and procedures that can assist both public health officials and the community in using their powers appropriately.

Existing laws often contain inflexible disease classifications that thwart efficient and consistent exercise of public health duties and powers.

Antiquated Laws

Most communicable disease law in the United States has been passed piecemeal, in response to specific disease threats. In the eighteenth century, communicable disease statutes focused primarily on smallpox, yellow fever, and plague.¹⁶ In the nineteenth century, states and municipalities enacted laws to combat cholera¹⁷ and tuberculosis.^18,19 In the early to mid-twentieth century, legislatures responded to epidemics of poliomyelitis, influenza, and venereal disease with disease-specific laws.²⁰ In the latter part of the twentieth century, legislatures addressed HIV/AIDS with AIDS-specific statutes, adding yet another layer to existing law.

Although some statutes have been amended over the years, many contain elements that are 40 to 100 years old. Certainly, old laws are not necessarily bad laws. A well-written statute may remain useful, efficacious, and constitutional for many decades. However, old public health statutes that have not been substantially altered since their enactment are often outmoded in ways that directly reduce both their efficacy and their conformity with modern legal standards. These laws often do not reflect contemporary scientific understanding of disease, current treatments of choice, or constitutional limits on states' authority to restrict individual liberties.

Failure to Keep Pace with Scientific Developments

One hundred years ago, the scientific understanding of diseases was very different than it is today. Although the concept of communicability of disease was well established, the technology to identify many of the most common and deadly infectious agents is a relatively recent phenomenon.²¹ In earlier times, more primitive tools were used for diagnosis, treatment, and epidemiological review of the spread of disease. Not surprisingly, public health laws from that era reflect a more limited understanding of disease and may lack a public health justification that is based on contemporary scientific knowledge.²² For example, older statutes often fail to distinguish between modes of disease transmission such as through casual contact (e.g., measles, influenza), prolonged contact (e.g., TB), or contact with blood or other bodily secretions (e.g., hepatitis B). A South Dakota statute passed in the late 1800s, and last amended in 1977, for instance, makes it a misdemeanor for a person infected with a communicable disease to "intentionally [expose] himself in any public place or thoroughfare."²³ Modern understanding of disease transmission suggests that this statute is inappropriate for diseases that are transmitted through blood or other secretions.

Failure to Comply with Modern Constitutional and Other Legal Requirements

Many communicable disease laws predate contemporary developments in constitutional law, disability discrimination law, and other modern legal requirements. As a result, existing laws may not meet evolving standards enunciated by the state and federal courts. (See the discussion of guidelines below.)

At the constitutional level, the Supreme Court now has more exacting standards for equal protection of the laws, substantive due process, and procedural due process. Public health laws that affect liberty (e.g., isolation, quarantine, directly observed therapy), privacy (e.g., reporting and partner notification), and autonomy (e.g., compulsory testing and treatment) may undergo more careful scrutiny under the constitution. At the same time, the constitution may require more rigorous procedural safeguards before exercising compulsory powers.

Federal disability law prohibits discrimination against persons with infectious diseases. This may require health officials to adopt standards of "significant risk" before resorting to compulsion, and it requires fair treatment of persons with infectious diseases in employment, public services, and public accommodations.

Lack of Criteria for Exercising Public Health Powers

Each state possesses the authority under its "police power" to enact laws protecting the health, safety, and welfare of its citizens. Historically, courts have deferred to legislative determinations of how best to protect the public health. Long ago, the Supreme Court established that state public health interventions must bear a "real or substantial relation" to a public health objective. Provided that states do not act in an arbitrary or unreasonable manner,²⁴ no reliable national standard exists to delineate the scope (or limit) of police powers to protect the public health. Through the exercise of compulsory powers, public health officials can require that persons who pose a threat to public health submit to medical examination, testing, immunization, treatment, detention, isolation, or quarantine. Such restrictions may infringe an individual's right to travel, secure privacy, maintain autonomy, and associate freely. A few state statutes articulate clear criteria for the exercise of these powers; others provide vague or incomplete standards; still others leave their use partly or wholly within the discretion of public health officials.

Statutes that fail to provide clear criteria hamper public health work in a variety of ways. Paradoxically, a lack of statutory guidance may lead public health officials to over- or underuse coercive powers. Without clear criteria, public health officials either may restrict an individual's liberty without valid public health grounds or may be so unsure of their authority to act that they do not use these measures to respond to actual threats. Broad discretion and the absence of criteria also invite abuse of compulsory powers or their discriminatory use against stigmatized or marginalized groups.

New Jersey and South Dakota statutes grant public health authorities broad discretion to confine individuals who may pose a health threat, but they offer vague criteria for when these powers should be used. The New Jersey statute authorizes the state health department to define communicable diseases, declare epidemics, isolate and quarantine persons, and remove and destroy property, but it contains little guidance about when such authority should be used. Pursuant to the statute, the department may act as follows: "maintain and enforce proper and sufficient quarantine, wherever deemed necessary . . . [and] . . . remove any person infected with a communicable disease to a suitable place, if in its judgment removal is necessary and can be accomplished without any undue risk to the person infected."²⁵

Similarly, the South Dakota statute, last amended in 1939, authorizes the local board of health to provide hospitalization "when a disease dangerous to the public health breaks out in any township . . . and the board may cause any sick or infected person to be removed thereto."²⁶

Recent antidiscrimination law has articulated the standard of significant risk to determine when an individual poses a danger to others. (see discussion of guidelines below.). This standard is consistent with effective public health practice and legal standards traditionally applied by courts. Nonetheless, the trend among state communicable disease statutes—even those that have recently been amended—is to grant public health authorities less well-defined discretion to determine when compulsory powers should be used. For example, California authorizes its department of health to "quarantine, isolate, inspect and disinfect persons, animals, houses, rooms, other property, places, cities or localities, whenever in its judgment such action is necessary to protect or preserve the public health"²⁷ (emphasis added).

