79C3C34C52B45572883A05D425EB0F82

WHO Guidelines on Ethical Issues in Public Health Surveillance

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Indicators in focus are typically shown highlighted in yellow;

Peer Indicators (that share the same Vulnerability association) are shown highlighted in pink;

"Outside" Indicators (those that do NOT share the same Vulnerability association) are shown highlighted in green;

Trigger Words/Phrases are shown highlighted in gray.

Link to Orphaned Trigger Words (Appendix (Indicator List, Indicator Peers, Trigger Words, Type/Vulnerability/Indicator Overlay)

Applicable Type / Vulnerability / Indicator Overlay for this Input

Vulnerability Type	Vulnerability	Indicator	# Matches
Political	Refugee Status	refugee	1
Political	criminal	criminal	1
Political	migrant	migrant	1
Political	person under arrest	arrest	1
Political	political affiliation	party	3
Political	political affiliation	political	9
Political	stateless persons	nation	3
Political	vulnerable	vulnerable	5
Political	vulnerable	vulnerability	5
Health	Drug Usage	drug	8
Health	Drug Usage	substance	2
Health	HIV/AIDS	HIV	19
Health	HIV/AIDS	hiv/aids	0
Health	Healthy People	volunteers	1
Health	Physically Ill	sick	3
Health	patients in emergency situations	emergencies	6
Health	substance use	substance use	1
Health	visual impairment	blind	1
Health	visual impairment	blinded	1
Social	Access to Social Goods	access	17
Social	Age	age	3
Social	Child	children	3
Social	Incarcerated	liberty	2
Social	Linguistic Proficiency	language	3
Social	Marital Status	single	1
Social	Presence of Coercion	coerced	1
Social	Property Ownership	home	3
Social	Property Ownership	property	4
Social	Religion	faith	1
Social	Student	student	1
Social	Threat of Stigma	stigma	3
Social	Threat of Stigma	threat	2
Social	Threat of Stigma	stigmatization	6
Social	Threat of Stigma	stigmatized	1
Social	Threat of Violence	violence	2
Social	Victim of Abuse	trauma	1
Social	Victim of Abuse	abuse	1
Social	education	educational	1
Social	gender	gender	1
Social	parents	parent	1
Social	philosophical differences/differences of opinion	opinion	2
Social	philosophical differences/differences of opinion	philosophy	1
Social	sex worker	sex workers	1
Economic	Economic/Poverty	poor	1
Economic	Economic/Poverty	poverty	1
Economic	Economic/Poverty	low-income	1
General/Other	Impaired Autonomy	autonomy	4
General/Other	Public Emergency	emergency	9
General/Other	cioms guidelines	cioms	9
General/Other	tri-council policy statement	tri-council	1

Political / Refugee Status

Searching for indicator refugee:

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p.000035: problems. Responsible authorities should make special efforts to ensure that these populations are
p.000035: included in surveillance in ways that will empower them. How exactly situations of vulnerability should be
p.000035: deﬁned is a subject of dispute in the literature (74). Vulnerability may be diffuse, affecting large
p.000035: communities with limited economic develop- ment, limited access to health care facilities, educational
p.000035: deprivation, occupational risks or wider disadvantages in society. Public health surveillance and health
p.000035: information systems can provide valuable information to aid the development of health programmes and ser-
p.000035: vices to address their health problems and the underlying determinants of health, such as clean water, food
p.000035: security, or gender equality. To promote equity, surveillance should focus on the speciﬁc problems of these
p.000035: vulnerable communities.
p.000035:
p.000035: People with particular susceptibility to disease, harm or injustice are also at increased risk for further
p.000035: burdens, such as discrimination and stigma, attributable to surveillance activities or ﬁndings. For
p.000035: example, refugee groups and undocumented migrants with a higher disease burden may be seen, wrongly, as the cause of
p.000035: disease outbreaks. Similarly, workers with an occupational disease, such as silicosis, who lack access
p.000035: to adequate legal support may
p.000035:
p.000035: be dismissed from work rather than receiving treatment or compensation. Wherever pos- sible, susceptible
p.000035: groups should be identiﬁed before surveillance activities begin in order to minimize the risk for harm. In
p.000035: surveillance pro- grammes, there should be constant monitor- ing for (further) harm to those in conditions of
p.000035: particular vulnerability. When harm does occur, a mitigation strategy should be put in place (see Guideline 8).
p.000035:
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p.000035: The HIV oral test on a brothel bed in Belém do Pará, Brazil.
p.000035: Source: Laura Murray
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p.000035:
p.000036: 36
p.000036: Guidelines
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p.000036:
p.000036:
p.000036: Guideline 10. Governments and others who hold surveillance data must ensure that identiﬁable data are appropriately
p.000036: secured.
p.000036:
...

Political / criminal

Searching for indicator criminal:

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p.000021: outbreaks, framed as they were by concern for groups in conditions of tremendous vulner- ability and the ways
p.000021: in which outbreaks can become crises, further ampliﬁed by fear and distrust, places greater emphasis on
p.000021: human rights. Given the need to make decisions in
p.000021:
p.000022: 22
p.000022: Framing the ethics of surveillance
p.000022:
p.000022:
p.000022:
p.000022: the face of uncertainty, they also stress utility, proportionality and efﬁcacy.
p.000022:
p.000022: The ethical considerations outlined above and repeated and ampliﬁed in the guidelines that follow are, in the
p.000022: estimation of this commit- tee, central to justiﬁcation of surveillance as a core activity, beyond outbreaks
p.000022: or infectious disease situations. They must be applied in situations that may vary in fundamental ways. The
p.000022: guidelines recognize that trade-offs of values are sometimes inevitable. The local tra- ditions and
p.000022: priorities in countries may some- times result in a different balance between competing values and
p.000022: priorities. It is important to stress, however, that not all trade-offs are morally acceptable. Local, national,
p.000022: or regional circumstances may be characterized by gross injustice or violations of human rights. In these
p.000022: contexts, rather than serving the common good, public health surveillance may be used as an
p.000022: instrument for violation of respect for persons, equity, and justice. In countries where sex work is a
p.000022: criminal offense, for example, HIV surveillance can be used for oppression.
p.000022: Likewise, an occupational disease surveil- lance system that results in routine dismissal of workers
p.000022: affected by silicosis, black lung, or asbestosis would be unacceptable. Appeal to “trade-offs” under such
p.000022: circumstances could well be a pretext for further oppression and should be guarded against.
p.000022:
p.000022: The State is a source of both intrusion and protection. Some disease burdens and forms of health
p.000022: oppression simply cannot be made visible without State-sponsored surveillance (50). On the one hand,
p.000022: surveillance makes public health interventions to address inequi- ties possible. On the other hand,
p.000022: surveillance may be used to impose additional burdens on those who are already disadvantaged. The only assurance
p.000022: that surveillance will amount to neither privilege nor punishment is atten- tion to the ethical
p.000022: considerations described above: both burdens and beneﬁts should be critically weighed and then fairly
p.000022: distributed in a transparent manner in which States are held accountable.
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p.000022:
p.000022: Framing the ethics of surveillance
p.000023: 23
p.000023:
p.000023: IV. Guidelines
p.000023: As a consequence of the development of ethi- cal norms for the conduct of research during the past few
...

Political / migrant

Searching for indicator migrant:

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p.000033: and to put in place processes to mitigate harm. Without continuous monitoring, mitigation is impos- sible.
p.000033: This is vital, not only because it is wrong to cause unnecessary harm, but also because harm – to both
p.000033: individuals and communi- ties, such as loss of property value or tourism dollars – may also damage public
p.000033: trust in the programme and in public health in general. (See guidelines 5, 12 and 13 and the discus-
p.000033: sion of good governance in section III.)
p.000033:
p.000033: In some instances, countries have provided compensation for the harm that might
p.000033:
p.000033: inevitably accompany surveillance. In the con- text of SARS, Chinese Taipei gave people who were quarantined the
p.000033: equivalent of US$ 147 (68). Basic welfare beneﬁts or sick pay for those deprived of work as a result
p.000033: of surveil- lance are other possibilities. The possibility of compensation should not, however, pose a
p.000033: barrier to surveillance (69).
p.000033:
p.000033: There are many different types of harm: eco- nomic, legal, psychological, social (and reputa- tional) and
p.000033: physical. All should be considered in relation to surveillance (70-72). For example, a migrant or a person in another
p.000033: disadvantaged group may be identiﬁed as being at higher risk for an infectious disease through surveillance, and this
p.000033: could lead to stigmatization of the group. Relevant information must be handled very carefully: reputations can
p.000033: quickly be dam- aged, with devastating results across a spec- trum that may include not-yet-documented
p.000033: types of harm (73). Various moral values and ethical principles should be weighed and bal- anced against
p.000033: each other and a judgement made about fair distribution of burdens and beneﬁts in different surveillance
p.000033: initiatives or systems in a transparent way (see discussions of equity and good governance in section III).
p.000033:
p.000033: When, despite all efforts to mitigate harm, surveillance entails a predictable risk for harm (stigmatization,
p.000033: discrimination, expulsion or violence), additional precautions should be
p.000033:
p.000033: Table 2. Types of harm potentially related to disclosure of public health surveillance data
p.000033: Type of harm Result
...

Political / person under arrest

Searching for indicator arrest:

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p.000033: could lead to stigmatization of the group. Relevant information must be handled very carefully: reputations can
p.000033: quickly be dam- aged, with devastating results across a spec- trum that may include not-yet-documented
p.000033: types of harm (73). Various moral values and ethical principles should be weighed and bal- anced against
p.000033: each other and a judgement made about fair distribution of burdens and beneﬁts in different surveillance
p.000033: initiatives or systems in a transparent way (see discussions of equity and good governance in section III).
p.000033:
p.000033: When, despite all efforts to mitigate harm, surveillance entails a predictable risk for harm (stigmatization,
p.000033: discrimination, expulsion or violence), additional precautions should be
p.000033:
p.000033: Table 2. Types of harm potentially related to disclosure of public health surveillance data
p.000033: Type of harm Result
p.000033: Physical Public attacks, spouse/partner abuse, domestic violence, delayed or
p.000033: inadequate treatment
p.000033: Legal Arrest, prosecution, death penalty, expulsion
p.000033: Social Discrimination, community discrimination, isolation, inability to access
p.000033: care or exclusion from care, rejection from the community
p.000033: Economic Loss of employment or revenue, loss of health care services, loss of insurance,
p.000033: increased insurance premiums, increased health care costs, limited career options, loss of life resources, forced
p.000033: relocation
p.000033: Psychological/emotional Distress, trauma, stigma
p.000033:
p.000034: 34
p.000034: Guidelines
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p.000034: Health brigades in Chiapas, Mexico, during the epidemic of H1N1 inﬂuenza, 2009.
p.000034: Source: WHO /Harold Ruiz
p.000034:
p.000034:
p.000034: taken to protect the individuals or commu- nities at risk. The risk for serious harm may, in rare
p.000034: circumstances, be so great that sur- veillance might be difﬁcult to justify morally. In most cases,
p.000034: however, mitigation strategies can ensure that risks for harm are dealt with adequately. Once harm or
...

Political / political affiliation

Searching for indicator party:

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p.000005: Suggested citation. WHO guidelines on ethical issues in public health surveillance. Geneva: World Health
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p.000005:
p.000005: Table of Contents
p.000005:
p.000005:
p.000005: Foreword
p.000005: 5
p.000005: Acknowledgements
p.000007: 7
p.000007: I. Introduction
p.000010: 10
p.000010: II. Background
p.000014: 14
p.000014: Deﬁning public health surveillance
p.000014: 14
p.000014: Surveillance: ethics, law and history
p.000016: 16
p.000016: III. Framing the ethics of surveillance
p.000019: 19
p.000019: Existing guidelines
p.000019: 19
...

Searching for indicator political:

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p.000010: seriously harm people and property, as is seen when mob reactions supersede care, compassion and the effective
p.000010: rule of law. Concern is compounded in the absence of trust that the public health system will keep names
p.000010: secure or will release aggregated data and related information (referred to simply as “data” from
p.000010: this point forward, as records contain information that varies in type and scope) in a sensitive manner (2). In
p.000010: some countries, the HIV/AIDS pandemic sparked controversy about tracking by name those carrying the virus, but,
p.000010: even when con- ﬁdentiality was assured, when details of risky behaviour and affected populations became
p.000010: public, groups like gay sex workers and inject- ing drug users experienced social harm such as discrimination
p.000010: and stigmatization. Because of these concerns, the HIV/AIDS epidemic spurred ethical and regulatory
p.000010: guidelines at both national and international levels that could be used in planning, collecting and then
p.000010: using personal and aggregated data.
p.000010:
p.000010: Just as often, however, failure to conduct public health surveillance has generated political and ethical controversy
p.000010: because of concern that “what doesn’t get counted doesn’t count”. Environmental and occupational
p.000010: health advocates, for example, have long made this argument. Even for events deemed critically
p.000010: important, yawning gaps in surveillance remain. The 2014–2016 Ebola virus disease crisis dramatically
p.000010: underscored the potentially devastating consequences of a lack of capacity to monitor the incidence and spread of
p.000010: disease. An effective public health or clinical response can be seriously hampered by the absence of such
p.000010: data. But if Ebola virus disease is a high- proﬁle example of the costs of inadequate systems and the
p.000010: importance of support from the global community for vital surveillance, many other occupational and
p.000010: environmental exposures – like asthma, silicosis and condi- tions related to exposure to arsenic or lead
p.000010: – go uncounted in both high- and low-income countries. Some commentators have argued that, too often, only
p.000010: when a public health crisis becomes a “threat to international peace and security” does surveillance become a
p.000010: priority for wealthy countries (3). But even when sur- veillance is a priority, fragmented, unlinked or
p.000010: consolidated data sets remain a problem for their effective use for public health purposes.
p.000010:
p.000010: While surveillance is often conducted without public knowledge or concern when the risk for stigma,
...

p.000011: disease. Given the zoonotic ori- gin of many of the conditions, surveillance will increasingly involve monitoring
p.000011: the animal– human interface. For example, surveillance of food and animal feed for pathogens must be
p.000011: linked to surveillance for the same pathogens in humans.
p.000011:
p.000011: Surveillance is conducted in a context in which there have been signiﬁcant advances in the capacity to collect
p.000011: and share data from previ- ously unimagined sources, such as social media or geospatial mobile phone data.
p.000011: There have been parallel technological leaps in possibili- ties for identifying disease; genetic analysis, as
p.000011: just one example, allows rapid identiﬁcation of pathogens or pathogenic strains. At the same time, inequalities within
p.000011: societies and within the global community have become more marked. There are growing gulfs in the capacity of dif-
p.000011: ferent nations and locales to take advantage of technological change. Civil conﬂicts in dif- ferent
p.000011: countries inevitably trigger health crises
p.000011:
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p.000011: Dog and pig vendor at market day, Atsabe, Ermera.
p.000011: Source: WHO / SEARO /Joao Soares Gusmao
p.000011:
p.000011: that draw the attention of both United Nations agencies and humanitarian organizations. Cri- sis situations, in
p.000011: turn, deepen inequalities and create additional barriers to surveillance and intervention in conﬂict zones (3).
p.000011:
p.000011: This remarkable epidemiological, social, eco- nomic, political and technological global landscape
p.000011: makes it imperative to ﬁll the gap in international guidelines and to address the ethics of public
p.000011: health surveillance explicitly. That is the aim of these international guide- lines on the ethics of public
p.000011: health surveillance. They were prepared by an international group of experts in surveillance, epidemiological
p.000011: research, bioethics, public health ethics and human rights. The authors of these guidelines represent leading
p.000011: research institutions and also nongovernmental organizations (NGOs) either involved in surveillance or
p.000011: representing groups and populations with a vital interest in both the beneﬁts and burdens of surveillance. The authors
p.000011: also represent countries in both the south and north, with different political systems, social values and
p.000011: priorities.
p.000011:
p.000011: The guidelines were prepared in collaboration with the global network of WHO Collaborating
p.000011:
p.000012: 12
p.000012: Introduction
p.000012:
p.000012:
p.000012:
p.000012: Centres for Bioethics, which initiated the proj- ect. They also drew on the technical support of the US
p.000012: Centers for Disease Control and Prevention to ensure that the guidelines took account of the actual
p.000012: procedures for and cost of data collection, analysis and dissemina- tion and can thus reasonably be
p.000012: used. The guidelines are based on a systematic literature review of relevant research and grey literature in
p.000012: accordance with the WHO Handbook for Guideline Development (5).
p.000012:
p.000012: The goal of the guideline development project was to identify key ethical considerations to guide resolution of
p.000012: controversies that may arise in surveillance, which itself is an ethical obli- gation of governments. Speciﬁc
p.000012: ethical issues are addressed in contexts that differ in terms of culture, values, resources, political
p.000012: traditions and institutional structures, with sometimes very different expectations for the impor-
p.000012: tance of individual rights, community solidar- ity and/or the good of society. The guidelines also address
p.000012: challenges that arise in contexts characterized by persistent injustice and/ or repeated violation
p.000012: of human rights. These guidelines cannot therefore provide concrete answers to all the difﬁcult questions raised
p.000012: by
p.000012: public health surveillance. Rather, on the basis of a set of core considerations for the ethics of public health, the
p.000012: guidelines establish the duty to conduct surveillance, share data and engage communities transparently, while
p.000012: recognizing the limits of that mandate. The 17 guidelines should not be read in isolation from each other or
p.000012: from the discussion of each of them. They jointly lay out the issues that those involved in surveillance
p.000012: (including ofﬁcials in government agencies, health workers involved in surveil- lance, NGOs and the private
p.000012: sector) should consider and weigh carefully when making decisions about the collection, analysis,
p.000012: shar- ing, communication and use of surveillance data.
p.000012:
p.000012: While the guidelines do not specify a mechanism for oversight, the conclusion is that, in view of the overarching
p.000012: imperative to conduct surveil- lance, analyse the data and act on the results, responsibility and
p.000012: accountability must ultimately be based on a sustainable, practical mechanism for ensuring that the ethical
p.000012: challenges posed by public health surveillance are anticipated and addressed systematically and
...

p.000015: increasingly interconnected world. They came into force in 1971 (19). The IHR impose a legal obligation on all
p.000015: Member States to have cer- tain core public health capacities, including surveillance and data collection,
p.000015: with the goal
p.000015:
p.000016: 16
p.000016: Background
p.000016:
p.000016:
p.000016:
p.000016: of preventing, controlling or responding to the international spread of disease.
p.000016:
p.000016: Experience with the SARS crisis of 2003 led the World Health Assembly to adopt a signiﬁcant revision of the IHR
p.000016: on 23 May 2005 (9). While the IHR had originally focused on a short, ﬁxed list of communicable diseases, the revised
p.000016: reg- ulations – IHR (2005) – allow ﬂexibility to target any disease that may constitute a public health emergency of
p.000016: international concern. They also establish an obligation to create core capacity for surveillance and outbreak response
p.000016: to dis- ease and “public health events”. As of Novem- ber 2014, however, 48 countries had failed to communicate
p.000016: their capacity or plans, and another 81 had asked for extensions to com- ing into compliance (20). The
p.000016: recent outbreak of Ebola virus disease revealed that many countries had not satisﬁed their obligations
p.000016: under the IHR; only 64 countries – one third of those bound by the IHR – “had achieved these core
p.000016: capacities”. Nevertheless, while all countries are required to comply with the IHR, limited resources and
p.000016: political instability can pose obstacles to surveillance, and it may not be possible to overcome these obstacles
p.000016: with- out international assistance.
p.000016:
p.000016: The IHR (2005) are limited in the sense that they provide mainly a framework for gover- nance in
p.000016: addressing “public health emergen- cies of international concern”. The framework is neither for constructing
p.000016: comprehensive surveillance systems nor for grappling with the ethical issues posed by surveillance sys-
p.000016: tems and practices. International regulation, like national law and regulation, is an impor- tant tool
p.000016: that establishes a duty to conduct surveillance while also setting limits on that practice. What is legal,
p.000016: however, is not always ethical. Ethics is an essential tool for critically evaluating law, regulation and
p.000016: practice and for addressing the value conﬂicts that may be posed by surveillance.
p.000016: Local and national surveillance systems emerged in the nineteenth century, and almost all comprised
p.000016: physicians’ case reports. The data were initially used almost exclusively to document either social
p.000016: progress or misery (21). At the heart of the most bitter battles over individual rights and population
p.000016: health, how- ever, were surveillance measures that made intervention at the level of individuals possible, with
p.000016: the discovery of germs and the realization that many diseases were spread from person to person. Interventions
p.000016: based on communica- ble disease reports were sometimes welcomed (leading to referral to clinics, provision of food and
...

p.000020: and identifying the basis of unfair differences in health.
p.000020:
p.000020: Respect for persons: Public health eth- ics is concerned with the rights, liberty, and other interests of individuals
p.000020: as well as overall population well-being. When- ever possible, individuals should be involved in decisions
p.000020: that affect them. In some cases, individuals should be free to make their own choices; in other cases,
p.000020: when population-level interven- tions may be necessary, individuals can be consulted and involved in
p.000020: decision- making. But many individuals (such as young children) cannot make their own choices, and the State has
p.000020: an obligation to protect them and promote their long- term health interests. Undertaking pub- lic health surveillance
p.000020: is, itself, arguably an expression of respect for persons. This further requires ensuring that data about
p.000020: individuals and groups are pro- tected and risks for harm are minimized
p.000020:
p.000020: Framing the ethics of surveillance
p.000021: 21
p.000021:
p.000021:
p.000021: to the greatest possible extent. Finally, surveillance further engenders respect for persons by making
p.000021: protection or amelioration possible.
p.000021:
p.000021: Good governance: Although good gov- ernance is not an ethical principle but rather a political aspiration, it
p.000021: is subject to a number of ethical considerations. To ensure that the ethical challenges posed by public health
p.000021: action are addressed systematically and fairly, governance mechanisms must be accountable and open to
p.000021: public scrutiny. Although pro- tection of the common good must draw on the best available evidence,
p.000021: decisions will have to be made in the face of uncertainty. Accountability, transparency and community
p.000021: engage- ment are means of justifying public policy structures that promote respect for persons,
p.000021: equity, and the common good. Transparency requires that poli- cies and procedures for surveillance be
p.000021: communicated clearly and that affected individuals or communities be aware of any decisions concerning them. Trans-
p.000021: parency also requires public reporting of the results of surveillance (in ano- nymized or aggregated form).
p.000021: Without such knowledge, communities cannot be empowered to demand government action or to protect themselves in
p.000021: the absence of alternatives.
p.000021:
p.000021: These are not the only relevant ethical consid- erations with regard to the nature of surveil- lance programmes
p.000021: and practice but the ones considered central to making decisions in the speciﬁc context of public health
p.000021: surveillance by those involved in development of these guidelines.
p.000021:
p.000021: While over the past few decades the global discourse on research ethics has come to
p.000021:
...

p.000022:
p.000022:
p.000022:
p.000022:
p.000022:
p.000022:
p.000022:
p.000022:
p.000022:
p.000022:
p.000022:
p.000022:
p.000022:
p.000022:
p.000022:
p.000022:
p.000022:
p.000022:
p.000022:
p.000022: Framing the ethics of surveillance
p.000023: 23
p.000023:
p.000023: IV. Guidelines
p.000023: As a consequence of the development of ethi- cal norms for the conduct of research during the past few
p.000023: decades, research ethics com- mittees have been established in almost all countries. As surveillance does
p.000023: not fall under the rubric of research, however, there has been no systematic framework for continuous
p.000023: ethical oversight or analysis of the challenges posed by surveillance activities. The following guidelines
p.000023: are premised on the conclusion that ethical scrutiny of public health surveillance is necessary.
p.000023:
p.000023: The guidelines are, necessarily, not prescrip- tive; rather, they seek to highlight trade-offs that must be
p.000023: carefully and routinely weighed. They do not provide concrete deﬁnitions, measures, precise
p.000023: surveillance parameters or oversight mechanisms that might, on the surface, appear to make decision-making
p.000023: less complex. Concepts like “legitimate public health purpose”, “disproportionate burden”,
p.000023:
p.000023: “community engagement” and “good gov- ernance” cannot be regarded as universal yardsticks for use by
p.000023: decision-makers. Rather, agreement on deﬁnitions for use in different contexts lies at the very heart of
p.000023: the vexing political and ethical judgements that must be made: grappling with the meaning of con- cepts
p.000023: in speciﬁc local and national settings represents a ﬁrst step in ethical engagement.
p.000023:
p.000023: The following guidelines, then, cover (i) the broad responsibility to undertake surveillance and subject it
p.000023: to ethical scrutiny; (ii) the obli- gation to ensure appropriate protection and rights; and (iii)
p.000023: considerations in making deci- sions about how to communicate and share surveillance data. These guidelines
p.000023: represent a starting point for the searching, sustained discussions that public health surveillance
p.000023: demands. Like other international guidelines on research ethics, the ethics of surveillance will require
p.000023: continuous review and revision in the light of experience.
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023: Kim Pai factory, Bangkok, June 2015.
p.000023: Source: WHO /Diego Rodriguez
p.000023:
p.000024: 24
p.000024: Guidelines
p.000024:
p.000024:
p.000024:
p.000024: Guideline 1. Countries have an obligation to develop appropriate, feasible, sustainable public health surveillance
p.000024: systems.
p.000024: Surveillance systems should have a clear purpose and a plan for data collection, analysis, use and dissemination based
p.000024: on relevant public health priorities.
p.000024:
p.000024: Member States have an ethical duty to pro- tect population health – not only that of their citizens but that
...

p.000026: context of research ethics. However, public health surveillance is currently not subject to routine
p.000026: oversight. It is the obligation of coun- tries to decide the most appropriate processes for identifying and
p.000026: addressing the ethical issues that arise in public health surveillance.
p.000026:
p.000026: Box 1 provides some examples of existing mechanisms. Any mechanism or process should ensure
p.000026: ethical implementation of sur- veillance without itself becoming an obstacle to achieving the larger public
p.000026: health goal. (We address the nexus of surveillance and research in Guideline 16.)
p.000026: Such mechanisms of ethical oversight should effectively identify the risks and ben- eﬁts of
p.000026: surveillance and suggest measures to enhance the beneﬁts, minimize the risks and ensure appropriate
p.000026: weighing of the com- mon good, equity, and respect for persons. Oversight should be continuous, and any
p.000026: substantial changes proposed to the surveil- lance system should be evaluated through an “ethical lens”.
p.000026:
p.000026: Ethical monitoring of surveillance can be facili- tated and enhanced by training public health personnel. Such
p.000026: training can emphasize the importance of integrating ethical analysis early and explicitly when developing
p.000026: and imple- menting a surveillance system.
p.000026:
p.000026: While the establishment of an indepen- dent, impartial ethics oversight mechanism is warranted,
p.000026: concrete implementation will depend on the social, political, legal, and cultural context in which surveillance
p.000026: is con- ducted (52). Research usually entails discrete projects with time-limited horizons, whereas surveillance
p.000026: usually involves continuous monitoring as opposed to a one-time review. The most appropriate mechanism for
p.000026: ethical scrutiny should be chosen in a transparent, accountable fashion. (See guidelines 2 and 5 and the
p.000026: discussion of good governance in section III.)
p.000026:
p.000026:
p.000026: Guidelines
p.000027: 27
p.000027:
p.000027:
p.000027:
p.000027: Box 1. Examples of oversight mechanisms
p.000027:
p.000027: Public Health Ontario (Canada)
p.000027:
p.000027: In 2012, Public Health Ontario published “A framework for the conduct of public health initiatives”. It
p.000027: applies an integrated approach for ethics review, in which all evidence-generating initiatives undergo ethi- cal
p.000027: scrutiny proportionate to the level of risk. Its Ethics Review Board plays a vital role in helping to ensure that
p.000027: research and other initiatives conducted by Public Health Ontario are carried out in a manner that is
p.000027: consistent with the second edition of the Federal “Tri-council policy statement on ethical conduct for
p.000027: research involving humans and other relevant regulations, policies and guidelines”. The Ethics Review Board addresses
p.000027: research, evaluation, surveillance, and quality improvement projects that involve human partici- pants, their data, or
...

p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054: References
p.000055: 55
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055: • What is the ethical obligation to undertake public health surveillance?
p.000055: • What are the risks of conducting disease surveillance? How should such risks be balanced against population level
p.000055: beneﬁts?
p.000055: • When and how must relevant communities be engaged in the development of surveillance plans?
p.000055: • How should the conﬁdentiality of surveillance data be protected?
p.000055: • What are the ethical obligations to share relevant public health surveillance data across public health
p.000055: authorities? With public health researchers? With communities and individuals who have contributed to surveillance
p.000055: systems?
p.000055: • Are there circumstances when data sharing must be strictly prohibited?
p.000055: • What institutional mechanisms should be established to ensure ethical issues are systematically addressed prior to
p.000055: data collection, use, and dissemination?
p.000055:
p.000055: These are core questions that those involved in public health surveillance have grappled with for more than a century.
p.000055: To address these and
p.000055: other pressing concerns an international group of experts has developed the WHO Guidelines on Ethical Issues in Public
p.000055: Health Surveillance. Based on a set of core ethical and policy considerations, these 17 guidelines establish the
p.000055: afﬁrmative duties to undertake surveillance, share data, and engage communities, while recognizing the limits of
p.000055: surveillance. They will be applied in situations characterized by fundamental cultural, economic, and political
p.000055: variability. The goal, therefore, is to enable critical discussion about legitimate ethical tensions and trade-offs and
p.000055: the appropriate governance and oversight of surveillance.
p.000055:
p.000055:
p.000055:
p.000055: For more information, contact:
p.000055:
p.000055: Global Health Ethics
p.000055: Department of Information, Evidence and Research WHO, Geneva
p.000055:
p.000055: Email: ct_ethics@who.int
...

Political / stateless persons

Searching for indicator nation:

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p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008: The WHO Strategic Health Operations Centre (SHOC) May 3, 2009.
p.000008: Source: WHO /Christopher Black
p.000008:
p.000008:
p.000008:
p.000009: 9
p.000009:
p.000009: I. Introduction
p.000009: Disease surveillance has been a basic public health activity since the late nineteenth century (see Table 1). It
p.000009: is the foundation for initiatives to promote human well-being at the popula- tion level. Public health
p.000009: surveillance is the bed- rock of outbreak and epidemic response, but it reaches far beyond infectious diseases.
p.000009: It can contribute to reducing inequalities: pockets of suffering that are unfair, unjust, and prevent- able
p.000009: cannot be addressed if they are not ﬁrst made visible (1). It is central to understanding the increasing global
p.000009: burden of noncommuni- cable conditions. By helping to determine pat- terns and causes of morbidity and mortality,
p.000009: public health surveillance can help guarantee
p.000009:
p.000009: access to safe food, clean water, pure air, and healthy environments. Continuous envi- ronmental
p.000009: surveillance may not only identify concerns but also trigger alerts. Occupational disease surveillance can
p.000009: identify workplace exposures and lead to regulation. Surveillance can help create accountable institutions
p.000009: by providing information about health and its determinants. It can provide an evidentiary basis
p.000009: for establishing and evaluating public health policy. Surveillance, for example, will be central to the
p.000009: achievement of the United Nation’s Sustainable Development Goals. The availability of the results of
p.000009: surveillance enables and promotes policy choice. Thus, access to surveillance information can serve as
p.000009: a tool for advocacy when the results are
p.000009:
p.000009: Table 1. Dimensions of public health surveillance
p.000009: Scope
p.000009:
p.000009: Communicable diseases
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Early detecting and warning of epidemics
p.000009: Noncommunicable diseases
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Trend and spatial analyses
p.000009: Environmental factors
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Risk detection
p.000009: Risk factors and risk markers
p.000009:
p.000009:
p.000009: 
p.000009: Objectives
p.000009: Generating hypotheses
p.000009:
p.000009: 
p.000009: Health system
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Monitoring of health system performance
p.000009: Demographic variables
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Evaluation of control measures
p.000009: Health-related events (e.g. food and drug safety, vaccine reactions)
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Policy analysis
p.000009:
p.000009:
p.000009:
p.000009: Registries Case reports Repeated
p.000009: surveys
p.000009: Data collection tools
p.000009: Bio-banks Secondary data sources
p.000009:
p.000009: 
p.000009: Types of analysis
p.000009:
p.000009:
...

p.000015: paper; in oth- ers, they are collected, stored and shared via sophisticated electronic systems. The era of
p.000015: “big data,” as discussed in section V, may hold enormous potential for the future of public health surveillance,
p.000015: broadly understood, and has already raised vexing ethical questions.
p.000015:
p.000015: In some jurisdictions, surveillance systems could soon be linked directly to electronic health
p.000015: records. Interoperability between pub- lic health surveillance data sources and clini- cal practice is within
p.000015: reach, in both the public and the private health care sectors (15). Public health data can be used to inform
p.000015: automatic decision-support systems or computational tools to trigger alerts and warnings. Research has shown,
p.000015: further, that geospatial mobile phone data could accurately describe and pre- dict the movement of individuals
p.000015: and thereby the spread of diseases like malaria and H1N1 inﬂuenza (16-18).
p.000015:
p.000015: These guidelines deﬁne public health surveil- lance systems broadly, building on the general WHO deﬁnition of
p.000015: continuous, systematic col- lection, analysis, interpretation, and sharing of health–related data for advocacy and for
p.000015: plan- ning, implementing, and evaluating public health practices. Even if systems are operative, however, new,
p.000015: focused studies are required to respond to epidemiological threats. Further, public health surveillance systems not
p.000015: only rely on but may also inform and improve clinical practice.
p.000015:
p.000015: Surveillance: ethics, law and history
p.000015:
p.000015: Nation states have established surveillance sys- tems that differ in scope and purpose. Interna- tional law and
p.000015: regulation have been important means of ensuring at least a basic level of public health surveillance in
p.000015: all countries. In 1969, the WHO Member States adopted the IHR, a revision and consolidation of the
p.000015: Inter- national Sanitary Regulations, as the frame- work for strengthening health security in an
p.000015: increasingly interconnected world. They came into force in 1971 (19). The IHR impose a legal obligation on all
p.000015: Member States to have cer- tain core public health capacities, including surveillance and data collection,
p.000015: with the goal
p.000015:
p.000016: 16
p.000016: Background
p.000016:
p.000016:
p.000016:
p.000016: of preventing, controlling or responding to the international spread of disease.
p.000016:
p.000016: Experience with the SARS crisis of 2003 led the World Health Assembly to adopt a signiﬁcant revision of the IHR
p.000016: on 23 May 2005 (9). While the IHR had originally focused on a short, ﬁxed list of communicable diseases, the revised
p.000016: reg- ulations – IHR (2005) – allow ﬂexibility to target any disease that may constitute a public health emergency of
p.000016: international concern. They also establish an obligation to create core capacity for surveillance and outbreak response
p.000016: to dis- ease and “public health events”. As of Novem- ber 2014, however, 48 countries had failed to communicate
p.000016: their capacity or plans, and another 81 had asked for extensions to com- ing into compliance (20). The
...

p.000032: account of community values and concerns requires, at a minimum, that legiti- mate authorities undertake
p.000032: public health sur- veillance in a transparent manner in accordance with the principles of good governance. Active
p.000032: engagement of the community may involve meetings with community leaders, focus group discussions and other
p.000032: forums that provide an opportunity for members to clearly express their values and concerns (see Guideline 5
p.000032: and the discussion of good governance in section III).
p.000032:
p.000032: Box 2. Community engagement
p.000032:
p.000032: A particularly compelling, ﬂexible method for engaging communities is democratic deliberation. This is a
p.000032: structured method for decision-making that brings together diverse stakeholders to construct solutions to complex
p.000032: policy questions. Participants engage in discussion and dialogue, communicate their perspectives respectfully, and
p.000032: provide justiﬁcation for their views in a way that everyone involved can grasp. The goal is to make pressing decisions
p.000032: while considering empirical evidence, communities’ lived experience, and values. The US Bioethics Commission (64) has
p.000032: used the deliberative method as it has grappled with difﬁcult issues fraught with tension and has made available a
p.000032: variety of training tools (65). While it is only one means of ensuring citizen involvement and is not appropriate for
p.000032: all situations, it has been a staple not only of local and national but also global decision-making. For example, in
p.000032: June 2016, (66) some 10 000 citizens in 76 countries expressed concern about climate change and recommended legally
p.000032: binding measures, including “reporting of [each nation’s] adaptation and mitigation efforts” to keep global warming
p.000032: below 2 °C. (67)
p.000032:
p.000032: Guidelines
p.000033: 33
p.000033:
p.000033:
p.000033: Guideline 8. Those responsible for surveillance should identify, evaluate, minimize and disclose risks for harm before
p.000033: surveillance is conducted. Monitoring for harm should be continuous, and, when any is identiﬁed, appropriate action
p.000033: should be taken to mitigate it.
p.000033:
p.000033: Even when public health surveillance is clearly justiﬁed to promote the common good, Mem- ber States and those
p.000033: responsible for conduct- ing surveillance should remain alert to the possibility that harm can be
p.000033: caused to both individuals and communities (Table 2).
p.000033:
p.000033: This does not mean that surveillance should not be conducted. Rather, those conducting surveillance have
p.000033: an obligation to identify potential harm beforehand, to monitor for harm during and after surveillance
p.000033: and to put in place processes to mitigate harm. Without continuous monitoring, mitigation is impos- sible.
p.000033: This is vital, not only because it is wrong to cause unnecessary harm, but also because harm – to both
p.000033: individuals and communi- ties, such as loss of property value or tourism dollars – may also damage public
...

