Public Health Surveillance: Ethical Considerations
Abstract and Keywords
Public health surveillance is one approach used by public health professionals to gather evidence to inform public health policies and actions. Related ethical considerations have evolved over time, from those common to infectious disease surveillance, such as privacy and confidentiality, consent, discrimination, and stigma, to additional considerations related to the surveillance of noncommunicable conditions, such as self-determination justice, and provision of benefit. Recent advances in technology, data science, data collection, and expectations of how public health surveillance can serve the public good have substantial implications for how public health professionals should design and conduct ethical surveillance systems. Public health professionals can anticipate, address, and potentially avoid ethical conflicts by integrating ethical considerations throughout the development and implementation of a public health surveillance system.
(p. 320) Introduction
Public health surveillance is the “ongoing, systematic collection, analysis, and interpretation of health-related data with the a priori purpose of preventing or controlling disease or injury, or of identifying unusual events of public health importance, followed by the dissemination and use of information for public health action” (Lee and Thacker, 2011, Figure 1). Public health professionals gather evidence for action in response to their governmental duty to promote and protect the health of the community. Public health surveillance is one of a growing number of ways public health professionals collect data to inform public health policy. It is most often implemented by trusted state actors, but it increasingly includes nongovernmental professionals. In some cases, participation in public health surveillance is legally mandated and requires health care providers—regardless of patient knowledge or consent—to report specific health outcomes (e.g., cases of syphilis, influenza, or cancer) to health officials, who must then discharge their duty to citizens and take action to protect the public’s health.
The ethical dimensions of public health surveillance evolve as populations progress through the epidemiologic transition. This transition occurs when the primary causes of morbidity and mortality in a population change from communicable diseases to chronic conditions and injuries. In the presence of threats from infectious diseases, governments have an ethical (and often legal) duty to protect citizens from the infectious harm. The harm principle, along with public beneficence, supports the development of infectious disease surveillance activities. The harm principle articulates not only the liberty that a state owes its citizens, but also what individuals owe their community. According to John Stuart Mill ( 2008), a state’s imposition on individual liberty is acceptable only when it is necessary to prevent harm to others. Mill also recognized that (p. 321) the state can limit absolute autonomy by compelling positive acts that benefit others in particular circumstances (Mill,  2008; Lee, 2014). Public beneficence is the duty of a government to maximize public benefits and minimize public harm, and to promote activities that have great potential to improve the well-being of the population (PCSBI, 2010). In the case of some infectious diseases, the duty of public health professionals to minimize potential harm to the community can be in conflict with the potential economic or social harm that might result if private information about individuals is disclosed.
As the proportion of ill-health effects from infectious diseases declines and the impact of noncommunicable conditions increases, a population begins the epidemiologic transition. Public health professionals’ responsibilities begin to expand to encompass the prevention of chronic conditions, including injuries, and the role of social determinants as predictors of health outcomes. A shift in public health surveillance efforts toward the identification and tracking of social determinants of health—such as income inequity, poverty, and lack of access to quality education and affordable health care—prompts a shift in emphasis from secondary prevention to primary prevention. Primary prevention (preventing the onset of disease and disability, rather than diagnosis and treatment of disease) reduces costs, both fiscal and social, and improves the health and well-being of both individuals and communities (Maciosek et al., 2010).
A further epidemiologic shift occurs with advances in genetics, epigenetics, and the ability to identify predispositions to particular diseases or conditions. The public health response to this shift includes new approaches to prevention, with an emphasis on what has been described as “primordial prevention”—the use of policy and intersectional action to identify and address the far upstream factors that create biologic, social, economic, and environmental conditions that result in morbidity and mortality (Porta, 2008). The types of data that public health professionals need to collect in order to support primordial prevention are often associated with behaviors or genetic predispositions that some individuals and communities view as sensitive, since their collection might stigmatize groups or communities, revealing predispositions or behaviors leading to increased disease risks. From an ethics perspective, arguments for prevention are a matter of both utility and public beneficence.