Statutes that authorize detaining persons in an institution or treatment facility for observation, examination, treatment, or care sometimes require evidence of behavior that defeats treatment goals or puts others at risk. Some states require evidence that individuals have been exposed (e.g., Connecticut, Indiana, Michigan),²⁸ pose a danger or threat to the community (e.g., Alabama, Indiana, Virginia),²⁹ are likely to leave a treatment facility (e.g., District of Columbia, Indiana, Oklahoma, Texas),³⁰ refuse to submit to tests (e.g., Alabama),³¹ or do not comply with health facility regulations or public health laws (e.g., Michigan).³²

Certainly, there are valid reasons why public health legislation may be written broadly to afford health authorities discretion: (a) legislators are not medical or scientific experts and cannot consider every possible fact pattern in which such decisions must be made; and (b) statutes often are not revised for long periods of time and must be flexible enough to be useful despite the scientific and medical changes that inevitably occur between revisions. However, clear statutory criteria—like the significant risk doctrine explained later in this report—does not limit the use of scientific discretion but rather, affirmatively requires health officials to justify their decisions based on science and the demonstrable need to avert a substantial health threat. More specific criteria governing the use of compulsory powers can also be established by regulations promulgated by authorities with the necessary subject matter expertise and revised without the need for legislation as changes in the field occur.

Lack of Due Process Procedures for Exercising Public Health Powers

Since the time that most state communicable disease statutes were enacted, constitutional law has evolved to offer significantly greater protection for individual rights. Due process requirements, in particular, ensure that no person shall be deprived of rights that are "implicit in the concept of ordered liberty" and guarantee that every individual shall be treated with at least a minimum of "decency and fairness."³³ Many state statutes lack procedural protections for the exercise of compulsory powers or the review of public health restrictions. Procedural protections seek to ensure that health officials make fair and impartial decisions. Where few formal procedures exist, public health officials risk rendering biased or inconsistent decisions and erroneously depriving individuals of their liberty.

Weak Privacy Protection

Older statutes often offered minimal privacy protections for the collection, reporting, and release of potentially stigmatizing personal information. Idaho's venereal disease statute (originally enacted in 1921) promises to treat personal information with "all possible secrecy to benefit the sufferer of the disease, as long as he fulfills all the requirements of the chapter."³⁴ This statute has since been amended to ensure confidentiality of information involving communicable and sexually transmitted diseases.³⁵ Protection in some states, however, depends upon the disease classification. (See the discussion on classification of public health statutes below.) Privacy protections for persons with STDs, for example, are typically much stronger than those for persons with TB or other infectious diseases.

Classification of Public Health Statutes: Sexually Transmitted Diseases (STDs), Specific Diseases, Communicable Diseases

The majority of states address STDs, certain diseases like tuberculosis or HIV/AIDS, and communicable diseases under separate statutes.³⁶ It is not necessarily unreasonable to treat different diseases differently; sometimes the reason for creating disease-specific statutes is that different diseases pose different risks of transmission, as in the case of tuberculosis versus, for example, enteric diseases. Statutory systems that classify disease as sexually transmitted or communicable or that contain many disease-specific provisions can, however, create several problems. First, rigid classifications can frustrate attempts to deal effectively with diseases that do not fit neatly into any category. For instance, diseases like HIV/AIDS and hepatitis B can be transmitted sexually, perinatally, or through contact with blood or other bodily fluids (e.g., shared injection equipment or blood transfusions). Deciding how to classify an infectious disease can be time consuming, counterproductive, and politically charged.

Second, classification of disease often determines whether public health authorities are able or required to exercise compulsory public health powers. An important function of public health statutes is to define when and under what conditions public health officials are authorized or mandated to exercise public health powers. Public health officials should be concerned with the degree of danger to the community posed by the health problem, the existence of an effective public health intervention to reduce that danger, and the potential liberty and privacy burdens of those interventions. Reliance on disease status rather than on individual risk assessment means that public health officials have less flexibility in identifying and preventing health threats.

Third, disease classification reflects stereotypes associated with STDs. The statutory language in venereal disease laws is often stigmatizing, the public health powers tend to be unnecessarily coercive, and the provisions are often potentially punitive. Compulsory powers that are unduly stigmatizing, coercive, or punitive can thwart effective public policy because they may drive epidemics "underground." Persons at risk for disease, for example, may not come forward for testing, counseling, and treatment if they fear an inordinately punitive response to their health status or behavior.

Finally, multiple standards can confuse state or local officials, resulting in lax enforcement or inappropriate restrictions. Confusion also increases the risk that sensitive information will be disclosed. Multilayered statutes often require separate bureaucracies for implementation, data collection, and enforcement; such statutes waste scarce public health resources. (For more discussion on classification of diseases, see the section on guidelines below.)

Sexually Transmitted Disease (STD) Statutes

Older STD statutes, often called venereal disease statutes, tend to allow severe restrictions on liberty, often based on vague or nonexistent criteria. For example, New Jersey authorizes local health officers to order a compulsory medical examination of any person suspected of having a venereal disease. These statutes frequently single out a specific group or profession (often commercial sex workers and, less often, their clients) for particularly harsh treatment. The New Jersey statute, for instance, automatically classifies prostitutes as suspect or "lewd persons" who "may be required to submit to an examination at any time."³⁷

Some of the earliest public health laws to contain strong privacy protections were those authorizing STD control activities or requiring STD cases to be reported to local or state health departments. Often, STD statutes prohibit the release of personal information, even in response to subpoena.³⁸

STD laws, however, vary in the exceptions they allow to privacy protections. Some state laws are quite restrictive. For example, the South Dakota statute states:

The identity of any individual appurtenant to an investigation conducted pursuant to a report of a venereal disease shall be maintained in strictest confidence within the venereal disease control system, and any information obtained from that individual may not be disclosed in any action in any court or before any tribunal, board or agency.³⁹

Other states enumerate the conditions under which disclosure is permitted. Disclosure is most commonly allowed when the information is released either to the health department or a local health officer; or upon the patient's consent. Some states, like New Jersey, grant broad discretion to whoever holds the confidential information, permitting disclosure if "necessary in order to protect the health or welfare of the person or of his family or of the public."⁴⁰

Lawmakers can craft meaningful privacy safeguards in the form of substantive sanctions for statutory violations. Modern STD laws often impose penalties for unauthorized disclosure of personal information or other violations of confidentiality. Most states impose criminal and/or civil penalties for unauthorized disclosure of public health, communicable disease, or STD data.⁴¹ Of the states that designate violations as a crime, all designate them as a misdemeanor (e.g., Colorado, Nebraska).⁴² Some states specify penalties other than civil or criminal. A number of states provide that public officials who violate confidentiality provisions may be subject to removal or impeachment, in addition to criminal penalties (e.g., Florida, California, Indiana).⁴³

Disease-Specific Statutes

Disease-specific statutes demonstrate lawmakers' tendency to create communicable disease law only in response to disease outbreaks. More recently enacted disease-specific statutes address both new diseases, like HIV/AIDS, and old threats, like TB. Disease-specific statutes allow legislators to shape the law to fit the characteristics of a given disease. Thus, an HIV statute might incorporate the scientific conclusions of how HIV is transmitted and disallow restrictions on personal liberty based on HIV status alone. Disease-specific statutes may also contain alternatives to traditional compulsory public health measures, reflecting the most recent treatment developments.

Disease-specific statutes pose problems similar to those of disease classification laws (e.g., those targeting communicable diseases or STDs). Basing substantive law, procedures, and criteria primarily on status threatens to perpetuate stereotypes and prejudices associated with certain diseases; increases the probability of error in disease reporting, disclosure, or investigation; is less responsive to new disease threats; and may waste scarce resources by duplicating bureaucracies.

Communicable Disease Statutes

Communicable disease statutes generally grant health officers substantial authority to control diseases that threaten the public health. These laws often authorize health officers to initiate whatever measures are necessary to prevent the spread of communicable disease within their jurisdictions (e.g., California).⁴⁴ The measures might include orders to medically examine, test, or treat persons who have, or are suspected of having, a communicable disease or to inspect, control, or destroy property capable of spreading disease. When necessary to protect the public health, health officers can also detain, isolate, or quarantine individuals (e.g., Rhode Island).⁴⁵

State communicable disease laws require physicians, hospitals, laboratories, or others to report specified diseases to state or local health departments and usually to place limits on disclosures by the health department.⁴⁶ Compared to STD statutes, communicable disease statutes may allow more or broader exceptions for disclosure. Disclosures are most often allowed for statistical purposes or to enforce public health laws. In addition, many states authorize disclosure pursuant to subpoena or court order (e.g., Arkansas, California, Hawaii).⁴⁷ Other states place disclosure within the discretion of public health officials (e.g., Pennsylvania).⁴⁸

Approximately a dozen states have updated or completely revised their communicable disease statutes to align their practices with modern understandings of disease prevention, transmission, treatment, and epidemiology, and to provide greater protections for individual liberties. In 1994, Minnesota completely revised its communicable disease provisions.⁴⁹ The new statute clearly articulates criteria to determine whether an individual presents a "health threat to others" and should therefore be isolated. In each case, the assessment of risk must be tailored to the particular patient. The statute also enumerates procedures that must be met before an individual can be isolated or detained. The individual has a right to notice and appear, the right to present and cross-examine witnesses, and the right to counsel. The standard of proof is "clear and convincing evidence." The statute includes several alternatives to commitment—ranging from ordering the respondent to participate in a designated education, counseling, or treatment program to living in a supervised setting. The court must review possible alternatives before committing any individual.

Some states have reformed their laws to protect all health information that the government collects, including communicable disease data, under a single statute. A small number of states (e.g., Montana and Washington) have adopted legislation based upon a model statute for protecting and disclosing public health data (e.g., the Uniform Health Care Information Act).⁵⁰ For example, Montana's Government Health Care Information Act, which applies to information held by public agencies, provides strong protection for public health data and permits disclosure only for narrowly targeted public health purposes (e.g., statistical uses; following the individual's consent; to medical personnel if necessary to protect the subject's life or health; pursuant to tuberculosis or STD control laws; in compliance with disease reporting; to another state or local health department to control diseases or to provide services to the subject; and in reporting cases of child abuse).⁵¹

Other states have achieved substantially the same goal by enacting public health information statutes that treat all communicable disease data as confidential, provide strong statutory provisions for the holding and release of data, and impose penalties for unauthorized disclosure (e.g., Minnesota).⁵² States like New York and California maintain separate statutes for confidentiality of different types of disease data, although they enumerate a detailed list of disclosures similar to that in the Uniform Act and permit disclosure for additional, specified circumstances.⁵³

Our review of public health legislation suggests that state public health law remains fragmented within states and highly variable among states. Statutes that were enacted 40 to 100 years ago often form the foundation and the substance of state communicable disease law. Although some states have amended their statutes, many fail to reflect in their laws the best of modern science, treatment alternatives, or constitutional safeguards of equal protection and procedural due process. Many states continue to classify diseases artificially as either communicable or sexually transmitted, lack specific criteria or procedures for wielding compulsory public health powers (e.g., including isolation or quarantine), and impose conflicting layers of rules and bureaucracy. Although some states have accomplished important work either in reforming their public health codes or in updating confidentiality provisions for health data held by the government, they are in the minority. Reform of public health and communicable disease law in all the states is both timely and necessary to ensure that public health departments can help create the conditions in which people can be healthy.

