Points to consider: Public disclosure of outbreaks and cases of infectious diseases

Developed by the Public Health Agency of Canada's Public Health Ethics Consultative Group

On this page

• Introduction
• Determining whether to disclose publicly the existence of an outbreak or cases, and how much information to disclose
• Determining how to disclose
• Procedural considerations
• Evaluation
• Appendix: Analysis of ethical considerations related to the public disclosure of surveillance data in the context of public health outbreaks

Introduction

The communication of risks to the health of the Canadian public is an essential aspect of outbreak response, as is the provision of advice about risk prevention. This document presents ethical considerations to reflect upon when establishing the appropriate balance between protecting the identity of individuals, communities, organizations, and businesses, and protecting the public's health through the public disclosure of information about cases of notifiable communicable diseases and outbreaks of these diseases. Underpinning these considerations is the understanding that decision-makers often work with incomplete and evolving information, and must consider and act upon the best evidence available at the time. The guiding values and principles include respect for persons and communities, the duty to act for the common good, the duty to minimise risk of harm (including physical, psychological, social, legal and economic harms), justice, trust, transparency, accountability and responsibility.

The approach to determining whether to disclose publicly an outbreak or cases in a community, organization or business, and how much information to disclose includes 3 components:

1. clarifying the objectives;
2. assessing the threat to health for individuals and for communities;
3. publicly disclosing information.

1. Clarifying the objectives

When considering whether to disclose publicly the existence of an outbreak or cases in a community, organization or business, or when determining how much information to disclose, it is important to define clearly the public health objectives of providing such information to the public.

• What are the public health objectives of the disclosure?
• What are the interests and objectives of the affected individuals, communities, organizations or businesses?
• What harms are we trying to avoid?
• What is the likelihood that the disclosure will achieve these objectives?

2. Assessing the threat to the health of the public

The assessment of the threat to the health of the public involves gathering and reviewing scientific evidence pertaining to the scope and nature of the threat.

• What is the potential public health impact of the outbreak or event?
• What is the scope of the outbreak or event?
  • Where is it occurring?
  • How many people are affected?
  • Are certain groups at higher risk?
• Is there a significant risk of spread?
  • What are the incidence and prevalence of infection in the population under consideration?
• How urgent is the threat to health?
• What is the duration of the threat to health?
• What is the gravity of the threat to health, if it materializes?
• Is the outbreak or event unusual or unexpected?

3. Publicly disclosing information

In most cases, disclosure will not be based on a single decision, but will encompass a series of decisions made over time.

In determining whether to publicly disclose the existence of an outbreak or cases in a community, organization or business, or when determining how much information to disclose, it is important to consider the potential benefits and harms of the disclosure. Providing information may promote trust, enable individuals and communities to take action to protect their health, and prevent the further spread of disease. However, public disclosure of information may also harm individuals, groups, communities, organizations or businesses. Any measure taken by public health authorities, including the disclosure of information that could identify individuals, groups, organizations or businesses, should be proportionate to the threat to health.

Identification and assessment of potential benefits, harms and options should be informed by community engagement.

Decisions should also foster consistency, so that groups are not selectively or differentially treated to avoid stigmatization and discrimination. If consistency cannot be accomplished, ethically defensible justifications should be provided for the differential treatment.

Determining whether to disclose publicly the existence of an outbreak or cases, and how much information to disclose