The Values of Public Health
The values that motivate the collection, storage, and use of personal information for public health surveillance are based on values that motivate the field of public health more generally. While there is not a universally agreed upon list of values that make up our common professional morality in public health, several themes have emerged over the past quarter of a century of thought by leaders in public health ethics. These themes include justice, equity, respect for communities and individuals, evidence-based action, professionalism, transparency, public trust, interdependence, and collective action (Lee and Zarowsky, 2015; Lee, 2012), which has been explicated as solidarity (Dawson and Jennings, 2012) and communitarianism (Jennings, 2007). At times these public health values conflict. For example, respect for individual privacy (as a form of respect for persons) (p. 322) might conflict with advancing public health science (as a form of public beneficence) when public health professionals need to collect sensitive data to inform and support public health action. This value conflict arose at the beginning of the HIV/AIDS epidemic when public health officials needed to collect information about infected individuals’ sexual and drug use behaviors to better understand modes of transmission in order to prevent the spread of the virus.
Value conflicts also occur in noncommunicable disease surveillance. In 2005 the New York City Department of Health and Mental Hygiene proposed the establishment of a novel public health surveillance system—mandatory name-based laboratory reporting of A1C results (Chamany et al., 2009). (The A1C blood test provides information about a person’s glucose levels and can be used in diabetes management.) The goal of the system was to identify and link to care those suffering with uncontrolled diabetes, reflected by an A1C test result of more than 9 percent. The overarching goal of the effort was to address geographic disparities among city residents with inadequate access to health care, and to address an unjust distribution of poor outcomes. Under the proposal, the health department would follow up with both the ordering clinician and the patient when results indicated uncontrolled disease. Some opposed the proposal, however, noting that mandatory reporting was an infringement on individual liberty. Through a process of deliberate engagement via public comment, a pilot program that included public feedback, and critical discourse in the peer-reviewed literature, the city and the community ultimately agreed on a system that would balance the tension between these two conflicting values (Chamany et al., 2009).
Ethical Drivers for the Development and Implementation of Public Health Surveillance Systems
As a practical matter, integrating ethical considerations throughout the development and implementation of a public health surveillance system can help public health professionals anticipate and, in some cases, avoid ethical conflicts. Conflicts might still arise, but public health surveillance professionals who have articulated and attended to potential ethical considerations will be better prepared to address them. Ethical considerations ought to drive the development and implementation of each step of a public health surveillance system, from designing a system through the use and dissemination of information to improve the public’s health.
Public Health Surveillance System Design
Numerous factors can motivate the decision to develop and design a public health surveillance system for a particular condition of interest, including severity of disease or (p. 323) condition, years of productive life lost due to morbidity or mortality caused by a condition, communicability of a pathogen, cost of treating a condition, public interest, and even political motivations and availability of funding. But the ethical drivers of the surveillance system design rest on the governmental obligation to promote and protect the health of the population. Public health professionals should ensure that public health surveillance systems are developed—and their data used—for legitimate public health purposes only, and that, on balance, the benefits of adopting a system outweigh the risks (WHO, 2017). Benefits might include longer life, reduction in morbidity, improved productivity, and other socially valued outcomes. Risks might include potential harms to individuals or groups about whom private information is disclosed, or to groups about whom aggregated information might be shared. Privacy and confidentiality are critical ethical considerations for any public health data collection effort (Lee and Gostin, 2009), but they take on heightened significance for public health surveillance.
Public health surveillance systems often collect private information without individual consent, which is necessary for public health surveillance systems to provide complete coverage and equitable and just results. Given the necessary impingement on autonomy, public health professionals have learned the value of actively and intentionally engaging communities affected by a proposed public health surveillance system. Transparent engagement builds trust and includes articulation of the goals and benefits of the system, data to be collected and stored, potential risks and plans to mitigate these risks, and planned uses of individual-level and aggregated data. Public trust requires that public health professionals respectfully handle and use private, confidential public health surveillance data. Public health professionals use a variety of approaches to build trust and address potential value conflicts, including engaging affected communities in deliberations throughout all stages of a surveillance system and promoting professional ethics among the public health workforce to ensure professionals honor their contract with communities. Public engagement and deliberation were essential, for example, in the development of the national HIV infection reporting system in the United States. Throughout the 1990s, federal and state public health surveillance experts worked with affected communities—men who have sex with men, injection drug users, heterosexuals with partners at high risk—to outline the goals of the system and permitted uses of the data (Glynn, Lee, and McKenna, 2007).
