The World Health Organization, Public Health Ethics, and Surveillance: Essential Architecture for Social Well-Being

Disease surveillance has been a core function of public health since the late 19th century. It is the foundation for programs to promote human well-being at the population level. Surveillance is the bedrock of outbreak and epidemic response, but it reaches far beyond infectious diseases.¹ It can contribute to reducing inequalities; pockets of suffering that are unfair, unjust, and preventable cannot be addressed if they are not first made visible. Surveillance is central to understanding the increasing global burden of noncommunicable conditions. By helping to determine patterns and causes of morbidity and mortality, it can help guarantee access to safe food, clean water, pure air, and healthy environments. Continuous environmental surveillance may both identify issues of concern and trigger alerts. Occupational disease surveillance can identify workplace exposures and lead to protective regulation. Surveillance information is vital as a tool for policy, advocacy, and accountability when the results are shared with populations and policymakers in a timely, appropriate manner. By revealing the relative burden of different diseases, for example, surveillance can play a key role in decision-making regarding allocation of health and research resources.²

In June 2017, the World Health Organization (WHO) issued “Guidelines on Ethical Issues in Public Health Surveillance”³ (see the box on the next page). This is the first document to address the challenge of surveillance on a global stage and the first set of international guidelines in which the ethics of public health, rather than (bio)medical ethics, serves as a normative framework.⁴

World Health Organization Guidelines on Ethical Issues in Public Health Surveillance

Guideline 1	Countries have an obligation to develop appropriate, feasible, sustainable public health surveillance systems. Surveillance systems should have a clear purpose and a plan for data collection, analysis, use, and dissemination based on relevant public health priorities.
Guideline 2	Countries have an obligation to develop appropriate, effective mechanisms to ensure ethical surveillance.
Guideline 3	Surveillance data should be collected only for a legitimate public health purpose.
Guideline 4	Countries have an obligation to ensure that the data collected are of sufficient quality, including being timely, reliable, and valid, to achieve public health goals.
Guideline 5	Planning for public health surveillance should be guided by transparent governmental priority setting.
Guideline 6	The global community has an obligation to support countries that lack adequate resources to undertake surveillance.
Guideline 7	The values and concerns of communities should be taken into account in planning, implementing, and using data from surveillance.
Guideline 8	Those responsible for surveillance should identify, evaluate, minimize, and disclose risks for harm before surveillance is conducted. Monitoring for harm should be continuous, and when any is identified, appropriate action should be taken to mitigate it.
Guideline 9	Surveillance of individuals or groups who are particularly susceptible to disease, harm, or injustice is critical and demands careful scrutiny to avoid the imposition of unnecessary additional burdens.
Guideline 10	Governments and others who hold surveillance data must ensure that identifiable data are appropriately secured.
Guideline 11	Under certain circumstances, the collection of names or identifiable data is justified.
Guideline 12	Individuals have an obligation to contribute to surveillance when reliable, valid, complete data sets are required and relevant protection is in place. Under these circumstances, informed consent is not ethically required.
Guideline 13	Results of surveillance must be effectively communicated to relevant target audiences.
Guideline 14	With appropriate safeguards and justification, those responsible for public health surveillance have an obligation to share the data with other national and international public health agencies.
Guideline 15	During a public health emergency, it is imperative that all parties involved in surveillance share data in a timely fashion.
Guideline 16	With appropriate justification and safeguards, public health agencies may use or share surveillance data for research purposes.
Guideline 17	Personally identifiable surveillance data should not be shared with agencies that are likely to use them to take action against individuals or for uses unrelated to public health.

“NO MORE THAN MINIMAL”

Landmark research ethics documents created in the wake of World War II, in a world keenly alert to the egregious harm inflicted on individuals coerced into clinical research, prioritized individual self-determination and emphasized the ethical importance of voluntary informed consent for participation in research. Mirroring these national and international codes and guidelines, autonomy assumed a place of singular importance in the theory and practice of both research and clinical ethics.

Public health surveillance largely fell outside of the scope of research ethics frameworks, although epidemiological research became a topic of contention. It was only in 1991 that the Council for International Organizations of Medical Sciences (CIOMS) issued new guidelines for epidemiological research that made clear that studies involving data analysis for large populations did not pose the same risks as clinical drug trials and therefore should not be subject to the same limits or requirements. The tradition that developed was one in which research ethics committees could waive a requirement for informed consent when the risk posed by epidemiological research was “no more than minimal” and obtaining consent would make the research “impracticable” (https://www.ufrgs.br/bioetica/cioms2008.pdf).