• What is the level of public understanding and concern about the outbreak?
• Do we have sufficient knowledge about the outbreak to communicate to the public?
• Can this information be communicated effectively to the public?
  • What does effective communication look like in this instance?
• What are the benefits and harms of publicly disclosing this information to the public (including physical, psychological, social, legal and economic harms to individuals, communities, organizations and businesses)?
• What measures will be taken to ensure that information is disclosed in a manner that prevents stigmatization and discrimination and that takes into consideration factors such as language barriers and ability status?
• Will the information help members of the public to understand their risk of infection?
• Will the information help members of the public identify steps they can take to avoid infection and, in light of their risk and risk to others, determine whether they wish to take such steps?
• Will the information help provincial, territorial or local health care service providers or communities to maintain the well-being of the population and effectively address risks and effects of infection?
• Could the information contribute to creating a sense of fear among members of the public, particularly if they feel that they do not have the ability to protect their health and that of others effectively?
• Could the public disclosure of the information jeopardize the protection of the privacy and confidentiality of individuals who contracted COVID-19 and, as a result, expose them to stigmatization, prejudice, discrimination, risk to their reputation, suffering or economic loss?
• Could the information, in particular demographic or geographic identifiers, organization or affiliation information, contribute to the stigmatization and discrimination of communities or groups of individuals, to loss of prestige or harm to reputation, to economic loss or to physical, psychological, and/or social suffering?
• Is it possible to achieve the public health goals without publicly disclosing information that could potentially identify individuals, communities, organizations and businesses?
• Will public disclosure of information decrease the likelihood of individuals', groups' or communities' compliance with testing, or with presenting for care?

Determining how to disclose

• Who has the authority to disclose the information to the public?
• Who will take the lead on disclosing the information (i.e. municipal, regional, provincial or federal medical health officers? Political representatives? At which level of government?)
  • Can they work with the affected individuals, communities or businesses to partner in the disclosure?
• Is the method, timing and detail of the public disclosure consistent with previously established practices?
  • Are the communities aware of these practices?

Once the decision has been made that data/information collected under the authorities of public health legislation should be disclosed publicly

• What other steps can public health authorities take to dispel misconceptions, interpret sensitive information and minimize risks to individuals, communities, groups, organizations and businesses?
• How can public health authorities tailor their message to help ensure that members of the public have a better understanding of the level of risk?
• How can we give the individuals, communities or businesses who will be identified, or risk being identified, advance warning?
• What is the possibility of appealing public health authorities' decision?

Procedural considerations

The decision-maker who publicly discloses the existence of an outbreak or cases must:

• have the authority to do so;
• recognize that the situation is dynamic, differentially impacts diverse groups of people, and make the decision based on the most-up-to-date and credible evidence;
• take responsibility for the decision; and,
• be prepared to revisit previous decisions based on evolving information (responsiveness).

Evaluation

Public health authorities should also evaluate the impact of the disclosure so that intentional and unintentional effects can be monitored, and lessons learned may inform future decisions.

Appendix: Analysis of ethical considerations related to the public disclosure of surveillance data in the context of public health outbreaks

1. Guiding principles

The core ethical dimensions set out in the Framework for Ethical Deliberation and Decision-Making in Public Health ^{Note de bas de page 1} and the ethical values and principles set out in the Public Health Ethics Framework: A Guide for Use in Response to the COVID-19 Pandemic in Canada^{Note de bas de page 2} provide valuable guidance for addressing these issues. The following are of particular relevance:

• respect for persons and communities, which entails recognition that all persons have unconditional worth and, as such, are due consideration and respect. Respect for persons also includes respect for autonomy, i.e. acknowledging people's capacity and interest in making choices about their own destiny. Respect for communities involves having concern for the potential stigmatization of groups or communities, and for the welfare of future generations;
• beneficence, or the duty of public health authorities to act for the welfare of persons and the population;
• non-maleficence, which entails an obligation to avoid causing harm to others or to minimize risk of harm so that any harms, and the risk that they may occur, are lesser in proportion to the benefits being pursued and the need addressed;
• justice, which refers to the obligation to treat people with equal concern and respect, and to minimize as much as possible inequities in the distribution of burdens and benefits linked to the public health initiative;
• trust, or the faith and confidence that individuals, groups and the public have in public health institutions, in particular their reliability, integrity, and good will;
• transparency, which refers to operating in such a way that stakeholders know, in a full, accurate and timely manner, what decisions are being made, why and what criteria were applied. Transparency and truthfulness help to build the trust that is essential to the success of public health initiatives;
• accountability and responsibility, which refer to an organization, group or individual being answerable and accountable to others for the type and quality of decisions made.