The Role of Public Health Law

There are at least four possible roles for the law in advancing public health.⁵⁴ Law can define the objectives of public health and set its policy agenda, authorize and limit public health actions, serve as a tool of prevention, and facilitate planning and coordination of governmental and nongovernmental health activities. These roles have no clear boundaries and overlap considerably. However, they provide a guide to the various rationales supporting law reform.

Public health statutes should establish the purposes, goals, and core functions of public health, the personnel and infrastructure realistically needed to perform those functions, and budgeting and funding mechanisms that will provide reliable levels of support. By doing so, the law can inform and influence the activities of government and the expectations of society about the scope of public health. Courts also give deference to statements of legislative intent and may permit a broad range of activities that are consistent with the legislative objectives. No government program can be assured funding during budgetary crises. However, structuring communicable disease law to embrace defined functions, minimum infrastructure and personnel needs, and funding mechanisms can provide a yardstick for public health departments and policy makers in the future.

Public health law must provide broad authority for the exercise of public health powers and, at the same time, limit that authority where necessary for the protection of individual rights. In considering law reform, it is important to distinguish between duties and powers in public health. Legislatures should impose duties on health departments to initiate a broad range of activities relating, for example, to surveillance, communicable disease control, environmental protection, sanitation, and injury prevention. Health departments also require a flexible range of powers to achieve public health objectives.

Traditionally, health departments have been committed by their basic enabling statutes to the deployment of compulsory interventions to control the spread of infectious disease, relying, for example, on screening, medical examinations and treatment, and quarantine. Public health powers, however, need not be restricted to the use of personal control measures relating to communicable diseases; they should also include an array of prevention strategies like education, counseling, social marketing, taxation, inspection and control of dangerous properties and activities, and regulation of commercial speech (e.g., advertising for tobacco, alcoholic beverages, and guns). Clear assignment of duties is an important way for a democracy to articulate a vision of public health. In more concrete terms, explicit legislative backing can emphasize for the courts the compelling state interest in health measures that are often challenged on constitutional grounds.

While providing for a flexible range of public health powers, the law must also place appropriate limits on those powers to protect individual rights. This is best accomplished by adhering to certain strategies:

Establishing clear and narrow criteria for the exercise of compulsory powers by requiring health authorities to demonstrate a significant risk of harm or other important interest.

Providing procedural due process for all individuals who face serious constraints on their autonomy or liberty.

Safeguarding the right of individuals to be free from unwarranted invasions of privacy or invidious discrimination.

Public health law is, and should remain, a tool of prevention. Public health law should use a wide variety of legal means to prevent injury and disease by creating the conditions for people to be healthy. Interventions should be designed to change unhealthy behaviors and conditions at both the population and the individual level. Law can play an important role in population-based prevention. Consider the public health benefits that have been, or could be, employed through direct mandate, taxation, tort law, or other incentive rules: seat belt laws; occupational safety regulations; age restrictions on buying tobacco and alcoholic beverages; limits or warnings on high-fat foods; "equal time" for public service messages concerning hazardous products; and "public health impact assessments" for large building projects, such as low-income housing developments.

Finally, public health law should establish methods and procedures for long-term plans to prevent and control public health threats and for interagency cooperation. Thoughtful public health policy must be based on long-range planning that forecasts resource needs, maintains the infrastructure, and anticipates new health threats. To this end, public health officials should be given the authority, if not the mandate, to design and implement policies in coordination with other agencies and branches of government. It is clear that public health risks are highly complex. It is often not possible for a health department to control health threats without the help of other agencies like departments of housing, education, welfare, social services, and the environment.

Effective reform can and must ensure that public health law is truly responsive to the shifts in the public health environment, developments in the understanding and the mechanisms of disease, and modern standards of epidemiology and constitutional jurisprudence. The public health system is facing enormous challenges. Law can help equip the public health system to meet these challenges, but only if policy makers initiate reform.

Law reform will not, in itself, assure effective public health intervention. Nor will law reform guarantee that individual rights to autonomy, liberty, privacy, and antidiscrimination are safeguarded. However, thoughtful law reform provides a solid foundation for promotion of public health and respect for individual rights. Ultimately, good public health law follows the most rigorous understanding of scientific evidence and constitutional doctrine.

The guidelines that follow array and exemplify the principles proposed in this report in a format that may be useful to policy makers in the legislative and executive branches of state government.

Guidelines for Reforming Public Health Law

In reforming public health law, lawmakers should be guided by the question. How best can the legal system further public health?

By reforming the public health code, legislators can eliminate the confusion that currently plagues public health law and impedes effective public health work. The following principles are based on the best public health practices, contemporary legal standards, and the experience of states that have undertaken reform. In the following discussion we rely heavily on the experience of the states that have successfully enacted modern public health statutes. These laws, developed by peers in state legislatures, can be important models for modernization of public health laws. The goal is to help legislators in other states to initiate such change with minimal cost.

The following guidelines focus on reform of communicable disease and sexually transmitted disease statutes. Although communicable and sexually transmitted disease statutes constitute only one part of public health law, their reform is of primary importance. Reform that introduces principles of objective risk assessment, evaluation of efficacy, and minimization of human rights burdens will eliminate some of the most grievous shortcomings of existing laws and serve as a template for broader reform.

