Human Rights Implications of Governance Responses to Public Health Emergencies: The Case of Major Infectious Disease Outbreaks

Chapter 35

Human Rights Implications of Governance Responses to Public Health Emergencies: The Case of Major Infectious Disease Outbreaks

Gian Luca Burci and Riikka Koskenmäki

Introduction

At the Fiftieth Anniversary of the Universal Declaration of Human Rights in December 1998, the Director-General of the World Health Organization (WHO) stated that “health security is a notion which encompasses many of the rights enlisted in the [Universal] Declaration”, including the right “to live and work in an environment where known health risks are controlled”.¹ Only a few years later, the multi-country outbreak of severe acute respiratory syndrome (SARS) in 2003, and the looming possibility of a catastrophic outbreak of pandemic influenza, prompted unprecedented attention to the threat of worldwide spread of emerging and re-emerging infectious diseases. These developments underlined the fact that an individual’s health security must be founded upon global health security.²

The rapid international spread of SARS highlighted the insufficiency of domestic measures to tackle diseases that recognize no borders.³ It also revealed the lack of preparedness of many countries, both developed and developing, to address large-scale public health emergencies.⁴ Increased recognition of the need for an effective international prevention and control mechanism led to the revision of the WHO International Health Regulations (IHR) in 2005.⁵ The IHR are the key international legal instrument designed to help protect all states from international public health risks and emergencies.

This chapter discusses human rights implications of selected governance responses, at both national and international levels, to public health emergencies. It focuses on major infectious disease outbreaks with potential to spread internationally, and on the IHR as the main international instrument for their control. While multiple state and non-state actors may be involved in responses to public health emergencies, this discussion focuses on responses by states at the national and international levels.

International human rights bodies and scholars have studied the limitations that can be imposed on the rights and freedoms of individuals for the purpose of controlling infectious diseases.⁶ There has not been a comparable level of scrutiny regarding the impact of national and international disease prevention and control measures on the right to the highest attainable standard of health (hereafter “the right to health”).⁷ This chapter seeks to further understanding of such impact and links. For the purpose of this contribution, we will use as a normative reference for the right to health Article 12 of the International Covenant on Economic, Social and Cultural Rights (ICESCR),⁸ as clarified by the Committee on Economic, Social and Cultural Rights in its General Comment No. 14 of 4 July 2000 (hereafter “General Comment”).⁹

Human Rights Implications of Governments’ Responses at the National Level

States have the duty to take measures to prevent and control epidemic and endemic diseases. This obligation exists under Article 12 of the ICESCR, as a step to achieve the full realization of the right to health, as well as under the IHR.¹⁰ Disease control requires epidemiological surveillance, implementation of immunization programs and other disease control strategies, including pharmaceutical and non-pharmaceutical interventions during outbreaks. In addition to activities at the national level, disease control requires cooperation with other states and international agencies.¹¹

Preparing for public health threats of unknown origin, such as SARS or Ebola hemorrhagic fever, is however particularly challenging since pharmaceutical interventions may not be available, at least during the first stages of the outbreak. Even when medication is available, states may face difficult questions such as ensuring access to treatment and prioritizing scarce resources in the face of widespread and acute needs of their populations. Non-pharmaceutical interventions, mostly applied in health emergencies where medication is not available (e.g., during the SARS outbreak) include testing and screening; notification and reporting of cases; mandatory medical examinations; social distancing;¹² isolation of persons with infectious conditions; and contact tracing and quarantine of persons who have been exposed to a public health risk.¹³

The widespread use of these measures during the SARS outbreak¹⁴ and related advice by WHO,¹⁵ drew renewed attention to the challenge of striking the proper balance between the protection of public health on the one hand and respect for individual rights and freedoms on the other.¹⁶ It is well established that states are entitled to limit the exercise of certain human rights, or to derogate from some of their human rights obligations in particular circumstances. In serious communicable disease outbreaks, for example, states are permitted to apply health measures that may “limit” or “restrict” the right to freedom of movement (in case of isolation or quarantine), the right to physical integrity (in case of compulsory testing, screening, examination and treatment), or the right to privacy (in case of compulsory contact tracing or patient retrieval), under certain conditions.¹⁷ The Siracusa Principles provide guidance concerning the question of when interference with human rights may be justified in order to achieve a public health goal. The Principles make clear that any limitation must be provided for by law and carried out in accordance with law; serve a legitimate aim and be strictly necessary to achieve that aim; be the least restrictive and intrusive means available; and not be arbitrary or discriminatory in the way it is imposed or applied.¹⁸