The WHO guidelines on ethical issues in public health surveillance ^{Note de bas de page 3} identify four ethical considerations that are of particular importance for public health surveillance:

• common good: "surveillance is justified, fundamentally, as a requirement for the good of all." ^{Note de bas de page 4}
• equity: "Public health surveillance can further the pursuit of equity by identifying the particular problems of disadvantaged populations […] and identifying the basis of unfair differences in health." ^{Note de bas de page 5}
• respect for persons: "Undertaking public health surveillance is, itself, arguably an expression of respect for persons. This further requires ensuring that data about individuals and groups are protected and risks of harm are minimized to the greatest possible extent." ^{Note de bas de page 6}
• good governance is subject to a number of ethical considerations, namely accountability, transparency and community engagement. ^{Note de bas de page 7}

2. Public health goals of public disclosure of information

As part of the response to COVID-19, data about cases are collected, analysed, interpreted and integrated into various surveillance products, and then disseminated to inform public health action. ^{Note de bas de page 8} The first step in determining what is the appropriate balance between various interests (including the demand for information about COVID-19 cases, privacy, and prevention of stigmatization), is to clarify the public health goals of public disclosure of surveillance information. The public disclosure of surveillance information about COVID-19 outbreaks or cases to members of the public can serve to:

• help members of the public understand the level of risk posed by COVID-19 so that they can make informed decisions and take steps to protect themselves and others against infection;
• demonstrate transparency by sharing with the public information related to SARS-CoV-2 and COVID-19 cases that public health authorities have collected; and
• build trust, by demonstrating that public health authorities are conducting their surveillance and response activities with due diligence.

The question therefore arises, what is the likelihood that publicly disclosing outbreaks in specific communities or organizations, or including certain elements of information in surveillance reports will achieve these goals? The resulting transparency may contribute to the public's trust in public health authorities and in their ability to fulfill their mandate to protect the population's health. However, the assessment of the impact of information disclosure on people's ability to protect their health and that of others will be different for each element of information under consideration.

3. Ethical considerations related to public disclosure of information

3.1 The value of information

An essential element of surveillance, tied to its social value and its purpose, is the dissemination of its results to those who need to know in order to take necessary action or implement response measures. ^{Note de bas de page 9} Indeed, Guideline 13 of the WHO guidelines on ethical issues in public health surveillance states that: "[r]esults of surveillance must be effectively communicated to relevant target audiences." ^{Note de bas de page 10} The relevant target audiences can include community officials, public health organizations, health care providers, policy makers, members of a community and the public.

The principles of respect for persons, respect for autonomy and beneficence support the argument that public health authorities should provide to the public as much information as needed in order to enable individuals to make informed decisions about the risks to which they are willing to expose themselves, and the steps they may want to take to protect their health as well as that of others likely to be affected by their actions.

Communities and members of the public may want to have access to considerable information in order to understand a threat to their health, identify where it is coming from, and eliminate or minimise risks to their health as much as possible. This desire for information does not equate a need or a right to access to information. While individuals and communities may assert a right to self-determination and to health protection, such rights are not absolute and may collide with the rights of individuals to privacy as well as affected communities' interests in protection against injury, discrimination and stigmatization.

Public health authorities have the power to collect and disclose information without consent in order to fulfill their responsibilities for health protection, notably in the context of infectious disease control and prevention. In doing so, they must exercise good judgement and remain accountable to the public. Overriding individuals' and specific communities' rights and interests is justifiable only when there is a serious public health risk and the provision of information helps to protect the public's health. ^{Note de bas de page 11} The WHO guidelines on ethical issues in public health surveillance state that: "[e]thical frameworks for sharing [data] should respect persons by ensuring that only the data required to fulfill a sufficiently important, legitimate public health purpose are shared, that data are not shared more broadly than necessary […]." ^{Note de bas de page 12} The determination whether to disclose publicly an outbreak in a community or organization or to include specific elements of information therefore should be guided by considerations related to the potential impact of these elements of information for the public's health.