Political / vulnerable

Searching for indicator vulnerable:

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p.000016:
p.000016: Physicians, worried about interference with their patients and use of their time, often resented, resisted
p.000016: or simply ignored man- dates for reporting. But not all monitoring of morbidity and mortality
p.000016: required iden- tiﬁcation of cases by name. Reporting of sexually transmitted diseases, for
p.000016: example, was often done by code instead of name in industrialized countries (21). Contact tracing, of course,
p.000016: required names, but most physi- cians kept the index case anonymous when patients cooperated by providing
p.000016: the names of sex partners and adhering to treatment. Whether names were necessary or whether informed
p.000016: consent was required often framed debates as surveillance was extended, over
p.000016:
p.000016: Background
p.000017: 17
p.000017:
p.000017: the course of the twentieth century, to NCDs such as cancer, diabetes and stroke and to occupational exposures,
p.000017: substance use, road accidents, injuries, vaccination status and vaccine reactions (22).
p.000017:
p.000017: During the twentieth century, it was often people affected by a disease or condition who challenged the need for
p.000017: surveillance; but, just as often, the story of surveillance has been one in which affected groups have demanded
p.000017: the “right to be counted” (22). NCD surveil- lance, in contrast to infectious disease surveil- lance, has been
p.000017: underfunded and “woefully inadequate,” even in high-income countries (23). Workers exposed to toxic hazards
p.000017: and citizens vulnerable to environmental pollut- ants have sometimes joined social movements as a means of
p.000017: gaining both attention and the resources necessary for surveillance; however, the more common story is that chronic
p.000017: disease threats, particularly those of vulnerable popu- lations, remain invisible.
p.000017: Global crises often expose systemic challenges that are insufﬁciently addressed. Undocu- mented migrants
p.000017: with tuberculosis are still not included in statistics submitted to WHO by some countries (24, 25), but it
p.000017: would be a mistake to assume that the only challenges are the absence of surveillance or under-reporting. Tuberculosis
p.000017: surveillance data, for instance, were critical for determining levels of funding from the Global Fund to Fight
p.000017: AIDS, Tubercu- losis and Malaria. Surveillance staff sometimes
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: Industrial pollution. Moscow, Russia.
p.000017: Source: WHO /Sergey Volkov
p.000017:
p.000017:
p.000017:
p.000017: found themselves under high pressure to reach what some criticized as unrealistic targets. They had to choose
p.000017: between showing “good” results or losing their jobs, adversely affecting the quality of data in some settings (26, 27).
p.000017:
p.000017: These guidelines are based on the understand- ing that surveillance is so fundamental a public health practice that
p.000017: its advancement cannot depend on crises or citizen protests to make the case for tracking disease for
p.000017: the sake of public health. While these guidelines represent a call to action, it is not a call to unrestrained
p.000017: action. Rather, public health surveillance, con- ducted in a manner that anticipates ethical challenges and
p.000017: proactively seeks to reduce unnecessary risks, provides the architecture for social well-being.
p.000017:
p.000017:
p.000017:
p.000017:
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p.000017:
p.000018: 18
p.000018: Background
p.000018:
...

p.000020: following ethical consid- erations are of particular importance for public health surveillance. They represent
p.000020: the back- bone of the guidelines:
p.000020:
p.000020: Common good: Surveillance is widely acknowledged to be a public good (43), and some of the beneﬁts
p.000020: it pro- vides cannot be subdivided into indi- vidual private beneﬁts because they are fundamentally shared (41,
p.000020: 44). Surveil- lance is justiﬁed, fundamentally, as a requirement for the good of all. With- out adequate
p.000020: oversight by public health bodies and the participation of individ- uals and communities, the shared ben- eﬁts of
p.000020: surveillance are at risk. There is a complex literature on economics and moral philosophy that seeks to deﬁne and
p.000020: distinguish the terms “public good”, “public goods,” and “the com- mon good” (45). After careful delibera-
p.000020: tion, the committee adopted the term “the common good” to capture the notion of public goods more
p.000020: broadly conceived than in the narrow economic sense.
p.000020: Equity: Public health ethics is centrally concerned with the idea of equity. It is well established that
p.000020: social inequality has adverse effects on health (46). Not all inequality is within human control or is
p.000020: morally relevant. Morally prob- lematic inequality is commonly referred to as inequity. A just or fair society
p.000020: will attempt to provide equitable conditions for humans to ﬂourish, with health as a central component.
p.000020: Equity some- times requires that the most vulnerable people receive what may appear to be disproportionate
p.000020: resources: that is, the unfair distribution of risks requires addi- tional resources to balance the scales.
p.000020: Public health surveillance can further the pursuit of equity by identifying the particular problems
p.000020: of disadvantaged populations, including global communi- ties, providing the evidence for focused health campaigns
p.000020: and identifying the basis of unfair differences in health.
p.000020:
p.000020: Respect for persons: Public health eth- ics is concerned with the rights, liberty, and other interests of individuals
p.000020: as well as overall population well-being. When- ever possible, individuals should be involved in decisions
p.000020: that affect them. In some cases, individuals should be free to make their own choices; in other cases,
p.000020: when population-level interven- tions may be necessary, individuals can be consulted and involved in
p.000020: decision- making. But many individuals (such as young children) cannot make their own choices, and the State has
p.000020: an obligation to protect them and promote their long- term health interests. Undertaking pub- lic health surveillance
p.000020: is, itself, arguably an expression of respect for persons. This further requires ensuring that data about
p.000020: individuals and groups are pro- tected and risks for harm are minimized
p.000020:
p.000020: Framing the ethics of surveillance
p.000021: 21
p.000021:
p.000021:
...

p.000024: identiﬁable data, including names and other socio-demo- graphic characteristics. Such intrusion on clini- cal
p.000024: conﬁdentiality is justiﬁed when names are required to ensure the collection of accurate data, which is separate
p.000024: from the need to target interventions. But accurate data and targeted interventions both rest on the moral obligation
p.000024: to prevent harm to others and the common good or to provide the best resources to pop- ulations according to
p.000024: the burden of disease, as in the case of cancer registries. Guidelines 11 and 12 outline the ethical
p.000024: limits to name- based reporting.
p.000024:
p.000024: Public health surveillance activities require investment of societal resources to preserve, protect and
p.000024: promote health. In all countries, but especially in low-resource settings, allo- cating societal resources for
p.000024: public health sur- veillance requires prioritization. This issue is discussed further in Guideline 5.
p.000024:
p.000024: Guidelines
p.000025: 25
p.000025:
p.000025: Once surveillance data are available, Member States have the moral duty to use the data actively to promote
p.000025: better health outcomes. Even when resources limit the capacity of countries to take immediate action
p.000025: on the basis of the ﬁndings of public health surveil- lance, the data provide the evidentiary basis for
p.000025: advocacy directed at both the national
p.000025: and global communities, thus potentially empowering the most vulnerable. The pur- suit of equity
p.000025: establishes a warrant for sur- veillance, and the global community should provide the necessary help in
p.000025: moving from collecting and analysing data to action (see Guideline 6).
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
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p.000025:
p.000025:
p.000025:
p.000025:
p.000025: Interior view: a nurse is examining two young children in the dining area of the home; the mother is standing to the
p.000025: left; further to the left is a large stove situated next to a ﬁreplace.
p.000025: Source: The National Library of Medicine
p.000025:
p.000025:
p.000025:
p.000026: 26
p.000026: Guidelines
p.000026:
p.000026:
p.000026:
p.000026: Guideline 2. Countries have an obligation to develop appropriate, effective mechanisms to ensure ethical surveillance.
p.000026:
p.000026: Public health surveillance has inherent beneﬁts for the functioning of the public health sys- tem, as well as
p.000026: risks. Countries should have an appropriate, effective mechanism for ensur- ing adherence to ethical standards
p.000026: in both emergency and non-emergency situations. Decisions about changing an established sur- veillance
p.000026: system can pose important ethical challenges. Examples of changes that may require ethical scrutiny
...

p.000035: critical and demands careful scrutiny to avoid the imposition of unnecessary additional burdens.
p.000035:
p.000035: Individuals or groups in situations of height- ened vulnerability bear an undue proportion of health
p.000035: problems. Responsible authorities should make special efforts to ensure that these populations are
p.000035: included in surveillance in ways that will empower them. How exactly situations of vulnerability should be
p.000035: deﬁned is a subject of dispute in the literature (74). Vulnerability may be diffuse, affecting large
p.000035: communities with limited economic develop- ment, limited access to health care facilities, educational
p.000035: deprivation, occupational risks or wider disadvantages in society. Public health surveillance and health
p.000035: information systems can provide valuable information to aid the development of health programmes and ser-
p.000035: vices to address their health problems and the underlying determinants of health, such as clean water, food
p.000035: security, or gender equality. To promote equity, surveillance should focus on the speciﬁc problems of these
p.000035: vulnerable communities.
p.000035:
p.000035: People with particular susceptibility to disease, harm or injustice are also at increased risk for further
p.000035: burdens, such as discrimination and stigma, attributable to surveillance activities or ﬁndings. For
p.000035: example, refugee groups and undocumented migrants with a higher disease burden may be seen, wrongly, as the cause of
p.000035: disease outbreaks. Similarly, workers with an occupational disease, such as silicosis, who lack access
p.000035: to adequate legal support may
p.000035:
p.000035: be dismissed from work rather than receiving treatment or compensation. Wherever pos- sible, susceptible
p.000035: groups should be identiﬁed before surveillance activities begin in order to minimize the risk for harm. In
p.000035: surveillance pro- grammes, there should be constant monitor- ing for (further) harm to those in conditions of
p.000035: particular vulnerability. When harm does occur, a mitigation strategy should be put in place (see Guideline 8).
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
...

Searching for indicator vulnerability:

(return to top)
p.000034: surveillance in order to minimize any negative consequences for a community and to maintain trust.
p.000034: Addition- ally, given their mission to mitigate harm, politically neutral international humanitar-
p.000034: ian organizations must not be hindered in situations such as civil conﬂict zones, where international
p.000034: agencies are constrained when it comes to recognizing “opposition parties as operational partners” (3).
p.000034:
p.000034: Notably, public health professionals them- selves sometimes require protection. As champions of
p.000034: the common good, they must be free to report without fear of reprisal. As surveillance ofﬁcials have a
p.000034: responsibility to speak up, they should have protection. This idea is established in the IHR, which
p.000034: protects the conﬁdentiality of those who report a veri- ﬁable outbreak or a public health event out- side
p.000034: ofﬁcial channels.
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034: Guidelines
p.000035: 35
p.000035:
p.000035:
p.000035: Guideline 9. Surveillance of individuals or groups who are particularly susceptible to disease, harm or injustice is
p.000035: critical and demands careful scrutiny to avoid the imposition of unnecessary additional burdens.
p.000035:
p.000035: Individuals or groups in situations of height- ened vulnerability bear an undue proportion of health
p.000035: problems. Responsible authorities should make special efforts to ensure that these populations are
p.000035: included in surveillance in ways that will empower them. How exactly situations of vulnerability should be
p.000035: deﬁned is a subject of dispute in the literature (74). Vulnerability may be diffuse, affecting large
p.000035: communities with limited economic develop- ment, limited access to health care facilities, educational
p.000035: deprivation, occupational risks or wider disadvantages in society. Public health surveillance and health
p.000035: information systems can provide valuable information to aid the development of health programmes and ser-
p.000035: vices to address their health problems and the underlying determinants of health, such as clean water, food
p.000035: security, or gender equality. To promote equity, surveillance should focus on the speciﬁc problems of these
p.000035: vulnerable communities.
p.000035:
p.000035: People with particular susceptibility to disease, harm or injustice are also at increased risk for further
p.000035: burdens, such as discrimination and stigma, attributable to surveillance activities or ﬁndings. For
p.000035: example, refugee groups and undocumented migrants with a higher disease burden may be seen, wrongly, as the cause of
p.000035: disease outbreaks. Similarly, workers with an occupational disease, such as silicosis, who lack access
p.000035: to adequate legal support may
p.000035:
p.000035: be dismissed from work rather than receiving treatment or compensation. Wherever pos- sible, susceptible
p.000035: groups should be identiﬁed before surveillance activities begin in order to minimize the risk for harm. In
p.000035: surveillance pro- grammes, there should be constant monitor- ing for (further) harm to those in conditions of
p.000035: particular vulnerability. When harm does occur, a mitigation strategy should be put in place (see Guideline 8).
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: The HIV oral test on a brothel bed in Belém do Pará, Brazil.
p.000035: Source: Laura Murray
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000036: 36
p.000036: Guidelines
p.000036:
p.000036:
p.000036:
p.000036: Guideline 10. Governments and others who hold surveillance data must ensure that identiﬁable data are appropriately
p.000036: secured.
p.000036:
p.000036: Responsible data collection and sharing prac- tices should ensure the security of the data collected in order to
p.000036: respect persons and safe- guard the privacy and other interests of the individuals and communities concerned
p.000036: (50). Every effort must be made to secure records to prevent unauthorized disclosure. Security is
p.000036: different from privacy and conﬁdential- ity, yet it is an essential component of each. “Security” in
p.000036: this context consists of opera- tional and technological safeguards to protect personal data from unauthorized
p.000036: access or disclosure. Maintaining information security is not fool-proof, as electronic databases can be inﬁltrated.
p.000036:
p.000036: Governments and others who hold surveil- lance data must take appropriate techni- cal and
...

p.000044: and data destruction conditions at the end of the research phase.
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044: Guidelines
p.000045: 45
p.000045:
p.000045:
p.000045: Guideline 17. Personally identiﬁable surveillance data should not be shared with agencies that are likely to use them
p.000045: to take action against individuals or for uses unrelated to public health.
p.000045:
p.000045: While aggregate public health data may be widely shared with agencies outside the health sector
p.000045: and non-state actors responsible for public welfare, sharing personally identi- ﬁable data is a fundamentally
p.000045: different mat- ter. Access to such personal information by agencies responsible for national security, law
p.000045: enforcement, or the allocation of social ben- eﬁts should usually be allowed only after legal due process. To
p.000045: preserve trust in public health surveillance systems, there should be compel- ling justiﬁcation for sharing
p.000045: identiﬁable data for non-public health uses.
p.000045:
p.000045: Inappropriate sharing of surveillance data is especially controversial in countries in which law enforcement
p.000045: or other agencies have been
p.000045:
p.000045: implicated in systematic violations of human rights. In these contexts, collaboration with law enforcement
p.000045: agencies may undermine trust in public health surveillance, creating a disincentive for seeking care or
p.000045: honest report- ing of data. This is a particular concern for individuals or groups in situations of particular
p.000045: vulnerability (92). Further, such unwarranted sharing will potentially inﬂict long-term dam- age on public
p.000045: health efforts more broadly.
p.000045:
p.000045: The governance mechanisms recommended in Guideline 2 should ensure that the exceptional conditions, if any, under which
p.000045: identiﬁable sur- veillance data may be shared are speciﬁed and made transparent. Such a review will require
p.000045: determination of whether the threat is of suf- ﬁcient magnitude to warrant potential damage to the integrity of and
p.000045: trust in public health sur- veillance systems. Sanctions must be in place to prevent inappropriate data-sharing
p.000045: by public health agencies and inappropriate use of data by agencies outside the public health sector.
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045: WHO Immunization ofﬁcers visit Quang Binh Province, Viet Nam to monitor the Measles-Rubella Immunization campaign.
p.000045: Source: WHO / WPRO /Emmanuel Eraly
p.000045:
p.000046: 46
p.000046: Guidelines
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
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p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046: A barcode is placed at the entrance of houses. After being ﬂashed with a smartphone, the barcode provides information
...

Health / Drug Usage

Searching for indicator drug:

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p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005: WHO gratefully acknowledges the contribution of the WHO Guidelines Development Group, which shared extensive
p.000005: knowledge, original text and comments on the document. All are also co-authors of the document:
p.000005:
p.000005: Kokou Agoudavi, Ministry of Health, Togo; Jimoh Amzat, Usmanu Danfodiyo Univer- sity, Nigeria;
p.000005: Ronald Bayer, Columbia Univer- sity Mailman School of Public Health, USA; Philippe Calain, Médecins Sans
p.000005: Frontières, Switzerland; Yali Cong, Peking University Health Science Centre, China; Angus Dawson,
p.000005: University of Sydney, Australia; Claire Gayrel, University of Namur, Belgium; Jennifer L. Gibson,
p.000005: Joint Centre for Bioethics, Univer- sity of Toronto, Canada; Kenneth Goodman, University of Miami,
p.000005: USA; Vijayaprasad Gopichandran, Tamil Nadu School of Public Health, India; Einar Heldal, Institute of
p.000005: Public Health, Norway; Calvin Ho Wai Loon, National University of Singapore Centre for Biomedical Ethics, Singapore;
p.000005: Hussain Jafri, Council for Alzheimer’s, Pakistan; Lisa M. Lee, Presidential Commission for the Study of Bioethical
p.000005: Issues, USA; Sergio Litewka, University of Miami, USA; Mina Mobasher, Kerman University of Medical Sciences, Islamic
p.000005: Republic of Iran; Keymanthri Moodley, Stellenbosch University, South Africa; Boateng Okyere, University of Ghana,
p.000005: Ghana; Maria Consorcia Quizon, Training programs in Epidemiology and Public Health Interventions Network,
p.000005: Philippines; Pathom Sawanpany- alert, Food and Drug Administration, Thailand;
p.000005:
p.000005:
p.000005: Acknowledgements
p.000007: 7
p.000007:
p.000007:
p.000007: Michael Selgelid, Monash University, Australia; Ross Upshur, University of Toronto, Canada; Effy Vayena,
p.000007: University of Zurich, Switzerland.
p.000007:
p.000007: The Global Network of WHO Collaborating Centres for Bioethics and their members are gratefully acknowledged.
p.000007:
p.000007: WHO thanks the support provided by various observers: Ehsan S Gooshki, Tehran University, Islamic Republic of
p.000007: Iran; Katherine Littler, Wel- come Trust, United Kingdom; Debra Mosure, Centers for Disease Control and
p.000007: Prevention, USA; Patricia Sweeney, Centers for Disease Control and Prevention, USA; and Hans van Delden,
p.000007: Utrecht University Medical Centre, Netherlands.
p.000007:
p.000007: The support and contributions of two consul- tants is greatly appreciated: Carl H. Coleman, Seton Hall Law
p.000007: School, USA, and Michele Loi, Swiss Federal Institute of Technology, Switzerland.
p.000007:
p.000007: This guidance document beneﬁted from the work of a literature review group, comprising: Corinna Klingler,
p.000007: Ludwig Maximilian University Munich, Germany (lead); Diego S. Silva, Simon Fraser University, Canada; Daniel
p.000007: Strech and Christopher Schürmann, Hannover Medical School, Germany; and Michael Vaughn, Colum- bia University
p.000007: School of Public Health, USA.
p.000007:
p.000007: WHO’s Global Health Ethics team extends thanks to the WHO internal steering group for its invaluable
p.000007: advice on development of the guidelines: Isabel Bergeri, Marie-Charlotte Bouesseau, Somnath Chatterji, Joan
...

p.000009: by providing information about health and its determinants. It can provide an evidentiary basis
p.000009: for establishing and evaluating public health policy. Surveillance, for example, will be central to the
p.000009: achievement of the United Nation’s Sustainable Development Goals. The availability of the results of
p.000009: surveillance enables and promotes policy choice. Thus, access to surveillance information can serve as
p.000009: a tool for advocacy when the results are
p.000009:
p.000009: Table 1. Dimensions of public health surveillance
p.000009: Scope
p.000009:
p.000009: Communicable diseases
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Early detecting and warning of epidemics
p.000009: Noncommunicable diseases
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Trend and spatial analyses
p.000009: Environmental factors
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Risk detection
p.000009: Risk factors and risk markers
p.000009:
p.000009:
p.000009: 
p.000009: Objectives
p.000009: Generating hypotheses
p.000009:
p.000009: 
p.000009: Health system
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Monitoring of health system performance
p.000009: Demographic variables
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Evaluation of control measures
p.000009: Health-related events (e.g. food and drug safety, vaccine reactions)
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Policy analysis
p.000009:
p.000009:
p.000009:
p.000009: Registries Case reports Repeated
p.000009: surveys
p.000009: Data collection tools
p.000009: Bio-banks Secondary data sources
p.000009:
p.000009: 
p.000009: Types of analysis
p.000009:
p.000009:
p.000009: Population-based (universal or sentinel sites)
p.000009:
p.000009:
p.000009: Social media
p.000009:
p.000009: Estimation of incidence or prevalence
p.000009: Measurement of associations
p.000009: Assessment of trends
p.000009:
p.000009: 
p.000009: Uses
p.000009: Assessment of spatial patterns
p.000009: Data mining
p.000009:
p.000009: Policy change
p.000009:
p.000009: Source: A.A. Haghdoost
p.000009: Structural intervention
p.000009: Case or epidemic detection
p.000009: Testing of hypotheses
p.000009: Implementation research
p.000009: Quality assurance
p.000009:
p.000010: 10
p.000010: Introduction
p.000010:
p.000010:
p.000010:
p.000010: shared with populations and policy-makers in a timely, appropriate manner.
p.000010:
p.000010: Yet surveillance has been the subject of some- times bitter controversy. Public health sur- veillance may
p.000010: limit not only privacy but also other civil liberties. For example, surveillance may trigger mandatory
p.000010: quarantine, isolation, or seizure of property during an epidemic (2). When surveillance involves
p.000010: name-based reporting (that is, reporting by name), it can, to the extent that populations are made aware, trigger
p.000010: profound concern about intrusions on privacy, discrimination, and stigmatization. Name-based reporting can also
p.000010: seriously harm people and property, as is seen when mob reactions supersede care, compassion and the effective
p.000010: rule of law. Concern is compounded in the absence of trust that the public health system will keep names
p.000010: secure or will release aggregated data and related information (referred to simply as “data” from
p.000010: this point forward, as records contain information that varies in type and scope) in a sensitive manner (2). In
p.000010: some countries, the HIV/AIDS pandemic sparked controversy about tracking by name those carrying the virus, but,
p.000010: even when con- ﬁdentiality was assured, when details of risky behaviour and affected populations became
p.000010: public, groups like gay sex workers and inject- ing drug users experienced social harm such as discrimination
p.000010: and stigmatization. Because of these concerns, the HIV/AIDS epidemic spurred ethical and regulatory
p.000010: guidelines at both national and international levels that could be used in planning, collecting and then
p.000010: using personal and aggregated data.
p.000010:
p.000010: Just as often, however, failure to conduct public health surveillance has generated political and ethical controversy
p.000010: because of concern that “what doesn’t get counted doesn’t count”. Environmental and occupational
p.000010: health advocates, for example, have long made this argument. Even for events deemed critically
p.000010: important, yawning gaps in surveillance remain. The 2014–2016 Ebola virus disease crisis dramatically
p.000010: underscored the potentially devastating consequences of a lack of capacity to monitor the incidence and spread of
p.000010: disease. An effective public health or clinical response can be seriously hampered by the absence of such
p.000010: data. But if Ebola virus disease is a high- proﬁle example of the costs of inadequate systems and the
p.000010: importance of support from the global community for vital surveillance, many other occupational and
p.000010: environmental exposures – like asthma, silicosis and condi- tions related to exposure to arsenic or lead
...

p.000016: comprehensive surveillance systems nor for grappling with the ethical issues posed by surveillance sys-
p.000016: tems and practices. International regulation, like national law and regulation, is an impor- tant tool
p.000016: that establishes a duty to conduct surveillance while also setting limits on that practice. What is legal,
p.000016: however, is not always ethical. Ethics is an essential tool for critically evaluating law, regulation and
p.000016: practice and for addressing the value conﬂicts that may be posed by surveillance.
p.000016: Local and national surveillance systems emerged in the nineteenth century, and almost all comprised
p.000016: physicians’ case reports. The data were initially used almost exclusively to document either social
p.000016: progress or misery (21). At the heart of the most bitter battles over individual rights and population
p.000016: health, how- ever, were surveillance measures that made intervention at the level of individuals possible, with
p.000016: the discovery of germs and the realization that many diseases were spread from person to person. Interventions
p.000016: based on communica- ble disease reports were sometimes welcomed (leading to referral to clinics, provision of food and
p.000016: clothing) but were sometimes a cause of alarm (when leading to mandatory vaccination or treatment, quarantine or
p.000016: deportation). Ofﬁ- cial morbidity reports were usually protected against public disclosure by law,
p.000016: regulation, and practice. Surveillance was also the basis for population health measures, such as the
p.000016: pasteurization of milk, regulation of food and drug manufacture, housing reform and other measures that addressed
p.000016: the structural causes of disease. Resistance to such measures, largely on the part of independent and incor-
p.000016: porated businesses, was often framed as an issue of individual rights.
p.000016:
p.000016: Physicians, worried about interference with their patients and use of their time, often resented, resisted
p.000016: or simply ignored man- dates for reporting. But not all monitoring of morbidity and mortality
p.000016: required iden- tiﬁcation of cases by name. Reporting of sexually transmitted diseases, for
p.000016: example, was often done by code instead of name in industrialized countries (21). Contact tracing, of course,
p.000016: required names, but most physi- cians kept the index case anonymous when patients cooperated by providing
p.000016: the names of sex partners and adhering to treatment. Whether names were necessary or whether informed
p.000016: consent was required often framed debates as surveillance was extended, over
p.000016:
p.000016: Background
p.000017: 17
p.000017:
p.000017: the course of the twentieth century, to NCDs such as cancer, diabetes and stroke and to occupational exposures,
p.000017: substance use, road accidents, injuries, vaccination status and vaccine reactions (22).
p.000017:
p.000017: During the twentieth century, it was often people affected by a disease or condition who challenged the need for
p.000017: surveillance; but, just as often, the story of surveillance has been one in which affected groups have demanded
...

p.000021: disease control. Building on the original “Guidance on ethics of tuberculosis preven- tion, care and
p.000021: control” in 2010 (47), the “Ethics guidance for the implementation of the End TB Strategy” (48) addresses
p.000021: the most critical challenges to reducing the number of deaths from tuberculosis by 95% by 2030
p.000021: and the number of new cases by 90% between 2015 and 2035. The “Guidance for managing ethical issues in
p.000021: infectious disease outbreaks” (49) in 2016, in response to the outbreak of Ebola virus disease in West Africa
p.000021: in 2014–2015, underscored the importance of providing ethics guidance beyond “a spe- ciﬁc pathogen in
p.000021: isolation” to “cross-cutting ethical issues that apply to infectious disease outbreaks generally”.
p.000021:
p.000021: The three projects obviously have important continuity. All, for example, emphasize equity, justice, and the
p.000021: common good (sometimes expressed as “stewardship” or “reciproc- ity”). All stress the importance
p.000021: of respecting the dignity of persons (sometimes emphasiz- ing autonomy or privacy). Accountability and the
p.000021: importance of good governance either explicitly or implicitly informs all three. They also have
p.000021: relevant differences that reﬂect the subject of each. The tuberculosis guidelines, for example, address the
p.000021: problem of drug- resistant disease and thus emphasize the harm principle. The guidelines on infectious disease
p.000021: outbreaks, framed as they were by concern for groups in conditions of tremendous vulner- ability and the ways
p.000021: in which outbreaks can become crises, further ampliﬁed by fear and distrust, places greater emphasis on
p.000021: human rights. Given the need to make decisions in
p.000021:
p.000022: 22
p.000022: Framing the ethics of surveillance
p.000022:
p.000022:
p.000022:
p.000022: the face of uncertainty, they also stress utility, proportionality and efﬁcacy.
p.000022:
p.000022: The ethical considerations outlined above and repeated and ampliﬁed in the guidelines that follow are, in the
p.000022: estimation of this commit- tee, central to justiﬁcation of surveillance as a core activity, beyond outbreaks
p.000022: or infectious disease situations. They must be applied in situations that may vary in fundamental ways. The
p.000022: guidelines recognize that trade-offs of values are sometimes inevitable. The local tra- ditions and
p.000022: priorities in countries may some- times result in a different balance between competing values and
p.000022: priorities. It is important to stress, however, that not all trade-offs are morally acceptable. Local, national,
p.000022: or regional circumstances may be characterized by gross injustice or violations of human rights. In these
p.000022: contexts, rather than serving the common good, public health surveillance may be used as an
p.000022: instrument for violation of respect for persons, equity, and justice. In countries where sex work is a
...

p.000044: document.
p.000044:
p.000044: Sharing of surveillance data for research pur- poses requires appropriate safeguards, such as ethical oversight
p.000044: (see Guideline 2), anonymiza- tion, and data security. While the kind of ethi- cal review required for conducting
p.000044: research is not appropriate for conducting public health surveillance, surveillance data should be shared only
p.000044: for research projects that have been reviewed and approved by an appropriate
p.000044: research ethics committee or another appro- priate body, consistent with international and local
p.000044: standards on the ethical conduct of research. In making decisions about granting access to surveillance data,
p.000044: ethics committees should consider the potential public health impact of research (Is the research sufﬁciently
p.000044: important, or does it have, in the language of CIOMS, “social value”?), the risks to the sub- jects involved, the
p.000044: measures in place to protect privacy, and the importance and feasibility of seeking consent.
p.000044:
p.000044: Striking the appropriate balance between safeguards and research advancement will sometimes be
p.000044: challenging. One controversial way of sharing sensitive information on drug use has been to delete any
p.000044: information on substance use disorders from individual clinical records released to researchers. Such protec-
p.000044: tion in the name of privacy has become the centre of controversy in the context of a wide- reaching opioid
p.000044: epidemic. One group of critics has argued that this has left researchers “ﬂy- ing blind” (91).
p.000044:
p.000044: Researchers who have been provided with surveillance data should inform public health authorities about
p.000044: their ﬁndings. Before surveil- lance data are shared with researchers, there should be agreement about:
p.000044: appropriate data uses, restrictions on data re-sharing, adequate acknowledgement of the data source in publi- cations,
p.000044: and data destruction conditions at the end of the research phase.
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044: Guidelines
p.000045: 45
p.000045:
p.000045:
p.000045: Guideline 17. Personally identiﬁable surveillance data should not be shared with agencies that are likely to use them
p.000045: to take action against individuals or for uses unrelated to public health.
p.000045:
p.000045: While aggregate public health data may be widely shared with agencies outside the health sector
p.000045: and non-state actors responsible for public welfare, sharing personally identi- ﬁable data is a fundamentally
p.000045: different mat- ter. Access to such personal information by agencies responsible for national security, law
...

p.000049: 17. Wesolowski A, Stresman G, Eagle N, Stevenson J, Owaga C, Marube E, et al. Quantifying travel behavior for
p.000049: infectious disease research: a comparison of data from surveys and mobile phones. Sci Rep 2014;4:5678.
p.000049: 18. Lajous M, Danon L, Lopez-Ridaura R, Astley CM, Miller JC, Dowell SF, et al. Mobile messaging as surveillance
p.000049: tool during pandemic (H1N1) 2009, Mexico. Emerg Infect Dis 2010;16:1488–1489.
p.000049: 19. International health regulations. Geneva: World Health Organization; 1983.
p.000049:
p.000050: 50
p.000050: References
p.000050:
p.000050: 20. Report of the Ebola interim assessment panel. Geneva: World Health Organization; 2016
p.000050: (http://www.who.int/csr/resources/publications/ebola/report-by-panel.pdf?ua=1, accessed 19 December 2016).
p.000050: 21. Baldwin P. Contagion and the state in Europe, 1830–1930. Cambridge: Cambridge University Press; 1999.
p.000050: 22. Teutsch SM, Churchill RE. Principles and practice of public health surveillance. New York: Oxford University
p.000050: Press; 1994.
p.000050: 23. Pew Environmental Health Commission. Transition Report to the New Administration: Strengthen- ing Our Public
p.000050: Health Defenses Against Environmental Threats. Baltimore: Johns Hopkins School of Public Health; 2001.
p.000050: 24. Communicable diseases surveillance in Singapore 2015. Singapore: Ministry of Health; 2015.
p.000050: 25. Tuberculosis country proﬁle 2015, Singapore. Geneva: World Health Organization; 2015.
p.000050: 26. Matthys F, Van der Stuyft P, Van Deun A. Universal tuberculosis control targets: not so smart. Int J Tuberc Lung
p.000050: Dis 2009;13:923–924.
p.000050: 27. Kamal SM, Hossain A, Sultana S, Begum V, Haque N, Ahmed J, et al. Anti-tuberculosis drug
p.000050: resistance in Bangladesh: reﬂections from the ﬁrst nationwide survey. Int J Tuberc Lung Dis
p.000050: 2015;19:151–156.
p.000050: 28. Smith MJ, Silva DS. Ethics for pandemics beyond inﬂuenza: Ebola, drug-resistant tuberculosis, and anticipating
p.000050: future ethical challenges in pandemic preparedness and response. Monash Bioeth Rev 2015;33:130–147.
p.000050: 29. Lee LM, Thacker SB, St Louis ME, Teutsch SM. Principles and practice of public health surveillance. 3rd Edition.
p.000050: Oxford: Oxford University Press; 2010.
p.000050: 30. Fox RC. Advanced medical technology – social and ethical implications. Annu Rev Sociol
p.000050: 1976;2:231–268.
p.000050: 31. Fox RC, Swazey JP. Medical morality is not bioethics: medical ethics in China and the United States. New
p.000050: Brunswick, NJ: Transaction Books; 1988.
p.000050: 32. Rothman JD. Strangers at the bedside: a history of how law and bioethics transformed medical decision making.
p.000050: New York, NY: Basic Books; 1991.
p.000050: 33. Ackerman HT. Choosing between Nuremberg and the National Commission: balancing of moral principles in clinical
p.000050: research. In: The ethics of research involving human subjects: facing the 21st century. Frederick, MD: University
p.000050: Publishing Group; 1996.
p.000050: 34. International guidelines for ethical review of epidemiological studies. Geneva; Council for Interna- tional
p.000050: Organizations of Medical Sciences; 1991.
p.000050: 35. International ethical guidelines for epidemiological studies. Geneva; Council for International
p.000050: Organizations of Medical Sciences; 2009.
p.000050: 36. Hepple B, Nufﬁeld Council on Bioethics. Public health: ethical issues. London: Nufﬁeld Council on Bioethics;
p.000050: 2007.
...

