The Historical Background for Mandatory Reporting Laws in Public Health
© Springer Science+Business Media Dordrecht 2015
Ben Mathews and Donald C. Bross (eds.)Mandatory Reporting Laws and the Identification of Severe Child Abuse and NeglectChild MaltreatmentContemporary Issues in Research and Policy410.1007/978-94-017-9685-9_66. The Historical Background for Mandatory Reporting Laws in Public Health
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LSU Law Center, Louisiana State University, Baton Rouge, LA, USA
Keywords
Child protectionPublic healthPublic health lawTechnologyBig dataPrivacyJudgmentIntroduction
This chapter reviews the history and legal basis for public health surveillance, then looks at the modern world of big data and all pervasive surveillance. While specific legal references are from the United States, most countries follow a similar framework. Historically, there was little legal recognition of personal privacy. Yet the difficulty of collecting data – the administrative cost of surveillance – was so high that individuals generally had significant actual privacy. Through the 1970s, reporting depended on paper reports manually sent in by physicians, and few physicians took the time to file the reports.
Contemporary law recognizes more general privacy rights, but there are still few limitations on government access to data for public health surveillance. Technology and cultural changes have dramatically increased the volume of that data and made it extremely cheap to collect and analyze it. Now public health surveillance can include electronic data from laboratories, individual’s Google searches for disease symptoms, grocery store checkout data that includes over-the-counter and prescription drug purchases, and Facebook updates on every aspect of personal behavior.
The traditional problem of public health surveillance was how to get physicians and others to report. Now the problem for public health authorities is to avoid being drowned in the sea of available data. Public health surveillance is no longer a question of getting everything available. Now authorities must decide what are the most cost-effective sources of information, how can they be handled to minimize unnecessary intrusions into personal privacy, and how to extract the data that needs action from the noise.
The Taxonomy of Public Health and Safety Reporting
The legal and ethical considerations in public health surveillance cannot be analyzed in isolation from the nature and uses of the data collected. There are three dimensions to reporting: Is the data collected from the individual with the target condition or from a third party? Does the data identify specific individuals, or is it anonymous? Finally, how will the data be used? Is it to benefit the target individual, to benefit the public’s health, or to punish an individual for criminal conduct?
Who Provides the Data?
Agencies collect information from individuals about themselves, first-party reporting, and from others who hold information about the individual, third-party reporting. An example of first-party reporting would be interviewing HIV-infected individuals about their sexual partners so that their partners can be notified and counseled about their exposure to HIV. In some cases, medical tests or examinations are required, such as an x-ray for pulmonary tuberculosis or a blood test for syphilis. These are legally classified as searches and, if the individual does not consent, searches can be ordered by a court and administered against the individual’s will.1
A regulation requiring physicians to report HIV-infected patients would be third-party reporting in that the data is obtained from someone (a third party in legal terms) other than the person with the condition being investigated. There are several legal tools to obtain information from third parties. The traditional tool for public health surveillance is a law that requires that the patient’s HIV status (or other condition) be reported when it comes to the attention of the mandatory reporter. The agency can also use a subpoena which is a demand for existing information held by a third party. This can be used to investigate conditions that are covered by reporting laws. If the information is needed quickly or if the agency wants to assure an accurate report, an inspector can search the records and copy the necessary information. While the legal frameworks may differ among countries, all public health and safety agencies use these basic techniques.
How Intrusive Is the Reporting?
From a legal and ethical point of view, the least problematic data is anonymous data that provides information about the condition being tracked, but without identifying the individuals with the condition. Anonymous data is used to track widespread, common diseases or conditions, such as seasonal influenza. Reporting is often limited to the number of cases a healthcare provider has seen, with no additional information. Such data is used for epidemiological background information rather than for individual interventions. Even if the patient is not named, the more detail in the report, the higher the probability that this information can be linked to a target individual. This has become much more significant in the modern era when there is access to extensive personal information on social media and from third-party data aggregators. If individuals can be identified by linking the report with other available data sources, it will raise the same issues as identified data (Yakowitz 2011).
As long as it is collected properly, data such as influenza counts for epidemiologic purposes do not invade an individual’s privacy. In contrast, reports of syphilis, a less common disease with more serious sequelae, include the identity of the patient so that the patient can be located by disease investigators. This is done to assure that persons infected with syphilis receive treatment. People who are infected with syphilis are not restricted, and treatment is not legally mandated in routine cases.2 Disease investigators will contact sexual contacts whom the infected individual voluntarily identifies (Ogilvie et al. 2005). Thus, syphilis reporting raises some privacy issues, but is a limited intrusion into the individual’s life.