Eliminate Separate Classifications for Communicable and Sexually Transmitted Diseases and Avoid Disease-Specific Provisions

Most state public health laws are classified by disease. Some laws use broad categories, such as sexually transmitted or communicable diseases; others are crafted for a specific medical condition (e.g., tuberculosis^55,56 or HIV infection).⁵⁷ Most states classify sexually transmitted diseases like syphilis, gonorrhea, and herpes separately from other communicable diseases. Although the primary rationale behind the classification scheme is to distinguish between modes of disease transmission,⁵⁸ its origins may be better explained by historical and political influences than by reasoned distinctions or thoughtful public health strategies.⁵⁹ The result often creates different standards and procedures (e.g., for public health activities, information collection, and even outreach) for different diseases. Thus, the legal environment for controlling health risks depends upon how the risk is classified.

When a new disease emerges, conflicts can arise about which set of laws to apply. These disputes often represent a difference of approach (e.g., whether coercive or voluntary measures are preferred). In the case of the HIV epidemic, for example, the issue of whether to classify HIV as an STD, a communicable disease, or a special disease spurred contentious litigation that pitted the medical community against public health establishments,⁶⁰ consumed state legislatures, and diverted attention from more pressing legislative and public health issues.

A strong argument exists that public health law should be based on uniform provisions that apply equally to all infectious diseases. Public health interventions should be based on the degree of risk, the cost and efficacy of the response, and the burdens on human rights. These considerations cut across statutory disease classifications. Public health statutes are often complicated amalgams, difficult for the public to comprehend and challenging for health officials to implement. A single set of standards and procedures applicable to all communicable diseases would add needed clarity and coherence to legal regulation and might diminish politically motivated disputes about how to classify newly emergent diseases. In reviewing and revising disease classification systems, policy makers might also replace or remove potentially discriminatory or inadequate provisions (e.g., the stigmatizing provisions often contained in STD statutes and the relatively lax confidentiality protections of some of the older communicable disease statutes).

Recognize the Value of Voluntary Cooperation in Obtaining Compliance

Our society values highly individual rights, liberty, and autonomy. Our legal and medical systems reflect great respect for individuals' choices (for good or ill). Except in rare circumstances, individuals have the right, pursuant to the doctrine of informed consent, to accept or refuse any medical treatment or intervention. Of course, individual liberty is not unlimited. When an individual's decisions or actions potentially endanger the health of others, public health law and constitutional standards recognize public health officials' broad powers to restrict the individual's liberty. Consequently, laws permit public health authorities to confine persons with active tuberculosis, as well as to prohibit driving while intoxicated or sending an unvaccinated child to school during a measles outbreak.

The IOM recognized the centrality of cooperation and voluntarism when it defined public health as what we as a society do "to create the conditions in which people can be healthy." The IOM did not suggest that the role of public health is "to make people healthy." By suggesting that public health "create the conditions" for health, the IOM implies that individuals must assume some responsibility for their health (e.g., by taking public health advice seriously and making healthy choices regarding diet and activity, sexual activity, and consumption of alcohol or tobacco). In 1993, McGinnis and Foege suggested that a large proportion of deaths in the United States are linked to behaviors like smoking, diet and activity patterns, consumption of alcohol, sexual behavior, motor vehicle injuries, and illegal drug use.⁶¹ Public understanding and cooperation are the primary means to achieve long-term behavioral changes. Public health officials must resort less often on coercion and turn more toward promotion of healthful changes in the community and the environment.

The bulk of public health work relies on the public's cooperation and voluntary compliance with a wide variety of public health advice, from preschool immunizations to complex tuberculosis treatment regimes. Even provisions that appear to be mandatory, such as contact tracing for persons with active TB or partner notification for persons with STDs, depend largely upon the patient's cooperation in identifying his contacts and sexual or needle-sharing partners. Although public health statutes have tended to focus on compulsory powers, only a small percentage of public health work directly involves legal compulsion.

The HIV epidemic vividly illustrates why cooperation rather than coercion is a preferred basis for communicable disease control. Because HIV is transmitted primarily through private or intimate behaviors (sex and drug use) and poses no danger to household or casual contacts, effective HIV prevention must address those intimate behaviors. Historical experience with STD control has shown that coercion has little effect on intimate behaviors and is generally ineffective in preventing STDs.⁶² People with HIV/AIDS suffer from discrimination, stigmatization, and the loss of jobs, housing, and the support of families and communities. Public health officials fear that imposing mandatory policies to identify people with HIV, or to attempt to control their activities, will lead to additional discrimination. Ultimately, persons at risk of infection might avoid contact with medical and public health authorities to avoid detection. National and international public health and medical bodies endorse HIV prevention policies incorporating a voluntary approach.^63,64

Public health authorities, of course, do not need communicable disease laws to encourage voluntary behavior change; thoughtful health officials can rely on an ethic of voluntarism simply by declining to exercise their compulsory powers. Reformed communicable disease statutes, however, can expressly state the importance of voluntary compliance with public health measures. Reformed legislation could impose affirmative duties on health departments to encourage healthful behavior by employing a broad variety of measures: traditional prevention services like counseling and education; social marketing and public service advertisements; facilitating the means for voluntary behavior change by providing condoms and sterile syringes; and incentive systems that would encourage taxation policy and benefits for child care, transportation allowance, food, and monetary inducements to adopt healthier behavior.

Where voluntary measures fail, however, public health officials must be authorized to compel behavior change through the use of a wide range of less restrictive powers. For example, a patient with active tuberculosis who refuses to stay in isolation or complete his medication poses a direct threat to his family, neighbors, and community. (The use of compulsory powers on a demonstrated threat of significant risk is discussed in the next section.) Even where public health officials must exercise compulsory powers, however, the concept of the least restrictive alternative holds that the action must impose the least burden on individual rights, through "a graded series of less restrictive alternatives" (discussed below). Public health statutes should integrate voluntary measures into disease control provisions as another means to maximize public health goals while minimizing human rights burdens.