Searching for indicator substance:

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p.000016: deportation). Ofﬁ- cial morbidity reports were usually protected against public disclosure by law,
p.000016: regulation, and practice. Surveillance was also the basis for population health measures, such as the
p.000016: pasteurization of milk, regulation of food and drug manufacture, housing reform and other measures that addressed
p.000016: the structural causes of disease. Resistance to such measures, largely on the part of independent and incor-
p.000016: porated businesses, was often framed as an issue of individual rights.
p.000016:
p.000016: Physicians, worried about interference with their patients and use of their time, often resented, resisted
p.000016: or simply ignored man- dates for reporting. But not all monitoring of morbidity and mortality
p.000016: required iden- tiﬁcation of cases by name. Reporting of sexually transmitted diseases, for
p.000016: example, was often done by code instead of name in industrialized countries (21). Contact tracing, of course,
p.000016: required names, but most physi- cians kept the index case anonymous when patients cooperated by providing
p.000016: the names of sex partners and adhering to treatment. Whether names were necessary or whether informed
p.000016: consent was required often framed debates as surveillance was extended, over
p.000016:
p.000016: Background
p.000017: 17
p.000017:
p.000017: the course of the twentieth century, to NCDs such as cancer, diabetes and stroke and to occupational exposures,
p.000017: substance use, road accidents, injuries, vaccination status and vaccine reactions (22).
p.000017:
p.000017: During the twentieth century, it was often people affected by a disease or condition who challenged the need for
p.000017: surveillance; but, just as often, the story of surveillance has been one in which affected groups have demanded
p.000017: the “right to be counted” (22). NCD surveil- lance, in contrast to infectious disease surveil- lance, has been
p.000017: underfunded and “woefully inadequate,” even in high-income countries (23). Workers exposed to toxic hazards
p.000017: and citizens vulnerable to environmental pollut- ants have sometimes joined social movements as a means of
p.000017: gaining both attention and the resources necessary for surveillance; however, the more common story is that chronic
p.000017: disease threats, particularly those of vulnerable popu- lations, remain invisible.
p.000017: Global crises often expose systemic challenges that are insufﬁciently addressed. Undocu- mented migrants
p.000017: with tuberculosis are still not included in statistics submitted to WHO by some countries (24, 25), but it
p.000017: would be a mistake to assume that the only challenges are the absence of surveillance or under-reporting. Tuberculosis
p.000017: surveillance data, for instance, were critical for determining levels of funding from the Global Fund to Fight
p.000017: AIDS, Tubercu- losis and Malaria. Surveillance staff sometimes
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: Industrial pollution. Moscow, Russia.
p.000017: Source: WHO /Sergey Volkov
p.000017:
p.000017:
p.000017:
...

p.000053: 83. Monitoring HIV impact using population-based surveys. Geneva: UNAIDS; 2015.
p.000053: 84. Bernstein AB, Sweeney MH. Public health surveillance data: legal, policy, ethical, regulatory, and practical
p.000053: issues. MMWR Suppl 2012;61:30–34.
p.000053: 85. Klingler C, Silva D, Schuermann C, Reis A, Saxena A, Strech D. Ethical issues in public health sur- veillance: a
p.000053: systematic review. BMC Public Health 2017; 4:17(1): 295
p.000053: 86. Dye C, Bartolomeos K, Moorthy V, Kieny MP. Data sharing in public health emergencies: a call to researchers.
p.000053: Bull World Health Organ 2016;94:158.
p.000053: 87. Langat P, Pisartchik D, Silva D, Bernard C, Olsen K, Smith M, et al. Is there a duty to share? Eth- ics of
p.000053: sharing research data in the context of public health emergencies. Public Health Ethics 2011;4:4–11.
p.000053: 88. Hripcsak G, Bloomrosen M, Flately Brennan P, Chute CG, Cimino J, Detmer DE, et al. Health data use,
p.000053: stewardship, and governance: ongoing gaps and challenges: a report from AMIA’s 2012 health policy meeting. J
p.000053: Am Med Inform Assoc 2014;21:204–211.
p.000053: 89. Geissbuhler A, Safran C, Buchan I, Bellazzi R, Labkoff S, Eilenberg K. Trustworthy reuse of health data: a
p.000053: transnational perspective. Int J Med Inform 2013;82:1–9.
p.000053: 90. Longo LD, Drazen MJ. Data sharing. N Engl J Med 2016;374:276–277.
p.000053: 91. Frakt AB, Bagley N. Protection or harm? Suppressing substance-use data. N Engl J Med
p.000053: 2015;372:1879–1881.
p.000053: 92. Sidel VW, Cohen HW, Gould RM. Good intentions and the road to bioterrorism preparedness. Am J Public Health
p.000053: 2001;91:716–718.
p.000053: 93. Fatima R, Harris RJ, Enarson DA, Hinderaker SG, Qadeer E, Ali K, et al. Estimating tuberculosis
p.000053: burden and case detection in Pakistan. Int J Tuberc Lung Dis 2014;18:55–60.
p.000053: 94. i-IHS. Fighting Ebola using drones. 2014 (http://i-hls.com/archives/40511).
p.000053: 95. Atherton KD. The week in drones: drones ﬁght Ebola, Iranian dogﬁghters, and more. Keeping up with the droneses.
p.000053: Popular Science, 26 September 2014.
p.000053: 96. Thermal imaging cameras ﬁghting the war on Ebola virus. Las Vegas, NV: Sierra Paciﬁc Innova-
p.000053: tions; 2014 (https://www.x20.org/thermal-imaging-cameras-war-ebola/).
p.000053: 97. Kristin BS. African drone stories. Behemoth J Civilisation 2015;8:73–96.
p.000053:
p.000053:
p.000054: 54
p.000054: References
p.000054:
p.000054: 98. Metcalf J, Keller E, Boyd D. Perspectives on big data, ethics, and society. Council for Big
p.000054: Data, Ethics and Society; 2016 (http://bdes.datasociety.net/wp-content/uploads/2016/05/Perspectives-
p.000054: on-Big-Data.pdf).
p.000054: 99. Vayena E, Salathe M, Madoff LC, Brownstein JS. Ethical challenges of big data in public health. PLoS Comput Biol
p.000054: 2015;11:e1003904.
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Health / HIV/AIDS

Searching for indicator HIV:

(return to top)
p.000009:
p.000009: Policy change
p.000009:
p.000009: Source: A.A. Haghdoost
p.000009: Structural intervention
p.000009: Case or epidemic detection
p.000009: Testing of hypotheses
p.000009: Implementation research
p.000009: Quality assurance
p.000009:
p.000010: 10
p.000010: Introduction
p.000010:
p.000010:
p.000010:
p.000010: shared with populations and policy-makers in a timely, appropriate manner.
p.000010:
p.000010: Yet surveillance has been the subject of some- times bitter controversy. Public health sur- veillance may
p.000010: limit not only privacy but also other civil liberties. For example, surveillance may trigger mandatory
p.000010: quarantine, isolation, or seizure of property during an epidemic (2). When surveillance involves
p.000010: name-based reporting (that is, reporting by name), it can, to the extent that populations are made aware, trigger
p.000010: profound concern about intrusions on privacy, discrimination, and stigmatization. Name-based reporting can also
p.000010: seriously harm people and property, as is seen when mob reactions supersede care, compassion and the effective
p.000010: rule of law. Concern is compounded in the absence of trust that the public health system will keep names
p.000010: secure or will release aggregated data and related information (referred to simply as “data” from
p.000010: this point forward, as records contain information that varies in type and scope) in a sensitive manner (2). In
p.000010: some countries, the HIV/AIDS pandemic sparked controversy about tracking by name those carrying the virus, but,
p.000010: even when con- ﬁdentiality was assured, when details of risky behaviour and affected populations became
p.000010: public, groups like gay sex workers and inject- ing drug users experienced social harm such as discrimination
p.000010: and stigmatization. Because of these concerns, the HIV/AIDS epidemic spurred ethical and regulatory
p.000010: guidelines at both national and international levels that could be used in planning, collecting and then
p.000010: using personal and aggregated data.
p.000010:
p.000010: Just as often, however, failure to conduct public health surveillance has generated political and ethical controversy
p.000010: because of concern that “what doesn’t get counted doesn’t count”. Environmental and occupational
p.000010: health advocates, for example, have long made this argument. Even for events deemed critically
p.000010: important, yawning gaps in surveillance remain. The 2014–2016 Ebola virus disease crisis dramatically
p.000010: underscored the potentially devastating consequences of a lack of capacity to monitor the incidence and spread of
p.000010: disease. An effective public health or clinical response can be seriously hampered by the absence of such
p.000010: data. But if Ebola virus disease is a high- proﬁle example of the costs of inadequate systems and the
p.000010: importance of support from the global community for vital surveillance, many other occupational and
p.000010: environmental exposures – like asthma, silicosis and condi- tions related to exposure to arsenic or lead
p.000010: – go uncounted in both high- and low-income countries. Some commentators have argued that, too often, only
p.000010: when a public health crisis becomes a “threat to international peace and security” does surveillance become a
...

p.000021: outbreaks, framed as they were by concern for groups in conditions of tremendous vulner- ability and the ways
p.000021: in which outbreaks can become crises, further ampliﬁed by fear and distrust, places greater emphasis on
p.000021: human rights. Given the need to make decisions in
p.000021:
p.000022: 22
p.000022: Framing the ethics of surveillance
p.000022:
p.000022:
p.000022:
p.000022: the face of uncertainty, they also stress utility, proportionality and efﬁcacy.
p.000022:
p.000022: The ethical considerations outlined above and repeated and ampliﬁed in the guidelines that follow are, in the
p.000022: estimation of this commit- tee, central to justiﬁcation of surveillance as a core activity, beyond outbreaks
p.000022: or infectious disease situations. They must be applied in situations that may vary in fundamental ways. The
p.000022: guidelines recognize that trade-offs of values are sometimes inevitable. The local tra- ditions and
p.000022: priorities in countries may some- times result in a different balance between competing values and
p.000022: priorities. It is important to stress, however, that not all trade-offs are morally acceptable. Local, national,
p.000022: or regional circumstances may be characterized by gross injustice or violations of human rights. In these
p.000022: contexts, rather than serving the common good, public health surveillance may be used as an
p.000022: instrument for violation of respect for persons, equity, and justice. In countries where sex work is a
p.000022: criminal offense, for example, HIV surveillance can be used for oppression.
p.000022: Likewise, an occupational disease surveil- lance system that results in routine dismissal of workers
p.000022: affected by silicosis, black lung, or asbestosis would be unacceptable. Appeal to “trade-offs” under such
p.000022: circumstances could well be a pretext for further oppression and should be guarded against.
p.000022:
p.000022: The State is a source of both intrusion and protection. Some disease burdens and forms of health
p.000022: oppression simply cannot be made visible without State-sponsored surveillance (50). On the one hand,
p.000022: surveillance makes public health interventions to address inequi- ties possible. On the other hand,
p.000022: surveillance may be used to impose additional burdens on those who are already disadvantaged. The only assurance
p.000022: that surveillance will amount to neither privilege nor punishment is atten- tion to the ethical
p.000022: considerations described above: both burdens and beneﬁts should be critically weighed and then fairly
p.000022: distributed in a transparent manner in which States are held accountable.
p.000022:
p.000022:
p.000022:
p.000022:
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p.000022:
p.000022: Framing the ethics of surveillance
p.000023: 23
p.000023:
p.000023: IV. Guidelines
p.000023: As a consequence of the development of ethi- cal norms for the conduct of research during the past few
...

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p.000025: Interior view: a nurse is examining two young children in the dining area of the home; the mother is standing to the
p.000025: left; further to the left is a large stove situated next to a ﬁreplace.
p.000025: Source: The National Library of Medicine
p.000025:
p.000025:
p.000025:
p.000026: 26
p.000026: Guidelines
p.000026:
p.000026:
p.000026:
p.000026: Guideline 2. Countries have an obligation to develop appropriate, effective mechanisms to ensure ethical surveillance.
p.000026:
p.000026: Public health surveillance has inherent beneﬁts for the functioning of the public health sys- tem, as well as
p.000026: risks. Countries should have an appropriate, effective mechanism for ensur- ing adherence to ethical standards
p.000026: in both emergency and non-emergency situations. Decisions about changing an established sur- veillance
p.000026: system can pose important ethical challenges. Examples of changes that may require ethical scrutiny
p.000026: include: collecting data elements that reveal stigmatized behaviour; adding new elements of data collection, such
p.000026: as measurements of CD4 counts as part of routine HIV/AIDS surveillance; adopting new uses for existing
p.000026: surveillance data, such as for case management or contact tracing; or using public health surveillance data for
p.000026: commercial or security purposes.
p.000026:
p.000026: In the case of research, review committees monitor adherence to ethics standards. Such an independent,
p.000026: impartial oversight mecha- nism allows for close scrutiny and can ensure that relevant protection is
p.000026: in place. These guidelines do not recommend mechanisms that mirror those that have emerged in the
p.000026: context of research ethics. However, public health surveillance is currently not subject to routine
p.000026: oversight. It is the obligation of coun- tries to decide the most appropriate processes for identifying and
p.000026: addressing the ethical issues that arise in public health surveillance.
p.000026:
p.000026: Box 1 provides some examples of existing mechanisms. Any mechanism or process should ensure
p.000026: ethical implementation of sur- veillance without itself becoming an obstacle to achieving the larger public
p.000026: health goal. (We address the nexus of surveillance and research in Guideline 16.)
p.000026: Such mechanisms of ethical oversight should effectively identify the risks and ben- eﬁts of
p.000026: surveillance and suggest measures to enhance the beneﬁts, minimize the risks and ensure appropriate
p.000026: weighing of the com- mon good, equity, and respect for persons. Oversight should be continuous, and any
...

p.000035: burdens, such as discrimination and stigma, attributable to surveillance activities or ﬁndings. For
p.000035: example, refugee groups and undocumented migrants with a higher disease burden may be seen, wrongly, as the cause of
p.000035: disease outbreaks. Similarly, workers with an occupational disease, such as silicosis, who lack access
p.000035: to adequate legal support may
p.000035:
p.000035: be dismissed from work rather than receiving treatment or compensation. Wherever pos- sible, susceptible
p.000035: groups should be identiﬁed before surveillance activities begin in order to minimize the risk for harm. In
p.000035: surveillance pro- grammes, there should be constant monitor- ing for (further) harm to those in conditions of
p.000035: particular vulnerability. When harm does occur, a mitigation strategy should be put in place (see Guideline 8).
p.000035:
p.000035:
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p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: The HIV oral test on a brothel bed in Belém do Pará, Brazil.
p.000035: Source: Laura Murray
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000036: 36
p.000036: Guidelines
p.000036:
p.000036:
p.000036:
p.000036: Guideline 10. Governments and others who hold surveillance data must ensure that identiﬁable data are appropriately
p.000036: secured.
p.000036:
p.000036: Responsible data collection and sharing prac- tices should ensure the security of the data collected in order to
p.000036: respect persons and safe- guard the privacy and other interests of the individuals and communities concerned
p.000036: (50). Every effort must be made to secure records to prevent unauthorized disclosure. Security is
p.000036: different from privacy and conﬁdential- ity, yet it is an essential component of each. “Security” in
p.000036: this context consists of opera- tional and technological safeguards to protect personal data from unauthorized
p.000036: access or disclosure. Maintaining information security is not fool-proof, as electronic databases can be inﬁltrated.
p.000036:
p.000036: Governments and others who hold surveil- lance data must take appropriate techni- cal and
p.000036: organizational steps to protect data
p.000036: against accidental or unauthorized access, destruction, loss, use or disclosure, whether the data are
p.000036: collected and stored in paper or electronic (digital) format. All personnel with access to public
...

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p.000036:
p.000036:
p.000036:
p.000036: Staff at the Medical Records Ofﬁce sort through patient ﬁles at Karapitayam Hospital, Galle.
p.000036: Source: WHO / SEARO /Gary Hampton
p.000036:
p.000036:
p.000036: Guidelines
p.000037: 37
p.000037:
p.000037:
p.000037: Guideline 11. Under certain circumstances, the collection of names or identiﬁable data is justiﬁed.
p.000037:
p.000037: In some instances, the collection of names or identiﬁable data is both technically and ethically
p.000037: imperative. Effective surveillance may require the de-duplication of records (that is, avoidance of
p.000037: double-counting, which can lead to overestimates of incidence or prevalence).
p.000037:
p.000037:
p.000037:
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p.000037:
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p.000037:
p.000037:
p.000037:
p.000037:
p.000037: Names and addresses of people with dread diseases were regularly reported in newspapers until the 1960s.
p.000037: Source: New York Times, July 22, 1916. Public Domain.
p.000037:
p.000037: Names and other unique identiﬁers (social security numbers, identity card numbers) may also be
p.000037: essential for longitudinal surveil- lance registers, which require correct linkage of records on the same
p.000037: individual and/or their relatives or contacts over time. Unique identi- ﬁers may likewise be required to link data from
p.000037: different sources (for example, registries of tuberculosis and HIV, or birth defects and Zika virus
p.000037: infection). Critically, names and other speciﬁc identiﬁers are required for outbreak investigation or
p.000037: case follow-up and contact tracing (e.g. to identify and offer testing and treatment to the sexual and
p.000037: needle-sharing partners of people with sexually transmitted infections).
p.000037:
p.000037: There has been disagreement over whether unique identiﬁers can be used instead of names. Unique
p.000037: identiﬁers are expensive to cre- ate and, if constructed in a fashion that allows accurate data linkage, could
p.000037: easily be linked back to names. Some countries experimented with coded reporting for HIV infection before ultimately
p.000037: adopting nominative systems. While such systems were initially the only politically viable solution, they were
p.000037: abandoned when they were found not to meet federal funding standards for reliability and validity. However,
p.000037: technological advances have created new possibilities. Digital data can be scrambled and encrypted
p.000037: into unique identiﬁers that are perhaps impossible to trace back to individu- als. Good governance requires that
p.000037: the trade- offs of using names as opposed to unique identiﬁers or encryption be the subject of
p.000037: continuing, transparent, public discussion that takes into account surveillance system require- ments, changing
p.000037: technical capacity, risks, and evolving norms with regard to unique identi- ﬁers (which may become ubiquitous)
p.000037: and their legitimate use (75).
p.000037:
p.000037: Another important consideration in the col- lection of data is the geographical location of
p.000037:
p.000038: 38
p.000038: Guidelines
p.000038:
p.000038:
p.000038:
p.000038: individuals, which can be an indirect identiﬁer. It is ethically important to prioritize conﬁdenti- ality during the
p.000038: collection of geolocation data and also for the release or sharing of global positioning system data,
p.000038: which should be geo-masked to minimize risk of disclosure, pre- serving spatial distribution but preventing iden-
p.000038: tiﬁcation of cluster-exact geo-coordinates (76).
p.000038: When the collection of names or unique identiﬁers is considered imperative, this requirement
...

p.000040:
p.000040: The communication of knowledge is a double- edged sword: on the one hand, knowledge may clearly empower; on
p.000040: the other, it may lead to injury, stigmatization or discrimination. A decision not to broadly publish data
p.000040: might be justiﬁed in exceptional circumstances, when doing so might cause signiﬁcant harm. Likewise,
p.000040: if the affected population is so small (for example, cases of very rare cancers) that identiﬁcation of
p.000040: individuals, however inadver- tent, might be inevitable, communication can be limited to preserve privacy (79).
p.000040:
p.000040: Decision-makers must also weigh the harm that could result if affected communities are not informed and
p.000040: thus deprived of knowl- edge and the ability to take action to reduce the risks and the capacity to
p.000040: engage in advo- cacy (see Guideline 13). Those responsible for public health have an afﬁrmative duty to miti- gate
p.000040: the burdens that communication might impose on individuals or groups that are more susceptible to harm or
p.000040: injustice.
p.000040:
p.000040: There is continuing debate about when, if ever, those responsible for the design and conduct of
p.000040: surveillance are ethically obliged to inform the subjects of surveillance about individual results or
p.000040: diagnosis and then refer them to the appropriate service (80). For example, in the early days of the
p.000040: HIV epidemic, when treatment was not avail- able, blinded seroprevalence studies were considered
p.000040: ethically acceptable. In these population-based surveys, HIV status was
p.000040:
p.000040: Guidelines
p.000041: 41
p.000041:
p.000041: not communicated to the study participants. With advances in HIV diagnosis and manage- ment, however, the ethical
p.000041: consensus shifted (81). Guidelines now recommend that sur- veillance systems report results back to con-
p.000041: senting individuals (80, 82, 83). Guidelines also recommend that, after returning results to individuals,
p.000041: those with positive results be referred for proper clinical evaluation, treat- ment and follow-up at
p.000041: nearby health facili- ties. The guidelines also encourage partner testing (76) and referral for
p.000041: psychosocial
p.000041: support. This example underscores the importance of surveillance systems having an engaged
p.000041: oversight body to deal with such issues and make changes on the basis of new evidence or emerging best practices in
p.000041: other jurisdictions (Guideline 2).
p.000041: Relevant ethical considerations in making a judgement about returning information to individuals include
p.000041: feasibility, the possibility of taking action and the potential beneﬁt to the individual.
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: Map of parasitic disease epidemic area in China at the National Institute of Parasitic Diseases in
p.000041: Shanghai, China. 16 May 2010.
p.000041: Source: WHO / TDR /Simon Lim
p.000041:
p.000041:
p.000041:
p.000041:
p.000042: 42
p.000042: Guidelines
p.000042:
p.000042:
p.000042:
p.000042: Guideline 14. With appropriate safeguards and justiﬁcation, those responsible
p.000042: for public health surveillance have an obligation to share data with other national and international public health
p.000042: agencies.
p.000042:
p.000042: For a public health surveillance system to be effective, equitable, and promote the com- mon good, it must
p.000042: be capable of receiving and linking data from public agencies responsible for public health. For example, because
p.000042: of the stringent data security that has surrounded HIV surveillance, there have been situations in which data on
p.000042: HIV status have not been shared with those responsible for tuberculosis surveil- lance, obviating systematic
p.000042: identiﬁcation of cases with co-infection. Public health work- ers cannot respond appropriately to swiftly
p.000042: changing infectious diseases in real time or take appropriate action in the case of chronic conditions without
p.000042: access to appropriate data. The same is true of occupational exposures. There have been examples in which
p.000042: agencies responsible for tracking occupational diseases have not shared data (despite the absence of a
p.000042: prohibition) with agencies responsible for
p.000042: worker protection and workplace regulation (23). A review of the literature indicated that much of the
p.000042: failure to share information is due to poor planning rather than safety concerns. Programmes have experienced
p.000042: technical dif- ﬁculties in sharing data, some data requiring conversion (e.g. birth year to age) in order
p.000042: to link databases (84, 85).
p.000042:
p.000042: Public health systems should establish frame- works to enable secure sharing of data (see Guideline 10)
p.000042: with other national and inter- national agencies. Early collaboration to align processes in order to avoid
p.000042: foregoing beneﬁts or wasting resources is ethically warranted. Ethical frameworks for sharing should respect
p.000042: persons by ensuring that only the data required to fulﬁl a sufﬁciently important, legitimate public health
p.000042: purpose are shared, that data are not shared more broadly than necessary, and that data are not subsequently
...

p.000047: surveillance mean that any set of ethical guidelines must cross boundaries – not only national boundaries
p.000047: but lines that have traditionally separated the public from the private (93).
p.000047:
p.000047: The problem of blurred boundaries has become even more complicated in the era of big data. By
p.000047: “big data”, we refer to both the increased volume of data that can now be col- lected and stored, usually in digital
p.000047: form, and the computational power available to pro- cess it rapidly. The ubiquitous use of personal
p.000047: computers, smartphones, wearable devices, closed-circuit cameras, genetic sequencers, semi-autonomous
p.000047: drones, and other technol- ogies means that we produce a steady stream of digital data.
p.000047:
p.000047: A data-centric technological revolution has generated great enthusiasm about the emerg- ing potential
p.000047: beneﬁts of mining electronic health records, genomic data and other biolog- ical materials, social media
p.000047: communications, satellite imagery and other digital datasets to identify emerging disease threats,
p.000047: interrupt foodborne disease outbreaks and improve col- laboration among public health organizations. Drones have been
p.000047: hailed as a “game changer” in disease surveillance. Some have argued that
p.000047:
p.000047: drones could uniquely pinpoint an outbreak by identifying a rapid population exodus from a disease zone
p.000047: (94-96). Others are scepti- cal about “drone utopianism”, arguing that drone surveillance should not be a
p.000047: health pri- ority for countries with limited resources (97).
p.000047:
p.000047: Other new technologies, such as phylogenetic analysis of HIV, hold similar promise and peril, involving
p.000047: both use and failure to use data. Indi- viduals who generate information through per- sonal devices are probably
p.000047: unaware of the range of potential subsequent uses of their data. It is unclear whether the private sector has an obli-
p.000047: gation to share those data with public health or government ofﬁcials. Custodians of such data should be aware
p.000047: of the issues that could arise and be involved in discussions about legitimate data-sharing and the steps that
p.000047: should be taken to monitor risk and prevent harm.
p.000047:
p.000047: There have been mounting calls for addi- tional research and ethical analysis on issues related to
p.000047: big data (98). The place of big data and digital disease detection in the public health
p.000047: surveillance landscape remains undetermined, and additional work should be done on privacy and anonymity, the
p.000047: inte- gration of public and private data sets and issues of data validity and reliability (99). The Deputy
p.000047: Director for Surveillance and Epide- miology at the Bill & Melinda Gates Foun- dation recently sounded an
p.000047: important call: “We need ethicists to be working on some of these problems.”
p.000047:
p.000047: In order to remain proactive rather than reac- tive, addressing these issues must represent the next frontier.
p.000047: While these guidelines are a place to start in addressing issues at the inter- section of surveillance and big data,
p.000047: the chal- lenges of this swiftly changing environment should be subject to continuing analysis and ethical
p.000047: monitoring. This challenge must be taken up by the global community.
p.000047:
...

p.002008: health studies ethical? Dissolving the boundary between research and practice. BMC Med Ethics 2014;15:61.
p.002008: 53. Graham J, Amos B, Plumptre T. Principles for Good Governance in the 21st Century: Policy Brief
p.002008: No. 15. Ottawa: Institute on Governance, 1993. Available at: http://iog.ca/wp-content/
p.002008: uploads/2012/12/2003_August_policybrief151.pdf
p.002008: 54. United Nations Development Programme. Chapter 8: Governance Principles, Institutional Capac- ity, and Quality.
p.002008: In Towards human resilience: sustaining MDG progress in an age of economic uncertainty. New York: United
p.002008: Nations Development Programme, 2011. Available at: http://www.
p.002008: undp.org/content/undp/en/home/librarypage/poverty-reduction/inclusive_development/towards_
p.002008: human_resiliencesustainingmdgprogressinanageofeconomicun.html54.
p.002008: 55. Expert information. Tokyo: Japan Ministry of Health, Labour and Welfare (http://www.mhlw.go.jp/
p.002008: bunya/kenkou/kekkaku-kansenshou11/dl/01_kansensho.pdf).
p.002008:
p.002008:
p.000052: 52
p.000052: References
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p.000052: 56. German RR, Lee LM, Horan JM, Milstein RL, Pertowski CA, Waller MN, et al. Updated guidelines for evaluating
p.000052: public health surveillance systems: recommendations from the Guidelines Working Group. MMWR Recomm Rep 2001;50:1-35;
p.000052: quiz CE1-7.
p.000052: 57. Brock DW, Wikler D. Ethical challenges in long-term funding for HIV/AIDS. Health Aff (Millwood)
p.000052: 2009;28:1666–1676.
p.000052: 58. Daniels N. Accountability for reasonableness: establishing a fair process for priority setting is easier than
p.000052: agreeing on principles. BMJ 2000;321:1300–1301.
p.000052: 59. O’Neill O. Trust, trustworthiness and transparency. Brussels: European Foundation Centre; 2015.
p.000052: 60. WHO framework convention on tobacco control. Geneva: World Health Organization; 2003.
p.000052: 61. United Nations framework convention on climate change. New York, NY: United Nations; 2015.
p.000052: 62. Calain P. From the ﬁeld side of the binoculars: a different view on global public health surveillance. Health
p.000052: Policy Plan 2007;22:13–20.
p.000052: 63. Gostin L, Friedman EA. Ebola: a crisis in global health leadership. Lancet 2014;384:1323–1325.
p.000052: 64. Bioethics for Every Generation: The Presidential Commission for the Study of Bioethical Issues
p.000052: [Available from: https://bioethicsarchive.georgetown.edu/pcsbi/node/5678.html]
p.000052: 65. Guide to Democratic Deliberation for Public Health Professionals. Presidential Commission for the Study of
p.000052: Bioethical Issues; 2016.
p.000052: 66. Deliberative Scenarios: Presidential Commission for the Study of Bioethical Issues; 2016 [Available from:
p.000052: https://bioethicsarchive.georgetown.edu/pcsbi/node/5707.html]
p.000052: 67. World Wide Views On Climate And Energy Results Report, World Wide Views on Cli- mate
p.000052: and Energy; 2015. [Available from: http://climateandenergy.wwviews.org/wp-content/
p.000052: uploads/2015/09/WWviews-Result-Report_english_low.pdf]
p.000052: 68. Use of quarantine to prevent transmission of severe acute respiratory syndrome. Morbid Mortal Wkly Rep
p.000052: 2003;52:680–683.
p.000052: 69. Gostin LO, Bayer R, Fairchild LA. Ethical and legal implications posed by severe acute respira-
p.000052: tory syndrome: implications for the control of severe infectious disease threats. J Am Med Assoc 2003;290:3229–3237.
p.000052: 70. MacQueen KM, McLellan E, Metzger DS, Kegeles S, Strauss RP, Scotti R, et al. What is community? An
p.000052: evidence-based deﬁnition for participatory public health. Am J Public Health 2001;91:1929–1938.
p.000052: 71. Tindana PO, Singh JA, Tracy CS, Upshur RE, Daar AS, Singer PA, et al. Grand challenges in global health:
p.000052: community engagement in research in developing countries. PLoS Med 2007;4:e273.
p.000052: 72. Zakus JD, Lysack CL. Revisiting community participation. Health Policy Plan 1998;13:1–12.
p.000052: 73. Graeme L, Stevens L, Jones KH, Dobbs C. A review of evidence relating to harm resulting from
p.000052: uses of health and biomedical data. Oxford: Nufﬁeld Council on Bioethics; 2015.
p.000052: 74. Barrett DH, Ortmann LH, Dawson A, Saenz C, Reis A, Bolan G. Public health ethics: cases spanning the globe.
p.000052: Springer Open; 2016.
p.000052: 75. Considerations and guidance for countries adopting national health identiﬁers. Geneva: UNAIDS; 2014
p.000052: (http://www.unaids.org/sites/default/ﬁles/media_asset/JC2640_nationalhealthidentiﬁers_ en.pdf).
p.000052: 76. Monitoring HIV impact using population-based surveys. Geneva: UNAIDS; 2015.
p.000052:
p.000052: References
p.000053: 53
p.000053:
p.000053: 77. Rose G. Sick individuals and sick populations. Int J Epidemiol 1985;14:32–38.
p.000053: 78. Upshur RE, Morin B, Goel V. The privacy paradox: laying Orwell’s ghost to rest. Can Med Assoc J
p.000053: 2001;165:307–309.
p.000053: 79. Davison WL, Kelley RA. ICES report – 2014 prescribed entity review. Toronto, Ontario: Institute for Clinical
p.000053: Evaluative Sciences; 2014.
p.000053: 80. Baggaley R, Johnson C, Garcia Calleja JM, Sabin K, Obermeyer C, Taegtmeyer M, et al. Routine feedback of test
p.000053: results to participants in clinic- and survey-based surveillance of HIV. Bull World Health Organ 2015;93:352–355.
p.000053: 81. Fairchild LA, Ronald. Unlinked anonymous testing for HIV in developing countries: a new ethical consensus.
p.000053: Public Health Rep 2012;127:115–118.
p.000053: 82. Consolidated guidelines on HIV testing services. Geneva: World Health Organization; 2015.
p.000053: 83. Monitoring HIV impact using population-based surveys. Geneva: UNAIDS; 2015.
p.000053: 84. Bernstein AB, Sweeney MH. Public health surveillance data: legal, policy, ethical, regulatory, and practical
p.000053: issues. MMWR Suppl 2012;61:30–34.
p.000053: 85. Klingler C, Silva D, Schuermann C, Reis A, Saxena A, Strech D. Ethical issues in public health sur- veillance: a
p.000053: systematic review. BMC Public Health 2017; 4:17(1): 295
p.000053: 86. Dye C, Bartolomeos K, Moorthy V, Kieny MP. Data sharing in public health emergencies: a call to researchers.
p.000053: Bull World Health Organ 2016;94:158.
p.000053: 87. Langat P, Pisartchik D, Silva D, Bernard C, Olsen K, Smith M, et al. Is there a duty to share? Eth- ics of
p.000053: sharing research data in the context of public health emergencies. Public Health Ethics 2011;4:4–11.
p.000053: 88. Hripcsak G, Bloomrosen M, Flately Brennan P, Chute CG, Cimino J, Detmer DE, et al. Health data use,
p.000053: stewardship, and governance: ongoing gaps and challenges: a report from AMIA’s 2012 health policy meeting. J
p.000053: Am Med Inform Assoc 2014;21:204–211.
p.000053: 89. Geissbuhler A, Safran C, Buchan I, Bellazzi R, Labkoff S, Eilenberg K. Trustworthy reuse of health data: a
p.000053: transnational perspective. Int J Med Inform 2013;82:1–9.
p.000053: 90. Longo LD, Drazen MJ. Data sharing. N Engl J Med 2016;374:276–277.
p.000053: 91. Frakt AB, Bagley N. Protection or harm? Suppressing substance-use data. N Engl J Med
p.000053: 2015;372:1879–1881.
...

Searching for indicator hiv/aids:

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Health / Healthy People

Searching for indicator volunteers:

(return to top)
p.000039:
p.000039: Whether or not consent is sought, informa- tion about the nature and purpose of surveil- lance and about any risk
p.000039: for harm should be publicly accessible (see Guideline 13). Rel- evant protection and adequate governance
p.000039: mechanisms (Guideline 2 and the discussion on good governance in section III), appropri- ate ethics training
p.000039: (guidelines 2 and 6) and data security (Guideline 10) will enhance trust in surveillance systems
p.000039: and ensure protection.
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000040: 40
p.000040: Guidelines
p.000040:
p.000040:
p.000040:
p.000040: Guideline 13. Results of surveillance must be effectively communicated to relevant target audiences.
p.000040:
p.000040: There is compelling, widely accepted moral justiﬁcation for dissemination of the results of surveillance to
p.000040: relevant target audiences, although it is not a substitute for ameliora- tive action on the part of those
p.000040: responsible for surveillance. At the local level, relevant target audiences include the community, community ofﬁcials
p.000040: and opinion leaders, health care pro- viders (doctors, nurses, health care workers), policy-makers, health
p.000040: advocates and health volunteers. The relevant target audiences may also include Member States, national
p.000040: and international agencies, and NGOs.
p.000040:
p.000040: Although CIOMS guidelines are focused on research, they stress the importance of communicating
p.000040: results, both positive and negative, to “promote and enhance pub- lic discussion”. Without
p.000040: dissemination, the social value of the work cannot be realized. In the absence of appropriate
p.000040: dissemination, those who collect data, including surveillance data, might rightly be accused of exploiting the
p.000040: individuals and groups whose health data they collect and analyse in the name of the common good. The
p.000040: Nufﬁeld Council on Bio- ethics argued that, for dissemination to be considered appropriate, those from
p.000040: whom data are collected should understand the implications of the results for both health care and prevention
p.000040: (35).
p.000040:
p.000040: Surveillance ﬁndings should be communicated concisely in a way that is understandable to a lay audience and
p.000040: sensitive to community concerns (see Guideline 7). Communica- tion should not seed panic but alert
p.000040: people to relevant risks in a sensible manner. Mass mailings, toll-free information hotlines, social media,
p.000040: newspapers, seminars, and public meetings are all possible means for conveying
p.000040: surveillance information to the communities from which data were collected and analysed and to the public.
p.000040: In resource-limited set- tings, street theatre, and folk art and other community-based methods can be
...

Health / Physically Ill

Searching for indicator sick:

(return to top)
p.000033: responsible for conduct- ing surveillance should remain alert to the possibility that harm can be
p.000033: caused to both individuals and communities (Table 2).
p.000033:
p.000033: This does not mean that surveillance should not be conducted. Rather, those conducting surveillance have
p.000033: an obligation to identify potential harm beforehand, to monitor for harm during and after surveillance
p.000033: and to put in place processes to mitigate harm. Without continuous monitoring, mitigation is impos- sible.
p.000033: This is vital, not only because it is wrong to cause unnecessary harm, but also because harm – to both
p.000033: individuals and communi- ties, such as loss of property value or tourism dollars – may also damage public
p.000033: trust in the programme and in public health in general. (See guidelines 5, 12 and 13 and the discus-
p.000033: sion of good governance in section III.)
p.000033:
p.000033: In some instances, countries have provided compensation for the harm that might
p.000033:
p.000033: inevitably accompany surveillance. In the con- text of SARS, Chinese Taipei gave people who were quarantined the
p.000033: equivalent of US$ 147 (68). Basic welfare beneﬁts or sick pay for those deprived of work as a result
p.000033: of surveil- lance are other possibilities. The possibility of compensation should not, however, pose a
p.000033: barrier to surveillance (69).
p.000033:
p.000033: There are many different types of harm: eco- nomic, legal, psychological, social (and reputa- tional) and
p.000033: physical. All should be considered in relation to surveillance (70-72). For example, a migrant or a person in another
p.000033: disadvantaged group may be identiﬁed as being at higher risk for an infectious disease through surveillance, and this
p.000033: could lead to stigmatization of the group. Relevant information must be handled very carefully: reputations can
p.000033: quickly be dam- aged, with devastating results across a spec- trum that may include not-yet-documented
p.000033: types of harm (73). Various moral values and ethical principles should be weighed and bal- anced against
p.000033: each other and a judgement made about fair distribution of burdens and beneﬁts in different surveillance
p.000033: initiatives or systems in a transparent way (see discussions of equity and good governance in section III).
p.000033:
p.000033: When, despite all efforts to mitigate harm, surveillance entails a predictable risk for harm (stigmatization,
...

p.000052: 2003;52:680–683.
p.000052: 69. Gostin LO, Bayer R, Fairchild LA. Ethical and legal implications posed by severe acute respira-
p.000052: tory syndrome: implications for the control of severe infectious disease threats. J Am Med Assoc 2003;290:3229–3237.
p.000052: 70. MacQueen KM, McLellan E, Metzger DS, Kegeles S, Strauss RP, Scotti R, et al. What is community? An
p.000052: evidence-based deﬁnition for participatory public health. Am J Public Health 2001;91:1929–1938.
p.000052: 71. Tindana PO, Singh JA, Tracy CS, Upshur RE, Daar AS, Singer PA, et al. Grand challenges in global health:
p.000052: community engagement in research in developing countries. PLoS Med 2007;4:e273.
p.000052: 72. Zakus JD, Lysack CL. Revisiting community participation. Health Policy Plan 1998;13:1–12.
p.000052: 73. Graeme L, Stevens L, Jones KH, Dobbs C. A review of evidence relating to harm resulting from
p.000052: uses of health and biomedical data. Oxford: Nufﬁeld Council on Bioethics; 2015.
p.000052: 74. Barrett DH, Ortmann LH, Dawson A, Saenz C, Reis A, Bolan G. Public health ethics: cases spanning the globe.
p.000052: Springer Open; 2016.
p.000052: 75. Considerations and guidance for countries adopting national health identiﬁers. Geneva: UNAIDS; 2014
p.000052: (http://www.unaids.org/sites/default/ﬁles/media_asset/JC2640_nationalhealthidentiﬁers_ en.pdf).
p.000052: 76. Monitoring HIV impact using population-based surveys. Geneva: UNAIDS; 2015.
p.000052:
p.000052: References
p.000053: 53
p.000053:
p.000053: 77. Rose G. Sick individuals and sick populations. Int J Epidemiol 1985;14:32–38.
p.000053: 78. Upshur RE, Morin B, Goel V. The privacy paradox: laying Orwell’s ghost to rest. Can Med Assoc J
p.000053: 2001;165:307–309.
p.000053: 79. Davison WL, Kelley RA. ICES report – 2014 prescribed entity review. Toronto, Ontario: Institute for Clinical
p.000053: Evaluative Sciences; 2014.
p.000053: 80. Baggaley R, Johnson C, Garcia Calleja JM, Sabin K, Obermeyer C, Taegtmeyer M, et al. Routine feedback of test
p.000053: results to participants in clinic- and survey-based surveillance of HIV. Bull World Health Organ 2015;93:352–355.
p.000053: 81. Fairchild LA, Ronald. Unlinked anonymous testing for HIV in developing countries: a new ethical consensus.
p.000053: Public Health Rep 2012;127:115–118.
p.000053: 82. Consolidated guidelines on HIV testing services. Geneva: World Health Organization; 2015.
p.000053: 83. Monitoring HIV impact using population-based surveys. Geneva: UNAIDS; 2015.
p.000053: 84. Bernstein AB, Sweeney MH. Public health surveillance data: legal, policy, ethical, regulatory, and practical
p.000053: issues. MMWR Suppl 2012;61:30–34.
p.000053: 85. Klingler C, Silva D, Schuermann C, Reis A, Saxena A, Strech D. Ethical issues in public health sur- veillance: a
p.000053: systematic review. BMC Public Health 2017; 4:17(1): 295
p.000053: 86. Dye C, Bartolomeos K, Moorthy V, Kieny MP. Data sharing in public health emergencies: a call to researchers.
p.000053: Bull World Health Organ 2016;94:158.
...