Collection and Collation of Data
Collection and collation of high-quality, valid data is required to provide the best evidence, arrive at accurate conclusions, and meet the goals of any public health surveillance system. Data collected and collated for such systems are often sensitive and sometimes even incriminating. Given that obtaining informed consent is not always possible or desirable in population-based public health surveillance, public health professionals must be thoughtful about—and provide a publicly accessible justification for—collecting such data. Alternative ways to respect individual autonomy in the context of a public health surveillance system include collecting the minimum information necessary to (p. 324) achieve the public health goal and establishing privacy and security standards to ensure data are protected from intrusion during all phases of the system—starting with collection and collation.
Whether data are collected manually, electronically, or through both means, public health professionals must have access to and be required to use the tools necessary to access, record, transport, and store data safely and securely. Coded data collection forms, locking briefcases, encryption software, secure data transport protocols, secure networks, and physically and digitally secured storage servers are some of the ways that public health professionals maintain data security. It is incumbent on every public health professional to ensure that data collected without individual consent are not accessed by unauthorized persons or used for unauthorized purposes; unlike participants in research or in-person health surveys, individuals whose identifiable information is reported to public health surveillance systems have not been advised of the benefits, nor have they consented to the potential risks.
Patient privacy is becoming more difficult to maintain in the digital era. Confidentiality is at greater risk due to our increased connectedness through ubiquitous digital systems. The widespread erosion of the ability to keep personal information private affects all aspects of life and can be especially challenging when stigma and discrimination accompany a health condition. If confidential information from a public health surveillance system were to be disclosed, it could have devastating social and even financial consequences for individuals. Such disclosures would also dramatically diminish the public’s trust, reducing the ability of public health professionals to disrupt the transmission of communicable diseases or reduce morbidity and mortality of chronic conditions. In the United States, there have been very few documented disclosures of public health surveillance information, though the disclosure of patient identity by others is often misattributed to public health professionals (Enserink, 2015). Swift and severe consequences for inappropriate disclosure of private information are needed in all spheres, and are especially important for maintaining trust in public health.
In addition to respecting autonomy, a commitment to justice is foundational to the collection and collation of public health surveillance data. The principle of justice and a commitment to health equity require that surveillance systems be population-based, so that the public health actions proposed based on surveillance data available address the needs of all affected persons and communities. For example, collecting data from one group at risk of a particular disease and not from others at similar risk reduces both the utility of data collected and the success of any intervention directed at the disease in question. Often, special efforts are required to ensure that hidden or hard-to-reach populations are included in data collection efforts.
Analysis and Interpretation of Data
Embedded in the analysis and interpretation of public health surveillance data are two ethical considerations: professional integrity and public beneficence. Public health (p. 325) scientists are accountable to the public. They are professionally obligated to intellectual honesty and accuracy, including conducting valid analyses and interpreting results considering—and stating—limitations. The local, state, and national public health infrastructure, including public health agencies and associated organizations, is obligated to provide an environment in which integrity is fostered and best evidence is produced (IOM, 2002). Public health professionals also have a professional duty to produce public benefits. Their analysis and interpretation of public health surveillance data should promote community well-being and reveal health inequities to support effective interventions.
Use and Dissemination of Data
Once public health surveillance data are analyzed, public health officials ought to use the information in planning and implementing public health programs, as well as disseminate the information to relevant stakeholders through appropriate venues. Putting the public health surveillance data to use in promoting public health justifies the risks posed to individuals in the collection and storage of the data. Sharing resulting information with affected communities, policymakers, and public health interventionists honors transparency and increases the chance that positive change will be implemented. In some circumstances, however, dissemination of negative public health surveillance findings can introduce additional burden or bring potential harm to members of at-risk communities. To reduce such harms, stewards of public health surveillance data should consult with community members and advisors to plan the most beneficial use of surveillance data. For example, a discussion of findings with community leaders might lead to more beneficial action than releasing information in a news release or public report.