Base Use of Compulsory Powers on a Demonstrated Threat of Significant Risk

In combating communicable diseases, public health officials need both clear authority to exercise compulsory powers and sufficient guidance in deciding when to exercise such powers. Consequently, effective and constitutionally sound public health statutes require a rational and reliable way both to assess risk and to establish procedures to ensure the protection of individual rights.

Existing public health statutes do not specify a consistent and exacting standard for assessing risk. (See the discussion above on inconsistencies of existing statutory law.) The doctrinal void created by the current lack of clear standards for review of public health actions may be filled from an unlikely source: the evolving corpus of antidiscrimination law, in particular the Americans with Disabilities Act (ADA),⁶⁵ as well as related cases and statutes.⁶⁶ The ADA, however, does not cover all persons with infectious conditions, and it does not cover all circumstances in which health departments may wish to act. For example, recent court cases have determined that the ADA may not cover persons with asymptomatic HIV.⁶⁷ Consequently, the standards enunciated in the ADA must be incorporated into state communicable disease statutes to ensure fair and effective decision making by state health departments.

The ADA prohibits discrimination against a qualified or eligible individual with a disability, a term that encompasses people with a variety of serious communicable diseases.⁶⁸ However, the ADA also states that qualification or eligibility standards can include a requirement that a person with a disability "not pose a direct threat to the health or safety of other individuals."⁶⁹ Under the ADA, direct threat is defined as "a significant risk to the health or safety of others that cannot be eliminated by reasonable accommodation."⁷⁰ The determination that a person poses a direct threat to the health or safety of others may not be based on generalizations or stereotypes about a particular disability. Rather, the determination must be based upon an individualized assessment of the risk that the person poses and on reasonable judgments that reflect current scientific data or other objective evidence.⁷¹ In determining whether a person poses a significant risk, five factors must be considered:⁷²

Nature of the Risk (Mode of Disease Transmission)

A significant risk should be based upon a primary mode of transmission, not one that is unlikely or highly inefficient. Epidemiological research can provide such information. Modes of transmission that pose only a theoretical risk of transmission cannot reasonably justify restrictions on activity. An individual poses a direct threat to others only when there is proof of actual infection rather than merely because he or she may have been exposed to the disease.

Although compulsory powers are ordinarily reserved for persons with communicable diseases, a person can sometimes pose a significant risk even when he or she is not presently known to be infectious, as in the cases, for example, of (a) a nonimmune health care worker who has been exposed to measles or (b) a health care worker with pharyngitis who is restricted from working until his or her throat culture results are negative for group A streptococcus.

Duration of Risk (Length of Communicability)

Usually the "duration of risk" is that period in which a person with a communicable disease is thought to be infectious. If, in seeking to protect others from being exposed to and infected with a communicable disease, public health officials physically separate infected persons from the noninfected, they may justifiably do so only during that time in which the infected person is capable of transmitting the disease.

Not all diseases, however, fit this model. Some diseases, like HIV, render the person permanently infected, yet the disease is not spread through casual contact. Other diseases, like tuberculosis, pose a particular danger to the community if the patient fails to complete treatment. For instance, a person with TB may not be infectious after several weeks of therapy but may relapse and/or develop drug-resistant disease if she stops taking her medication. In this case, compulsory measures, including isolation, may be justified to prevent a foreseeable public health threat.

The period of communicability is an important factor in determining whether compulsory measures should be used. Tuberculosis, for instance, has a relatively short period of communicability; active contagiousness can be eliminated in a few weeks. Where voluntary isolation and treatment are unsuccessful, the clear threat to the public (from untreated active TB), the efficacy of public health measures (in eliminating infectiousness), and the relatively short period of confinement usually justify restrictions on liberty. In contrast, bloodborne diseases like AIDS are transmissible only through certain behaviors but have no finite period of contagiousness.⁷³ In this situation, it is difficult to justify compulsory measures that would overwhelmingly infringe on the individual liberties of carriers of these diseases.

Probability of Risk (Likelihood of Transmission)

The probability of risk depends upon the likelihood that certain activities will transmit the disease and how often those activities will occur. The probability that a person will transmit a disease is a scientific calculation that can be made to a reasonable degree of certainty. Such calculations best justify the use of public health powers.⁷⁴ For example, theoretically HIV could be transmitted through spitting; HIV has been isolated in saliva. Because no documented cases of such transmission exist, however,⁷⁵ personal restrictions on liberty based on this speculation could not be reasonably justified.⁷⁶ The use of compulsion is justified only where there is a likelihood, based upon sound scientific evidence, that the person will pose a significant risk to others (e.g., a dentist with chronic hepatitis B virus and a history of cutting him- or herself and of transmitting the virus to others may be required to restrict certain professional activities).

Severity of Harm (Seriousness of the Consequences)

The seriousness of harm to third parties tends to be inversely related to the risk of disease transmission. As the severity of the disease increases, the level of risk needed to justify the public health power decreases. Regardless of the severity, however, public health regulation requires a reasonable probability that the disease will be transmitted. For example, although HIV infection is ultimately fatal, this fact does not justify excluding children or teachers with HIV from schools because the risk is remote that students will transmit the disease to their classmates⁷⁷ or that teachers will transmit the disease to the students.⁷⁸

Human Rights Burdens

The nature, severity, and duration of the restrictions on liberty must be balanced against the efficacy of the public health regulation. The greater the imposition on an individual's liberty, the greater the need for a public benefit. For example, briefly excluding from school a student who is infected with chicken pox is not likely to seriously burden individual liberties. In contrast, permanently excluding from society an individual who has a disease that has no finite period of infectiousness is a substantial burden. Public health calculations must weigh the effectiveness of the restriction (will exercise of the public health power reduce a serious health threat?) against the human, social, and economic costs that the restriction will impose.⁷⁹

Provide Procedural Due Process Protections

Public health policies that burden individual rights implicate the due process clause of the Fourteenth Amendment to the Constitution.⁸⁰ The nature and extent of the process required depends upon several factors: the nature of the interests affected, the risk of an erroneous decision, the value of additional safeguards, and the administrative burden of additional procedures.⁸¹ While we propose that communicable disease statutes incorporate procedural due process as required by the Supreme Court, we are aware that, in practice, due process has often been superficial. In the mental health context, for example, attorneys have often failed to press for rigorous scrutiny of civil commitment decisions. Rather than simply incorporate the mental health model to communicable diseases, it is important to ensure that due process guaranteed by law is robustly applied in practice.