Health / patients in emergency situations

Searching for indicator emergencies:

(return to top)
p.000018: “groups” of people. After considerable controversy, a con- sensus emerged: CIOMS stressed the impor- tance of
p.000018: the principles of research ethics ﬁrst set out in the Nuremberg Code but recognized that application in the
p.000018: epidemiological context would require ﬂexibility (34). The tradition that developed was one in
p.000018: which research
p.000018:
p.000018: ethics committees could waive a requirement for informed consent when the risk posed by epidemiological
p.000018: research was “no more than minimal” and obtaining consent would make the research “impracticable” (34).
p.000018:
p.000018: While public health surveillance may share methodological strategies with epidemiologi- cal research, it is
p.000018: not simply another form of research. In surveillance a community is the subject of concern. That surveillance
p.000018: is one of the responsibilities of public health was rec- ognized in 1991 by CIOMS, which described
p.000018: surveillance in emergency outbreak situations as clearly requiring exemption from ethi- cal review and
p.000018: oversight. In dire situations, surveillance could not “await the formal approval of an ethical
p.000018: review committee” (34). Emergencies, however, accounted for only a small part of surveillance activities.
p.000018:
p.000018: Not until its 2009 revision did CIOMS guide- lines explicitly support continuous case-based public health
p.000018: surveillance (in the absence of informed consent). The revision stated, “Several considerations
p.000018: support the com- mon practice of requiring that all practitio- ners submit relevant data [to public
p.000018: health surveillance registries]: the importance of having comprehensive information … about an entire
p.000018: population, the scientiﬁc need to include all cases in order to avoid undetect- able selection bias and
p.000018: the general ethical principle that burdens and beneﬁts should be distributed across the population.” (35)
p.000018: This position echoed that of the Nufﬁeld Council on Bioethics in the United Kingdom. In 2007, the Council
p.000018: warned against allowing individuals to opt out of reporting, arguing, “We are aware of several examples [in
p.000018: which] consent requirements have or could have had serious negative consequences.” (36) Despite this sweeping
p.000018: endorsement of mandatory nominative case reporting without consent, the Council underscored the
p.000018: inevitability of
p.000018:
p.000018: Framing the ethics of surveillance
p.000019: 19
p.000019:
p.000019: making ethical judgements about the limits of surveillance (36).
...

p.000042: technical dif- ﬁculties in sharing data, some data requiring conversion (e.g. birth year to age) in order
p.000042: to link databases (84, 85).
p.000042:
p.000042: Public health systems should establish frame- works to enable secure sharing of data (see Guideline 10)
p.000042: with other national and inter- national agencies. Early collaboration to align processes in order to avoid
p.000042: foregoing beneﬁts or wasting resources is ethically warranted. Ethical frameworks for sharing should respect
p.000042: persons by ensuring that only the data required to fulﬁl a sufﬁciently important, legitimate public health
p.000042: purpose are shared, that data are not shared more broadly than necessary, and that data are not subsequently
p.000042: re-shared by other agencies, except under the conditions speciﬁed elsewhere in this document, e.g. in
p.000042: guidelines 16–17. When the protection of different datasets is not equivalent, the more stringent
p.000042: privacy standard should be applied.
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042: Guidelines
p.000043: 43
p.000043:
p.000043: Guideline 15. During a public health emergency, it is imperative that all parties involved in surveillance share data
p.000043: in a timely fashion.
p.000043: The collection and sharing of data are essen- tial activities in ordinary public health practice. During
p.000043: emergencies, data-sharing takes on increased importance because of the urgency of the situation,
p.000043: uncertainty in the face of incomplete or changing information, the com- promised response capacity of local health
p.000043: sys- tems and the heightened role of cross-border collaboration. For these reasons, “rapid data sharing is
p.000043: critical during an unfolding health emergency” (86). It not only constitutes good public health
p.000043: practice but is ethically imperative. Ethically appropriate, rapid shar- ing of data can help in
p.000043: identifying etiological factors; predicting disease spread; evaluating existing and novel treatment,
p.000043: symptomatic care and preventive measures; and guiding
p.000043: the deployment of limited resources. As dis- cussed in the WHO guidance on managing ethical issues in
p.000043: infectious disease outbreaks (49), clinical and research data that are crucial for emergency response should also be
p.000043: shared. Data-sharing is also an obligation under the IHR in both health emergencies and infectious disease
p.000043: outbreaks.
p.000043: As part of continuous pre-epidemic prepared- ness, countries should review their laws, poli- cies and practices on
p.000043: data sharing to ensure that they adequately protect the conﬁden- tiality of personal information
p.000043: and address other relevant ethical questions, such as set- tling disputes about the ownership or control of
p.000043: surveillance data. Efforts should be made to ensure that rapid sharing of surveillance information with
p.000043: immediate implications for protecting public health and advancing the common good should not preclude
p.000043: subse- quent publication in a scientiﬁc journal (87).
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: Medical student and district surveillance ofﬁcer investigating suspected Ebola cases in Western Region of
p.000043: Sierra Leone.
p.000043: Source: WHO /Stéphane Saporito
p.000043:
p.000044: 44
p.000044: Guidelines
p.000044:
p.000044:
p.000044:
p.000044: Guideline 16. With appropriate justiﬁcation and safeguards, public health agencies may use or share surveillance data
p.000044: for research purposes.
p.000044:
p.000044: Surveillance data have often served as a foun- dation for important public health research (88-90). For example,
p.000044: cancer registries have been used in longitudinal epidemiological studies on survival and treatment
...

p.000050: future ethical challenges in pandemic preparedness and response. Monash Bioeth Rev 2015;33:130–147.
p.000050: 29. Lee LM, Thacker SB, St Louis ME, Teutsch SM. Principles and practice of public health surveillance. 3rd Edition.
p.000050: Oxford: Oxford University Press; 2010.
p.000050: 30. Fox RC. Advanced medical technology – social and ethical implications. Annu Rev Sociol
p.000050: 1976;2:231–268.
p.000050: 31. Fox RC, Swazey JP. Medical morality is not bioethics: medical ethics in China and the United States. New
p.000050: Brunswick, NJ: Transaction Books; 1988.
p.000050: 32. Rothman JD. Strangers at the bedside: a history of how law and bioethics transformed medical decision making.
p.000050: New York, NY: Basic Books; 1991.
p.000050: 33. Ackerman HT. Choosing between Nuremberg and the National Commission: balancing of moral principles in clinical
p.000050: research. In: The ethics of research involving human subjects: facing the 21st century. Frederick, MD: University
p.000050: Publishing Group; 1996.
p.000050: 34. International guidelines for ethical review of epidemiological studies. Geneva; Council for Interna- tional
p.000050: Organizations of Medical Sciences; 1991.
p.000050: 35. International ethical guidelines for epidemiological studies. Geneva; Council for International
p.000050: Organizations of Medical Sciences; 2009.
p.000050: 36. Hepple B, Nufﬁeld Council on Bioethics. Public health: ethical issues. London: Nufﬁeld Council on Bioethics;
p.000050: 2007.
p.000050: 37. Ethics in epidemics, emergencies and disasters: research, surveillance and patient care: WHO train- ing manual.
p.000050: Geneva: World Health Organization; 2015.
p.000050: 38. Rubel A. Justifying public health surveillance: basic interests, unreasonable exercise, and privacy. Kennedy
p.000050: Inst Ethics J 2012;22:1–33.
p.000050:
p.000050: References
p.000051: 51
p.000051:
p.000051: 39. Fairchild AL. Dealing with Humpty Dumpty: research, practice, and the ethics of public health
p.000051: surveillance. J Law Med Ethics 2003;31:615–623.
p.000051: 40. Dawson A, Jennings B. The place of solidarity in public health ethics. Public Health Rev 2013;
p.000051: 34:65–79.
p.000051: 41. Beauchamp DE. The health of the republic: epidemics, medicine, and moralism as challenges to democracy.
p.000051: Philadelphia, PA: Temple University Press; 1990.
p.000051: 42. Upshur RE. Principles for the justiﬁcation of public health intervention. Can J Public Health
p.000051: 2002;93:101–103.
p.000051: 43. Kaul I, Faust M. Global public goods and health: taking the agenda forward. Bull World Health
p.000051: Organ 2001;79:869–874.
p.000051: 44. Selgelid MJ. Infectious disease ethics : limiting liberty in contexts of contagion. New York, NY:
p.000051: Springer; 2011.
p.000051: 45. Deneulin S, Townsend N. Public goods, global public goods and the common good. Int J Soc Econ 2007;34:19–36.
p.000051: 46. Closing the gap in a generation: health equity through action on the social determinants of
...

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p.000053: 77. Rose G. Sick individuals and sick populations. Int J Epidemiol 1985;14:32–38.
p.000053: 78. Upshur RE, Morin B, Goel V. The privacy paradox: laying Orwell’s ghost to rest. Can Med Assoc J
p.000053: 2001;165:307–309.
p.000053: 79. Davison WL, Kelley RA. ICES report – 2014 prescribed entity review. Toronto, Ontario: Institute for Clinical
p.000053: Evaluative Sciences; 2014.
p.000053: 80. Baggaley R, Johnson C, Garcia Calleja JM, Sabin K, Obermeyer C, Taegtmeyer M, et al. Routine feedback of test
p.000053: results to participants in clinic- and survey-based surveillance of HIV. Bull World Health Organ 2015;93:352–355.
p.000053: 81. Fairchild LA, Ronald. Unlinked anonymous testing for HIV in developing countries: a new ethical consensus.
p.000053: Public Health Rep 2012;127:115–118.
p.000053: 82. Consolidated guidelines on HIV testing services. Geneva: World Health Organization; 2015.
p.000053: 83. Monitoring HIV impact using population-based surveys. Geneva: UNAIDS; 2015.
p.000053: 84. Bernstein AB, Sweeney MH. Public health surveillance data: legal, policy, ethical, regulatory, and practical
p.000053: issues. MMWR Suppl 2012;61:30–34.
p.000053: 85. Klingler C, Silva D, Schuermann C, Reis A, Saxena A, Strech D. Ethical issues in public health sur- veillance: a
p.000053: systematic review. BMC Public Health 2017; 4:17(1): 295
p.000053: 86. Dye C, Bartolomeos K, Moorthy V, Kieny MP. Data sharing in public health emergencies: a call to researchers.
p.000053: Bull World Health Organ 2016;94:158.
p.000053: 87. Langat P, Pisartchik D, Silva D, Bernard C, Olsen K, Smith M, et al. Is there a duty to share? Eth- ics of
p.000053: sharing research data in the context of public health emergencies. Public Health Ethics 2011;4:4–11.
p.000053: 88. Hripcsak G, Bloomrosen M, Flately Brennan P, Chute CG, Cimino J, Detmer DE, et al. Health data use,
p.000053: stewardship, and governance: ongoing gaps and challenges: a report from AMIA’s 2012 health policy meeting. J
p.000053: Am Med Inform Assoc 2014;21:204–211.
p.000053: 89. Geissbuhler A, Safran C, Buchan I, Bellazzi R, Labkoff S, Eilenberg K. Trustworthy reuse of health data: a
p.000053: transnational perspective. Int J Med Inform 2013;82:1–9.
p.000053: 90. Longo LD, Drazen MJ. Data sharing. N Engl J Med 2016;374:276–277.
p.000053: 91. Frakt AB, Bagley N. Protection or harm? Suppressing substance-use data. N Engl J Med
p.000053: 2015;372:1879–1881.
p.000053: 92. Sidel VW, Cohen HW, Gould RM. Good intentions and the road to bioterrorism preparedness. Am J Public Health
p.000053: 2001;91:716–718.
p.000053: 93. Fatima R, Harris RJ, Enarson DA, Hinderaker SG, Qadeer E, Ali K, et al. Estimating tuberculosis
p.000053: burden and case detection in Pakistan. Int J Tuberc Lung Dis 2014;18:55–60.
p.000053: 94. i-IHS. Fighting Ebola using drones. 2014 (http://i-hls.com/archives/40511).
p.000053: 95. Atherton KD. The week in drones: drones ﬁght Ebola, Iranian dogﬁghters, and more. Keeping up with the droneses.
p.000053: Popular Science, 26 September 2014.
p.000053: 96. Thermal imaging cameras ﬁghting the war on Ebola virus. Las Vegas, NV: Sierra Paciﬁc Innova-
p.000053: tions; 2014 (https://www.x20.org/thermal-imaging-cameras-war-ebola/).
p.000053: 97. Kristin BS. African drone stories. Behemoth J Civilisation 2015;8:73–96.
p.000053:
p.000053:
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Health / substance use

Searching for indicator substance use:

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p.000044: Sharing of surveillance data for research pur- poses requires appropriate safeguards, such as ethical oversight
p.000044: (see Guideline 2), anonymiza- tion, and data security. While the kind of ethi- cal review required for conducting
p.000044: research is not appropriate for conducting public health surveillance, surveillance data should be shared only
p.000044: for research projects that have been reviewed and approved by an appropriate
p.000044: research ethics committee or another appro- priate body, consistent with international and local
p.000044: standards on the ethical conduct of research. In making decisions about granting access to surveillance data,
p.000044: ethics committees should consider the potential public health impact of research (Is the research sufﬁciently
p.000044: important, or does it have, in the language of CIOMS, “social value”?), the risks to the sub- jects involved, the
p.000044: measures in place to protect privacy, and the importance and feasibility of seeking consent.
p.000044:
p.000044: Striking the appropriate balance between safeguards and research advancement will sometimes be
p.000044: challenging. One controversial way of sharing sensitive information on drug use has been to delete any
p.000044: information on substance use disorders from individual clinical records released to researchers. Such protec-
p.000044: tion in the name of privacy has become the centre of controversy in the context of a wide- reaching opioid
p.000044: epidemic. One group of critics has argued that this has left researchers “ﬂy- ing blind” (91).
p.000044:
p.000044: Researchers who have been provided with surveillance data should inform public health authorities about
p.000044: their ﬁndings. Before surveil- lance data are shared with researchers, there should be agreement about:
p.000044: appropriate data uses, restrictions on data re-sharing, adequate acknowledgement of the data source in publi- cations,
p.000044: and data destruction conditions at the end of the research phase.
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044: Guidelines
p.000045: 45
p.000045:
p.000045:
p.000045: Guideline 17. Personally identiﬁable surveillance data should not be shared with agencies that are likely to use them
p.000045: to take action against individuals or for uses unrelated to public health.
p.000045:
p.000045: While aggregate public health data may be widely shared with agencies outside the health sector
p.000045: and non-state actors responsible for public welfare, sharing personally identi- ﬁable data is a fundamentally
p.000045: different mat- ter. Access to such personal information by agencies responsible for national security, law
p.000045: enforcement, or the allocation of social ben- eﬁts should usually be allowed only after legal due process. To
...

Health / visual impairment

Searching for indicator blind:

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p.000044: for research projects that have been reviewed and approved by an appropriate
p.000044: research ethics committee or another appro- priate body, consistent with international and local
p.000044: standards on the ethical conduct of research. In making decisions about granting access to surveillance data,
p.000044: ethics committees should consider the potential public health impact of research (Is the research sufﬁciently
p.000044: important, or does it have, in the language of CIOMS, “social value”?), the risks to the sub- jects involved, the
p.000044: measures in place to protect privacy, and the importance and feasibility of seeking consent.
p.000044:
p.000044: Striking the appropriate balance between safeguards and research advancement will sometimes be
p.000044: challenging. One controversial way of sharing sensitive information on drug use has been to delete any
p.000044: information on substance use disorders from individual clinical records released to researchers. Such protec-
p.000044: tion in the name of privacy has become the centre of controversy in the context of a wide- reaching opioid
p.000044: epidemic. One group of critics has argued that this has left researchers “ﬂy- ing blind” (91).
p.000044:
p.000044: Researchers who have been provided with surveillance data should inform public health authorities about
p.000044: their ﬁndings. Before surveil- lance data are shared with researchers, there should be agreement about:
p.000044: appropriate data uses, restrictions on data re-sharing, adequate acknowledgement of the data source in publi- cations,
p.000044: and data destruction conditions at the end of the research phase.
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044: Guidelines
p.000045: 45
p.000045:
p.000045:
p.000045: Guideline 17. Personally identiﬁable surveillance data should not be shared with agencies that are likely to use them
p.000045: to take action against individuals or for uses unrelated to public health.
p.000045:
p.000045: While aggregate public health data may be widely shared with agencies outside the health sector
p.000045: and non-state actors responsible for public welfare, sharing personally identi- ﬁable data is a fundamentally
p.000045: different mat- ter. Access to such personal information by agencies responsible for national security, law
p.000045: enforcement, or the allocation of social ben- eﬁts should usually be allowed only after legal due process. To
p.000045: preserve trust in public health surveillance systems, there should be compel- ling justiﬁcation for sharing
p.000045: identiﬁable data for non-public health uses.
p.000045:
p.000045: Inappropriate sharing of surveillance data is especially controversial in countries in which law enforcement
p.000045: or other agencies have been
p.000045:
...

Searching for indicator blinded:

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p.000040: the other, it may lead to injury, stigmatization or discrimination. A decision not to broadly publish data
p.000040: might be justiﬁed in exceptional circumstances, when doing so might cause signiﬁcant harm. Likewise,
p.000040: if the affected population is so small (for example, cases of very rare cancers) that identiﬁcation of
p.000040: individuals, however inadver- tent, might be inevitable, communication can be limited to preserve privacy (79).
p.000040:
p.000040: Decision-makers must also weigh the harm that could result if affected communities are not informed and
p.000040: thus deprived of knowl- edge and the ability to take action to reduce the risks and the capacity to
p.000040: engage in advo- cacy (see Guideline 13). Those responsible for public health have an afﬁrmative duty to miti- gate
p.000040: the burdens that communication might impose on individuals or groups that are more susceptible to harm or
p.000040: injustice.
p.000040:
p.000040: There is continuing debate about when, if ever, those responsible for the design and conduct of
p.000040: surveillance are ethically obliged to inform the subjects of surveillance about individual results or
p.000040: diagnosis and then refer them to the appropriate service (80). For example, in the early days of the
p.000040: HIV epidemic, when treatment was not avail- able, blinded seroprevalence studies were considered
p.000040: ethically acceptable. In these population-based surveys, HIV status was
p.000040:
p.000040: Guidelines
p.000041: 41
p.000041:
p.000041: not communicated to the study participants. With advances in HIV diagnosis and manage- ment, however, the ethical
p.000041: consensus shifted (81). Guidelines now recommend that sur- veillance systems report results back to con-
p.000041: senting individuals (80, 82, 83). Guidelines also recommend that, after returning results to individuals,
p.000041: those with positive results be referred for proper clinical evaluation, treat- ment and follow-up at
p.000041: nearby health facili- ties. The guidelines also encourage partner testing (76) and referral for
p.000041: psychosocial
p.000041: support. This example underscores the importance of surveillance systems having an engaged
p.000041: oversight body to deal with such issues and make changes on the basis of new evidence or emerging best practices in
p.000041: other jurisdictions (Guideline 2).
p.000041: Relevant ethical considerations in making a judgement about returning information to individuals include
p.000041: feasibility, the possibility of taking action and the potential beneﬁt to the individual.
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
...

Searching for indicator access:

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p.000041: obligation to share data with other national and
p.000041: international public health agencies.
p.000043: 43
p.000043: Guideline 15. During a public health emergency, it is imperative that all parties
p.000043: involved in surveillance share data in a timely fashion. 44
p.000043: Guideline 16. With appropriate justiﬁcation and safeguards, public health
p.000043: agencies may use or share surveillance data for research purposes. 45
p.000043: Guideline 17. Personally identiﬁable surveillance data should not be shared with agencies that are likely to use them
p.000043: to take action against individuals or for uses unrelated to public health.
p.000046: 46
p.000046: V. The shifting boundaries of surveillance
p.000048: 48
p.000048: References
p.000050: 50
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000004: 4
p.000004:
p.000004: Foreword
p.000004:
p.000004:
p.000004:
p.000004:
p.000004:
p.000004:
p.000004:
p.000004:
p.000004: Public health surveillance is the bedrock of outbreak and epidemic response, but it reaches
p.000004: far beyond infectious diseases. It is sometimes called the radar of public health: it allows health
p.000004: ofﬁcials to map disease, spot patterns, identify causes, and target interven- tions. Surveillance, for example,
p.000004: is central to understanding the increasing global burden of noncommunicable conditions. By helping to
p.000004: determine patterns and causes of morbidity and mortality, it can help guarantee access to safe food, clean water,
p.000004: pure air, and healthy environments.
p.000004:
p.000004: Surveillance, when conducted ethically, is the foundation for programs to promote human well-being at the
p.000004: population level. It can con- tribute to reducing inequalities: pockets of suf- fering that are unfair, unjust and
p.000004: preventable cannot be addressed if they are not ﬁrst made visible. But surveillance is not without risks for
p.000004: participants and sometimes poses ethical dilemmas. Issues about privacy, autonomy, equity, and the common
p.000004: good need to be con- sidered and balanced, and knowing how to do so can be challenging in practice.
p.000004:
p.000004: I am pleased to see WHO leading in this impor- tant area by placing ethics at the heart of pub- lic health
p.000004: surveillance. The WHO Guidelines on Ethical Issues in Public Health Surveillance is
p.000004: the ﬁrst international framework of its kind, it ﬁlls an important gap. The goal of the guide- line development project
p.000004: was to to help policy- makers and practitioners navigate the ethical issues presented by public health
p.000004: surveillance. This document outlines 17 ethical guidelines that can assist everyone involved in public
p.000004: health surveillance, including ofﬁcials in gov- ernment agencies, health workers, NGOs and the private sector.
p.000004: I gratefully acknowledge the many experts and WHO colleagues who have made important contributions to
p.000004: this publication.
p.000004:
p.000004: WHO has rightly asserted that public health surveillance, conducted in a manner that anticipates
...

p.000007: Security”, Australia; Wellcome Trust, United Kingdom; and the Institute for Bioethics and Health Policy,
p.000007: University of Miami, USA.
p.000007:
p.000007:
p.000008: 8
p.000008: Acknowledgements
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008: The WHO Strategic Health Operations Centre (SHOC) May 3, 2009.
p.000008: Source: WHO /Christopher Black
p.000008:
p.000008:
p.000008:
p.000009: 9
p.000009:
p.000009: I. Introduction
p.000009: Disease surveillance has been a basic public health activity since the late nineteenth century (see Table 1). It
p.000009: is the foundation for initiatives to promote human well-being at the popula- tion level. Public health
p.000009: surveillance is the bed- rock of outbreak and epidemic response, but it reaches far beyond infectious diseases.
p.000009: It can contribute to reducing inequalities: pockets of suffering that are unfair, unjust, and prevent- able
p.000009: cannot be addressed if they are not ﬁrst made visible (1). It is central to understanding the increasing global
p.000009: burden of noncommuni- cable conditions. By helping to determine pat- terns and causes of morbidity and mortality,
p.000009: public health surveillance can help guarantee
p.000009:
p.000009: access to safe food, clean water, pure air, and healthy environments. Continuous envi- ronmental
p.000009: surveillance may not only identify concerns but also trigger alerts. Occupational disease surveillance can
p.000009: identify workplace exposures and lead to regulation. Surveillance can help create accountable institutions
p.000009: by providing information about health and its determinants. It can provide an evidentiary basis
p.000009: for establishing and evaluating public health policy. Surveillance, for example, will be central to the
p.000009: achievement of the United Nation’s Sustainable Development Goals. The availability of the results of
p.000009: surveillance enables and promotes policy choice. Thus, access to surveillance information can serve as
p.000009: a tool for advocacy when the results are
p.000009:
p.000009: Table 1. Dimensions of public health surveillance
p.000009: Scope
p.000009:
p.000009: Communicable diseases
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Early detecting and warning of epidemics
p.000009: Noncommunicable diseases
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Trend and spatial analyses
p.000009: Environmental factors
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Risk detection
p.000009: Risk factors and risk markers
p.000009:
p.000009:
p.000009: 
p.000009: Objectives
p.000009: Generating hypotheses
p.000009:
p.000009: 
p.000009: Health system
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Monitoring of health system performance
p.000009: Demographic variables
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Evaluation of control measures
p.000009: Health-related events (e.g. food and drug safety, vaccine reactions)
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Policy analysis
p.000009:
p.000009:
p.000009:
p.000009: Registries Case reports Repeated
p.000009: surveys
p.000009: Data collection tools
p.000009: Bio-banks Secondary data sources
p.000009:
p.000009: 
p.000009: Types of analysis
p.000009:
p.000009:
p.000009: Population-based (universal or sentinel sites)
p.000009:
p.000009:
p.000009: Social media
p.000009:
p.000009: Estimation of incidence or prevalence
p.000009: Measurement of associations
p.000009: Assessment of trends
...

p.000015: only infectious diseases and involve not only continuous data collection but may also include focused
p.000015: epidemiological studies; inspection of hazardous conditions or broad oversight of the potential danger posed
p.000015: by food, water or the environment; and screen- ing at workplaces or in health establishments. Table 1 gives an
p.000015: overview of the activities that fall within public health surveillance.
p.000015:
p.000015: While there may be broader and narrower deﬁnitions, the understanding of surveillance is that data
p.000015: are collected with the intent of enabling public health action, whether direct intervention,
p.000015: priority-setting, resource alloca- tion or advocacy. “Knowing about the health of a community,” noted one group
p.000015: of surveil- lance specialists, “is the ﬁrst step to making improvements that support healthy behaviours,
p.000015: identify and address unusual health events, and prevent and treat disease and injury.” (12) In addition to
p.000015: linking surveillance to action to achieve some goal, almost all countries, institu- tions and experts underscore
p.000015: the importance of communicating surveillance results to those “who need to know”, including the public,
p.000015: policy-makers, national and international sci- entiﬁc communities, programme planners, public health
p.000015: authorities, medical institutions and funding agencies, to enable intervention, sustainable development or
p.000015: advocacy.
p.000015:
p.000015: The landscape of public health practice is also changing rapidly with regard to the kind of data to which
p.000015: public health agencies have routine access. In some settings, data are recorded by hand and stored on
p.000015: paper; in oth- ers, they are collected, stored and shared via sophisticated electronic systems. The era of
p.000015: “big data,” as discussed in section V, may hold enormous potential for the future of public health surveillance,
p.000015: broadly understood, and has already raised vexing ethical questions.
p.000015:
p.000015: In some jurisdictions, surveillance systems could soon be linked directly to electronic health
p.000015: records. Interoperability between pub- lic health surveillance data sources and clini- cal practice is within
p.000015: reach, in both the public and the private health care sectors (15). Public health data can be used to inform
p.000015: automatic decision-support systems or computational tools to trigger alerts and warnings. Research has shown,
p.000015: further, that geospatial mobile phone data could accurately describe and pre- dict the movement of individuals
p.000015: and thereby the spread of diseases like malaria and H1N1 inﬂuenza (16-18).
p.000015:
p.000015: These guidelines deﬁne public health surveil- lance systems broadly, building on the general WHO deﬁnition of
p.000015: continuous, systematic col- lection, analysis, interpretation, and sharing of health–related data for advocacy and for
p.000015: plan- ning, implementing, and evaluating public health practices. Even if systems are operative, however, new,
p.000015: focused studies are required to respond to epidemiological threats. Further, public health surveillance systems not
p.000015: only rely on but may also inform and improve clinical practice.
p.000015:
p.000015: Surveillance: ethics, law and history
p.000015:
...

p.000027:
p.000027: The Global Health Ethics Unit at WHO created a new mechanism in 2015 to help colleagues working in
p.000027: public health to address ethical issues. Like those of the Ethics Review Board of Public Health Ontario and the Public
p.000027: Health Unit at the Centers for Disease Control and Prevention, the mandate of the Public Health Ethics Consultation
p.000027: Service extends beyond surveillance. Programmes and initiatives are not required to be reviewed by this service: WHO
p.000027: staff solicit advice as needed in order to maximize ﬂexibility and ensure that ethical consultation is not viewed as a
p.000027: bureaucratic hurdle. Its advice is informal and non-binding. The group is made up of WHO staff, who receive continuing
p.000027: training in public health ethics and seek advice from the global network of WHO Collaborating Centres for Bioethics.
p.000027: (Source: http://www.who.int/ethics/en/)
p.000027:
p.000027:
p.000028: 28
p.000028: Guidelines
p.000028:
p.000028:
p.000028:
p.000028: Guideline 3. Surveillance data should be collected only for a legitimate public health purpose.
p.000028:
p.000028: Governments and others involved in public health surveillance should collect only infor- mation that is
p.000028: relevant for legitimate public health purposes, such as to protect, enable or enhance public well-being,
p.000028: reduce morbid- ity and mortality, increase access to the health system and services and reduce health dispari- ties
p.000028: and thereby inequities. All further discus- sions of public health surveillance in these guidelines is
p.000028: based on the assumption that it is undertaken exclusively for a legitimate public health purpose.
p.000028:
p.000028: Literature on good governance usually con- siders legitimate measures to be those that are publicly
p.000028: defensible, morally justiﬁed and/
p.000028: or socially acceptable in pursuit of a common good. (53, 54) Any collection of personally identiﬁable
p.000028: information that does not meet these conditions would be ethically problem- atic. A legitimate public
p.000028: health purpose is required not only for the collection of data but also for the further use of data already
p.000028: in hand.
p.000028:
p.000028: Data collected for clinical purposes (for exam- ple to diagnose infectious disease, to moni- tor microbial
p.000028: resistance, to monitor NCDs like diabetes or to track behaviour associated with coronary heart disease or
p.000028: obesity) can be used for legitimate public health surveillance purposes, provided that such use meets the
p.000028: criteria bar set in guidelines 1, 3, 4 and 7–14 of this document. Such repurposing requires adequate protection of
p.000028: data security and con- ﬁdentiality (Guideline 10).
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028: Children`s Environmental Health in India.
p.000028: Source: WHO /Diego Rodriguez
p.000028:
p.000028: Guidelines
...

p.000030: inevita- bly engage questions of equity and efﬁciency. As no absolute standard can guide such deter- minations, it is
p.000030: critical that decision-making be transparent, fair and open to revision (58). Governments are accountable for
p.000030: how priori- ties are set. Transparency is important because it fosters trust and creates conditions for citi-
p.000030: zens to advance the common good individually and collectively (59).
p.000030:
p.000030: Transparency is essential with respect to: (i) the aims and duration of any public health surveil- lance activity, (ii)
p.000030: the rationale for such activity relative to explicit health or health care system goals, (iii) the intended beneﬁts
p.000030: and potential burdens to citizens and other actors of public
p.000030: health surveillance, (iv) the scope and methods to be used in collecting data, (v) the intended uses of data and by
p.000030: whom, (vi) the mechanism by which use of data will be monitored, (vii) the mechanism by which subsequent use of
p.000030: data would be overseen at community level and (viii) the recourse that citizens or other actors may have if
p.000030: public health surveillance fails to meet legal and/or ethical standards. Surveillance data should be
p.000030: publicly reported (see Guideline
p.000030: 13) to the extent that they will increase public trust, serve the aim of promoting and protect- ing public health
p.000030: nationally and internation- ally and will not unduly harm any identiﬁable group or exacerbate inequity (54,
p.000030: 58).
p.000030:
p.000030: Citizens should have access to mechanisms to express their concerns and priorities with regard to
p.000030: surveillance. For example, commu- nities may express concern about a potential cluster of birth defects or
p.000030: cancers that necessi- tates not only targeted epidemiological studies but also the creation of surveillance
p.000030: systems. Priorities should not be set solely by experts nor by those with access to health ofﬁcials and
p.000030: policy-makers, neglecting populations with less opportunity to voice their concerns.
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030: Pandemic containment exercise (simulation), conducted by the Ministry of Indonesia with the support of WHO Indonesia.
p.000030: Source: WHO / SEARO /Nursila Dewi
p.000030:
p.000030: Guidelines
p.000031: 31
p.000031:
p.000031:
p.000031: Guideline 6. The global community has an obligation to support countries that lack adequate resources to undertake
p.000031: surveillance.
p.000031:
p.000031: Some countries may be unable to establish and maintain public health surveillance of suf- ﬁcient quality, even
p.000031: for high-priority targets that could greatly reduce health inequalities and improve population health,
p.000031: because of severe resource constraints. Equity provides the ethical foundations for claims to interna-
p.000031: tional support. The global community – inter- national health organizations, NGOs, major foundations,
p.000031: countries with a global leader- ship role – has an ethical responsibility to work collaboratively with these
p.000031: countries to support public health surveillance and subsequent interventions. The aim of this requirement
p.000031: of global justice is to reduce health inequalities among countries and improve global health.
p.000031:
p.000031: For example, preventing and limiting the global spread of disease was a key rationale for the
p.000031: obligations under the IHR. Given that outbreaks and risk factors do not recognize borders, the global
...

p.000033: types of harm (73). Various moral values and ethical principles should be weighed and bal- anced against
p.000033: each other and a judgement made about fair distribution of burdens and beneﬁts in different surveillance
p.000033: initiatives or systems in a transparent way (see discussions of equity and good governance in section III).
p.000033:
p.000033: When, despite all efforts to mitigate harm, surveillance entails a predictable risk for harm (stigmatization,
p.000033: discrimination, expulsion or violence), additional precautions should be
p.000033:
p.000033: Table 2. Types of harm potentially related to disclosure of public health surveillance data
p.000033: Type of harm Result
p.000033: Physical Public attacks, spouse/partner abuse, domestic violence, delayed or
p.000033: inadequate treatment
p.000033: Legal Arrest, prosecution, death penalty, expulsion
p.000033: Social Discrimination, community discrimination, isolation, inability to access
p.000033: care or exclusion from care, rejection from the community
p.000033: Economic Loss of employment or revenue, loss of health care services, loss of insurance,
p.000033: increased insurance premiums, increased health care costs, limited career options, loss of life resources, forced
p.000033: relocation
p.000033: Psychological/emotional Distress, trauma, stigma
p.000033:
p.000034: 34
p.000034: Guidelines
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034: Health brigades in Chiapas, Mexico, during the epidemic of H1N1 inﬂuenza, 2009.
p.000034: Source: WHO /Harold Ruiz
p.000034:
p.000034:
p.000034: taken to protect the individuals or commu- nities at risk. The risk for serious harm may, in rare
p.000034: circumstances, be so great that sur- veillance might be difﬁcult to justify morally. In most cases,
p.000034: however, mitigation strategies can ensure that risks for harm are dealt with adequately. Once harm or
p.000034: potential harm is identiﬁed, action must be taken to reduce the risk, or a plan must be in place for
p.000034: reducing, removing or compensating for any harm.
...