The value of information also resides in the fact that it helps to build trust in public health organizations, an element that is essential to the success of public health initiatives. Public trust depends on the perception that public health authorities are being truthful, are not hiding valuable information about risks to health, and are providing sufficient information to enable members of the public to protect their health. Nonetheless, achieving trust with some members of society should never be at the cost of the fundamental interests of other members.

In the current pandemic, public authorities' messages are subject to considerable competition from other sources of information, misinformation and disinformation. These include social media and other online sources. In this context, it is highly likely that any void left by public authorities, will be filled by others. Public health authorities must therefore weigh these considerations when determining whether to disclose information to the public, how much information to provide and how to present it to the media and the broader public in a manner that minimises risk of harm. A key question is whether disclosure of the information will contribute to public confidence in the accuracy and positive value of surveillance and reporting systems.

3.2 Avoiding or minimizing risk of harm

Public health surveillance and the disclosure information about outbreaks or cases are clearly justified by appealing to the notion of the common good. The principles of nonmaleficence, respect for persons and communities, and justice require that decision-makers take into account the potential risks or burdens associated with the provision of specific elements of information to the public, and take steps to avoid or to minimize these burdens and risks of harm. As the WHO notes, "on the one hand, knowledge may clearly empower; on the other, it may lead to injury, stigmatization or discrimination." ^{Note de bas de page 13} Public health authorities should therefore carefully consider the risks of harm to individuals and communities. ^{Note de bas de page 14}

Many characteristics of the current COVID-19 pandemic are a source of concern in this regard:

• knowledge about SARS-CoV-2 and COVID-19, including its transmission, has evolved over time and continues to do so;
• COVID-19 can have serious consequences for the health of persons who have contracted COVID-19;
• the efficacy of preventive interventions is uncertain; and
• public health response measures vary across jurisdictions and are the subject of public debate and criticism.

This considerable uncertainty and evolving knowledge can undermine confidence in science, in its application, and in the actions of public health authorities who rely on science advice. Moreover, the duration of restrictive response measures is such that the impact on the physical, mental, social and economic well-being of many is considerable. Under these circumstances, there is a possibility that the public disclosure of certain elements of information could contribute to exposing individuals or groups to risk of harm, particularly if individuals or groups could be perceived, wrongly, as being responsible for spreading COVID-19 in a community.

Potential harms associated with the public disclosure of outbreaks or cases could be minimised by providing individuals, groups or communities advance warning of the disclosure so that they are prepared, and can take measures to avoid stigmatization. Having the possibility to appeal the public health authority's decision before the disclosure or at least to participate in decisions about the method and timing of disclosure, could also serve to mitigate risk of harm and lessen burden or perceived burden.

In order to consider proactively public health need and potential risks of harm to specific groups or communities, it is important to engage with the affected communities, throughout the development and implementation of a public health intervention. Community engagement helps build trust, thereby improving the chances of success of public health interventions. It also provides a means of identifying specific needs, interests, concerns regarding the public health response (including the public disclosure of information), and possible alternative approaches for achieving public health goals. To this end, where the public disclosure of information is likely to give rise to a risk of stigmatization of certain groups, working with these groups in order to devise communications strategies likely to attenuate this risk should be considered.

3.3 Selecting less intrusive means

In addition to considering the potential risks and benefits of the public disclosure of specific elements of information, it is important to consider whether less intrusive measures or alternative approaches could be used to mitigate risks, address potential concerns and achieve the stated public health goals. This may include not disclosing information that could potentially identify individuals, groups or communities unless absolutely necessary. It may also include identifying other steps that could be taken to dispel misconceptions, help interpret sensitive information and minimise risks to communities, groups or individuals.

3.4 The value of transparency and consistency

Transparency and consistency in decision-making help to promote trust in the public health response to COVID-19. Consistency in decision-making is also important as it reflects the value of equality and demonstrates equal respect for diverse groups of people and communities. In the context of the public disclosure about outbreaks or cases, public health authorities should set out clear principles about the information that they will report, how it will be reported, and by whom. Having consistent practices with regard to all three elements may reduce the risk of stigmatization and discrimination. Consistency across the various levels of government and the different jurisdictions, though challenging, also promotes trust.