Persons with infectious disease who are subject to detention, isolation, or quarantine are entitled to an impartial hearing. The Supreme Court recognized that "there can be no doubt that involuntary commitment to a mental hospital, like involuntary confinement of an individual for any reason, is a deprivation of liberty which the State cannot accomplish without due process of law."⁸² In cases involving civil commitment of persons with mental illness, the Supreme Court has required "clear and convincing" proof of dangerousness,⁸³ and many lower courts have required an array of procedural protections.⁸⁴ Courts have reasoned that little difference exists between loss of liberty for mental health purposes and loss of liberty for public health purposes.⁸⁵ The procedural protections include written notice, right to counsel, a full and impartial hearing, and the right to an appeal. Public health officials should adopt these standards and procedures when seeking to exercise coercive powers against an individual with an infectious disease. These rigorous procedures are justified by the potential restriction on an individual's liberty for an extended period of time and the potential for erroneous fact-finding.⁸⁶

Emergency Exceptions

Public health statutes may create narrow exceptions to procedural due process requirements. In emergency situations, when immediate detention is necessary to prevent an individual from harming partners, family members, or other close contacts, public health statutes may waive the requirement of a hearing prior to confinement. Once compulsory powers have been utilized, however, the statute should provide for an immediate hearing, a showing of current infectiousness, and evidence of the need for continued detention or isolation. Where health authorities seek prolonged confinement, the patient is entitled to the full range of due process protections. By contrast, in cases of short-term detention, due process requirements may be somewhat relaxed owing to the relatively short period of confinement and the urgent need to protect the public. Here too, however, proof of likely harm and contagiousness must be established as soon as compulsory powers have been exercised.⁸⁷

A Local Example

A recently amended New York City health regulation demonstrates how due process protections can be incorporated into a tuberculosis statute. The regulation obliges the health commissioner to "prove the particularized circumstances (including recent behavior) constituting the necessity for detention by clear and convincing evidence"; to provide a statement of "the less restrictive treatment alternatives that were attempted and were unsuccessful and/or . . . were considered and rejected, and the reasons such alternatives were rejected"; to appoint counsel and provide a due process hearing; and to detain the patient in a secure setting designed for the treatment of tuberculosis. This regulation was specifically amended to articulate the standards for compulsory powers and to ensure sound principles of procedural due process and respect for civil liberties.⁸⁸ The amended statute gives New York City health officials both the clear authority to exercise compulsory powers and specific guidance on when such powers are appropriate. As a result, health officials are better equipped to combat tuberculosis while respecting individual liberties to the greatest possible extent.

Provide a Range of Options for Public Health Authorities

Public health officials are often faced with a limited choice of statutory options: wholly voluntary measures or highly restrictive ones. These alternatives may not be enough. Voluntary participation is critical to public health work, and public health officials should always seek voluntary compliance with public health measures before using compulsion. (See the discussion above on voluntary cooperation.) However, where voluntary participation is insufficient to obtain compliance from all or nearly all patients, public health officials need more options. Public health authorities should have a number of powers ranging from isolation and quarantine to directly observed therapy, cease and desist orders, and requirements to attend courses of counseling, education, and treatment.

A Graded Series of Less Restrictive Alternatives

Tuberculosis control programs offer a compelling example of the need for a range of public health options.⁸⁹ The state has a powerful interest in ensuring that all patients with active TB successfully complete their treatment. Failure to do so is the chief reason that strains of multiple drug-resistant TB (MDR-TB) have developed. MDR-TB poses a serious danger to the public because persons who develop it can transmit it to others. MDR-TB is difficult⁹⁰ and expensive⁹¹ to treat and sometimes impossible to cure using all available anti-TB drugs.^92,93 Patients with both HIV and MDR-TB have a particularly poor prognosis and a greatly elevated risk of death.^94,95

A statute that authorizes isolation and long-term confinement of patients with TB (e.g., while they are infectious or otherwise pose a danger to the community) should specifically include a graded series of less restrictive alternatives. Such alternatives include allowing health workers to offer incentives (e.g., food, child care, transportation to appointments), other social services (e.g., drug treatment), or assistance in taking medications (e.g., Directly Observed Therapy, court-ordered Directly Observed Therapy, and other community health orders). Directly Observed Therapy (DOT), a compliance-enhancing strategy in which each dose of medication is taken under observation by a family member, public health worker, or any other responsible person, is much less intrusive than confinement for medical treatment. Use of DOT and other alternatives permits public health officials to control the spread of communicable disease with minimal infringement on fundamental liberties.^96,97

Use of the Least Restrictive Alternative

In addition to providing a range of public health measures, public health statutes should require health officials to choose the least restrictive alternative that will accomplish the public health goal. This would help align communicable disease statutes with the evolving standards of both antidiscrimination law and constitutional law.

Applied to TB control, the principle of the least restrictive alternative holds that health officers must obtain informed consent before initiating DOT and try DOT before seeking long-term confinement for medical treatment. Compulsion should be utilized only when public health officials are able to show that the individual is unwilling or unable to complete medical treatment voluntarily. Although the CDC (Centers for Disease Control and Prevention) recommends DOT, it does not advocate the universal application of compulsion.