Historically, most disease reporting was required to allow authorities to take action to prevent specific individuals from spreading a communicable disease. This requires reporting the name and address of the infected person. While there were cases litigating the right of the state to take the restrictive actions, there was no question about the reporting itself until 1977, when the United States Supreme Court decided a case challenging the right of New York to require the named reporting of persons receiving narcotics prescriptions (Whalen v. Roe 1977). Patient plaintiffs argued that this was an impermissible violation of their privacy, and their physicians argued that it was an improper intrusion into the physician-patient relationship. The court upheld the right of the state to require named reporting, only cautioning that the data should be protected from unnecessary disclosure. Despite the legality of named reporting and its importance in public health, it continues to be controversial for diseases which have a social stigma or which affect minority groups disproportionately.
The largest screening and named reporting program in the United States is the screening of newborns to detect genetic diseases. Newborn screening data is used to identify affected newborns so that they can be treated before the disease does irreversible damage (Moyer et al. 2008). It is the only large-scale, mandatory, systematic screening and reporting program for genetic diseases. (In some states, there is also mandatory HIV screening for newborns to assure that infected infants receive prompt treatment.) While mandatory screening and reporting of genetic diseases is very controversial, the justification for these programs in newborns is that the diseases being screened can only be mitigated by early treatment. Without screening at birth, the chance for early intervention would be lost, at a high cost in suffering and medical care costs.
Tuberculosis reporting raises significant personal privacy issues. While there is concern for the health of the tuberculosis carrier, the primary purpose of tuberculosis reporting is to identify infected individuals who are a threat to the community. Infected individuals are subject to mandatory testing, treatment (or indefinite confinement in lieu of treatment), and restrictions until they are no longer infectious. Despite the level of intrusion, this is still a public health matter rather than a criminal matter – restricting tuberculosis carriers is not done as a punishment for being infected.3 This limits the legal protections for the individual’s liberty and privacy. While tuberculosis reporting is done to protect the community, it also benefits persons infected with tuberculosis by assuring that they receive evaluation and treatment.
Some public health surveillance programs only benefit the public. For example, in many states, healthcare providers are required to report individuals with mental or physical conditions that can impair driving to the state agency that licenses drivers. The public health threat is the risk of an automobile accident, not the transmission of a communicable disease. The individual’s condition has already been diagnosed by a healthcare provider. The purpose of the report is to allow the state to evaluate whether the individual can safely drive a car. Since such a report will likely cost the individual the right to drive, this is a significant intrusion on individual liberty. This intrusion is justified by the risk the individual poses to others and to himself/herself. While the individual might choose to accept the personal risk of driving, the potential harm to others justifies denying the individual this choice.
Abuse reporting poses more complex issues because the purpose of the report is to prevent future harm to the victim of the abuse and to identify the abuser. The report is intrusive for the victim, but this is outweighed by the potential benefits of intervention to stop the abuse. The information may also identify criminal wrongdoing and trigger a criminal investigation and prosecution of the abuser. The abuser has no right of privacy in this data, so it cannot be said to intrude on his/her privacy. As will be discussed later, legal problems arise if the source of the information about the abuse is someone who has a legally privileged relationship with the abuser, such as his/her lawyer. In the United States, abuse laws were first aimed at child abuse and neglect. Many states now require reports of elder abuse.
Violent injury reporting (gunshot wounds, stab wounds, etc.) is done primarily for law enforcement purposes, not to benefit the wounded person or prevent future injuries. While the injury may be accidental, many wounds are due to criminal activity. While some physicians feel an ethical conflict when asked to make a report that may trigger the prosecution of their patient, physicians have no right to refuse to comply with violent injury reporting laws.
Vital statistics are records of births and deaths. These have been recorded for wealthy property owners for hundreds of years, since the information is critical to the inheritance of property and titles. The families themselves would keep records. The parish churches would record births, baptisms, marriages, and deaths. The church might also keep records on poorer parishioners. The state’s interest in these was historically related to property and taxes. It is only more recently that states have passed laws requiring the systematic recording of births and deaths. This required information now includes demographic and medical information that makes these records an indispensable source of epidemiologic information.
Since the primary purpose of collecting vital statistics records is legal, there are strict regulations on healthcare professionals to assure that vital statistics data is reported accurately. This makes vital statistics records the most robust of all traditional public health records. Individuals are not allowed to opt out of vital statistics reporting. In that sense, the reporting is intrusive – it is identified and you cannot opt out. But unlike most other forms of identified surveillance data, it is not used for individual public health or law enforcement interventions. Thus, the intrusion into autonomy is very limited and easily balanced against the benefit to the individual of having a reliable way to establish identity.
Unlike other public health records, birth and death records can be valuable to criminals. For example, the United States vital statistics recording system does not do a good job of matching death and birth records. This allows an individual to use a birth certificate of someone born about the time of their birth, but who died in infancy, as the basis for a false identity. The risk of improper use has been exacerbated in the online world. It may be necessary to include unique markers in vital statistics records, such as the DNA sample that was collected for screening for neonatal genetic diseases. Such enhanced records will raise significant privacy questions.