In some instances, sharing public health surveillance data across jurisdictional borders is required to protect communities and ensure equitable distribution of burden and benefits. As demonstrated by several international outbreaks of infectious diseases in the early twenty-first century, there are legitimate prudential and ethical justifications for sharing public health surveillance data within and across jurisdictions (PCSBI, 2015). The revised International Health Regulations (IHR), in effect since 2007, require that the 196 country signatories report data to the World Health Organization when authorities suspect a public health event of international concern (WHO, 2018). Sharing these public health surveillance data helps governments—whether local or national—fulfill their duty to promote and protect health. To ensure that jurisdictions also respect individuals and communities, data-sharing agreements should be in place and should include elements that require that data be shared and subsequently used for public health purposes only; that data disposition be clarified; and that the minimum information necessary be shared, preferably in aggregate. If it is necessary to share individual-level data, personally identifying information should be excluded if possible. In addition to respecting individuals when sharing data, concerns arise about the just distribution of benefits that result from data sharing. Officials in low- and middle-income countries fear that (p. 326) countries with more advanced laboratory and scientific capacity will use their data, including specimens, to develop technologies or public health approaches that only higher-income countries can afford. Justice requires an equitable distribution of burdens and benefits, and therefore data contributors are entitled to equitable benefits that result from data sharing. In the case of pandemic influenza, the World Health Organization’s Pandemic Influenza Preparedness Framework outlines this expectation (WHO, 2011).
Ethics and Advances in Public Health Surveillance
Several recent advances in technology and data science, as well as changing expectations of how public health surveillance can serve the public good, have implications for how public health professionals design and conduct ethical surveillance systems. Advances in digital technology, the role of public health in preparedness and response, and the inclusion of nonstate actors in the development of public health programs are changing the public health surveillance landscape.
New digital data collection and storage technologies are changing the way public health professionals collect, collate, disseminate, and share public health surveillance data. Increasingly, “big data”—stores of electronic information left behind from digital activity such as web searches, social media, electronic commerce and banking, and use of mobile applications—are serving as a source for public health surveillance (see “Navigating the Ethics of Big Data in Public Health,” this volume). While public health officials increasingly use these data stores to identify potential events of public health importance, the aggregation of multiple data sources itself is not a public health surveillance system: Big data initiatives generally do not meet the definition, noted above, of an “ongoing, systematic collection, analysis, and interpretation of health-related data with the a priori purpose of preventing or controlling disease or injury.” However, as a source for data collection and collation, big data can powerfully augment public health surveillance systems. Risks to privacy and confidentiality can increase as additional data sets are merged with surveillance records. Re-identification of individuals becomes easier as additional characteristics or personal data are added, even in the absence of names. It is critical for public health surveillance professionals to identify and address these risks and weigh whether the additional data are worth the increased risks to the security of the information.
In addition to taking advantage of big data as a data source for surveillance, public health professionals increasingly store data electronically and use web-connected (p. 327) computers for analysis and dissemination. The ethical concerns—individual privacy, data security, and misuse of data—are similar whether data are on paper or in digital format, but the tools to manage these risks are different. In place of coded paper forms and locked briefcases, tools such as state-of-the-art encryption software and password-restricted access protect data in many public health surveillance systems that use digital data collection. When public health surveillance professionals are planning a system, they must consider these digital risks and incorporate ways to minimize them.
Public Health Preparedness and Biosurveillance
Public health professionals have long been involved in preparedness for and response to natural and human-made disasters. After the September 11, 2001, terrorist attacks in the United States, however, investment in public health surveillance to enhance early warning of bioterrorism events surged. As a result, biosurveillance—the science and practice of managing health-related data for early warning of threats and detection of events, and the rapid characterization of an event so that action can be taken to mitigate adverse health effects (CDC, 2010)—became a priority. Biosurveillance incorporates components of public health surveillance, national security, and big data to create situation awareness. Public health surveillance is a key input to situation awareness, and the ethical components of data sharing apply. A common tension in sharing public health surveillance data with biosurveillance systems is that the latter’s focus on security often requires release of information from the system to other governmental agencies for non–public health purposes, which is counter to the ethical use of public health surveillance data and might impact public trust.