The burden of proof for assessing the legality and justifiability of measures limiting human rights for a common good normally falls on those who impose such restrictions.¹⁹ State practice of resorting to such measures during the SARS outbreak makes an interesting study for assessing whether the above-mentioned human rights framework was actually followed. D. P. Fidler has noted that measures taken by states differed significantly, even in similar circumstances. While some states used compulsory and tightly monitored isolation and quarantine measures, others, by contrast, relied more on voluntary measures or no such measures at all.²⁰ These differences in policy, which may in part be explained by different factual circumstances, including the scientific knowledge available, as well as cultural and social contexts, raise questions concerning the application to the measures in question of the International Covenant on Civil and Political Rights (ICCPR), or comparable regional instruments, as well as the interpretive guidance contained in the Siracusa Principles. In particular, the question of whether such normative frameworks provide sufficient guidance on these complex issues is of central importance.

One of the important lessons of the SARS outbreak is the need for health emergency preparedness, including relevant legislation, policies, plans and programs, in line with human rights law.²¹ All such strategies should be established and implemented through transparent and accountable processes, as the active and informed participation of individuals and communities in decision-making that bears upon their health is part of the right to health.²² The strategies should address the rights of those affected and pay particular attention to the needs of the most vulnerable groups. For example, legal authority for quarantine and isolation, including that of recalcitrant individuals, needs to be established with clear criteria, including scientific assessment of public health risk and effectiveness of envisaged measures, due process guarantees and use of the least restrictive alternatives.²³ Legislation is also needed for protecting privacy in different contexts, for due process requirements and compensation when infected property may need to be destroyed, and for ensuring non-discriminatory practices and equal treatment, among other things. The strategies should also ensure that individuals can access a full range of information on health issues affecting themselves and their communities.²⁴ The enactment of such policies, plans and legislation are essential tools for a balanced and accountable implementation of the right to health.²⁵

Another important lesson from the SARS outbreak is the crucial role of well functioning national health systems for the control of epidemic diseases, capable of providing urgent medical care and relief.²⁶ Ensuring equitable access to health facilities, goods and services is essential for implementing the right to health but remains a challenge for many states, even in the absence of particular health emergencies.²⁷ Strengthening of health systems should thus be a high priority and based, according to the UN Special Rapporteur on the right to health, on a right-to-health approach.²⁸ The implementation of the core capacity requirements under the IHR provides an opportunity to reinforce work on surveillance and response capacities of health systems.²⁹

Human Rights Implications of the Who International Health Regulations

The IHR were initially adopted by the World Health Assembly in 1951,³⁰ and revised several times thereafter. They represent the culmination of a process of international cooperation begun in the mid-nineteenth century, which WHO was expected to continue and rationalize through centralized collective decision-making.³¹ Under the WHO Constitution, regulations become legally binding for all member states unless they opt-out by a certain deadline.³² This process and the constitutional basis of their legal effects make WHO regulations innovative international instruments, meant to address urgent regulatory needs in crucial public health areas.³³

The IHR became progressively marginalized during the 1980s and 1990s, in particular since they were based on a number of assumptions that were overtaken by the development of public health and international law during that period.³⁴ The revision of the IHR languished, however, until 2003 when the collective scare caused by SARS and pandemic influenza made revision a top priority for the Organization. The World Health Assembly eventually adopted the revised IHR in May 2005 and they entered into force in June 2007. The IHR have 194 States Parties—the entire membership of WHO plus the Holy See—making them a truly global instrument.³⁵

The IHR, as revised in 2005, are a complex and innovative instrument that opens a new era in international health law. The main features of the revised IHR include:

1. Expanded scope to address virtually all urgent and serious public health risks, regardless of origin or source, that might be transmissible across international borders—whether by travellers, trade, transportation or the environment. The IHR’s scope of application goes well beyond the natural spread of infectious diseases, abandoning almost completely the approach based on a finite list of diseases. The IHR is consequently applicable to the public health aspects of diseases from biological, chemical or radionuclear sources, including in case of deliberate release of such agents;³⁶
   
2. Detailed obligations requiring States Parties to develop national capacities for the surveillance of, and response to, diseases and events falling under the IHR and to report them to WHO;³⁷
   
3. The central role of WHO in interacting with States Parties, providing information and supporting their prevention and control activities. In this context, WHO may rely on information obtained from nongovernmental sources, as provided in the Regulations;³⁸
   
4. The Director-General of WHO may under certain circumstances determine that an event constitutes a “public health emergency of international concern” and issue temporary recommendations to respond to it, thus guiding the international response to grave public health risks as in the case of SARS.³⁹ The dramatic expansion of the scope and application of the IHR raises delicate issues as to their interaction with many other international rules, from trade and transportation to environmental protection and nuclear incidents.⁴⁰