Comparative Law Issues
Reporting laws are part of administrative law, the law that governs the relationship between government agencies and the people for noncriminal matters. Unlike some aspects of the United States legal system, the administrative law system parallels those in many other countries. All systems must balance the protection of public health and safety against individual privacy and autonomy. In the United States, and most other democratic societies, protections for the individual’s privacy increase when the purpose of gathering the information is to prosecute the individual for a crime. The individual’s rights are much more limited when the information is needed to prevent future harm to others. The legal cases used as examples in this chapter will only be binding law in the United States, but they are representative of common solutions to this balancing question as stated in Article 8 of the European Convention on Human Rights (European Convention on Human Rights Act 2003):
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Everyone has the right to respect for his private and family life, his home and his correspondence.
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There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.
The History of Public Health Power
The fear of plagues is as old as society. They were a threat to individual health and life and a threat to the state itself. Epidemics could destabilize a society and, if the society was naïve to the infection, might totally destroy it (McNeill 1976). Public health was part of national security and subject to the legal deference due to threats to the state. Public health and national security still merge in surveillance for bioterrorism and pandemic illness. Since the power of the state is strongest when its existence is threatened, it is not surprising that historic public health powers were very broad.
Some of the first public health laws are codified in the book of Leviticus in the old testament of the Bible. The word “quarantine” derives from quadraginta, meaning 40. It was first used between 1377 and 1403 when Venice and the other maritime cities of the Mediterranean adopted and enforced a 40-day detention for all vessels entering their ports (Bolduan and Bolduan 1949). This detention period allowed symptoms to develop among any infected persons so that they could be identified. The English statutory and common law recognized the right of the state to identify and quarantine plague carriers. Blackstone observed that disobeying quarantine orders merited severe punishments, including death (Blackstone 1769).
The American colonies followed this English law, and when the United States Constitution was written, the public health powers of the colonies were left with the states (Cooley 1987). Soon after the Constitution was ratified, the states were forced to exercise their police power to combat an epidemic of yellow fever that raged in New York and Philadelphia. The flavor of that period was later captured in an argument before the Supreme Court:
For ten years prior, the yellow-fever had raged almost annually in the city, and annual laws were passed to resist it. The wit of man was exhausted, but in vain. Never did the pestilence rage more violently than in the summer of 1798. The State was in despair. The rising hopes of the metropolis began to fade. The opinion was gaining ground, that the cause of this annual disease was indigenous, and that all precautions against its importation were useless. But the leading spirits of that day were unwilling to give up the city without a final desperate effort. The havoc in the summer of 1798 is represented as terrific. The whole country was roused. A cordon sanitaire was thrown around the city. Governor Mifflin of Pennsylvania proclaimed a non-intercourse between New York and Philadelphia. (Smith v. Turner 1849)
A few years earlier, in 1793, a yellow fever epidemic killed 10% of the population of Philadelphia (Powell 1949). When individual rights were balanced against these threats to the public health and even to societal order itself, the courts found few limits to the public health power to protect the population, called the police power.4 This basic legal analysis and the deference to public health police power persist today.
The state has a second source of power that is used for some forms of public health surveillance, the parens patriae power. This is the power of the state as a parent to protect individuals, sometimes against their will. The classic example is involuntary mental health commitment. When the commitment is because the patient is a danger to others, it is a police power commitment. When the commitment is because the patient is a danger to himself/herself, it is a parens patriae commitment. Programs to identify and report noncommunicable diseases, which contain a component of treatment or intervention to benefit the affected person, are at least partially justified by the parens patriae authority. Neonatal screening for genetic diseases to allow early treatment of the newborns is primarily a parens patriae intervention, although there is community benefit (police power) in the epidemiologic data that is generated.
In contemporary law, most public health programs, including disease surveillance and abuse reporting, are handled by state and local agencies under state law. The federal government collects data on environmental health, workplace safety, and occupational diseases. Some states run their own parallel programs that provide additional protections for the employees of the large employers covered by federal programs. These state programs also reach smaller employers that are not covered by the federal programs. National security issues, which implicate foreign powers or involve domestic terrorism, are handled by the federal government, in cooperation with local authorities.
Constitutional Restrictions on First-Party Data Collection
Obtaining first-party information through a search is the most intrusive form of public health surveillance.5 While the modern notion of privacy was unknown to the drafters of the Constitution, they were familiar with intrusive searches of their homes by British troops. As a result, the only privacy interest that is explicitly protected in the text of the Constitution is the security of one’s home and personal effects from a search. The 4th Amendment does not prevent these searches, but establishes a standard for legal process before a search can be done:
The right of the people to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures, shall not be violated, and no warrants shall issue, but upon probable cause, supported by oath or affirmation, and particularly describing the place to be searched, and the persons or things to be seized. (Constitution 1789)