Public health surveillance is typically considered a public sector task and is conducted by public health professionals employed by local, state, or national governments (Rein, 2010). Although only governments can compel public health reporting, nongovernmental actors—including universities, charitable foundations, and private sector contractors—are often involved in the execution of one or more steps in a surveillance system. For example, a state or provincial government might mandate reporting of malignant tumors, but the resulting cancer surveillance registry might be run by and housed at a large academic medical center where many cancer cases are referred for treatment. In cases of private-public collaboration, ownership of and access to data are areas for potential ethical concern and should be fully addressed during the planning and contracting phases. Because nonstate actors act on behalf of the governmental public health surveillance system, all should be knowledgeable about and required to honor the ethical responsibilities that come with the creation and maintenance of a public (p. 328) health surveillance system. Professional ethics expectations (and consequences for noncompliance) apply to all persons who have contact with public health surveillance data.
Ethical Review of Public Health Surveillance Systems
As data sources for and potential uses of public health surveillance become more complex, some scholars have questioned whether formal ethical review and independent oversight of public health surveillance ought to be implemented (Fairchild and Bayer, 2004). However, other scholars and public health professionals have argued that public health surveillance is a standard activity of public health practice, and that designing and conducting it ethically falls under professional ethics of public health practitioners (Middaugh et al., 2004). Books and guidance on designing and conducting public health surveillance often address the profession’s expectations for the ethical conduct of public health surveillance (Lee et al., 2010). In January 2017, US regulations covering research with human participants (known as the Common Rule) were updated (with a 2019 effective date). The revised rules state that public health surveillance is excluded from oversight by institutional review boards (IRBs, elsewhere referred to as research ethics committees, or RECs), which are committees that review research activities to ensure the protection of human participants. The stated rationale for this exclusion in the revised rules is that
when a public health authority conducts public health surveillance activities to fulfill its legal mandate to protect and maintain the health and welfare of the populations it oversees, the regulatory protections of the Common Rule should not impede its ability to accomplish its mandated mission of promoting this recognized public good, in keeping with the principle of beneficence. Other protections independent of the Common Rule exist that serve to protect the rights and welfare of individuals participating in such activities, including privacy, confidentiality and security safeguards for the information collected.
(HHS, 2015, 53949)
The issue of whether public health surveillance systems ought to undergo review by an ethics board—similar to the way research protocols undergo IRB/REC review—or if ethical conduct of such systems ought to be included in the professional ethics standards for all of public health practice, remains unresolved. It is clear that public health surveillance systems must be ethically sound to be effective—to collect, store, and use the information necessary to promote health and prevent morbidity. It is also clear that these systems must be agile and responsive, qualities uncharacteristic of many overburdened ethics review processes. The unanswered question is whether professional ethics expectations and best practices of public health professionals are adequate to ensure the development and implementation of an ethically sound public health surveillance system, (p. 329) or if it is necessary to engage a responsive independent surveillance review board to provide approval and oversight.
For three centuries, public health surveillance has anchored and informed public health action. Population-based public health surveillance ensures that public health professionals can execute their duties to prevent morbidity and mortality, protect the health of communities, and reduce health inequities. These duties are motivated by a combination of liberal and collective ethical principles, such as justice, equity, respect for communities and individuals, evidence-based action, professionalism, transparency, public trust, interdependence, and collective action, including solidarity and communitarianism.
As public health professionals design and implement public health surveillance systems, ethical principles can come into conflict. These professionals must make decisions about how to move forward to meet their duties and respectfully honor commitments to the public. Decisions about the path forward depend on both the empirical information—including the severity of the health condition, the emergent nature of the threat, and the consequences of inaction—as well as moral duties to the public. Attention to and integration of ethical considerations throughout the development and implementation of public health surveillance systems will better prepare professionals to identify and address the inevitable ethical conflicts that arise.
The digital era has presented us with many new tools and technologies to improve both the quality and efficiency of public health surveillance. Regardless of the ways we obtain, store, and disseminate surveillance data, we do so to create the conditions that lead to healthy lives for all people. Engaging communities, developing and maintaining trust with the public, and deliberating together about how best to create these conditions will remain essential inputs into the development and conduct of successful and ethically acceptable public health surveillance systems for centuries to come.
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