But even as efforts were made to loosen the constraints for population-based epidemiological inquiry, some argued that public health surveillance ought to go through the same process of ethical review required of any research activity. Nevertheless, CIOMS and the United Kingdom’s Nuffield Council on Bioethics acknowledged that public health surveillance had to be treated as an activity that stood apart from both clinical and epidemiological research.⁵ But beyond broad recognition and a critical but scattered academic literature, there remained a yawning void when it came to concrete guidance on the ethics of surveillance. ⁶

PRIVACY AND OTHER CIVIL LIBERTIES

Public health surveillance may limit not only privacy but also other civil liberties. For example, surveillance may trigger mandatory quarantine, isolation, or seizure of property during an epidemic. When surveillance involves reporting names and other identifying information, such as addresses, to government agencies, it can—to the extent that populations are even aware that surveillance is occurring—trigger profound concern about intrusions on privacy, discrimination, and stigmatization. Concerns are compounded when there is a lack of trust that the public health system will keep names secure or will release aggregated data and related information in a sensitive manner.

But as often as surveillance has triggered sometimes bitter public debate, the failure to conduct public health surveillance has generated political and ethical controversy because of concern that “what doesn’t get counted doesn’t count.” Environmental and occupational health advocates, for example, have long made this argument. The 2014 to 2016 Ebola virus crisis dramatically underscored the potentially devastating consequences when nations lack the capacity to monitor the incidence and spread of disease.⁷ An effective public health or clinical response can be seriously hampered by the absence of such data. Many other occupational and environmental diseases—such as asthma, silicosis, and conditions related to exposure to arsenic or lead—go uncounted in both high- and low-income countries.

PUBLIC HEALTH ETHICS

Public health ethics emerged as a distinct field over the past 20 years as it grappled with these kinds of issues. Values such as autonomy, privacy, and individual rights and liberties, although still important, were not the lodestars of public health ethics. More “social” or “public” values—reflected in overlapping concepts like solidarity, reciprocity, and stewardship—captured the broad importance of community and the affirmative duty to take action in the name of population well-being.

It is against this backdrop that WHO developed comprehensive international guidelines that justify and promote public health surveillance. The WHO guidelines, which we played a role in formulating as part of a multidisciplinary global team, most fundamentally establish that countries have an obligation not only to develop and sustain surveillance systems but to act on those data to improve population health. All individuals in a population are likely to benefit from surveillance programs and therefore have a reciprocal obligation to contribute to surveillance and promote the common good. In contrast to research ethics, informed consent is not the touchstone of public health surveillance ethics.

OBLIGATION AND PROTECTIONS

Although surveillance is framed as an obligation of all nations, states are likewise duty bound to protect the subjects of surveillance. The guidelines are unambiguous in demanding that nations must continually monitor for surveillance-related harm. Nations must involve populations in decision-making—heeding the needs and concerns of those at heightened susceptibility to disease, injury, stigma, and discrimination—in a transparent, accountable fashion. And those responsible for surveillance must share the results of surveillance with the communities that have been studied. Without clear communication of results, it is not possible to use surveillance data for either public health policy or advocacy.

Although the inaugural WHO guidelines on public health surveillance most fundamentally represent a call to action, it is not a call to unrestrained action. The state is a source of both intrusion and protection. On the one hand, surveillance makes some disease burdens visible and therefore interventions to address inequities possible. On the other hand, surveillance may be used to impose additional burdens—such as stigmatization, loss of employment, even criminalization—on those who are already disadvantaged.

The only assurance that surveillance will amount to neither privilege nor punishment is attention to the ethical considerations unique to public health; public health surveillance requires a sustainable, practical oversight mechanism to ensure that the burdens and benefits of surveillance are critically weighed and then fairly distributed in a transparent manner in which states are held accountable. The task ahead will be for nations, agencies, and organizations to determine what meaningful oversight mechanisms—that do not pose obstacles to public health surveillance—must look like.

But WHO has made the ethical bottom line clear: public health surveillance, conducted in a manner that anticipates ethical challenges and proactively seeks to reduce unnecessary risks, provides the essential architecture for social well-being.