p.000034: the common good, they must be free to report without fear of reprisal. As surveillance ofﬁcials have a
p.000034: responsibility to speak up, they should have protection. This idea is established in the IHR, which
p.000034: protects the conﬁdentiality of those who report a veri- ﬁable outbreak or a public health event out- side
p.000034: ofﬁcial channels.
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034: Guidelines
p.000035: 35
p.000035:
p.000035:
p.000035: Guideline 9. Surveillance of individuals or groups who are particularly susceptible to disease, harm or injustice is
p.000035: critical and demands careful scrutiny to avoid the imposition of unnecessary additional burdens.
p.000035:
p.000035: Individuals or groups in situations of height- ened vulnerability bear an undue proportion of health
p.000035: problems. Responsible authorities should make special efforts to ensure that these populations are
p.000035: included in surveillance in ways that will empower them. How exactly situations of vulnerability should be
p.000035: deﬁned is a subject of dispute in the literature (74). Vulnerability may be diffuse, affecting large
p.000035: communities with limited economic develop- ment, limited access to health care facilities, educational
p.000035: deprivation, occupational risks or wider disadvantages in society. Public health surveillance and health
p.000035: information systems can provide valuable information to aid the development of health programmes and ser-
p.000035: vices to address their health problems and the underlying determinants of health, such as clean water, food
p.000035: security, or gender equality. To promote equity, surveillance should focus on the speciﬁc problems of these
p.000035: vulnerable communities.
p.000035:
p.000035: People with particular susceptibility to disease, harm or injustice are also at increased risk for further
p.000035: burdens, such as discrimination and stigma, attributable to surveillance activities or ﬁndings. For
p.000035: example, refugee groups and undocumented migrants with a higher disease burden may be seen, wrongly, as the cause of
p.000035: disease outbreaks. Similarly, workers with an occupational disease, such as silicosis, who lack access
p.000035: to adequate legal support may
p.000035:
p.000035: be dismissed from work rather than receiving treatment or compensation. Wherever pos- sible, susceptible
p.000035: groups should be identiﬁed before surveillance activities begin in order to minimize the risk for harm. In
p.000035: surveillance pro- grammes, there should be constant monitor- ing for (further) harm to those in conditions of
p.000035: particular vulnerability. When harm does occur, a mitigation strategy should be put in place (see Guideline 8).
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: The HIV oral test on a brothel bed in Belém do Pará, Brazil.
p.000035: Source: Laura Murray
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000036: 36
p.000036: Guidelines
p.000036:
p.000036:
p.000036:
p.000036: Guideline 10. Governments and others who hold surveillance data must ensure that identiﬁable data are appropriately
p.000036: secured.
p.000036:
p.000036: Responsible data collection and sharing prac- tices should ensure the security of the data collected in order to
p.000036: respect persons and safe- guard the privacy and other interests of the individuals and communities concerned
p.000036: (50). Every effort must be made to secure records to prevent unauthorized disclosure. Security is
p.000036: different from privacy and conﬁdential- ity, yet it is an essential component of each. “Security” in
p.000036: this context consists of opera- tional and technological safeguards to protect personal data from unauthorized
p.000036: access or disclosure. Maintaining information security is not fool-proof, as electronic databases can be inﬁltrated.
p.000036:
p.000036: Governments and others who hold surveil- lance data must take appropriate techni- cal and
p.000036: organizational steps to protect data
p.000036: against accidental or unauthorized access, destruction, loss, use or disclosure, whether the data are
p.000036: collected and stored in paper or electronic (digital) format. All personnel with access to public
p.000036: health surveillance data should be trained annually in data security pro- cedures and made aware of their
p.000036: professional ethical responsibility to protect the data and the public. The level of security must be appro-
p.000036: priate to the risks and the nature of the data to be protected, taking into account the state of the art and
p.000036: the cost. In particular, sensitive information, which raises the risks of individu- als and communities for
p.000036: stigmatization or dis- crimination, should be subject to speciﬁc and especially rigorous security safeguards.
p.000036:
p.000036: The imperative to secure data should not be considered a license to refuse to use or share surveillance
p.000036: information effectively for legiti- mate public health purposes. (See guidelines 14–17 on sharing and the
p.000036: discussion in Guide- line 2 on meaningful ethics training.)
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036: Staff at the Medical Records Ofﬁce sort through patient ﬁles at Karapitayam Hospital, Galle.
p.000036: Source: WHO / SEARO /Gary Hampton
p.000036:
p.000036:
p.000036: Guidelines
p.000037: 37
p.000037:
p.000037:
p.000037: Guideline 11. Under certain circumstances, the collection of names or identiﬁable data is justiﬁed.
p.000037:
p.000037: In some instances, the collection of names or identiﬁable data is both technically and ethically
...

p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: Map of parasitic disease epidemic area in China at the National Institute of Parasitic Diseases in
p.000041: Shanghai, China. 16 May 2010.
p.000041: Source: WHO / TDR /Simon Lim
p.000041:
p.000041:
p.000041:
p.000041:
p.000042: 42
p.000042: Guidelines
p.000042:
p.000042:
p.000042:
p.000042: Guideline 14. With appropriate safeguards and justiﬁcation, those responsible
p.000042: for public health surveillance have an obligation to share data with other national and international public health
p.000042: agencies.
p.000042:
p.000042: For a public health surveillance system to be effective, equitable, and promote the com- mon good, it must
p.000042: be capable of receiving and linking data from public agencies responsible for public health. For example, because
p.000042: of the stringent data security that has surrounded HIV surveillance, there have been situations in which data on
p.000042: HIV status have not been shared with those responsible for tuberculosis surveil- lance, obviating systematic
p.000042: identiﬁcation of cases with co-infection. Public health work- ers cannot respond appropriately to swiftly
p.000042: changing infectious diseases in real time or take appropriate action in the case of chronic conditions without
p.000042: access to appropriate data. The same is true of occupational exposures. There have been examples in which
p.000042: agencies responsible for tracking occupational diseases have not shared data (despite the absence of a
p.000042: prohibition) with agencies responsible for
p.000042: worker protection and workplace regulation (23). A review of the literature indicated that much of the
p.000042: failure to share information is due to poor planning rather than safety concerns. Programmes have experienced
p.000042: technical dif- ﬁculties in sharing data, some data requiring conversion (e.g. birth year to age) in order
p.000042: to link databases (84, 85).
p.000042:
p.000042: Public health systems should establish frame- works to enable secure sharing of data (see Guideline 10)
p.000042: with other national and inter- national agencies. Early collaboration to align processes in order to avoid
p.000042: foregoing beneﬁts or wasting resources is ethically warranted. Ethical frameworks for sharing should respect
p.000042: persons by ensuring that only the data required to fulﬁl a sufﬁciently important, legitimate public health
p.000042: purpose are shared, that data are not shared more broadly than necessary, and that data are not subsequently
p.000042: re-shared by other agencies, except under the conditions speciﬁed elsewhere in this document, e.g. in
p.000042: guidelines 16–17. When the protection of different datasets is not equivalent, the more stringent
p.000042: privacy standard should be applied.
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
...

p.000043: and address other relevant ethical questions, such as set- tling disputes about the ownership or control of
p.000043: surveillance data. Efforts should be made to ensure that rapid sharing of surveillance information with
p.000043: immediate implications for protecting public health and advancing the common good should not preclude
p.000043: subse- quent publication in a scientiﬁc journal (87).
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: Medical student and district surveillance ofﬁcer investigating suspected Ebola cases in Western Region of
p.000043: Sierra Leone.
p.000043: Source: WHO /Stéphane Saporito
p.000043:
p.000044: 44
p.000044: Guidelines
p.000044:
p.000044:
p.000044:
p.000044: Guideline 16. With appropriate justiﬁcation and safeguards, public health agencies may use or share surveillance data
p.000044: for research purposes.
p.000044:
p.000044: Surveillance data have often served as a foun- dation for important public health research (88-90). For example,
p.000044: cancer registries have been used in longitudinal epidemiological studies on survival and treatment
p.000044: efﬁcacy. It may be permissible to share surveillance data with researchers undertaking studies that (i) are
p.000044: sufﬁciently important for advancement of the common good and (ii) would not be feasible without access
p.000044: to the surveillance data in question. There may sometimes be disagreement about what should be con-
p.000044: sidered “sufﬁciently important” research to justify sharing of surveillance data for research
p.000044: purposes. This is a matter that local governments, public health authorities and/ or research ethics committees
p.000044: (as described below) should judge, taking into account the considerations and guidelines set out in this
p.000044: document.
p.000044:
p.000044: Sharing of surveillance data for research pur- poses requires appropriate safeguards, such as ethical oversight
p.000044: (see Guideline 2), anonymiza- tion, and data security. While the kind of ethi- cal review required for conducting
p.000044: research is not appropriate for conducting public health surveillance, surveillance data should be shared only
p.000044: for research projects that have been reviewed and approved by an appropriate
p.000044: research ethics committee or another appro- priate body, consistent with international and local
p.000044: standards on the ethical conduct of research. In making decisions about granting access to surveillance data,
p.000044: ethics committees should consider the potential public health impact of research (Is the research sufﬁciently
p.000044: important, or does it have, in the language of CIOMS, “social value”?), the risks to the sub- jects involved, the
p.000044: measures in place to protect privacy, and the importance and feasibility of seeking consent.
p.000044:
p.000044: Striking the appropriate balance between safeguards and research advancement will sometimes be
p.000044: challenging. One controversial way of sharing sensitive information on drug use has been to delete any
p.000044: information on substance use disorders from individual clinical records released to researchers. Such protec-
p.000044: tion in the name of privacy has become the centre of controversy in the context of a wide- reaching opioid
p.000044: epidemic. One group of critics has argued that this has left researchers “ﬂy- ing blind” (91).
p.000044:
p.000044: Researchers who have been provided with surveillance data should inform public health authorities about
p.000044: their ﬁndings. Before surveil- lance data are shared with researchers, there should be agreement about:
p.000044: appropriate data uses, restrictions on data re-sharing, adequate acknowledgement of the data source in publi- cations,
p.000044: and data destruction conditions at the end of the research phase.
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044: Guidelines
p.000045: 45
p.000045:
p.000045:
p.000045: Guideline 17. Personally identiﬁable surveillance data should not be shared with agencies that are likely to use them
p.000045: to take action against individuals or for uses unrelated to public health.
p.000045:
p.000045: While aggregate public health data may be widely shared with agencies outside the health sector
p.000045: and non-state actors responsible for public welfare, sharing personally identi- ﬁable data is a fundamentally
p.000045: different mat- ter. Access to such personal information by agencies responsible for national security, law
p.000045: enforcement, or the allocation of social ben- eﬁts should usually be allowed only after legal due process. To
p.000045: preserve trust in public health surveillance systems, there should be compel- ling justiﬁcation for sharing
p.000045: identiﬁable data for non-public health uses.
p.000045:
p.000045: Inappropriate sharing of surveillance data is especially controversial in countries in which law enforcement
p.000045: or other agencies have been
p.000045:
p.000045: implicated in systematic violations of human rights. In these contexts, collaboration with law enforcement
p.000045: agencies may undermine trust in public health surveillance, creating a disincentive for seeking care or
p.000045: honest report- ing of data. This is a particular concern for individuals or groups in situations of particular
p.000045: vulnerability (92). Further, such unwarranted sharing will potentially inﬂict long-term dam- age on public
p.000045: health efforts more broadly.
p.000045:
p.000045: The governance mechanisms recommended in Guideline 2 should ensure that the exceptional conditions, if any, under which
p.000045: identiﬁable sur- veillance data may be shared are speciﬁed and made transparent. Such a review will require
p.000045: determination of whether the threat is of suf- ﬁcient magnitude to warrant potential damage to the integrity of and
p.000045: trust in public health sur- veillance systems. Sanctions must be in place to prevent inappropriate data-sharing
p.000045: by public health agencies and inappropriate use of data by agencies outside the public health sector.
p.000045:
p.000045:
...

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p.000042: for public health surveillance have an obligation to share data with other national and international public health
p.000042: agencies.
p.000042:
p.000042: For a public health surveillance system to be effective, equitable, and promote the com- mon good, it must
p.000042: be capable of receiving and linking data from public agencies responsible for public health. For example, because
p.000042: of the stringent data security that has surrounded HIV surveillance, there have been situations in which data on
p.000042: HIV status have not been shared with those responsible for tuberculosis surveil- lance, obviating systematic
p.000042: identiﬁcation of cases with co-infection. Public health work- ers cannot respond appropriately to swiftly
p.000042: changing infectious diseases in real time or take appropriate action in the case of chronic conditions without
p.000042: access to appropriate data. The same is true of occupational exposures. There have been examples in which
p.000042: agencies responsible for tracking occupational diseases have not shared data (despite the absence of a
p.000042: prohibition) with agencies responsible for
p.000042: worker protection and workplace regulation (23). A review of the literature indicated that much of the
p.000042: failure to share information is due to poor planning rather than safety concerns. Programmes have experienced
p.000042: technical dif- ﬁculties in sharing data, some data requiring conversion (e.g. birth year to age) in order
p.000042: to link databases (84, 85).
p.000042:
p.000042: Public health systems should establish frame- works to enable secure sharing of data (see Guideline 10)
p.000042: with other national and inter- national agencies. Early collaboration to align processes in order to avoid
p.000042: foregoing beneﬁts or wasting resources is ethically warranted. Ethical frameworks for sharing should respect
p.000042: persons by ensuring that only the data required to fulﬁl a sufﬁciently important, legitimate public health
p.000042: purpose are shared, that data are not shared more broadly than necessary, and that data are not subsequently
p.000042: re-shared by other agencies, except under the conditions speciﬁed elsewhere in this document, e.g. in
p.000042: guidelines 16–17. When the protection of different datasets is not equivalent, the more stringent
p.000042: privacy standard should be applied.
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042: Guidelines
p.000043: 43
p.000043:
p.000043: Guideline 15. During a public health emergency, it is imperative that all parties involved in surveillance share data
p.000043: in a timely fashion.
p.000043: The collection and sharing of data are essen- tial activities in ordinary public health practice. During
p.000043: emergencies, data-sharing takes on increased importance because of the urgency of the situation,
...

p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044: Guidelines
p.000045: 45
p.000045:
p.000045:
p.000045: Guideline 17. Personally identiﬁable surveillance data should not be shared with agencies that are likely to use them
p.000045: to take action against individuals or for uses unrelated to public health.
p.000045:
p.000045: While aggregate public health data may be widely shared with agencies outside the health sector
p.000045: and non-state actors responsible for public welfare, sharing personally identi- ﬁable data is a fundamentally
p.000045: different mat- ter. Access to such personal information by agencies responsible for national security, law
p.000045: enforcement, or the allocation of social ben- eﬁts should usually be allowed only after legal due process. To
p.000045: preserve trust in public health surveillance systems, there should be compel- ling justiﬁcation for sharing
p.000045: identiﬁable data for non-public health uses.
p.000045:
p.000045: Inappropriate sharing of surveillance data is especially controversial in countries in which law enforcement
p.000045: or other agencies have been
p.000045:
p.000045: implicated in systematic violations of human rights. In these contexts, collaboration with law enforcement
p.000045: agencies may undermine trust in public health surveillance, creating a disincentive for seeking care or
p.000045: honest report- ing of data. This is a particular concern for individuals or groups in situations of particular
p.000045: vulnerability (92). Further, such unwarranted sharing will potentially inﬂict long-term dam- age on public
p.000045: health efforts more broadly.
p.000045:
p.000045: The governance mechanisms recommended in Guideline 2 should ensure that the exceptional conditions, if any, under which
p.000045: identiﬁable sur- veillance data may be shared are speciﬁed and made transparent. Such a review will require
p.000045: determination of whether the threat is of suf- ﬁcient magnitude to warrant potential damage to the integrity of and
p.000045: trust in public health sur- veillance systems. Sanctions must be in place to prevent inappropriate data-sharing
p.000045: by public health agencies and inappropriate use of data by agencies outside the public health sector.
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045: WHO Immunization ofﬁcers visit Quang Binh Province, Viet Nam to monitor the Measles-Rubella Immunization campaign.
p.000045: Source: WHO / WPRO /Emmanuel Eraly
p.000045:
p.000046: 46
p.000046: Guidelines
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046: A barcode is placed at the entrance of houses. After being ﬂashed with a smartphone, the barcode provides information
p.000046: about whether the house was controlled and declared dengue free or not.
p.000046: Source: WHO/TDR /Catalina Cardenas
p.000046:
p.000046: Guidelines
p.000047: 47
p.000047:
...

p.000051: 46. Closing the gap in a generation: health equity through action on the social determinants of
p.000051: health: ﬁnal report of the commission on social determinants of health. Geneva: World Health Organization;
p.002008: 2008
p.002008: 47. Guidance on ethics of tuberculosis prevention, care and control. Geneva: World Health Organiza- tion; 2010.
p.002008: 48. Ethics guidance for the implementation of the End TB strategy. Geneva: World Health Organiza- tion; 2017.
p.002008: 49. Guidance for managing ethical issues in infectious disease outbreaks. Geneva: World Health Orga- nization; 2016.
p.002008: 50. Scott JC. Seeing like a state: how certain schemes to improve the human condition have failed. New Haven, CT:
p.002008: Yale University Press; 1998.
p.002008: 51. Promoting the health of refugees and migrants. Executive Board resolution 140/24. Geneva: World
p.002008: Health Organization; 2017.
p.002008: 52. Willison DJ, Ondrusek N, Dawson A, Emerson C, Ferris LE, Saginur R, et al. What makes public
p.002008: health studies ethical? Dissolving the boundary between research and practice. BMC Med Ethics 2014;15:61.
p.002008: 53. Graham J, Amos B, Plumptre T. Principles for Good Governance in the 21st Century: Policy Brief
p.002008: No. 15. Ottawa: Institute on Governance, 1993. Available at: http://iog.ca/wp-content/
p.002008: uploads/2012/12/2003_August_policybrief151.pdf
p.002008: 54. United Nations Development Programme. Chapter 8: Governance Principles, Institutional Capac- ity, and Quality.
p.002008: In Towards human resilience: sustaining MDG progress in an age of economic uncertainty. New York: United
p.002008: Nations Development Programme, 2011. Available at: http://www.
p.002008: undp.org/content/undp/en/home/librarypage/poverty-reduction/inclusive_development/towards_
p.002008: human_resiliencesustainingmdgprogressinanageofeconomicun.html54.
p.002008: 55. Expert information. Tokyo: Japan Ministry of Health, Labour and Welfare (http://www.mhlw.go.jp/
p.002008: bunya/kenkou/kekkaku-kansenshou11/dl/01_kansensho.pdf).
p.002008:
p.002008:
p.000052: 52
p.000052: References
p.000052:
p.000052: 56. German RR, Lee LM, Horan JM, Milstein RL, Pertowski CA, Waller MN, et al. Updated guidelines for evaluating
p.000052: public health surveillance systems: recommendations from the Guidelines Working Group. MMWR Recomm Rep 2001;50:1-35;
p.000052: quiz CE1-7.
p.000052: 57. Brock DW, Wikler D. Ethical challenges in long-term funding for HIV/AIDS. Health Aff (Millwood)
p.000052: 2009;28:1666–1676.
p.000052: 58. Daniels N. Accountability for reasonableness: establishing a fair process for priority setting is easier than
p.000052: agreeing on principles. BMJ 2000;321:1300–1301.
p.000052: 59. O’Neill O. Trust, trustworthiness and transparency. Brussels: European Foundation Centre; 2015.
p.000052: 60. WHO framework convention on tobacco control. Geneva: World Health Organization; 2003.
p.000052: 61. United Nations framework convention on climate change. New York, NY: United Nations; 2015.
p.000052: 62. Calain P. From the ﬁeld side of the binoculars: a different view on global public health surveillance. Health
p.000052: Policy Plan 2007;22:13–20.
...

Searching for indicator children:

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p.000020: broadly conceived than in the narrow economic sense.
p.000020: Equity: Public health ethics is centrally concerned with the idea of equity. It is well established that
p.000020: social inequality has adverse effects on health (46). Not all inequality is within human control or is
p.000020: morally relevant. Morally prob- lematic inequality is commonly referred to as inequity. A just or fair society
p.000020: will attempt to provide equitable conditions for humans to ﬂourish, with health as a central component.
p.000020: Equity some- times requires that the most vulnerable people receive what may appear to be disproportionate
p.000020: resources: that is, the unfair distribution of risks requires addi- tional resources to balance the scales.
p.000020: Public health surveillance can further the pursuit of equity by identifying the particular problems
p.000020: of disadvantaged populations, including global communi- ties, providing the evidence for focused health campaigns
p.000020: and identifying the basis of unfair differences in health.
p.000020:
p.000020: Respect for persons: Public health eth- ics is concerned with the rights, liberty, and other interests of individuals
p.000020: as well as overall population well-being. When- ever possible, individuals should be involved in decisions
p.000020: that affect them. In some cases, individuals should be free to make their own choices; in other cases,
p.000020: when population-level interven- tions may be necessary, individuals can be consulted and involved in
p.000020: decision- making. But many individuals (such as young children) cannot make their own choices, and the State has
p.000020: an obligation to protect them and promote their long- term health interests. Undertaking pub- lic health surveillance
p.000020: is, itself, arguably an expression of respect for persons. This further requires ensuring that data about
p.000020: individuals and groups are pro- tected and risks for harm are minimized
p.000020:
p.000020: Framing the ethics of surveillance
p.000021: 21
p.000021:
p.000021:
p.000021: to the greatest possible extent. Finally, surveillance further engenders respect for persons by making
p.000021: protection or amelioration possible.
p.000021:
p.000021: Good governance: Although good gov- ernance is not an ethical principle but rather a political aspiration, it
p.000021: is subject to a number of ethical considerations. To ensure that the ethical challenges posed by public health
p.000021: action are addressed systematically and fairly, governance mechanisms must be accountable and open to
p.000021: public scrutiny. Although pro- tection of the common good must draw on the best available evidence,
p.000021: decisions will have to be made in the face of uncertainty. Accountability, transparency and community
p.000021: engage- ment are means of justifying public policy structures that promote respect for persons,
p.000021: equity, and the common good. Transparency requires that poli- cies and procedures for surveillance be
...

p.000024:
p.000024: Public health surveillance activities require investment of societal resources to preserve, protect and
p.000024: promote health. In all countries, but especially in low-resource settings, allo- cating societal resources for
p.000024: public health sur- veillance requires prioritization. This issue is discussed further in Guideline 5.
p.000024:
p.000024: Guidelines
p.000025: 25
p.000025:
p.000025: Once surveillance data are available, Member States have the moral duty to use the data actively to promote
p.000025: better health outcomes. Even when resources limit the capacity of countries to take immediate action
p.000025: on the basis of the ﬁndings of public health surveil- lance, the data provide the evidentiary basis for
p.000025: advocacy directed at both the national
p.000025: and global communities, thus potentially empowering the most vulnerable. The pur- suit of equity
p.000025: establishes a warrant for sur- veillance, and the global community should provide the necessary help in
p.000025: moving from collecting and analysing data to action (see Guideline 6).
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: Interior view: a nurse is examining two young children in the dining area of the home; the mother is standing to the
p.000025: left; further to the left is a large stove situated next to a ﬁreplace.
p.000025: Source: The National Library of Medicine
p.000025:
p.000025:
p.000025:
p.000026: 26
p.000026: Guidelines
p.000026:
p.000026:
p.000026:
p.000026: Guideline 2. Countries have an obligation to develop appropriate, effective mechanisms to ensure ethical surveillance.
p.000026:
p.000026: Public health surveillance has inherent beneﬁts for the functioning of the public health sys- tem, as well as
p.000026: risks. Countries should have an appropriate, effective mechanism for ensur- ing adherence to ethical standards
p.000026: in both emergency and non-emergency situations. Decisions about changing an established sur- veillance
p.000026: system can pose important ethical challenges. Examples of changes that may require ethical scrutiny
p.000026: include: collecting data elements that reveal stigmatized behaviour; adding new elements of data collection, such
p.000026: as measurements of CD4 counts as part of routine HIV/AIDS surveillance; adopting new uses for existing
p.000026: surveillance data, such as for case management or contact tracing; or using public health surveillance data for
p.000026: commercial or security purposes.
p.000026:
p.000026: In the case of research, review committees monitor adherence to ethics standards. Such an independent,
...

p.000028: reduce morbid- ity and mortality, increase access to the health system and services and reduce health dispari- ties
p.000028: and thereby inequities. All further discus- sions of public health surveillance in these guidelines is
p.000028: based on the assumption that it is undertaken exclusively for a legitimate public health purpose.
p.000028:
p.000028: Literature on good governance usually con- siders legitimate measures to be those that are publicly
p.000028: defensible, morally justiﬁed and/
p.000028: or socially acceptable in pursuit of a common good. (53, 54) Any collection of personally identiﬁable
p.000028: information that does not meet these conditions would be ethically problem- atic. A legitimate public
p.000028: health purpose is required not only for the collection of data but also for the further use of data already
p.000028: in hand.
p.000028:
p.000028: Data collected for clinical purposes (for exam- ple to diagnose infectious disease, to moni- tor microbial
p.000028: resistance, to monitor NCDs like diabetes or to track behaviour associated with coronary heart disease or
p.000028: obesity) can be used for legitimate public health surveillance purposes, provided that such use meets the
p.000028: criteria bar set in guidelines 1, 3, 4 and 7–14 of this document. Such repurposing requires adequate protection of
p.000028: data security and con- ﬁdentiality (Guideline 10).
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028: Children`s Environmental Health in India.
p.000028: Source: WHO /Diego Rodriguez
p.000028:
p.000028: Guidelines
p.000029: 29
p.000029:
p.000029:
p.000029: Guideline 4. Countries have an obligation to ensure that the data collected are of sufﬁcient quality, including being
p.000029: timely, reliable and valid, to achieve public health goals.
p.000029:
p.000029: Data should meet the most exacting yet reasonable standards with regard to com- pleteness,
p.000029: uniqueness, timeliness, validity, accuracy and consistency for the purpose and the resources available to
p.000029: fulﬁl that purpose. Where relevant, this requirement extends to external quality assurance of laboratory
p.000029: data. The quality of data is a precondition of their ethical use. Determining the adequacy of data,
p.000029: however, depends, in part, on whether they are to be used to intervene at the level of the individual
p.000029: (e.g. contact tracing) or the population (e.g. estimating the incidence and prevalence of a
p.000029: disease or exposure). Their adequacy will also depend on whether a disease is infectious, noncommunicable
p.000029: or environmental, and whether the condition is chronic or acute. How data quality is assured from a
p.000029: technical perspective will depend on the priority, the context and the type of sur- veillance. While some
p.000029: countries and institu- tions explicitly stress the accuracy or reliability of data (55), others value rapid
p.000029: collection of useful data over complete accuracy.
p.000029:
p.000029: Countries have obligations to ensure suf- ﬁcient numbers of trained staff to generate and competently
p.000029: analyse surveillance data
p.000029:
...

Searching for indicator liberty:

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p.000020: surveillance are at risk. There is a complex literature on economics and moral philosophy that seeks to deﬁne and
p.000020: distinguish the terms “public good”, “public goods,” and “the com- mon good” (45). After careful delibera-
p.000020: tion, the committee adopted the term “the common good” to capture the notion of public goods more
p.000020: broadly conceived than in the narrow economic sense.
p.000020: Equity: Public health ethics is centrally concerned with the idea of equity. It is well established that
p.000020: social inequality has adverse effects on health (46). Not all inequality is within human control or is
p.000020: morally relevant. Morally prob- lematic inequality is commonly referred to as inequity. A just or fair society
p.000020: will attempt to provide equitable conditions for humans to ﬂourish, with health as a central component.
p.000020: Equity some- times requires that the most vulnerable people receive what may appear to be disproportionate
p.000020: resources: that is, the unfair distribution of risks requires addi- tional resources to balance the scales.
p.000020: Public health surveillance can further the pursuit of equity by identifying the particular problems
p.000020: of disadvantaged populations, including global communi- ties, providing the evidence for focused health campaigns
p.000020: and identifying the basis of unfair differences in health.
p.000020:
p.000020: Respect for persons: Public health eth- ics is concerned with the rights, liberty, and other interests of individuals
p.000020: as well as overall population well-being. When- ever possible, individuals should be involved in decisions
p.000020: that affect them. In some cases, individuals should be free to make their own choices; in other cases,
p.000020: when population-level interven- tions may be necessary, individuals can be consulted and involved in
p.000020: decision- making. But many individuals (such as young children) cannot make their own choices, and the State has
p.000020: an obligation to protect them and promote their long- term health interests. Undertaking pub- lic health surveillance
p.000020: is, itself, arguably an expression of respect for persons. This further requires ensuring that data about
p.000020: individuals and groups are pro- tected and risks for harm are minimized
p.000020:
p.000020: Framing the ethics of surveillance
p.000021: 21
p.000021:
p.000021:
p.000021: to the greatest possible extent. Finally, surveillance further engenders respect for persons by making
p.000021: protection or amelioration possible.
p.000021:
p.000021: Good governance: Although good gov- ernance is not an ethical principle but rather a political aspiration, it
p.000021: is subject to a number of ethical considerations. To ensure that the ethical challenges posed by public health
p.000021: action are addressed systematically and fairly, governance mechanisms must be accountable and open to
...

p.000050: Organizations of Medical Sciences; 2009.
p.000050: 36. Hepple B, Nufﬁeld Council on Bioethics. Public health: ethical issues. London: Nufﬁeld Council on Bioethics;
p.000050: 2007.
p.000050: 37. Ethics in epidemics, emergencies and disasters: research, surveillance and patient care: WHO train- ing manual.
p.000050: Geneva: World Health Organization; 2015.
p.000050: 38. Rubel A. Justifying public health surveillance: basic interests, unreasonable exercise, and privacy. Kennedy
p.000050: Inst Ethics J 2012;22:1–33.
p.000050:
p.000050: References
p.000051: 51
p.000051:
p.000051: 39. Fairchild AL. Dealing with Humpty Dumpty: research, practice, and the ethics of public health
p.000051: surveillance. J Law Med Ethics 2003;31:615–623.
p.000051: 40. Dawson A, Jennings B. The place of solidarity in public health ethics. Public Health Rev 2013;
p.000051: 34:65–79.
p.000051: 41. Beauchamp DE. The health of the republic: epidemics, medicine, and moralism as challenges to democracy.
p.000051: Philadelphia, PA: Temple University Press; 1990.
p.000051: 42. Upshur RE. Principles for the justiﬁcation of public health intervention. Can J Public Health
p.000051: 2002;93:101–103.
p.000051: 43. Kaul I, Faust M. Global public goods and health: taking the agenda forward. Bull World Health
p.000051: Organ 2001;79:869–874.
p.000051: 44. Selgelid MJ. Infectious disease ethics : limiting liberty in contexts of contagion. New York, NY:
p.000051: Springer; 2011.
p.000051: 45. Deneulin S, Townsend N. Public goods, global public goods and the common good. Int J Soc Econ 2007;34:19–36.
p.000051: 46. Closing the gap in a generation: health equity through action on the social determinants of
p.000051: health: ﬁnal report of the commission on social determinants of health. Geneva: World Health Organization;
p.002008: 2008
p.002008: 47. Guidance on ethics of tuberculosis prevention, care and control. Geneva: World Health Organiza- tion; 2010.
p.002008: 48. Ethics guidance for the implementation of the End TB strategy. Geneva: World Health Organiza- tion; 2017.
p.002008: 49. Guidance for managing ethical issues in infectious disease outbreaks. Geneva: World Health Orga- nization; 2016.
p.002008: 50. Scott JC. Seeing like a state: how certain schemes to improve the human condition have failed. New Haven, CT:
p.002008: Yale University Press; 1998.
p.002008: 51. Promoting the health of refugees and migrants. Executive Board resolution 140/24. Geneva: World
p.002008: Health Organization; 2017.
p.002008: 52. Willison DJ, Ondrusek N, Dawson A, Emerson C, Ferris LE, Saginur R, et al. What makes public
p.002008: health studies ethical? Dissolving the boundary between research and practice. BMC Med Ethics 2014;15:61.
p.002008: 53. Graham J, Amos B, Plumptre T. Principles for Good Governance in the 21st Century: Policy Brief
p.002008: No. 15. Ottawa: Institute on Governance, 1993. Available at: http://iog.ca/wp-content/
p.002008: uploads/2012/12/2003_August_policybrief151.pdf
...