Many persons with communicable diseases are willing to comply voluntarily with recommended restrictions and treatment. The overwhelming majority of patients with TB, for example, accept DOT when offered.⁹⁸ Providing public health decision makers with a graded series of alternatives—in addition and as an enhancement to voluntary measures—not only recognizes widespread willingness to comply voluntarily; it also attempts to maximize compliance with minimal burdens on individual rights.

Provide Strong Protections for Privacy and Security of Public Health Information

The collection, storage, and use of vast amounts of information about the health of populations is one of the core functions of public health.⁹⁹ Surveillance is among the most important functions of public health, permitting early identification of health threats, targeted delivery of prevention services, and links to treatment and other health care services. In the area of communicable disease control, data are collected by local and state health departments through mandatory and voluntary reporting of events and cases of disease, and at the federal level through voluntary reporting. Disease surveillance forms the foundation for most traditional public health measures, including case finding, contact tracing, treatment of infected individuals, and targeted prevention or immunization programs.¹⁰⁰

The collection of large quantities of personally identifiable data creates privacy concerns. Collection of such data by health departments, managed care organizations, hospitals, researchers, government regulators, and others compounds the opportunities for misuse or disclosure of sensitive information. Increasingly, health information is being stored in electronic form. Users can access this data faster and more easily than ever before. The marketability of health data, combined with electronic access, provides a motive and a means for theft or improper use of confidential information.

Statutory provisions governing data collection and privacy must seek to satisfy two goals that will, at times, conflict: (1) ensuring access to accurate, up-to-date information for public health purposes and (2) protecting that information from disclosure through confidentiality and security provisions.

It is unrealistic to try to craft a public health information system that ensures ready access and absolute privacy protections. What government can do is create fair, comprehensive rules to ensure that data are acquired, used, and disseminated according to unambiguous criteria and procedures, under mandated security arrangements, with strict penalties for breaches of privacy.¹⁰¹

The guidelines outlined below apply only to personally identifiable data because they raise the most acute privacy concerns.¹⁰² Identifiable data include information that contains a uniquely identifiable characteristic (e.g., a name, social security number, fingerprint, or genetic link).^103,104 The guidelines do not apply to anonymous, unlinkable data because they pose minimal privacy concerns. Anonymous data are those that are stripped of all identifiers (e.g., no means exist to associate the information with a specific person). For example, blind epidemiological research and statistical applications of aggregate data are anonymous; they provide strong public health benefits with negligible effects on privacy. Data can be linked to an identifiable person with the use of a confidential code. This is done to facilitate future disclosure of information that is deemed vital to the health or safety of the subject or others (e.g., to inform the subject of an infectious disease or an available treatment). Linkable data present an intermediate level of privacy concern.

Justification for Data Collection

Acquisition of health information cannot be considered an inherent good. Privacy statutes should require that public health authorities clearly justify the collection of personally identifiable information. Criteria for data collection include:

preventing a significant public health risk

providing a likely benefit to the subject (e.g., treatment or other services)

conducting research or surveillance to monitor and maintain the community's health

Public health authorities carry the burden of demonstrating that data collection is likely to achieve the stated goal. Collection of nonidentifiable or aggregate data is preferable to gathering personally identifiable information and is mandated when it could achieve the public health goal as well or better.

Information for Subjects

Where government authorizes or mandates the collection of identifiable health data, subjects should be informed of the purposes of the data collection; its proposed use; how long the data will be stored; the circumstances under which it will be expunged; and the extent to which third parties (e.g., regulators, researchers, and government officials) may obtain access. Data should be acquired, stored, used, and transmitted consistently with what the subjects are told.

Fair Information Practices

Fair information practices demand that no secret data systems exist. Moreover, subjects should have access to information about themselves and should be given the opportunity to correct or amend their personal records. Personal data should be expunged when no longer needed for the stated purpose. Finally, public health officials should ensure the reliability of the data for their intended use and exercise exacting precautions to prevent misuse.¹⁰⁵

Privacy and Security Assurances

Legally binding assurances of privacy and security should attach to all personally identifiable public health information. The collector of the data would bear a legal duty to maintain its confidentiality and to store it in a secure system. Significant penalties would be imposed for breach of these assurances.

Statutory privacy and security assurances would apply to all who use the information. Accordingly, any recipient of the information would be required to honor the same privacy and security assurances as the original holder. The duty to protect data, then, would transfer with the data, as would liability for any violation of privacy or security.

Disclosure of Data

Disclosure of public health data could be made only for purposes that are consistent with the original collection. Thus, data could be disclosed only where necessary to avert a significant health risk, for the subject's therapeutic benefit, or for surveillance purposes. In addition, public health authorities must follow the least intrusive disclosure principle; that is, the information disclosed must be the least identifiable, the least sensitive, and revealed to the fewest number of persons necessary to achieve the stated purpose.

Secondary Uses of Data

Secondary uses of data are those that are incompatible with the original purposes of collection. For example, information collected for a permissible purpose (e.g., prevention, treatment, or surveillance) could not be appropriately used in ways that might affect the person's rights, privileges, or benefits without the person's authorization.¹⁰⁶ Secondary uses of identifiable information beyond those originally intended would be permitted only with the individual's informed consent or for an important public purpose and with rigorous privacy safeguards. For example, the Kennedy-Kassebaum Act permits secondary uses of health information for such purposes as quality assurance and regulatory review. Secondary uses of aggregate or nonidentifiable data for important health purposes would also be allowed without the subject's consent.

Review of Data Protection

A methodical and systematic review of information privacy and security measures is essential to ensure a fair and effective public health information infrastructure. Government should establish an independent data protection commission at the national or state level to carefully evaluate information privacy and security protocols and practices, justifications for collection and disclosure, informed consent procedures, information given to