Searching for indicator language:

(return to top)
p.000019: appropriate ethical guidance and review – that is, for a para- digm of accountability that responds to
p.000019: the demands of public health and that is distinct from the systems that have governed research for half a
p.000019: century.
p.000019:
p.000019: Public health ethics
p.000019:
p.000019: The discipline of public health ethics has developed rapidly during the past two decades.
p.000019: Its central focus has been on articu- lating and exploring the ethical issues that arise in the pursuit of
p.000019: population health. This has resulted in a focus on concepts such as the common good, equity,
p.000019: solidarity, reci- procity, and population well-being. This is not to say that more individual values
p.000019: such as autonomy, privacy, and individual rights
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019: A crowd at a community event to launch a vaccination campaign.
p.000019: Source: WHO /Garry Smyth
p.000019:
p.000020: 20
p.000020: Framing the ethics of surveillance
p.000020:
p.000020:
p.000020:
p.000020: and liberties are not also important ethical considerations; however, these more “social” or “public” values are
p.000020: reﬂected in related yet not wholly overlapping concepts that capture the broad importance of community and the
p.000020: afﬁrmative duty to act. Some in the ﬁeld use the language of solidarity (40), drawing on the communitarian
p.000020: tradition in public health (41); others describe the mutual obligations of reciprocity (42). The Nufﬁeld
p.000020: Council on Bioethics sought to capture the duties and responsibilities of government in relation to public
p.000020: health by the concept of “steward- ship” (36).
p.000020:
p.000020: After a careful review, reﬂection and delibera- tion, the WHO Guidelines Development Group determined that the
p.000020: following ethical consid- erations are of particular importance for public health surveillance. They represent
p.000020: the back- bone of the guidelines:
p.000020:
p.000020: Common good: Surveillance is widely acknowledged to be a public good (43), and some of the beneﬁts
p.000020: it pro- vides cannot be subdivided into indi- vidual private beneﬁts because they are fundamentally shared (41,
p.000020: 44). Surveil- lance is justiﬁed, fundamentally, as a requirement for the good of all. With- out adequate
p.000020: oversight by public health bodies and the participation of individ- uals and communities, the shared ben- eﬁts of
p.000020: surveillance are at risk. There is a complex literature on economics and moral philosophy that seeks to deﬁne and
p.000020: distinguish the terms “public good”, “public goods,” and “the com- mon good” (45). After careful delibera-
p.000020: tion, the committee adopted the term “the common good” to capture the notion of public goods more
p.000020: broadly conceived than in the narrow economic sense.
p.000020: Equity: Public health ethics is centrally concerned with the idea of equity. It is well established that
...

p.000021: public scrutiny. Although pro- tection of the common good must draw on the best available evidence,
p.000021: decisions will have to be made in the face of uncertainty. Accountability, transparency and community
p.000021: engage- ment are means of justifying public policy structures that promote respect for persons,
p.000021: equity, and the common good. Transparency requires that poli- cies and procedures for surveillance be
p.000021: communicated clearly and that affected individuals or communities be aware of any decisions concerning them. Trans-
p.000021: parency also requires public reporting of the results of surveillance (in ano- nymized or aggregated form).
p.000021: Without such knowledge, communities cannot be empowered to demand government action or to protect themselves in
p.000021: the absence of alternatives.
p.000021:
p.000021: These are not the only relevant ethical consid- erations with regard to the nature of surveil- lance programmes
p.000021: and practice but the ones considered central to making decisions in the speciﬁc context of public health
p.000021: surveillance by those involved in development of these guidelines.
p.000021:
p.000021: While over the past few decades the global discourse on research ethics has come to
p.000021:
p.000021: an agreement on how best to frame issues, public health ethics has not reached such a juncture. Thus,
p.000021: even in documents explicitly grounded in public health ethics, differences in language and emphasis remain.
p.000021: This docu- ment is one of three recent WHO-sponsored initiatives to develop ethical frameworks for
p.000021: disease control. Building on the original “Guidance on ethics of tuberculosis preven- tion, care and
p.000021: control” in 2010 (47), the “Ethics guidance for the implementation of the End TB Strategy” (48) addresses
p.000021: the most critical challenges to reducing the number of deaths from tuberculosis by 95% by 2030
p.000021: and the number of new cases by 90% between 2015 and 2035. The “Guidance for managing ethical issues in
p.000021: infectious disease outbreaks” (49) in 2016, in response to the outbreak of Ebola virus disease in West Africa
p.000021: in 2014–2015, underscored the importance of providing ethics guidance beyond “a spe- ciﬁc pathogen in
p.000021: isolation” to “cross-cutting ethical issues that apply to infectious disease outbreaks generally”.
p.000021:
p.000021: The three projects obviously have important continuity. All, for example, emphasize equity, justice, and the
p.000021: common good (sometimes expressed as “stewardship” or “reciproc- ity”). All stress the importance
p.000021: of respecting the dignity of persons (sometimes emphasiz- ing autonomy or privacy). Accountability and the
p.000021: importance of good governance either explicitly or implicitly informs all three. They also have
p.000021: relevant differences that reﬂect the subject of each. The tuberculosis guidelines, for example, address the
...

p.000044: sufﬁciently important for advancement of the common good and (ii) would not be feasible without access
p.000044: to the surveillance data in question. There may sometimes be disagreement about what should be con-
p.000044: sidered “sufﬁciently important” research to justify sharing of surveillance data for research
p.000044: purposes. This is a matter that local governments, public health authorities and/ or research ethics committees
p.000044: (as described below) should judge, taking into account the considerations and guidelines set out in this
p.000044: document.
p.000044:
p.000044: Sharing of surveillance data for research pur- poses requires appropriate safeguards, such as ethical oversight
p.000044: (see Guideline 2), anonymiza- tion, and data security. While the kind of ethi- cal review required for conducting
p.000044: research is not appropriate for conducting public health surveillance, surveillance data should be shared only
p.000044: for research projects that have been reviewed and approved by an appropriate
p.000044: research ethics committee or another appro- priate body, consistent with international and local
p.000044: standards on the ethical conduct of research. In making decisions about granting access to surveillance data,
p.000044: ethics committees should consider the potential public health impact of research (Is the research sufﬁciently
p.000044: important, or does it have, in the language of CIOMS, “social value”?), the risks to the sub- jects involved, the
p.000044: measures in place to protect privacy, and the importance and feasibility of seeking consent.
p.000044:
p.000044: Striking the appropriate balance between safeguards and research advancement will sometimes be
p.000044: challenging. One controversial way of sharing sensitive information on drug use has been to delete any
p.000044: information on substance use disorders from individual clinical records released to researchers. Such protec-
p.000044: tion in the name of privacy has become the centre of controversy in the context of a wide- reaching opioid
p.000044: epidemic. One group of critics has argued that this has left researchers “ﬂy- ing blind” (91).
p.000044:
p.000044: Researchers who have been provided with surveillance data should inform public health authorities about
p.000044: their ﬁndings. Before surveil- lance data are shared with researchers, there should be agreement about:
p.000044: appropriate data uses, restrictions on data re-sharing, adequate acknowledgement of the data source in publi- cations,
p.000044: and data destruction conditions at the end of the research phase.
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044: Guidelines
p.000045: 45
p.000045:
p.000045:
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p.000012: transparently. Countries should ensure implementation of these guidelines and monitor it regularly.
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
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p.000012:
p.000012:
p.000012:
p.000012:
p.000012:
p.000012: Introduction
p.000013: 13
p.000013:
p.000013: II. Background
p.000013: Deﬁning public health surveillance
p.000013:
p.000013: Some countries deﬁne surveillance narrowly, others quite broadly. These guidelines cover surveillance as
p.000013: broadly understood. In the simplest formulations, surveillance is deﬁned as “continued watchfulness” (6) or
p.000013: “the mon- itoring of events in humans, linked to action” (7). WHO generally deﬁnes surveillance as “the continuous,
p.000013: systematic collection, analysis and interpretation of health-related data needed for the planning,
p.000013: implementation, and evalu- ation of public health practice” (8). Health data are those pertaining to
p.000013: communicable and NCDs, injuries and conditions and their related risks and determinants. For infectious
p.000013: disease outbreaks (and events that suggest a “potential for international disease spread”), the
p.000013: International Health Regulations (2005) (IHR) deﬁne surveillance as “the systematic on-going
p.000013: collection, collation and analysis of data for public health purposes and the timely dissemination of public
p.000013: health information for assessment and public health response as necessary” (9).
p.000013: Understanding of public health surveillance differs considerably from country to country. Although surveillance is
p.000013: usually described as systematic or continuous, not all countries, institutions or scholars single out the
p.000013: rou- tine nature of public health surveillance but rather emphasize the purpose and function of data
p.000013: collection (see Table 1). Likewise, although disease and injury always ﬁgure centrally, some
p.000013: deﬁnitions include determi- nants of important public health events (10) and environmental conditions that
p.000013: affect health (11). Vital registration of events like births and deaths, although often not specif- ically
p.000013: described as part of a “public health” surveillance system, is often considered to be surveillance.
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013: Health worker collecting records and ﬁlling out surveys with the inhabitants of Salto, Uruguay.
p.000013: Source: WHO/TDR /Sebastian Oliel
p.000013:
p.000013:
p.000013: Although international agencies often spon- sor, subsidize and oversee national surveys in low- and
p.000013: middle-income countries to track trends in risk factors or health outcomes, national public health
p.000013: authorities are usu- ally responsible for public health surveillance systems and activities. The IHR,
p.000013: however, recognizes surveillance data from beyond the formal channels of reporting, including unof- ﬁcial
p.000013: or informal sources, provided that they meet standards of reliability and validity.
p.000013:
p.000013: For some organizations and experts, only those activities in which the purpose of data gather- ing has been deﬁned in
p.000013: advance and, indeed, in which the questions driving data collec- tion are set in advance meet the deﬁnition of
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p.000017: between showing “good” results or losing their jobs, adversely affecting the quality of data in some settings (26, 27).
p.000017:
p.000017: These guidelines are based on the understand- ing that surveillance is so fundamental a public health practice that
p.000017: its advancement cannot depend on crises or citizen protests to make the case for tracking disease for
p.000017: the sake of public health. While these guidelines represent a call to action, it is not a call to unrestrained
p.000017: action. Rather, public health surveillance, con- ducted in a manner that anticipates ethical challenges and
p.000017: proactively seeks to reduce unnecessary risks, provides the architecture for social well-being.
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000018: 18
p.000018: Background
p.000018:
p.000018: III. Framing the ethics of surveillance
p.000018:
p.000018: Existing guidelines
p.000018:
p.000018: Limited academic literature on the practice of public health surveillance addresses the major ethical questions that
p.000018: arise in data collection; when the data are actually stored, used and shared; and data dissemination. The
p.000018: academic literature is (28), however, no substitute for guidelines that go beyond current disease-
p.000018: speciﬁc, national recommendations (29).
p.000018:
p.000018: In the decades since the Second World War, both international and national bodies have proposed ethical
p.000018: principles, guidelines and laws to govern research with human sub- jects. In response to egregious
p.000018: harm inﬂicted on individuals coerced into clinical research, new codes of ethics uniformly prioritized indi-
p.000018: vidual self-determination and emphasized the importance of informed consent for research, while acknowledging that
p.000018: it would hardly be straightforward in complex situations to bal- ance the protection of human research
p.000018: sub- jects against the social beneﬁt of the research. In the practice of clinical ethics, autonomy assumed a
p.000018: place of singular importance, rep- resenting a fundamental change in a moral world view (30-33).
p.000018:
p.000018: In its “International guidelines for ethical review of epidemiological studies” in 1991, CIOMS acknowledged that
p.000018: existing guidance focused on “patients and individual subjects” was not sufﬁcient for studies involving
p.000018: “groups” of people. After considerable controversy, a con- sensus emerged: CIOMS stressed the impor- tance of
p.000018: the principles of research ethics ﬁrst set out in the Nuremberg Code but recognized that application in the
p.000018: epidemiological context would require ﬂexibility (34). The tradition that developed was one in
p.000018: which research
p.000018:
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p.000024: promote health. In all countries, but especially in low-resource settings, allo- cating societal resources for
p.000024: public health sur- veillance requires prioritization. This issue is discussed further in Guideline 5.
p.000024:
p.000024: Guidelines
p.000025: 25
p.000025:
p.000025: Once surveillance data are available, Member States have the moral duty to use the data actively to promote
p.000025: better health outcomes. Even when resources limit the capacity of countries to take immediate action
p.000025: on the basis of the ﬁndings of public health surveil- lance, the data provide the evidentiary basis for
p.000025: advocacy directed at both the national
p.000025: and global communities, thus potentially empowering the most vulnerable. The pur- suit of equity
p.000025: establishes a warrant for sur- veillance, and the global community should provide the necessary help in
p.000025: moving from collecting and analysing data to action (see Guideline 6).
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
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p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: Interior view: a nurse is examining two young children in the dining area of the home; the mother is standing to the
p.000025: left; further to the left is a large stove situated next to a ﬁreplace.
p.000025: Source: The National Library of Medicine
p.000025:
p.000025:
p.000025:
p.000026: 26
p.000026: Guidelines
p.000026:
p.000026:
p.000026:
p.000026: Guideline 2. Countries have an obligation to develop appropriate, effective mechanisms to ensure ethical surveillance.
p.000026:
p.000026: Public health surveillance has inherent beneﬁts for the functioning of the public health sys- tem, as well as
p.000026: risks. Countries should have an appropriate, effective mechanism for ensur- ing adherence to ethical standards
p.000026: in both emergency and non-emergency situations. Decisions about changing an established sur- veillance
p.000026: system can pose important ethical challenges. Examples of changes that may require ethical scrutiny
p.000026: include: collecting data elements that reveal stigmatized behaviour; adding new elements of data collection, such
p.000026: as measurements of CD4 counts as part of routine HIV/AIDS surveillance; adopting new uses for existing
p.000026: surveillance data, such as for case management or contact tracing; or using public health surveillance data for
p.000026: commercial or security purposes.
p.000026:
p.000026: In the case of research, review committees monitor adherence to ethics standards. Such an independent,
p.000026: impartial oversight mecha- nism allows for close scrutiny and can ensure that relevant protection is
...

p.000048:
p.000048:
p.000048:
p.000048:
p.000048:
p.000048:
p.000048:
p.000048:
p.000048:
p.000048:
p.000048:
p.000048: Sphere and continents with binary code zero – one.
p.000048: Source: CC0 Public Domain
p.000048:
p.000048: The shifting boundaries of surveillance
p.000049: 49
p.000049:
p.000049: References
p.000049:
p.000049: 1. Sustainable Development Goals. New York, NY: United Nations; 2015 (http://www.un.org/
p.000049: sustainabledevelopment/sustainable-development-goals/, accessed 19 December 2016).
p.000049: 2. Fairchild AL, Bayer R, Colgrove JK, Wolfe D. Searching eyes. Berkeley, CA: University of California Press;
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p.000049: regime. Conﬂict Health 2015;9:29.
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p.000049: 5. WHO handbook for guideline development. Geneva: World Health Organization; 2014.
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p.000049: World Health Organ 1994;72:285–304.
p.000049: 7. Institute of Medicine. Addressing foodborne threats to health: policies, practices, and global coor- dination.
p.000049: Workshop summary. Washington DC: National Academies Press; 2006.
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p.000049: Organization; 1997.
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p.000049: approach. J Biomed Informat 2014;52:28–35.
p.000049: 16. Tatem AJ, Huang Z, Narib C, Kumar U, Kandula D, Pindolia DK, et al. Integrating rapid risk mapping and mobile
p.000049: phone call record data for strategic malaria elimination planning. Malar J 2014;13:52.
p.000049: 17. Wesolowski A, Stresman G, Eagle N, Stevenson J, Owaga C, Marube E, et al. Quantifying travel behavior for
p.000049: infectious disease research: a comparison of data from surveys and mobile phones. Sci Rep 2014;4:5678.
p.000049: 18. Lajous M, Danon L, Lopez-Ridaura R, Astley CM, Miller JC, Dowell SF, et al. Mobile messaging as surveillance
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p.002008: 50. Scott JC. Seeing like a state: how certain schemes to improve the human condition have failed. New Haven, CT:
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p.002008: health studies ethical? Dissolving the boundary between research and practice. BMC Med Ethics 2014;15:61.
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p.002008: human_resiliencesustainingmdgprogressinanageofeconomicun.html54.
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p.000052: 56. German RR, Lee LM, Horan JM, Milstein RL, Pertowski CA, Waller MN, et al. Updated guidelines for evaluating
p.000052: public health surveillance systems: recommendations from the Guidelines Working Group. MMWR Recomm Rep 2001;50:1-35;
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p.000052: 64. Bioethics for Every Generation: The Presidential Commission for the Study of Bioethical Issues
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p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005: WHO Guidelines on Ethical Issues in Public Health Surveillance
p.000005:
p.000005: WHO guidelines on ethical issues in public health surveillance ISBN 978-92-4-151265-7
p.000005:
p.000005: © World Health Organization 2017
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p.000009:
p.000009: 
p.000009: Health system
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Monitoring of health system performance
p.000009: Demographic variables
p.000009:
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Evaluation of control measures
p.000009: Health-related events (e.g. food and drug safety, vaccine reactions)
p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Policy analysis
p.000009:
p.000009:
p.000009:
p.000009: Registries Case reports Repeated
p.000009: surveys
p.000009: Data collection tools
p.000009: Bio-banks Secondary data sources
p.000009:
p.000009: 
p.000009: Types of analysis
p.000009:
p.000009:
p.000009: Population-based (universal or sentinel sites)
p.000009:
p.000009:
p.000009: Social media
p.000009:
p.000009: Estimation of incidence or prevalence
p.000009: Measurement of associations
p.000009: Assessment of trends
p.000009:
p.000009: 
p.000009: Uses
p.000009: Assessment of spatial patterns
p.000009: Data mining
p.000009:
p.000009: Policy change
p.000009:
p.000009: Source: A.A. Haghdoost
p.000009: Structural intervention
p.000009: Case or epidemic detection
p.000009: Testing of hypotheses
p.000009: Implementation research
p.000009: Quality assurance
p.000009:
p.000010: 10
p.000010: Introduction
p.000010:
p.000010:
p.000010:
p.000010: shared with populations and policy-makers in a timely, appropriate manner.
p.000010:
p.000010: Yet surveillance has been the subject of some- times bitter controversy. Public health sur- veillance may
p.000010: limit not only privacy but also other civil liberties. For example, surveillance may trigger mandatory
p.000010: quarantine, isolation, or seizure of property during an epidemic (2). When surveillance involves
p.000010: name-based reporting (that is, reporting by name), it can, to the extent that populations are made aware, trigger
p.000010: profound concern about intrusions on privacy, discrimination, and stigmatization. Name-based reporting can also
p.000010: seriously harm people and property, as is seen when mob reactions supersede care, compassion and the effective
p.000010: rule of law. Concern is compounded in the absence of trust that the public health system will keep names
p.000010: secure or will release aggregated data and related information (referred to simply as “data” from
p.000010: this point forward, as records contain information that varies in type and scope) in a sensitive manner (2). In
p.000010: some countries, the HIV/AIDS pandemic sparked controversy about tracking by name those carrying the virus, but,
p.000010: even when con- ﬁdentiality was assured, when details of risky behaviour and affected populations became
p.000010: public, groups like gay sex workers and inject- ing drug users experienced social harm such as discrimination
p.000010: and stigmatization. Because of these concerns, the HIV/AIDS epidemic spurred ethical and regulatory
p.000010: guidelines at both national and international levels that could be used in planning, collecting and then
p.000010: using personal and aggregated data.
p.000010:
p.000010: Just as often, however, failure to conduct public health surveillance has generated political and ethical controversy
p.000010: because of concern that “what doesn’t get counted doesn’t count”. Environmental and occupational
...

p.000032: below 2 °C. (67)
p.000032:
p.000032: Guidelines
p.000033: 33
p.000033:
p.000033:
p.000033: Guideline 8. Those responsible for surveillance should identify, evaluate, minimize and disclose risks for harm before
p.000033: surveillance is conducted. Monitoring for harm should be continuous, and, when any is identiﬁed, appropriate action
p.000033: should be taken to mitigate it.
p.000033:
p.000033: Even when public health surveillance is clearly justiﬁed to promote the common good, Mem- ber States and those
p.000033: responsible for conduct- ing surveillance should remain alert to the possibility that harm can be
p.000033: caused to both individuals and communities (Table 2).
p.000033:
p.000033: This does not mean that surveillance should not be conducted. Rather, those conducting surveillance have
p.000033: an obligation to identify potential harm beforehand, to monitor for harm during and after surveillance
p.000033: and to put in place processes to mitigate harm. Without continuous monitoring, mitigation is impos- sible.
p.000033: This is vital, not only because it is wrong to cause unnecessary harm, but also because harm – to both
p.000033: individuals and communi- ties, such as loss of property value or tourism dollars – may also damage public
p.000033: trust in the programme and in public health in general. (See guidelines 5, 12 and 13 and the discus-
p.000033: sion of good governance in section III.)
p.000033:
p.000033: In some instances, countries have provided compensation for the harm that might
p.000033:
p.000033: inevitably accompany surveillance. In the con- text of SARS, Chinese Taipei gave people who were quarantined the
p.000033: equivalent of US$ 147 (68). Basic welfare beneﬁts or sick pay for those deprived of work as a result
p.000033: of surveil- lance are other possibilities. The possibility of compensation should not, however, pose a
p.000033: barrier to surveillance (69).
p.000033:
p.000033: There are many different types of harm: eco- nomic, legal, psychological, social (and reputa- tional) and
p.000033: physical. All should be considered in relation to surveillance (70-72). For example, a migrant or a person in another
p.000033: disadvantaged group may be identiﬁed as being at higher risk for an infectious disease through surveillance, and this
p.000033: could lead to stigmatization of the group. Relevant information must be handled very carefully: reputations can
p.000033: quickly be dam- aged, with devastating results across a spec- trum that may include not-yet-documented
...

Searching for indicator faith:

(return to top)
p.000045: determination of whether the threat is of suf- ﬁcient magnitude to warrant potential damage to the integrity of and
p.000045: trust in public health sur- veillance systems. Sanctions must be in place to prevent inappropriate data-sharing
p.000045: by public health agencies and inappropriate use of data by agencies outside the public health sector.
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045: WHO Immunization ofﬁcers visit Quang Binh Province, Viet Nam to monitor the Measles-Rubella Immunization campaign.
p.000045: Source: WHO / WPRO /Emmanuel Eraly
p.000045:
p.000046: 46
p.000046: Guidelines
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046: A barcode is placed at the entrance of houses. After being ﬂashed with a smartphone, the barcode provides information
p.000046: about whether the house was controlled and declared dengue free or not.
p.000046: Source: WHO/TDR /Catalina Cardenas
p.000046:
p.000046: Guidelines
p.000047: 47
p.000047:
p.000047: V. The shifting boundaries of surveillance
p.000047:
p.000047: Various “non-State” actors are involved in public health surveillance, including NGOs, faith-based
p.000047: organizations, professional organizations, research institutions, funding agencies, and
p.000047: supranational agencies like WHO and the European Centre for Disease Prevention and Control. Public
p.000047: surveillance functions may even be outsourced to private companies. This may be a cause of concern, as
p.000047: the data may no longer be owned by and accessible to State agencies. Nevertheless, the vicissitudes of
p.000047: surveillance mean that any set of ethical guidelines must cross boundaries – not only national boundaries
p.000047: but lines that have traditionally separated the public from the private (93).
p.000047:
p.000047: The problem of blurred boundaries has become even more complicated in the era of big data. By
p.000047: “big data”, we refer to both the increased volume of data that can now be col- lected and stored, usually in digital
p.000047: form, and the computational power available to pro- cess it rapidly. The ubiquitous use of personal
p.000047: computers, smartphones, wearable devices, closed-circuit cameras, genetic sequencers, semi-autonomous
p.000047: drones, and other technol- ogies means that we produce a steady stream of digital data.
p.000047:
p.000047: A data-centric technological revolution has generated great enthusiasm about the emerg- ing potential
p.000047: beneﬁts of mining electronic health records, genomic data and other biolog- ical materials, social media
p.000047: communications, satellite imagery and other digital datasets to identify emerging disease threats,
p.000047: interrupt foodborne disease outbreaks and improve col- laboration among public health organizations. Drones have been
p.000047: hailed as a “game changer” in disease surveillance. Some have argued that
p.000047:
...

Searching for indicator student:

(return to top)
p.000043: practice but is ethically imperative. Ethically appropriate, rapid shar- ing of data can help in
p.000043: identifying etiological factors; predicting disease spread; evaluating existing and novel treatment,
p.000043: symptomatic care and preventive measures; and guiding
p.000043: the deployment of limited resources. As dis- cussed in the WHO guidance on managing ethical issues in
p.000043: infectious disease outbreaks (49), clinical and research data that are crucial for emergency response should also be
p.000043: shared. Data-sharing is also an obligation under the IHR in both health emergencies and infectious disease
p.000043: outbreaks.
p.000043: As part of continuous pre-epidemic prepared- ness, countries should review their laws, poli- cies and practices on
p.000043: data sharing to ensure that they adequately protect the conﬁden- tiality of personal information
p.000043: and address other relevant ethical questions, such as set- tling disputes about the ownership or control of
p.000043: surveillance data. Efforts should be made to ensure that rapid sharing of surveillance information with
p.000043: immediate implications for protecting public health and advancing the common good should not preclude
p.000043: subse- quent publication in a scientiﬁc journal (87).
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: Medical student and district surveillance ofﬁcer investigating suspected Ebola cases in Western Region of
p.000043: Sierra Leone.
p.000043: Source: WHO /Stéphane Saporito
p.000043:
p.000044: 44
p.000044: Guidelines
p.000044:
p.000044:
p.000044:
p.000044: Guideline 16. With appropriate justiﬁcation and safeguards, public health agencies may use or share surveillance data
p.000044: for research purposes.
p.000044:
p.000044: Surveillance data have often served as a foun- dation for important public health research (88-90). For example,
p.000044: cancer registries have been used in longitudinal epidemiological studies on survival and treatment
p.000044: efﬁcacy. It may be permissible to share surveillance data with researchers undertaking studies that (i) are
p.000044: sufﬁciently important for advancement of the common good and (ii) would not be feasible without access
p.000044: to the surveillance data in question. There may sometimes be disagreement about what should be con-
p.000044: sidered “sufﬁciently important” research to justify sharing of surveillance data for research
p.000044: purposes. This is a matter that local governments, public health authorities and/ or research ethics committees
p.000044: (as described below) should judge, taking into account the considerations and guidelines set out in this
p.000044: document.
p.000044:
p.000044: Sharing of surveillance data for research pur- poses requires appropriate safeguards, such as ethical oversight
p.000044: (see Guideline 2), anonymiza- tion, and data security. While the kind of ethi- cal review required for conducting
...

Searching for indicator stigma:

(return to top)
p.000010: because of concern that “what doesn’t get counted doesn’t count”. Environmental and occupational
p.000010: health advocates, for example, have long made this argument. Even for events deemed critically
p.000010: important, yawning gaps in surveillance remain. The 2014–2016 Ebola virus disease crisis dramatically
p.000010: underscored the potentially devastating consequences of a lack of capacity to monitor the incidence and spread of
p.000010: disease. An effective public health or clinical response can be seriously hampered by the absence of such
p.000010: data. But if Ebola virus disease is a high- proﬁle example of the costs of inadequate systems and the
p.000010: importance of support from the global community for vital surveillance, many other occupational and
p.000010: environmental exposures – like asthma, silicosis and condi- tions related to exposure to arsenic or lead
p.000010: – go uncounted in both high- and low-income countries. Some commentators have argued that, too often, only
p.000010: when a public health crisis becomes a “threat to international peace and security” does surveillance become a
p.000010: priority for wealthy countries (3). But even when sur- veillance is a priority, fragmented, unlinked or
p.000010: consolidated data sets remain a problem for their effective use for public health purposes.
p.000010:
p.000010: While surveillance is often conducted without public knowledge or concern when the risk for stigma,
p.000010: discrimination or perpetuation of inequity is high, surveillance inevitably involves conﬂicts of values and
p.000010: judgements about how to advance public health goals without harm- ing individuals or groups in society. Thus,
p.000010: the priorities and the distribution of resources for surveillance merit public debate, not only within
p.000010: societies but among global communi- ties. Despite landmark international guidelines on the ethics of research,
p.000010: including epidemio- logical studies, and speciﬁc ethical guidelines for surveillance of particular
p.000010: diseases and/ or in particular countries, there has been no international ethics framework to guide pub-
p.000010: lic health surveillance systems in general that spans infectious diseases, noncommunicable diseases (NCDs),
p.000010: disease outbreaks, environ- mental and occupational exposures, and even national borders. The Council for
p.000010: International
p.000010:
p.000010: Introduction
p.000011: 11
p.000011:
p.000011: Organizations of Medical Sciences (CIOMS), the World Medical Association and others have identiﬁed this
p.000011: gap (4). It is crucial to have ethical guidance as a baseline for judging public health surveillance for
p.000011: all diseases and exposure across national borders.
p.000011:
p.000011:
p.000011: The fragmented, disease-speciﬁc nature of international guidance is not surprising, given the uneven,
p.000011: incomplete state of public health surveillance in both high- and low-resource settings and different national and
...

p.000033: discrimination, expulsion or violence), additional precautions should be
p.000033:
p.000033: Table 2. Types of harm potentially related to disclosure of public health surveillance data
p.000033: Type of harm Result
p.000033: Physical Public attacks, spouse/partner abuse, domestic violence, delayed or
p.000033: inadequate treatment
p.000033: Legal Arrest, prosecution, death penalty, expulsion
p.000033: Social Discrimination, community discrimination, isolation, inability to access
p.000033: care or exclusion from care, rejection from the community
p.000033: Economic Loss of employment or revenue, loss of health care services, loss of insurance,
p.000033: increased insurance premiums, increased health care costs, limited career options, loss of life resources, forced
p.000033: relocation
p.000033: Psychological/emotional Distress, trauma, stigma
p.000033:
p.000034: 34
p.000034: Guidelines
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034: Health brigades in Chiapas, Mexico, during the epidemic of H1N1 inﬂuenza, 2009.
p.000034: Source: WHO /Harold Ruiz
p.000034:
p.000034:
p.000034: taken to protect the individuals or commu- nities at risk. The risk for serious harm may, in rare
p.000034: circumstances, be so great that sur- veillance might be difﬁcult to justify morally. In most cases,
p.000034: however, mitigation strategies can ensure that risks for harm are dealt with adequately. Once harm or
p.000034: potential harm is identiﬁed, action must be taken to reduce the risk, or a plan must be in place for
p.000034: reducing, removing or compensating for any harm.
p.000034:
p.000034: As not all harm can be eliminated, the ben- eﬁts of surveillance should be proportional to the risk for harm.
p.000034: Protective measures should include the way in which health authori- ties present information or
p.000034: action to the
...

p.000035:
p.000035: Individuals or groups in situations of height- ened vulnerability bear an undue proportion of health
p.000035: problems. Responsible authorities should make special efforts to ensure that these populations are
p.000035: included in surveillance in ways that will empower them. How exactly situations of vulnerability should be
p.000035: deﬁned is a subject of dispute in the literature (74). Vulnerability may be diffuse, affecting large
p.000035: communities with limited economic develop- ment, limited access to health care facilities, educational
p.000035: deprivation, occupational risks or wider disadvantages in society. Public health surveillance and health
p.000035: information systems can provide valuable information to aid the development of health programmes and ser-
p.000035: vices to address their health problems and the underlying determinants of health, such as clean water, food
p.000035: security, or gender equality. To promote equity, surveillance should focus on the speciﬁc problems of these
p.000035: vulnerable communities.
p.000035:
p.000035: People with particular susceptibility to disease, harm or injustice are also at increased risk for further
p.000035: burdens, such as discrimination and stigma, attributable to surveillance activities or ﬁndings. For
p.000035: example, refugee groups and undocumented migrants with a higher disease burden may be seen, wrongly, as the cause of
p.000035: disease outbreaks. Similarly, workers with an occupational disease, such as silicosis, who lack access
p.000035: to adequate legal support may
p.000035:
p.000035: be dismissed from work rather than receiving treatment or compensation. Wherever pos- sible, susceptible
p.000035: groups should be identiﬁed before surveillance activities begin in order to minimize the risk for harm. In
p.000035: surveillance pro- grammes, there should be constant monitor- ing for (further) harm to those in conditions of
p.000035: particular vulnerability. When harm does occur, a mitigation strategy should be put in place (see Guideline 8).
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: The HIV oral test on a brothel bed in Belém do Pará, Brazil.
p.000035: Source: Laura Murray
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000036: 36
p.000036: Guidelines
p.000036:
p.000036:
p.000036:
...

Searching for indicator threat:

(return to top)
p.000010: guidelines at both national and international levels that could be used in planning, collecting and then
p.000010: using personal and aggregated data.
p.000010:
p.000010: Just as often, however, failure to conduct public health surveillance has generated political and ethical controversy
p.000010: because of concern that “what doesn’t get counted doesn’t count”. Environmental and occupational
p.000010: health advocates, for example, have long made this argument. Even for events deemed critically
p.000010: important, yawning gaps in surveillance remain. The 2014–2016 Ebola virus disease crisis dramatically
p.000010: underscored the potentially devastating consequences of a lack of capacity to monitor the incidence and spread of
p.000010: disease. An effective public health or clinical response can be seriously hampered by the absence of such
p.000010: data. But if Ebola virus disease is a high- proﬁle example of the costs of inadequate systems and the
p.000010: importance of support from the global community for vital surveillance, many other occupational and
p.000010: environmental exposures – like asthma, silicosis and condi- tions related to exposure to arsenic or lead
p.000010: – go uncounted in both high- and low-income countries. Some commentators have argued that, too often, only
p.000010: when a public health crisis becomes a “threat to international peace and security” does surveillance become a
p.000010: priority for wealthy countries (3). But even when sur- veillance is a priority, fragmented, unlinked or
p.000010: consolidated data sets remain a problem for their effective use for public health purposes.
p.000010:
p.000010: While surveillance is often conducted without public knowledge or concern when the risk for stigma,
p.000010: discrimination or perpetuation of inequity is high, surveillance inevitably involves conﬂicts of values and
p.000010: judgements about how to advance public health goals without harm- ing individuals or groups in society. Thus,
p.000010: the priorities and the distribution of resources for surveillance merit public debate, not only within
p.000010: societies but among global communi- ties. Despite landmark international guidelines on the ethics of research,
p.000010: including epidemio- logical studies, and speciﬁc ethical guidelines for surveillance of particular
p.000010: diseases and/ or in particular countries, there has been no international ethics framework to guide pub-
p.000010: lic health surveillance systems in general that spans infectious diseases, noncommunicable diseases (NCDs),
p.000010: disease outbreaks, environ- mental and occupational exposures, and even national borders. The Council for
p.000010: International
p.000010:
p.000010: Introduction
p.000011: 11
p.000011:
...

p.000045: and non-state actors responsible for public welfare, sharing personally identi- ﬁable data is a fundamentally
p.000045: different mat- ter. Access to such personal information by agencies responsible for national security, law
p.000045: enforcement, or the allocation of social ben- eﬁts should usually be allowed only after legal due process. To
p.000045: preserve trust in public health surveillance systems, there should be compel- ling justiﬁcation for sharing
p.000045: identiﬁable data for non-public health uses.
p.000045:
p.000045: Inappropriate sharing of surveillance data is especially controversial in countries in which law enforcement
p.000045: or other agencies have been
p.000045:
p.000045: implicated in systematic violations of human rights. In these contexts, collaboration with law enforcement
p.000045: agencies may undermine trust in public health surveillance, creating a disincentive for seeking care or
p.000045: honest report- ing of data. This is a particular concern for individuals or groups in situations of particular
p.000045: vulnerability (92). Further, such unwarranted sharing will potentially inﬂict long-term dam- age on public
p.000045: health efforts more broadly.
p.000045:
p.000045: The governance mechanisms recommended in Guideline 2 should ensure that the exceptional conditions, if any, under which
p.000045: identiﬁable sur- veillance data may be shared are speciﬁed and made transparent. Such a review will require
p.000045: determination of whether the threat is of suf- ﬁcient magnitude to warrant potential damage to the integrity of and
p.000045: trust in public health sur- veillance systems. Sanctions must be in place to prevent inappropriate data-sharing
p.000045: by public health agencies and inappropriate use of data by agencies outside the public health sector.
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045:
p.000045: WHO Immunization ofﬁcers visit Quang Binh Province, Viet Nam to monitor the Measles-Rubella Immunization campaign.
p.000045: Source: WHO / WPRO /Emmanuel Eraly
p.000045:
p.000046: 46
p.000046: Guidelines
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046:
p.000046: A barcode is placed at the entrance of houses. After being ﬂashed with a smartphone, the barcode provides information
p.000046: about whether the house was controlled and declared dengue free or not.
p.000046: Source: WHO/TDR /Catalina Cardenas
p.000046:
p.000046: Guidelines
p.000047: 47
p.000047:
p.000047: V. The shifting boundaries of surveillance
p.000047:
p.000047: Various “non-State” actors are involved in public health surveillance, including NGOs, faith-based
p.000047: organizations, professional organizations, research institutions, funding agencies, and
...

Searching for indicator stigmatization:

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p.000009:
p.000009:
p.000009:
p.000009:
p.000009: Policy analysis
p.000009:
p.000009:
p.000009:
p.000009: Registries Case reports Repeated
p.000009: surveys
p.000009: Data collection tools
p.000009: Bio-banks Secondary data sources
p.000009:
p.000009: 
p.000009: Types of analysis
p.000009:
p.000009:
p.000009: Population-based (universal or sentinel sites)
p.000009:
p.000009:
p.000009: Social media
p.000009:
p.000009: Estimation of incidence or prevalence
p.000009: Measurement of associations
p.000009: Assessment of trends
p.000009:
p.000009: 
p.000009: Uses
p.000009: Assessment of spatial patterns
p.000009: Data mining
p.000009:
p.000009: Policy change
p.000009:
p.000009: Source: A.A. Haghdoost
p.000009: Structural intervention
p.000009: Case or epidemic detection
p.000009: Testing of hypotheses
p.000009: Implementation research
p.000009: Quality assurance
p.000009:
p.000010: 10
p.000010: Introduction
p.000010:
p.000010:
p.000010:
p.000010: shared with populations and policy-makers in a timely, appropriate manner.
p.000010:
p.000010: Yet surveillance has been the subject of some- times bitter controversy. Public health sur- veillance may
p.000010: limit not only privacy but also other civil liberties. For example, surveillance may trigger mandatory
p.000010: quarantine, isolation, or seizure of property during an epidemic (2). When surveillance involves
p.000010: name-based reporting (that is, reporting by name), it can, to the extent that populations are made aware, trigger
p.000010: profound concern about intrusions on privacy, discrimination, and stigmatization. Name-based reporting can also
p.000010: seriously harm people and property, as is seen when mob reactions supersede care, compassion and the effective
p.000010: rule of law. Concern is compounded in the absence of trust that the public health system will keep names
p.000010: secure or will release aggregated data and related information (referred to simply as “data” from
p.000010: this point forward, as records contain information that varies in type and scope) in a sensitive manner (2). In
p.000010: some countries, the HIV/AIDS pandemic sparked controversy about tracking by name those carrying the virus, but,
p.000010: even when con- ﬁdentiality was assured, when details of risky behaviour and affected populations became
p.000010: public, groups like gay sex workers and inject- ing drug users experienced social harm such as discrimination
p.000010: and stigmatization. Because of these concerns, the HIV/AIDS epidemic spurred ethical and regulatory
p.000010: guidelines at both national and international levels that could be used in planning, collecting and then
p.000010: using personal and aggregated data.
p.000010:
p.000010: Just as often, however, failure to conduct public health surveillance has generated political and ethical controversy
p.000010: because of concern that “what doesn’t get counted doesn’t count”. Environmental and occupational
p.000010: health advocates, for example, have long made this argument. Even for events deemed critically
p.000010: important, yawning gaps in surveillance remain. The 2014–2016 Ebola virus disease crisis dramatically
p.000010: underscored the potentially devastating consequences of a lack of capacity to monitor the incidence and spread of
p.000010: disease. An effective public health or clinical response can be seriously hampered by the absence of such
p.000010: data. But if Ebola virus disease is a high- proﬁle example of the costs of inadequate systems and the
p.000010: importance of support from the global community for vital surveillance, many other occupational and
p.000010: environmental exposures – like asthma, silicosis and condi- tions related to exposure to arsenic or lead
p.000010: – go uncounted in both high- and low-income countries. Some commentators have argued that, too often, only
...

p.000033: individuals and communi- ties, such as loss of property value or tourism dollars – may also damage public
p.000033: trust in the programme and in public health in general. (See guidelines 5, 12 and 13 and the discus-
p.000033: sion of good governance in section III.)
p.000033:
p.000033: In some instances, countries have provided compensation for the harm that might
p.000033:
p.000033: inevitably accompany surveillance. In the con- text of SARS, Chinese Taipei gave people who were quarantined the
p.000033: equivalent of US$ 147 (68). Basic welfare beneﬁts or sick pay for those deprived of work as a result
p.000033: of surveil- lance are other possibilities. The possibility of compensation should not, however, pose a
p.000033: barrier to surveillance (69).
p.000033:
p.000033: There are many different types of harm: eco- nomic, legal, psychological, social (and reputa- tional) and
p.000033: physical. All should be considered in relation to surveillance (70-72). For example, a migrant or a person in another
p.000033: disadvantaged group may be identiﬁed as being at higher risk for an infectious disease through surveillance, and this
p.000033: could lead to stigmatization of the group. Relevant information must be handled very carefully: reputations can
p.000033: quickly be dam- aged, with devastating results across a spec- trum that may include not-yet-documented
p.000033: types of harm (73). Various moral values and ethical principles should be weighed and bal- anced against
p.000033: each other and a judgement made about fair distribution of burdens and beneﬁts in different surveillance
p.000033: initiatives or systems in a transparent way (see discussions of equity and good governance in section III).
p.000033:
p.000033: When, despite all efforts to mitigate harm, surveillance entails a predictable risk for harm (stigmatization,
p.000033: discrimination, expulsion or violence), additional precautions should be
p.000033:
p.000033: Table 2. Types of harm potentially related to disclosure of public health surveillance data
p.000033: Type of harm Result
p.000033: Physical Public attacks, spouse/partner abuse, domestic violence, delayed or
p.000033: inadequate treatment
p.000033: Legal Arrest, prosecution, death penalty, expulsion
p.000033: Social Discrimination, community discrimination, isolation, inability to access
p.000033: care or exclusion from care, rejection from the community
p.000033: Economic Loss of employment or revenue, loss of health care services, loss of insurance,
p.000033: increased insurance premiums, increased health care costs, limited career options, loss of life resources, forced
p.000033: relocation
p.000033: Psychological/emotional Distress, trauma, stigma
p.000033:
p.000034: 34
p.000034: Guidelines
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034: Health brigades in Chiapas, Mexico, during the epidemic of H1N1 inﬂuenza, 2009.
...

p.000036: (50). Every effort must be made to secure records to prevent unauthorized disclosure. Security is
p.000036: different from privacy and conﬁdential- ity, yet it is an essential component of each. “Security” in
p.000036: this context consists of opera- tional and technological safeguards to protect personal data from unauthorized
p.000036: access or disclosure. Maintaining information security is not fool-proof, as electronic databases can be inﬁltrated.
p.000036:
p.000036: Governments and others who hold surveil- lance data must take appropriate techni- cal and
p.000036: organizational steps to protect data
p.000036: against accidental or unauthorized access, destruction, loss, use or disclosure, whether the data are
p.000036: collected and stored in paper or electronic (digital) format. All personnel with access to public
p.000036: health surveillance data should be trained annually in data security pro- cedures and made aware of their
p.000036: professional ethical responsibility to protect the data and the public. The level of security must be appro-
p.000036: priate to the risks and the nature of the data to be protected, taking into account the state of the art and
p.000036: the cost. In particular, sensitive information, which raises the risks of individu- als and communities for
p.000036: stigmatization or dis- crimination, should be subject to speciﬁc and especially rigorous security safeguards.
p.000036:
p.000036: The imperative to secure data should not be considered a license to refuse to use or share surveillance
p.000036: information effectively for legiti- mate public health purposes. (See guidelines 14–17 on sharing and the
p.000036: discussion in Guide- line 2 on meaningful ethics training.)
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036:
p.000036: Staff at the Medical Records Ofﬁce sort through patient ﬁles at Karapitayam Hospital, Galle.
p.000036: Source: WHO / SEARO /Gary Hampton
p.000036:
p.000036:
p.000036: Guidelines
p.000037: 37
p.000037:
p.000037:
p.000037: Guideline 11. Under certain circumstances, the collection of names or identiﬁable data is justiﬁed.
p.000037:
p.000037: In some instances, the collection of names or identiﬁable data is both technically and ethically
p.000037: imperative. Effective surveillance may require the de-duplication of records (that is, avoidance of
p.000037: double-counting, which can lead to overestimates of incidence or prevalence).
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037:
p.000037: Names and addresses of people with dread diseases were regularly reported in newspapers until the 1960s.
p.000037: Source: New York Times, July 22, 1916. Public Domain.
p.000037:
...

p.000040: dissemination, the social value of the work cannot be realized. In the absence of appropriate
p.000040: dissemination, those who collect data, including surveillance data, might rightly be accused of exploiting the
p.000040: individuals and groups whose health data they collect and analyse in the name of the common good. The
p.000040: Nufﬁeld Council on Bio- ethics argued that, for dissemination to be considered appropriate, those from
p.000040: whom data are collected should understand the implications of the results for both health care and prevention
p.000040: (35).
p.000040:
p.000040: Surveillance ﬁndings should be communicated concisely in a way that is understandable to a lay audience and
p.000040: sensitive to community concerns (see Guideline 7). Communica- tion should not seed panic but alert
p.000040: people to relevant risks in a sensible manner. Mass mailings, toll-free information hotlines, social media,
p.000040: newspapers, seminars, and public meetings are all possible means for conveying
p.000040: surveillance information to the communities from which data were collected and analysed and to the public.
p.000040: In resource-limited set- tings, street theatre, and folk art and other community-based methods can be
p.000040: adopted for the same purpose. Communication should also provide meaningful information for phy- sicians, hospital
p.000040: managers and other relevant target audiences.
p.000040:
p.000040: The communication of knowledge is a double- edged sword: on the one hand, knowledge may clearly empower; on
p.000040: the other, it may lead to injury, stigmatization or discrimination. A decision not to broadly publish data
p.000040: might be justiﬁed in exceptional circumstances, when doing so might cause signiﬁcant harm. Likewise,
p.000040: if the affected population is so small (for example, cases of very rare cancers) that identiﬁcation of
p.000040: individuals, however inadver- tent, might be inevitable, communication can be limited to preserve privacy (79).
p.000040:
p.000040: Decision-makers must also weigh the harm that could result if affected communities are not informed and
p.000040: thus deprived of knowl- edge and the ability to take action to reduce the risks and the capacity to
p.000040: engage in advo- cacy (see Guideline 13). Those responsible for public health have an afﬁrmative duty to miti- gate
p.000040: the burdens that communication might impose on individuals or groups that are more susceptible to harm or
p.000040: injustice.
p.000040:
p.000040: There is continuing debate about when, if ever, those responsible for the design and conduct of
p.000040: surveillance are ethically obliged to inform the subjects of surveillance about individual results or
p.000040: diagnosis and then refer them to the appropriate service (80). For example, in the early days of the
p.000040: HIV epidemic, when treatment was not avail- able, blinded seroprevalence studies were considered
...

Searching for indicator stigmatized:

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p.000025: moving from collecting and analysing data to action (see Guideline 6).
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: Interior view: a nurse is examining two young children in the dining area of the home; the mother is standing to the
p.000025: left; further to the left is a large stove situated next to a ﬁreplace.
p.000025: Source: The National Library of Medicine
p.000025:
p.000025:
p.000025:
p.000026: 26
p.000026: Guidelines
p.000026:
p.000026:
p.000026:
p.000026: Guideline 2. Countries have an obligation to develop appropriate, effective mechanisms to ensure ethical surveillance.
p.000026:
p.000026: Public health surveillance has inherent beneﬁts for the functioning of the public health sys- tem, as well as
p.000026: risks. Countries should have an appropriate, effective mechanism for ensur- ing adherence to ethical standards
p.000026: in both emergency and non-emergency situations. Decisions about changing an established sur- veillance
p.000026: system can pose important ethical challenges. Examples of changes that may require ethical scrutiny
p.000026: include: collecting data elements that reveal stigmatized behaviour; adding new elements of data collection, such
p.000026: as measurements of CD4 counts as part of routine HIV/AIDS surveillance; adopting new uses for existing
p.000026: surveillance data, such as for case management or contact tracing; or using public health surveillance data for
p.000026: commercial or security purposes.
p.000026:
p.000026: In the case of research, review committees monitor adherence to ethics standards. Such an independent,
p.000026: impartial oversight mecha- nism allows for close scrutiny and can ensure that relevant protection is
p.000026: in place. These guidelines do not recommend mechanisms that mirror those that have emerged in the
p.000026: context of research ethics. However, public health surveillance is currently not subject to routine
p.000026: oversight. It is the obligation of coun- tries to decide the most appropriate processes for identifying and
p.000026: addressing the ethical issues that arise in public health surveillance.
p.000026:
p.000026: Box 1 provides some examples of existing mechanisms. Any mechanism or process should ensure
p.000026: ethical implementation of sur- veillance without itself becoming an obstacle to achieving the larger public
p.000026: health goal. (We address the nexus of surveillance and research in Guideline 16.)
p.000026: Such mechanisms of ethical oversight should effectively identify the risks and ben- eﬁts of
p.000026: surveillance and suggest measures to enhance the beneﬁts, minimize the risks and ensure appropriate
...

Searching for indicator violence:

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p.000033: of surveil- lance are other possibilities. The possibility of compensation should not, however, pose a
p.000033: barrier to surveillance (69).
p.000033:
p.000033: There are many different types of harm: eco- nomic, legal, psychological, social (and reputa- tional) and
p.000033: physical. All should be considered in relation to surveillance (70-72). For example, a migrant or a person in another
p.000033: disadvantaged group may be identiﬁed as being at higher risk for an infectious disease through surveillance, and this
p.000033: could lead to stigmatization of the group. Relevant information must be handled very carefully: reputations can
p.000033: quickly be dam- aged, with devastating results across a spec- trum that may include not-yet-documented
p.000033: types of harm (73). Various moral values and ethical principles should be weighed and bal- anced against
p.000033: each other and a judgement made about fair distribution of burdens and beneﬁts in different surveillance
p.000033: initiatives or systems in a transparent way (see discussions of equity and good governance in section III).
p.000033:
p.000033: When, despite all efforts to mitigate harm, surveillance entails a predictable risk for harm (stigmatization,
p.000033: discrimination, expulsion or violence), additional precautions should be
p.000033:
p.000033: Table 2. Types of harm potentially related to disclosure of public health surveillance data
p.000033: Type of harm Result
p.000033: Physical Public attacks, spouse/partner abuse, domestic violence, delayed or
p.000033: inadequate treatment
p.000033: Legal Arrest, prosecution, death penalty, expulsion
p.000033: Social Discrimination, community discrimination, isolation, inability to access
p.000033: care or exclusion from care, rejection from the community
p.000033: Economic Loss of employment or revenue, loss of health care services, loss of insurance,
p.000033: increased insurance premiums, increased health care costs, limited career options, loss of life resources, forced
p.000033: relocation
p.000033: Psychological/emotional Distress, trauma, stigma
p.000033:
p.000034: 34
p.000034: Guidelines
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034: Health brigades in Chiapas, Mexico, during the epidemic of H1N1 inﬂuenza, 2009.
p.000034: Source: WHO /Harold Ruiz
p.000034:
p.000034:
p.000034: taken to protect the individuals or commu- nities at risk. The risk for serious harm may, in rare
p.000034: circumstances, be so great that sur- veillance might be difﬁcult to justify morally. In most cases,
...

Searching for indicator trauma:

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p.000033:
p.000033: When, despite all efforts to mitigate harm, surveillance entails a predictable risk for harm (stigmatization,
p.000033: discrimination, expulsion or violence), additional precautions should be
p.000033:
p.000033: Table 2. Types of harm potentially related to disclosure of public health surveillance data
p.000033: Type of harm Result
p.000033: Physical Public attacks, spouse/partner abuse, domestic violence, delayed or
p.000033: inadequate treatment
p.000033: Legal Arrest, prosecution, death penalty, expulsion
p.000033: Social Discrimination, community discrimination, isolation, inability to access
p.000033: care or exclusion from care, rejection from the community
p.000033: Economic Loss of employment or revenue, loss of health care services, loss of insurance,
p.000033: increased insurance premiums, increased health care costs, limited career options, loss of life resources, forced
p.000033: relocation
p.000033: Psychological/emotional Distress, trauma, stigma
p.000033:
p.000034: 34
p.000034: Guidelines
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034: Health brigades in Chiapas, Mexico, during the epidemic of H1N1 inﬂuenza, 2009.
p.000034: Source: WHO /Harold Ruiz
p.000034:
p.000034:
p.000034: taken to protect the individuals or commu- nities at risk. The risk for serious harm may, in rare
p.000034: circumstances, be so great that sur- veillance might be difﬁcult to justify morally. In most cases,
p.000034: however, mitigation strategies can ensure that risks for harm are dealt with adequately. Once harm or
p.000034: potential harm is identiﬁed, action must be taken to reduce the risk, or a plan must be in place for
p.000034: reducing, removing or compensating for any harm.
p.000034:
p.000034: As not all harm can be eliminated, the ben- eﬁts of surveillance should be proportional to the risk for harm.
p.000034: Protective measures should include the way in which health authori- ties present information or
p.000034: action to the
...

Searching for indicator abuse:

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p.000033: disadvantaged group may be identiﬁed as being at higher risk for an infectious disease through surveillance, and this
p.000033: could lead to stigmatization of the group. Relevant information must be handled very carefully: reputations can
p.000033: quickly be dam- aged, with devastating results across a spec- trum that may include not-yet-documented
p.000033: types of harm (73). Various moral values and ethical principles should be weighed and bal- anced against
p.000033: each other and a judgement made about fair distribution of burdens and beneﬁts in different surveillance
p.000033: initiatives or systems in a transparent way (see discussions of equity and good governance in section III).
p.000033:
p.000033: When, despite all efforts to mitigate harm, surveillance entails a predictable risk for harm (stigmatization,
p.000033: discrimination, expulsion or violence), additional precautions should be
p.000033:
p.000033: Table 2. Types of harm potentially related to disclosure of public health surveillance data
p.000033: Type of harm Result
p.000033: Physical Public attacks, spouse/partner abuse, domestic violence, delayed or
p.000033: inadequate treatment
p.000033: Legal Arrest, prosecution, death penalty, expulsion
p.000033: Social Discrimination, community discrimination, isolation, inability to access
p.000033: care or exclusion from care, rejection from the community
p.000033: Economic Loss of employment or revenue, loss of health care services, loss of insurance,
p.000033: increased insurance premiums, increased health care costs, limited career options, loss of life resources, forced
p.000033: relocation
p.000033: Psychological/emotional Distress, trauma, stigma
p.000033:
p.000034: 34
p.000034: Guidelines
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034: Health brigades in Chiapas, Mexico, during the epidemic of H1N1 inﬂuenza, 2009.
p.000034: Source: WHO /Harold Ruiz
p.000034:
p.000034:
p.000034: taken to protect the individuals or commu- nities at risk. The risk for serious harm may, in rare
p.000034: circumstances, be so great that sur- veillance might be difﬁcult to justify morally. In most cases,
...

Searching for indicator educational:

(return to top)
p.000034: the common good, they must be free to report without fear of reprisal. As surveillance ofﬁcials have a
p.000034: responsibility to speak up, they should have protection. This idea is established in the IHR, which
p.000034: protects the conﬁdentiality of those who report a veri- ﬁable outbreak or a public health event out- side
p.000034: ofﬁcial channels.
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034: Guidelines
p.000035: 35
p.000035:
p.000035:
p.000035: Guideline 9. Surveillance of individuals or groups who are particularly susceptible to disease, harm or injustice is
p.000035: critical and demands careful scrutiny to avoid the imposition of unnecessary additional burdens.
p.000035:
p.000035: Individuals or groups in situations of height- ened vulnerability bear an undue proportion of health
p.000035: problems. Responsible authorities should make special efforts to ensure that these populations are
p.000035: included in surveillance in ways that will empower them. How exactly situations of vulnerability should be
p.000035: deﬁned is a subject of dispute in the literature (74). Vulnerability may be diffuse, affecting large
p.000035: communities with limited economic develop- ment, limited access to health care facilities, educational
p.000035: deprivation, occupational risks or wider disadvantages in society. Public health surveillance and health
p.000035: information systems can provide valuable information to aid the development of health programmes and ser-
p.000035: vices to address their health problems and the underlying determinants of health, such as clean water, food
p.000035: security, or gender equality. To promote equity, surveillance should focus on the speciﬁc problems of these
p.000035: vulnerable communities.
p.000035:
p.000035: People with particular susceptibility to disease, harm or injustice are also at increased risk for further
p.000035: burdens, such as discrimination and stigma, attributable to surveillance activities or ﬁndings. For
p.000035: example, refugee groups and undocumented migrants with a higher disease burden may be seen, wrongly, as the cause of
p.000035: disease outbreaks. Similarly, workers with an occupational disease, such as silicosis, who lack access
p.000035: to adequate legal support may
p.000035:
p.000035: be dismissed from work rather than receiving treatment or compensation. Wherever pos- sible, susceptible
p.000035: groups should be identiﬁed before surveillance activities begin in order to minimize the risk for harm. In
...

Searching for indicator gender:

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p.000034: ofﬁcial channels.
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034:
p.000034: Guidelines
p.000035: 35
p.000035:
p.000035:
p.000035: Guideline 9. Surveillance of individuals or groups who are particularly susceptible to disease, harm or injustice is
p.000035: critical and demands careful scrutiny to avoid the imposition of unnecessary additional burdens.
p.000035:
p.000035: Individuals or groups in situations of height- ened vulnerability bear an undue proportion of health
p.000035: problems. Responsible authorities should make special efforts to ensure that these populations are
p.000035: included in surveillance in ways that will empower them. How exactly situations of vulnerability should be
p.000035: deﬁned is a subject of dispute in the literature (74). Vulnerability may be diffuse, affecting large
p.000035: communities with limited economic develop- ment, limited access to health care facilities, educational
p.000035: deprivation, occupational risks or wider disadvantages in society. Public health surveillance and health
p.000035: information systems can provide valuable information to aid the development of health programmes and ser-
p.000035: vices to address their health problems and the underlying determinants of health, such as clean water, food
p.000035: security, or gender equality. To promote equity, surveillance should focus on the speciﬁc problems of these
p.000035: vulnerable communities.
p.000035:
p.000035: People with particular susceptibility to disease, harm or injustice are also at increased risk for further
p.000035: burdens, such as discrimination and stigma, attributable to surveillance activities or ﬁndings. For
p.000035: example, refugee groups and undocumented migrants with a higher disease burden may be seen, wrongly, as the cause of
p.000035: disease outbreaks. Similarly, workers with an occupational disease, such as silicosis, who lack access
p.000035: to adequate legal support may
p.000035:
p.000035: be dismissed from work rather than receiving treatment or compensation. Wherever pos- sible, susceptible
p.000035: groups should be identiﬁed before surveillance activities begin in order to minimize the risk for harm. In
p.000035: surveillance pro- grammes, there should be constant monitor- ing for (further) harm to those in conditions of
p.000035: particular vulnerability. When harm does occur, a mitigation strategy should be put in place (see Guideline 8).
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
...

Searching for indicator parent:

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p.000031: capacity for surveillance should regularly update technical guidelines for best practices. The international
p.000031: community should help to ensure that both technical and ethical training is widely available.
p.000031:
p.000031: Surveillance may require support not only for technical capacity, however, but also for systematic,
p.000031: formal ethical evaluation and improvement, as demonstrated by global support for training in
p.000031: research ethics. Thus, international organizations also have an
p.000031:
p.000031: obligation to facilitate and encourage coun- tries to practise good governance by meeting their ethical and
p.000031: legal responsibilities. When countries fail to protect the fundamental rights or interests of individuals
p.000031: or populations in public health surveillance, international sup- port should be contingent on their rectifying
p.000031: such violations and wrongdoings.
p.000031:
p.000031: An obligation to support does not give the global community license to ignore the pri- orities of
p.000031: countries that require support or resources. International humanitarian orga- nizations have expressed
p.000031: deep concern that surveillance is too often driven by the secu- rity needs of high-income countries,
p.000031: creating ambiguities about who the chief beneﬁciaries of surveillance are (3). When a country’s deci- sions have been
p.000031: made in a participatory, trans- parent manner, the global community has an obligation to meet local surveillance
p.000031: aspirations that exceed or even conﬂict with the priorities set by international donors (62). For example, malnutrition
p.000031: may be a priority for surveillance in a country with limited resources, whereas international donors may view
p.000031: that concern as of lower priority than an infectious disease outbreak. Genuine partnerships may require reform of
p.000031: global health governance, shifting the priority from securitization, politics, and trade to “universal health
p.000031: values” (63).
p.000031:
p.000031: Too often, data are collected locally but ana- lysed at State or country level, with minimal feedback.
p.000031: Both the international community and country ofﬁcials should encourage the analysis and use of
p.000031: surveillance data collected at the local level by the local level. Local analy- sis and use can enhance
p.000031: accountability and the capacity to improve population health. When local analysis is not possible,
p.000031: analyses performed at central or national level should be shared with the local level.
p.000031:
p.000032: 32
p.000032: Guidelines
p.000032:
p.000032:
p.000032:
p.000032: Guideline 7. The values and concerns of communities should be taken into account in planning, implementing and using
p.000032: data from surveillance.
p.000032:
p.000032: Ofﬁcials, agencies, and organizations respon- sible for surveillance should try to engage the population
p.000032: beforehand about the goals, pro- cesses, and potential impacts (both positive and negative) of surveillance
p.000032: activities as a means of demonstrating respect for persons. When this is not possible or is not done, those
...

Searching for indicator opinion:

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p.000005: of this translation. The original English edition shall be the binding and authentic edition”.
p.000005:
p.000005: Any mediation relating to disputes arising under the licence shall be conducted in accordance with the media- tion
p.000005: rules of the World Intellectual Property Organization.
p.000005:
p.000005: Suggested citation. WHO guidelines on ethical issues in public health surveillance. Geneva: World Health
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p.000005:
p.000005: General disclaimers. The designations employed and the presentation of the material in this publication do not imply
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p.000005:
p.000005: Table of Contents
p.000005:
p.000005:
p.000005: Foreword
p.000005: 5
p.000005: Acknowledgements
p.000007: 7
p.000007: I. Introduction
p.000010: 10
p.000010: II. Background
p.000014: 14
p.000014: Deﬁning public health surveillance
p.000014: 14
p.000014: Surveillance: ethics, law and history
p.000016: 16
p.000016: III. Framing the ethics of surveillance
p.000019: 19
p.000019: Existing guidelines
p.000019: 19
p.000019: Public health ethics
p.000020: 20
p.000020: IV. Guidelines
p.000024: 24
p.000024: Guideline 1. Countries have an obligation to develop appropriate, feasible, sustainable public health surveillance
...

p.000039: voluntary.
p.000039:
p.000039: Whether or not consent is sought, informa- tion about the nature and purpose of surveil- lance and about any risk
p.000039: for harm should be publicly accessible (see Guideline 13). Rel- evant protection and adequate governance
p.000039: mechanisms (Guideline 2 and the discussion on good governance in section III), appropri- ate ethics training
p.000039: (guidelines 2 and 6) and data security (Guideline 10) will enhance trust in surveillance systems
p.000039: and ensure protection.
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000040: 40
p.000040: Guidelines
p.000040:
p.000040:
p.000040:
p.000040: Guideline 13. Results of surveillance must be effectively communicated to relevant target audiences.
p.000040:
p.000040: There is compelling, widely accepted moral justiﬁcation for dissemination of the results of surveillance to
p.000040: relevant target audiences, although it is not a substitute for ameliora- tive action on the part of those
p.000040: responsible for surveillance. At the local level, relevant target audiences include the community, community ofﬁcials
p.000040: and opinion leaders, health care pro- viders (doctors, nurses, health care workers), policy-makers, health
p.000040: advocates and health volunteers. The relevant target audiences may also include Member States, national
p.000040: and international agencies, and NGOs.
p.000040:
p.000040: Although CIOMS guidelines are focused on research, they stress the importance of communicating
p.000040: results, both positive and negative, to “promote and enhance pub- lic discussion”. Without
p.000040: dissemination, the social value of the work cannot be realized. In the absence of appropriate
p.000040: dissemination, those who collect data, including surveillance data, might rightly be accused of exploiting the
p.000040: individuals and groups whose health data they collect and analyse in the name of the common good. The
p.000040: Nufﬁeld Council on Bio- ethics argued that, for dissemination to be considered appropriate, those from
p.000040: whom data are collected should understand the implications of the results for both health care and prevention
p.000040: (35).
p.000040:
p.000040: Surveillance ﬁndings should be communicated concisely in a way that is understandable to a lay audience and
p.000040: sensitive to community concerns (see Guideline 7). Communica- tion should not seed panic but alert
p.000040: people to relevant risks in a sensible manner. Mass mailings, toll-free information hotlines, social media,
p.000040: newspapers, seminars, and public meetings are all possible means for conveying
...

Searching for indicator philosophy:

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p.000019:
p.000020: 20
p.000020: Framing the ethics of surveillance
p.000020:
p.000020:
p.000020:
p.000020: and liberties are not also important ethical considerations; however, these more “social” or “public” values are
p.000020: reﬂected in related yet not wholly overlapping concepts that capture the broad importance of community and the
p.000020: afﬁrmative duty to act. Some in the ﬁeld use the language of solidarity (40), drawing on the communitarian
p.000020: tradition in public health (41); others describe the mutual obligations of reciprocity (42). The Nufﬁeld
p.000020: Council on Bioethics sought to capture the duties and responsibilities of government in relation to public
p.000020: health by the concept of “steward- ship” (36).
p.000020:
p.000020: After a careful review, reﬂection and delibera- tion, the WHO Guidelines Development Group determined that the
p.000020: following ethical consid- erations are of particular importance for public health surveillance. They represent
p.000020: the back- bone of the guidelines:
p.000020:
p.000020: Common good: Surveillance is widely acknowledged to be a public good (43), and some of the beneﬁts
p.000020: it pro- vides cannot be subdivided into indi- vidual private beneﬁts because they are fundamentally shared (41,
p.000020: 44). Surveil- lance is justiﬁed, fundamentally, as a requirement for the good of all. With- out adequate
p.000020: oversight by public health bodies and the participation of individ- uals and communities, the shared ben- eﬁts of
p.000020: surveillance are at risk. There is a complex literature on economics and moral philosophy that seeks to deﬁne and
p.000020: distinguish the terms “public good”, “public goods,” and “the com- mon good” (45). After careful delibera-
p.000020: tion, the committee adopted the term “the common good” to capture the notion of public goods more
p.000020: broadly conceived than in the narrow economic sense.
p.000020: Equity: Public health ethics is centrally concerned with the idea of equity. It is well established that
p.000020: social inequality has adverse effects on health (46). Not all inequality is within human control or is
p.000020: morally relevant. Morally prob- lematic inequality is commonly referred to as inequity. A just or fair society
p.000020: will attempt to provide equitable conditions for humans to ﬂourish, with health as a central component.
p.000020: Equity some- times requires that the most vulnerable people receive what may appear to be disproportionate
p.000020: resources: that is, the unfair distribution of risks requires addi- tional resources to balance the scales.
p.000020: Public health surveillance can further the pursuit of equity by identifying the particular problems
p.000020: of disadvantaged populations, including global communi- ties, providing the evidence for focused health campaigns
p.000020: and identifying the basis of unfair differences in health.
p.000020:
p.000020: Respect for persons: Public health eth- ics is concerned with the rights, liberty, and other interests of individuals
p.000020: as well as overall population well-being. When- ever possible, individuals should be involved in decisions
...

Searching for indicator sex workers:

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p.000010:
p.000010:
p.000010: shared with populations and policy-makers in a timely, appropriate manner.
p.000010:
p.000010: Yet surveillance has been the subject of some- times bitter controversy. Public health sur- veillance may
p.000010: limit not only privacy but also other civil liberties. For example, surveillance may trigger mandatory
p.000010: quarantine, isolation, or seizure of property during an epidemic (2). When surveillance involves
p.000010: name-based reporting (that is, reporting by name), it can, to the extent that populations are made aware, trigger
p.000010: profound concern about intrusions on privacy, discrimination, and stigmatization. Name-based reporting can also
p.000010: seriously harm people and property, as is seen when mob reactions supersede care, compassion and the effective
p.000010: rule of law. Concern is compounded in the absence of trust that the public health system will keep names
p.000010: secure or will release aggregated data and related information (referred to simply as “data” from
p.000010: this point forward, as records contain information that varies in type and scope) in a sensitive manner (2). In
p.000010: some countries, the HIV/AIDS pandemic sparked controversy about tracking by name those carrying the virus, but,
p.000010: even when con- ﬁdentiality was assured, when details of risky behaviour and affected populations became
p.000010: public, groups like gay sex workers and inject- ing drug users experienced social harm such as discrimination
p.000010: and stigmatization. Because of these concerns, the HIV/AIDS epidemic spurred ethical and regulatory
p.000010: guidelines at both national and international levels that could be used in planning, collecting and then
p.000010: using personal and aggregated data.
p.000010:
p.000010: Just as often, however, failure to conduct public health surveillance has generated political and ethical controversy
p.000010: because of concern that “what doesn’t get counted doesn’t count”. Environmental and occupational
p.000010: health advocates, for example, have long made this argument. Even for events deemed critically
p.000010: important, yawning gaps in surveillance remain. The 2014–2016 Ebola virus disease crisis dramatically
p.000010: underscored the potentially devastating consequences of a lack of capacity to monitor the incidence and spread of
p.000010: disease. An effective public health or clinical response can be seriously hampered by the absence of such
p.000010: data. But if Ebola virus disease is a high- proﬁle example of the costs of inadequate systems and the
p.000010: importance of support from the global community for vital surveillance, many other occupational and
p.000010: environmental exposures – like asthma, silicosis and condi- tions related to exposure to arsenic or lead
...

Economic / Economic/Poverty

Searching for indicator poor:

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p.000041: Source: WHO / TDR /Simon Lim
p.000041:
p.000041:
p.000041:
p.000041:
p.000042: 42
p.000042: Guidelines
p.000042:
p.000042:
p.000042:
p.000042: Guideline 14. With appropriate safeguards and justiﬁcation, those responsible
p.000042: for public health surveillance have an obligation to share data with other national and international public health
p.000042: agencies.
p.000042:
p.000042: For a public health surveillance system to be effective, equitable, and promote the com- mon good, it must
p.000042: be capable of receiving and linking data from public agencies responsible for public health. For example, because
p.000042: of the stringent data security that has surrounded HIV surveillance, there have been situations in which data on
p.000042: HIV status have not been shared with those responsible for tuberculosis surveil- lance, obviating systematic
p.000042: identiﬁcation of cases with co-infection. Public health work- ers cannot respond appropriately to swiftly
p.000042: changing infectious diseases in real time or take appropriate action in the case of chronic conditions without
p.000042: access to appropriate data. The same is true of occupational exposures. There have been examples in which
p.000042: agencies responsible for tracking occupational diseases have not shared data (despite the absence of a
p.000042: prohibition) with agencies responsible for
p.000042: worker protection and workplace regulation (23). A review of the literature indicated that much of the
p.000042: failure to share information is due to poor planning rather than safety concerns. Programmes have experienced
p.000042: technical dif- ﬁculties in sharing data, some data requiring conversion (e.g. birth year to age) in order
p.000042: to link databases (84, 85).
p.000042:
p.000042: Public health systems should establish frame- works to enable secure sharing of data (see Guideline 10)
p.000042: with other national and inter- national agencies. Early collaboration to align processes in order to avoid
p.000042: foregoing beneﬁts or wasting resources is ethically warranted. Ethical frameworks for sharing should respect
p.000042: persons by ensuring that only the data required to fulﬁl a sufﬁciently important, legitimate public health
p.000042: purpose are shared, that data are not shared more broadly than necessary, and that data are not subsequently
p.000042: re-shared by other agencies, except under the conditions speciﬁed elsewhere in this document, e.g. in
p.000042: guidelines 16–17. When the protection of different datasets is not equivalent, the more stringent
p.000042: privacy standard should be applied.
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042: Guidelines
p.000043: 43
p.000043:
p.000043: Guideline 15. During a public health emergency, it is imperative that all parties involved in surveillance share data
p.000043: in a timely fashion.
p.000043: The collection and sharing of data are essen- tial activities in ordinary public health practice. During
...

Searching for indicator poverty:

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p.002008: 48. Ethics guidance for the implementation of the End TB strategy. Geneva: World Health Organiza- tion; 2017.
p.002008: 49. Guidance for managing ethical issues in infectious disease outbreaks. Geneva: World Health Orga- nization; 2016.
p.002008: 50. Scott JC. Seeing like a state: how certain schemes to improve the human condition have failed. New Haven, CT:
p.002008: Yale University Press; 1998.
p.002008: 51. Promoting the health of refugees and migrants. Executive Board resolution 140/24. Geneva: World
p.002008: Health Organization; 2017.
p.002008: 52. Willison DJ, Ondrusek N, Dawson A, Emerson C, Ferris LE, Saginur R, et al. What makes public
p.002008: health studies ethical? Dissolving the boundary between research and practice. BMC Med Ethics 2014;15:61.
p.002008: 53. Graham J, Amos B, Plumptre T. Principles for Good Governance in the 21st Century: Policy Brief
p.002008: No. 15. Ottawa: Institute on Governance, 1993. Available at: http://iog.ca/wp-content/
p.002008: uploads/2012/12/2003_August_policybrief151.pdf
p.002008: 54. United Nations Development Programme. Chapter 8: Governance Principles, Institutional Capac- ity, and Quality.
p.002008: In Towards human resilience: sustaining MDG progress in an age of economic uncertainty. New York: United
p.002008: Nations Development Programme, 2011. Available at: http://www.
p.002008: undp.org/content/undp/en/home/librarypage/poverty-reduction/inclusive_development/towards_
p.002008: human_resiliencesustainingmdgprogressinanageofeconomicun.html54.
p.002008: 55. Expert information. Tokyo: Japan Ministry of Health, Labour and Welfare (http://www.mhlw.go.jp/
p.002008: bunya/kenkou/kekkaku-kansenshou11/dl/01_kansensho.pdf).
p.002008:
p.002008:
p.000052: 52
p.000052: References
p.000052:
p.000052: 56. German RR, Lee LM, Horan JM, Milstein RL, Pertowski CA, Waller MN, et al. Updated guidelines for evaluating
p.000052: public health surveillance systems: recommendations from the Guidelines Working Group. MMWR Recomm Rep 2001;50:1-35;
p.000052: quiz CE1-7.
p.000052: 57. Brock DW, Wikler D. Ethical challenges in long-term funding for HIV/AIDS. Health Aff (Millwood)
p.000052: 2009;28:1666–1676.
p.000052: 58. Daniels N. Accountability for reasonableness: establishing a fair process for priority setting is easier than
p.000052: agreeing on principles. BMJ 2000;321:1300–1301.
p.000052: 59. O’Neill O. Trust, trustworthiness and transparency. Brussels: European Foundation Centre; 2015.
p.000052: 60. WHO framework convention on tobacco control. Geneva: World Health Organization; 2003.
p.000052: 61. United Nations framework convention on climate change. New York, NY: United Nations; 2015.
p.000052: 62. Calain P. From the ﬁeld side of the binoculars: a different view on global public health surveillance. Health
p.000052: Policy Plan 2007;22:13–20.
p.000052: 63. Gostin L, Friedman EA. Ebola: a crisis in global health leadership. Lancet 2014;384:1323–1325.
p.000052: 64. Bioethics for Every Generation: The Presidential Commission for the Study of Bioethical Issues
p.000052: [Available from: https://bioethicsarchive.georgetown.edu/pcsbi/node/5678.html]
...

Searching for indicator low-income:

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p.000010: and stigmatization. Because of these concerns, the HIV/AIDS epidemic spurred ethical and regulatory
p.000010: guidelines at both national and international levels that could be used in planning, collecting and then
p.000010: using personal and aggregated data.
p.000010:
p.000010: Just as often, however, failure to conduct public health surveillance has generated political and ethical controversy
p.000010: because of concern that “what doesn’t get counted doesn’t count”. Environmental and occupational
p.000010: health advocates, for example, have long made this argument. Even for events deemed critically
p.000010: important, yawning gaps in surveillance remain. The 2014–2016 Ebola virus disease crisis dramatically
p.000010: underscored the potentially devastating consequences of a lack of capacity to monitor the incidence and spread of
p.000010: disease. An effective public health or clinical response can be seriously hampered by the absence of such
p.000010: data. But if Ebola virus disease is a high- proﬁle example of the costs of inadequate systems and the
p.000010: importance of support from the global community for vital surveillance, many other occupational and
p.000010: environmental exposures – like asthma, silicosis and condi- tions related to exposure to arsenic or lead
p.000010: – go uncounted in both high- and low-income countries. Some commentators have argued that, too often, only
p.000010: when a public health crisis becomes a “threat to international peace and security” does surveillance become a
p.000010: priority for wealthy countries (3). But even when sur- veillance is a priority, fragmented, unlinked or
p.000010: consolidated data sets remain a problem for their effective use for public health purposes.
p.000010:
p.000010: While surveillance is often conducted without public knowledge or concern when the risk for stigma,
p.000010: discrimination or perpetuation of inequity is high, surveillance inevitably involves conﬂicts of values and
p.000010: judgements about how to advance public health goals without harm- ing individuals or groups in society. Thus,
p.000010: the priorities and the distribution of resources for surveillance merit public debate, not only within
p.000010: societies but among global communi- ties. Despite landmark international guidelines on the ethics of research,
p.000010: including epidemio- logical studies, and speciﬁc ethical guidelines for surveillance of particular
p.000010: diseases and/ or in particular countries, there has been no international ethics framework to guide pub-
p.000010: lic health surveillance systems in general that spans infectious diseases, noncommunicable diseases (NCDs),
p.000010: disease outbreaks, environ- mental and occupational exposures, and even national borders. The Council for
p.000010: International
p.000010:
p.000010: Introduction
...

General/Other / Impaired Autonomy

Searching for indicator autonomy:

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p.000043: Guideline 17. Personally identiﬁable surveillance data should not be shared with agencies that are likely to use them
p.000043: to take action against individuals or for uses unrelated to public health.
p.000046: 46
p.000046: V. The shifting boundaries of surveillance
p.000048: 48
p.000048: References
p.000050: 50
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000004: 4
p.000004:
p.000004: Foreword
p.000004:
p.000004:
p.000004:
p.000004:
p.000004:
p.000004:
p.000004:
p.000004:
p.000004: Public health surveillance is the bedrock of outbreak and epidemic response, but it reaches
p.000004: far beyond infectious diseases. It is sometimes called the radar of public health: it allows health
p.000004: ofﬁcials to map disease, spot patterns, identify causes, and target interven- tions. Surveillance, for example,
p.000004: is central to understanding the increasing global burden of noncommunicable conditions. By helping to
p.000004: determine patterns and causes of morbidity and mortality, it can help guarantee access to safe food, clean water,
p.000004: pure air, and healthy environments.
p.000004:
p.000004: Surveillance, when conducted ethically, is the foundation for programs to promote human well-being at the
p.000004: population level. It can con- tribute to reducing inequalities: pockets of suf- fering that are unfair, unjust and
p.000004: preventable cannot be addressed if they are not ﬁrst made visible. But surveillance is not without risks for
p.000004: participants and sometimes poses ethical dilemmas. Issues about privacy, autonomy, equity, and the common
p.000004: good need to be con- sidered and balanced, and knowing how to do so can be challenging in practice.
p.000004:
p.000004: I am pleased to see WHO leading in this impor- tant area by placing ethics at the heart of pub- lic health
p.000004: surveillance. The WHO Guidelines on Ethical Issues in Public Health Surveillance is
p.000004: the ﬁrst international framework of its kind, it ﬁlls an important gap. The goal of the guide- line development project
p.000004: was to to help policy- makers and practitioners navigate the ethical issues presented by public health
p.000004: surveillance. This document outlines 17 ethical guidelines that can assist everyone involved in public
p.000004: health surveillance, including ofﬁcials in gov- ernment agencies, health workers, NGOs and the private sector.
p.000004: I gratefully acknowledge the many experts and WHO colleagues who have made important contributions to
p.000004: this publication.
p.000004:
p.000004: WHO has rightly asserted that public health surveillance, conducted in a manner that anticipates
p.000004: ethical challenges and proactively seeks to reduce unnecessary risks, provides the architecture for social
p.000004: well-being. It is now up to the global community and countries to take up this challenge and implement the guide-
p.000004: lines in their surveillance systems.
p.000004:
p.000004:
p.000004:
p.000004:
p.000004: Dr Marie-Paule Kieny Assistant Director-General Health Systems and
p.000004: Innovation
p.000004:
p.000004:
p.000004:
p.000004:
p.000004: Foreword
p.000005: 5
p.000005:
p.000005: Acknowledgements
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
...

p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000018: 18
p.000018: Background
p.000018:
p.000018: III. Framing the ethics of surveillance
p.000018:
p.000018: Existing guidelines
p.000018:
p.000018: Limited academic literature on the practice of public health surveillance addresses the major ethical questions that
p.000018: arise in data collection; when the data are actually stored, used and shared; and data dissemination. The
p.000018: academic literature is (28), however, no substitute for guidelines that go beyond current disease-
p.000018: speciﬁc, national recommendations (29).
p.000018:
p.000018: In the decades since the Second World War, both international and national bodies have proposed ethical
p.000018: principles, guidelines and laws to govern research with human sub- jects. In response to egregious
p.000018: harm inﬂicted on individuals coerced into clinical research, new codes of ethics uniformly prioritized indi-
p.000018: vidual self-determination and emphasized the importance of informed consent for research, while acknowledging that
p.000018: it would hardly be straightforward in complex situations to bal- ance the protection of human research
p.000018: sub- jects against the social beneﬁt of the research. In the practice of clinical ethics, autonomy assumed a
p.000018: place of singular importance, rep- resenting a fundamental change in a moral world view (30-33).
p.000018:
p.000018: In its “International guidelines for ethical review of epidemiological studies” in 1991, CIOMS acknowledged that
p.000018: existing guidance focused on “patients and individual subjects” was not sufﬁcient for studies involving
p.000018: “groups” of people. After considerable controversy, a con- sensus emerged: CIOMS stressed the impor- tance of
p.000018: the principles of research ethics ﬁrst set out in the Nuremberg Code but recognized that application in the
p.000018: epidemiological context would require ﬂexibility (34). The tradition that developed was one in
p.000018: which research
p.000018:
p.000018: ethics committees could waive a requirement for informed consent when the risk posed by epidemiological
p.000018: research was “no more than minimal” and obtaining consent would make the research “impracticable” (34).
p.000018:
p.000018: While public health surveillance may share methodological strategies with epidemiologi- cal research, it is
p.000018: not simply another form of research. In surveillance a community is the subject of concern. That surveillance
p.000018: is one of the responsibilities of public health was rec- ognized in 1991 by CIOMS, which described
...

p.000019: surveillance require any kind of formal guidelines or continuous over- sight? Drawing the line between research and
p.000019: surveillance – or between research and other forms of vital social inquiry such as quality improvement,
p.000019: implementation research, oral history or even journalism – has been chal- lenging, but deﬁnitional
p.000019: solutions have (to date) proved inadequate (38, 39). Accord- ingly, a leading group of surveillance
p.000019: experts underscored the need “to move past the formal demarcation between research and
p.000019:
p.000019: practice” (29). These guidelines seek to do so, not by laying out new deﬁnitions but by setting into
p.000019: bold relief both the centrality of public health surveillance to population well- being and the need for
p.000019: appropriate ethical guidance and review – that is, for a para- digm of accountability that responds to
p.000019: the demands of public health and that is distinct from the systems that have governed research for half a
p.000019: century.
p.000019:
p.000019: Public health ethics
p.000019:
p.000019: The discipline of public health ethics has developed rapidly during the past two decades.
p.000019: Its central focus has been on articu- lating and exploring the ethical issues that arise in the pursuit of
p.000019: population health. This has resulted in a focus on concepts such as the common good, equity,
p.000019: solidarity, reci- procity, and population well-being. This is not to say that more individual values
p.000019: such as autonomy, privacy, and individual rights
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019: A crowd at a community event to launch a vaccination campaign.
p.000019: Source: WHO /Garry Smyth
p.000019:
p.000020: 20
p.000020: Framing the ethics of surveillance
p.000020:
p.000020:
p.000020:
p.000020: and liberties are not also important ethical considerations; however, these more “social” or “public” values are
p.000020: reﬂected in related yet not wholly overlapping concepts that capture the broad importance of community and the
p.000020: afﬁrmative duty to act. Some in the ﬁeld use the language of solidarity (40), drawing on the communitarian
p.000020: tradition in public health (41); others describe the mutual obligations of reciprocity (42). The Nufﬁeld
p.000020: Council on Bioethics sought to capture the duties and responsibilities of government in relation to public
p.000020: health by the concept of “steward- ship” (36).
p.000020:
p.000020: After a careful review, reﬂection and delibera- tion, the WHO Guidelines Development Group determined that the
p.000020: following ethical consid- erations are of particular importance for public health surveillance. They represent
p.000020: the back- bone of the guidelines:
p.000020:
p.000020: Common good: Surveillance is widely acknowledged to be a public good (43), and some of the beneﬁts
p.000020: it pro- vides cannot be subdivided into indi- vidual private beneﬁts because they are fundamentally shared (41,
...

p.000021: even in documents explicitly grounded in public health ethics, differences in language and emphasis remain.
p.000021: This docu- ment is one of three recent WHO-sponsored initiatives to develop ethical frameworks for
p.000021: disease control. Building on the original “Guidance on ethics of tuberculosis preven- tion, care and
p.000021: control” in 2010 (47), the “Ethics guidance for the implementation of the End TB Strategy” (48) addresses
p.000021: the most critical challenges to reducing the number of deaths from tuberculosis by 95% by 2030
p.000021: and the number of new cases by 90% between 2015 and 2035. The “Guidance for managing ethical issues in
p.000021: infectious disease outbreaks” (49) in 2016, in response to the outbreak of Ebola virus disease in West Africa
p.000021: in 2014–2015, underscored the importance of providing ethics guidance beyond “a spe- ciﬁc pathogen in
p.000021: isolation” to “cross-cutting ethical issues that apply to infectious disease outbreaks generally”.
p.000021:
p.000021: The three projects obviously have important continuity. All, for example, emphasize equity, justice, and the
p.000021: common good (sometimes expressed as “stewardship” or “reciproc- ity”). All stress the importance
p.000021: of respecting the dignity of persons (sometimes emphasiz- ing autonomy or privacy). Accountability and the
p.000021: importance of good governance either explicitly or implicitly informs all three. They also have
p.000021: relevant differences that reﬂect the subject of each. The tuberculosis guidelines, for example, address the
p.000021: problem of drug- resistant disease and thus emphasize the harm principle. The guidelines on infectious disease
p.000021: outbreaks, framed as they were by concern for groups in conditions of tremendous vulner- ability and the ways
p.000021: in which outbreaks can become crises, further ampliﬁed by fear and distrust, places greater emphasis on
p.000021: human rights. Given the need to make decisions in
p.000021:
p.000022: 22
p.000022: Framing the ethics of surveillance
p.000022:
p.000022:
p.000022:
p.000022: the face of uncertainty, they also stress utility, proportionality and efﬁcacy.
p.000022:
p.000022: The ethical considerations outlined above and repeated and ampliﬁed in the guidelines that follow are, in the
p.000022: estimation of this commit- tee, central to justiﬁcation of surveillance as a core activity, beyond outbreaks
p.000022: or infectious disease situations. They must be applied in situations that may vary in fundamental ways. The
p.000022: guidelines recognize that trade-offs of values are sometimes inevitable. The local tra- ditions and
p.000022: priorities in countries may some- times result in a different balance between competing values and
p.000022: priorities. It is important to stress, however, that not all trade-offs are morally acceptable. Local, national,
...

General/Other / Public Emergency

Searching for indicator emergency:

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p.000003: Guideline 8. Those responsible for surveillance should identify, evaluate, minimize and disclose risks for harm before
p.000003: surveillance is conducted. Monitoring for harm should be continuous, and, when any is identiﬁed, appropriate action
p.000003: should be
p.000003: taken to mitigate it.
p.000034: 34
p.000034: Guideline 9. Surveillance of individuals or groups who are particularly susceptible to disease, harm or injustice is
p.000034: critical and demands careful scrutiny to avoid the
p.000034: imposition of unnecessary additional burdens.
p.000036: 36
p.000036: Guideline 10. Governments and others who hold surveillance data must ensure
p.000036: that identiﬁable data are appropriately secured.
p.000037: 37
p.000037: Guideline 11. Under certain circumstances, the collection of names or identiﬁable
p.000037: data is justiﬁed.
p.000038: 38
p.000038: Guideline 12. Individuals have an obligation to contribute to surveillance when reliable, valid, complete data sets are
p.000038: required and relevant protection is in place.
p.000038: Under these circumstances, informed consent is not ethically required. 40
p.000038: Guideline 13. Results of surveillance must be effectively communicated to
p.000038: relevant target audiences.
p.000041: 41
p.000041: Guideline 14. With appropriate safeguards and justiﬁcation, those responsible for public health surveillance have an
p.000041: obligation to share data with other national and
p.000041: international public health agencies.
p.000043: 43
p.000043: Guideline 15. During a public health emergency, it is imperative that all parties
p.000043: involved in surveillance share data in a timely fashion. 44
p.000043: Guideline 16. With appropriate justiﬁcation and safeguards, public health
p.000043: agencies may use or share surveillance data for research purposes. 45
p.000043: Guideline 17. Personally identiﬁable surveillance data should not be shared with agencies that are likely to use them
p.000043: to take action against individuals or for uses unrelated to public health.
p.000046: 46
p.000046: V. The shifting boundaries of surveillance
p.000048: 48
p.000048: References
p.000050: 50
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000004: 4
p.000004:
p.000004: Foreword
p.000004:
p.000004:
p.000004:
p.000004:
p.000004:
p.000004:
p.000004:
p.000004:
p.000004: Public health surveillance is the bedrock of outbreak and epidemic response, but it reaches
p.000004: far beyond infectious diseases. It is sometimes called the radar of public health: it allows health
p.000004: ofﬁcials to map disease, spot patterns, identify causes, and target interven- tions. Surveillance, for example,
p.000004: is central to understanding the increasing global burden of noncommunicable conditions. By helping to
p.000004: determine patterns and causes of morbidity and mortality, it can help guarantee access to safe food, clean water,
p.000004: pure air, and healthy environments.
p.000004:
p.000004: Surveillance, when conducted ethically, is the foundation for programs to promote human well-being at the
...

p.000007: Utrecht University Medical Centre, Netherlands.
p.000007:
p.000007: The support and contributions of two consul- tants is greatly appreciated: Carl H. Coleman, Seton Hall Law
p.000007: School, USA, and Michele Loi, Swiss Federal Institute of Technology, Switzerland.
p.000007:
p.000007: This guidance document beneﬁted from the work of a literature review group, comprising: Corinna Klingler,
p.000007: Ludwig Maximilian University Munich, Germany (lead); Diego S. Silva, Simon Fraser University, Canada; Daniel
p.000007: Strech and Christopher Schürmann, Hannover Medical School, Germany; and Michael Vaughn, Colum- bia University
p.000007: School of Public Health, USA.
p.000007:
p.000007: WHO’s Global Health Ethics team extends thanks to the WHO internal steering group for its invaluable
p.000007: advice on development of the guidelines: Isabel Bergeri, Marie-Charlotte Bouesseau, Somnath Chatterji, Joan
p.000007: Helen Dzenowagis, Sergey Romualdovich Eremin, Jesus Maria Garcia Calleja, Margaret Orunya Lamunu, Anais
p.000007: Legand, Ahmed Mandil, Tim Nguyen, Bruce Jay Plotkin, Manju Rani, Leanne Margaret Riley, Pascal Ringwald, Carla
p.000007: Saenz Bresciani, Nahoko Shindo, and Matteo Zignol,
p.000007:
p.000007: as well as WHO colleagues Ronald Johnson, Vasee Moorthy, Mahnaz Vahedi, Amin Vakili, and Jihane Tawilah.
p.000007:
p.000007: The document also beneﬁted from the work of an external review group, comprising: Larry Gostin, Georgetown Law
p.000007: Center, USA; Philip Zucs, Gaetan Guyodo, Marieke van der Werf, European Centre for Disease Prevention and
p.000007: Control, Sweden; Nijuan Xiang, Public Health Emergency Centre, Centers for Disease Control, China; Martyn Kirk,
p.000007: College of Medicine, Biol- ogy and Environment, Australian National Uni- versity, Australia; Thilaka Chinnaya, Ministry
p.000007: of Health, Malaysia; Mohammed Ben Ammar, for- merly at the Ministry of Health, Tunisia; Lorna Luco,
p.000007: Universidad del Desarollo, Institute of Bioethics, Chile; and Preet Dhillon and Shifalika Goenka, Public Health
p.000007: Foundation, India.
p.000007:
p.000007: Special thanks are extended to former interns of the Global Health Ethics team who con- tributed to this
p.000007: document: Nicholas Aagaard, Sara Birch Ares, Hannah Coakley, Christine Fisher, Antonia Fitzek, Theresa
p.000007: Fuchs, Sandrine Gehriger, Christina Heinicke, Sophie Hermann, Katalin Hetzelt, Felicitas Holzer, Patrik Hummel, Helene
p.000007: Maree Jacmon, Euzebiusz Jamrozik, Selena Knight, Pat McConville, Sarah McNeill, Jan Nieke, Julia Pemberton,
p.000007: Maansi Shahid, Alexander Shivarev, and Michael Vaughn.
p.000007:
p.000007: WHO gratefully acknowledges Phuong Bach Huynh, School of Public Health, Texas A&M University, for the design
p.000007: of the cover page.
p.000007:
p.000007: Preparation of this guidance document would not have been possible without the generous support of the Fondation
p.000007: Brocher, Switzer- land; Monash-Warwick Alliance Seed Fund Scheme project on “Ethics of Public Health
p.000007: Security”, Australia; Wellcome Trust, United Kingdom; and the Institute for Bioethics and Health Policy,
p.000007: University of Miami, USA.
p.000007:
p.000007:
p.000008: 8
p.000008: Acknowledgements
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
p.000008:
...

p.000015: plan- ning, implementing, and evaluating public health practices. Even if systems are operative, however, new,
p.000015: focused studies are required to respond to epidemiological threats. Further, public health surveillance systems not
p.000015: only rely on but may also inform and improve clinical practice.
p.000015:
p.000015: Surveillance: ethics, law and history
p.000015:
p.000015: Nation states have established surveillance sys- tems that differ in scope and purpose. Interna- tional law and
p.000015: regulation have been important means of ensuring at least a basic level of public health surveillance in
p.000015: all countries. In 1969, the WHO Member States adopted the IHR, a revision and consolidation of the
p.000015: Inter- national Sanitary Regulations, as the frame- work for strengthening health security in an
p.000015: increasingly interconnected world. They came into force in 1971 (19). The IHR impose a legal obligation on all
p.000015: Member States to have cer- tain core public health capacities, including surveillance and data collection,
p.000015: with the goal
p.000015:
p.000016: 16
p.000016: Background
p.000016:
p.000016:
p.000016:
p.000016: of preventing, controlling or responding to the international spread of disease.
p.000016:
p.000016: Experience with the SARS crisis of 2003 led the World Health Assembly to adopt a signiﬁcant revision of the IHR
p.000016: on 23 May 2005 (9). While the IHR had originally focused on a short, ﬁxed list of communicable diseases, the revised
p.000016: reg- ulations – IHR (2005) – allow ﬂexibility to target any disease that may constitute a public health emergency of
p.000016: international concern. They also establish an obligation to create core capacity for surveillance and outbreak response
p.000016: to dis- ease and “public health events”. As of Novem- ber 2014, however, 48 countries had failed to communicate
p.000016: their capacity or plans, and another 81 had asked for extensions to com- ing into compliance (20). The
p.000016: recent outbreak of Ebola virus disease revealed that many countries had not satisﬁed their obligations
p.000016: under the IHR; only 64 countries – one third of those bound by the IHR – “had achieved these core
p.000016: capacities”. Nevertheless, while all countries are required to comply with the IHR, limited resources and
p.000016: political instability can pose obstacles to surveillance, and it may not be possible to overcome these obstacles
p.000016: with- out international assistance.
p.000016:
p.000016: The IHR (2005) are limited in the sense that they provide mainly a framework for gover- nance in
p.000016: addressing “public health emergen- cies of international concern”. The framework is neither for constructing
p.000016: comprehensive surveillance systems nor for grappling with the ethical issues posed by surveillance sys-
p.000016: tems and practices. International regulation, like national law and regulation, is an impor- tant tool
p.000016: that establishes a duty to conduct surveillance while also setting limits on that practice. What is legal,
p.000016: however, is not always ethical. Ethics is an essential tool for critically evaluating law, regulation and
...

p.000018:
p.000018: In its “International guidelines for ethical review of epidemiological studies” in 1991, CIOMS acknowledged that
p.000018: existing guidance focused on “patients and individual subjects” was not sufﬁcient for studies involving
p.000018: “groups” of people. After considerable controversy, a con- sensus emerged: CIOMS stressed the impor- tance of
p.000018: the principles of research ethics ﬁrst set out in the Nuremberg Code but recognized that application in the
p.000018: epidemiological context would require ﬂexibility (34). The tradition that developed was one in
p.000018: which research
p.000018:
p.000018: ethics committees could waive a requirement for informed consent when the risk posed by epidemiological
p.000018: research was “no more than minimal” and obtaining consent would make the research “impracticable” (34).
p.000018:
p.000018: While public health surveillance may share methodological strategies with epidemiologi- cal research, it is
p.000018: not simply another form of research. In surveillance a community is the subject of concern. That surveillance
p.000018: is one of the responsibilities of public health was rec- ognized in 1991 by CIOMS, which described
p.000018: surveillance in emergency outbreak situations as clearly requiring exemption from ethi- cal review and
p.000018: oversight. In dire situations, surveillance could not “await the formal approval of an ethical
p.000018: review committee” (34). Emergencies, however, accounted for only a small part of surveillance activities.
p.000018:
p.000018: Not until its 2009 revision did CIOMS guide- lines explicitly support continuous case-based public health
p.000018: surveillance (in the absence of informed consent). The revision stated, “Several considerations
p.000018: support the com- mon practice of requiring that all practitio- ners submit relevant data [to public
p.000018: health surveillance registries]: the importance of having comprehensive information … about an entire
p.000018: population, the scientiﬁc need to include all cases in order to avoid undetect- able selection bias and
p.000018: the general ethical principle that burdens and beneﬁts should be distributed across the population.” (35)
p.000018: This position echoed that of the Nufﬁeld Council on Bioethics in the United Kingdom. In 2007, the Council
p.000018: warned against allowing individuals to opt out of reporting, arguing, “We are aware of several examples [in
p.000018: which] consent requirements have or could have had serious negative consequences.” (36) Despite this sweeping
p.000018: endorsement of mandatory nominative case reporting without consent, the Council underscored the
p.000018: inevitability of
p.000018:
...

p.000025: advocacy directed at both the national
p.000025: and global communities, thus potentially empowering the most vulnerable. The pur- suit of equity
p.000025: establishes a warrant for sur- veillance, and the global community should provide the necessary help in
p.000025: moving from collecting and analysing data to action (see Guideline 6).
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: Interior view: a nurse is examining two young children in the dining area of the home; the mother is standing to the
p.000025: left; further to the left is a large stove situated next to a ﬁreplace.
p.000025: Source: The National Library of Medicine
p.000025:
p.000025:
p.000025:
p.000026: 26
p.000026: Guidelines
p.000026:
p.000026:
p.000026:
p.000026: Guideline 2. Countries have an obligation to develop appropriate, effective mechanisms to ensure ethical surveillance.
p.000026:
p.000026: Public health surveillance has inherent beneﬁts for the functioning of the public health sys- tem, as well as
p.000026: risks. Countries should have an appropriate, effective mechanism for ensur- ing adherence to ethical standards
p.000026: in both emergency and non-emergency situations. Decisions about changing an established sur- veillance
p.000026: system can pose important ethical challenges. Examples of changes that may require ethical scrutiny
p.000026: include: collecting data elements that reveal stigmatized behaviour; adding new elements of data collection, such
p.000026: as measurements of CD4 counts as part of routine HIV/AIDS surveillance; adopting new uses for existing
p.000026: surveillance data, such as for case management or contact tracing; or using public health surveillance data for
p.000026: commercial or security purposes.
p.000026:
p.000026: In the case of research, review committees monitor adherence to ethics standards. Such an independent,
p.000026: impartial oversight mecha- nism allows for close scrutiny and can ensure that relevant protection is
p.000026: in place. These guidelines do not recommend mechanisms that mirror those that have emerged in the
p.000026: context of research ethics. However, public health surveillance is currently not subject to routine
p.000026: oversight. It is the obligation of coun- tries to decide the most appropriate processes for identifying and
p.000026: addressing the ethical issues that arise in public health surveillance.
p.000026:
p.000026: Box 1 provides some examples of existing mechanisms. Any mechanism or process should ensure
p.000026: ethical implementation of sur- veillance without itself becoming an obstacle to achieving the larger public
...

p.000042: worker protection and workplace regulation (23). A review of the literature indicated that much of the
p.000042: failure to share information is due to poor planning rather than safety concerns. Programmes have experienced
p.000042: technical dif- ﬁculties in sharing data, some data requiring conversion (e.g. birth year to age) in order
p.000042: to link databases (84, 85).
p.000042:
p.000042: Public health systems should establish frame- works to enable secure sharing of data (see Guideline 10)
p.000042: with other national and inter- national agencies. Early collaboration to align processes in order to avoid
p.000042: foregoing beneﬁts or wasting resources is ethically warranted. Ethical frameworks for sharing should respect
p.000042: persons by ensuring that only the data required to fulﬁl a sufﬁciently important, legitimate public health
p.000042: purpose are shared, that data are not shared more broadly than necessary, and that data are not subsequently
p.000042: re-shared by other agencies, except under the conditions speciﬁed elsewhere in this document, e.g. in
p.000042: guidelines 16–17. When the protection of different datasets is not equivalent, the more stringent
p.000042: privacy standard should be applied.
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042:
p.000042: Guidelines
p.000043: 43
p.000043:
p.000043: Guideline 15. During a public health emergency, it is imperative that all parties involved in surveillance share data
p.000043: in a timely fashion.
p.000043: The collection and sharing of data are essen- tial activities in ordinary public health practice. During
p.000043: emergencies, data-sharing takes on increased importance because of the urgency of the situation,
p.000043: uncertainty in the face of incomplete or changing information, the com- promised response capacity of local health
p.000043: sys- tems and the heightened role of cross-border collaboration. For these reasons, “rapid data sharing is
p.000043: critical during an unfolding health emergency” (86). It not only constitutes good public health
p.000043: practice but is ethically imperative. Ethically appropriate, rapid shar- ing of data can help in
p.000043: identifying etiological factors; predicting disease spread; evaluating existing and novel treatment,
p.000043: symptomatic care and preventive measures; and guiding
p.000043: the deployment of limited resources. As dis- cussed in the WHO guidance on managing ethical issues in
p.000043: infectious disease outbreaks (49), clinical and research data that are crucial for emergency response should also be
p.000043: shared. Data-sharing is also an obligation under the IHR in both health emergencies and infectious disease
p.000043: outbreaks.
p.000043: As part of continuous pre-epidemic prepared- ness, countries should review their laws, poli- cies and practices on
p.000043: data sharing to ensure that they adequately protect the conﬁden- tiality of personal information
p.000043: and address other relevant ethical questions, such as set- tling disputes about the ownership or control of
p.000043: surveillance data. Efforts should be made to ensure that rapid sharing of surveillance information with
p.000043: immediate implications for protecting public health and advancing the common good should not preclude
p.000043: subse- quent publication in a scientiﬁc journal (87).
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: Medical student and district surveillance ofﬁcer investigating suspected Ebola cases in Western Region of
p.000043: Sierra Leone.
p.000043: Source: WHO /Stéphane Saporito
p.000043:
p.000044: 44
p.000044: Guidelines
p.000044:
p.000044:
p.000044:
p.000044: Guideline 16. With appropriate justiﬁcation and safeguards, public health agencies may use or share surveillance data
p.000044: for research purposes.
p.000044:
p.000044: Surveillance data have often served as a foun- dation for important public health research (88-90). For example,
...

General/Other / cioms guidelines

Searching for indicator cioms:

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p.000010: priority for wealthy countries (3). But even when sur- veillance is a priority, fragmented, unlinked or
p.000010: consolidated data sets remain a problem for their effective use for public health purposes.
p.000010:
p.000010: While surveillance is often conducted without public knowledge or concern when the risk for stigma,
p.000010: discrimination or perpetuation of inequity is high, surveillance inevitably involves conﬂicts of values and
p.000010: judgements about how to advance public health goals without harm- ing individuals or groups in society. Thus,
p.000010: the priorities and the distribution of resources for surveillance merit public debate, not only within
p.000010: societies but among global communi- ties. Despite landmark international guidelines on the ethics of research,
p.000010: including epidemio- logical studies, and speciﬁc ethical guidelines for surveillance of particular
p.000010: diseases and/ or in particular countries, there has been no international ethics framework to guide pub-
p.000010: lic health surveillance systems in general that spans infectious diseases, noncommunicable diseases (NCDs),
p.000010: disease outbreaks, environ- mental and occupational exposures, and even national borders. The Council for
p.000010: International
p.000010:
p.000010: Introduction
p.000011: 11
p.000011:
p.000011: Organizations of Medical Sciences (CIOMS), the World Medical Association and others have identiﬁed this
p.000011: gap (4). It is crucial to have ethical guidance as a baseline for judging public health surveillance for
p.000011: all diseases and exposure across national borders.
p.000011:
p.000011:
p.000011: The fragmented, disease-speciﬁc nature of international guidance is not surprising, given the uneven,
p.000011: incomplete state of public health surveillance in both high- and low-resource settings and different national and
p.000011: subnational mandates for surveillance in different legal sys- tems. It is imperative to address the ethics of
p.000011: public health surveillance in a way that cuts across conventional boundaries, for a number of reasons.
p.000011:
p.000011: Public health operates in an era of global health threats, such as AIDS, severe acute
p.000011: respiratory syndrome (SARS), inﬂuenza, Ebola virus disease, Zika virus infection, obesity and coronary heart
p.000011: disease. Given the zoonotic ori- gin of many of the conditions, surveillance will increasingly involve monitoring
p.000011: the animal– human interface. For example, surveillance of food and animal feed for pathogens must be
p.000011: linked to surveillance for the same pathogens in humans.
p.000011:
p.000011: Surveillance is conducted in a context in which there have been signiﬁcant advances in the capacity to collect
p.000011: and share data from previ- ously unimagined sources, such as social media or geospatial mobile phone data.
p.000011: There have been parallel technological leaps in possibili- ties for identifying disease; genetic analysis, as
...

p.000018:
p.000018: Limited academic literature on the practice of public health surveillance addresses the major ethical questions that
p.000018: arise in data collection; when the data are actually stored, used and shared; and data dissemination. The
p.000018: academic literature is (28), however, no substitute for guidelines that go beyond current disease-
p.000018: speciﬁc, national recommendations (29).
p.000018:
p.000018: In the decades since the Second World War, both international and national bodies have proposed ethical
p.000018: principles, guidelines and laws to govern research with human sub- jects. In response to egregious
p.000018: harm inﬂicted on individuals coerced into clinical research, new codes of ethics uniformly prioritized indi-
p.000018: vidual self-determination and emphasized the importance of informed consent for research, while acknowledging that
p.000018: it would hardly be straightforward in complex situations to bal- ance the protection of human research
p.000018: sub- jects against the social beneﬁt of the research. In the practice of clinical ethics, autonomy assumed a
p.000018: place of singular importance, rep- resenting a fundamental change in a moral world view (30-33).
p.000018:
p.000018: In its “International guidelines for ethical review of epidemiological studies” in 1991, CIOMS acknowledged that
p.000018: existing guidance focused on “patients and individual subjects” was not sufﬁcient for studies involving
p.000018: “groups” of people. After considerable controversy, a con- sensus emerged: CIOMS stressed the impor- tance of
p.000018: the principles of research ethics ﬁrst set out in the Nuremberg Code but recognized that application in the
p.000018: epidemiological context would require ﬂexibility (34). The tradition that developed was one in
p.000018: which research
p.000018:
p.000018: ethics committees could waive a requirement for informed consent when the risk posed by epidemiological
p.000018: research was “no more than minimal” and obtaining consent would make the research “impracticable” (34).
p.000018:
p.000018: While public health surveillance may share methodological strategies with epidemiologi- cal research, it is
p.000018: not simply another form of research. In surveillance a community is the subject of concern. That surveillance
p.000018: is one of the responsibilities of public health was rec- ognized in 1991 by CIOMS, which described
p.000018: surveillance in emergency outbreak situations as clearly requiring exemption from ethi- cal review and
p.000018: oversight. In dire situations, surveillance could not “await the formal approval of an ethical
p.000018: review committee” (34). Emergencies, however, accounted for only a small part of surveillance activities.
p.000018:
p.000018: Not until its 2009 revision did CIOMS guide- lines explicitly support continuous case-based public health
p.000018: surveillance (in the absence of informed consent). The revision stated, “Several considerations
p.000018: support the com- mon practice of requiring that all practitio- ners submit relevant data [to public
p.000018: health surveillance registries]: the importance of having comprehensive information … about an entire
p.000018: population, the scientiﬁc need to include all cases in order to avoid undetect- able selection bias and
p.000018: the general ethical principle that burdens and beneﬁts should be distributed across the population.” (35)
p.000018: This position echoed that of the Nufﬁeld Council on Bioethics in the United Kingdom. In 2007, the Council
p.000018: warned against allowing individuals to opt out of reporting, arguing, “We are aware of several examples [in
p.000018: which] consent requirements have or could have had serious negative consequences.” (36) Despite this sweeping
p.000018: endorsement of mandatory nominative case reporting without consent, the Council underscored the
p.000018: inevitability of
p.000018:
p.000018: Framing the ethics of surveillance
p.000019: 19
p.000019:
p.000019: making ethical judgements about the limits of surveillance (36).
p.000019: Neither CIOMS nor the Nufﬁeld Council pro- vided more guidelines on ethics for public health surveillance,
p.000019: nor did they resolve the vexing problem of how to distinguish surveil- lance from research on human subjects.
p.000019: Are there morally relevant differences between public health surveillance and research (4, 37)? Do
p.000019: they require different general guide- lines and oversight mechanisms? Does, indeed, public health
p.000019: surveillance require any kind of formal guidelines or continuous over- sight? Drawing the line between research and
p.000019: surveillance – or between research and other forms of vital social inquiry such as quality improvement,
p.000019: implementation research, oral history or even journalism – has been chal- lenging, but deﬁnitional
p.000019: solutions have (to date) proved inadequate (38, 39). Accord- ingly, a leading group of surveillance
p.000019: experts underscored the need “to move past the formal demarcation between research and
p.000019:
p.000019: practice” (29). These guidelines seek to do so, not by laying out new deﬁnitions but by setting into
p.000019: bold relief both the centrality of public health surveillance to population well- being and the need for
p.000019: appropriate ethical guidance and review – that is, for a para- digm of accountability that responds to
p.000019: the demands of public health and that is distinct from the systems that have governed research for half a
p.000019: century.
p.000019:
p.000019: Public health ethics
p.000019:
...

p.000039: required and relevant protection is in place. Under these circumstances, informed consent is not ethically required.
p.000039:
p.000039: There is a long history of objection to public health surveillance without informed consent. Nevertheless,
p.000039: informed consent is not the default in public health surveillance. Many coun- tries have enacted laws that
p.000039: require such sys- tems to collect personal data without consent, subject to legislatively prescribed safeguards.
p.000039:
p.000039: All individuals in a population are likely to beneﬁt from surveillance programmes. Indi- viduals,
p.000039: therefore, have a reciprocal obliga- tion to contribute to surveillance and thereby promote the common good.
p.000039: Even when the potential beneﬁt to any one individual is small, as the epidemiologist Geoffrey Rose
p.000039: famously pointed out, the beneﬁt to the community as a whole may be large (77). Population beneﬁts
p.000039: provide the moral obliga- tion for individuals to contribute. If it is pos- sible to opt out (and too many
p.000039: people do so),
p.000039:
p.000039: public health might be unacceptably com- promised (78). Seeking informed consent is often not feasible in
p.000039: practice, e.g. from large populations. It may be prohibitively costly and unwarranted when the risks are
p.000039: low (as in some epidemiological research in which CIOMS has allowed waiving of consent). In some cases,
p.000039: however, consent is the norm, such as in routine descriptive health sur- veys. It is the obligation
p.000039: of the public health authorities accountable for surveillance to assess the importance and feasibility of
p.000039: seek- ing informed consent. It is important to clar- ify that, when consent is required, it must be genuinely
p.000039: voluntary.
p.000039:
p.000039: Whether or not consent is sought, informa- tion about the nature and purpose of surveil- lance and about any risk
p.000039: for harm should be publicly accessible (see Guideline 13). Rel- evant protection and adequate governance
p.000039: mechanisms (Guideline 2 and the discussion on good governance in section III), appropri- ate ethics training
p.000039: (guidelines 2 and 6) and data security (Guideline 10) will enhance trust in surveillance systems
p.000039: and ensure protection.
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000040: 40
p.000040: Guidelines
p.000040:
p.000040:
p.000040:
p.000040: Guideline 13. Results of surveillance must be effectively communicated to relevant target audiences.
p.000040:
p.000040: There is compelling, widely accepted moral justiﬁcation for dissemination of the results of surveillance to
p.000040: relevant target audiences, although it is not a substitute for ameliora- tive action on the part of those
p.000040: responsible for surveillance. At the local level, relevant target audiences include the community, community ofﬁcials
p.000040: and opinion leaders, health care pro- viders (doctors, nurses, health care workers), policy-makers, health
p.000040: advocates and health volunteers. The relevant target audiences may also include Member States, national
p.000040: and international agencies, and NGOs.
p.000040:
p.000040: Although CIOMS guidelines are focused on research, they stress the importance of communicating
p.000040: results, both positive and negative, to “promote and enhance pub- lic discussion”. Without
p.000040: dissemination, the social value of the work cannot be realized. In the absence of appropriate
p.000040: dissemination, those who collect data, including surveillance data, might rightly be accused of exploiting the
p.000040: individuals and groups whose health data they collect and analyse in the name of the common good. The
p.000040: Nufﬁeld Council on Bio- ethics argued that, for dissemination to be considered appropriate, those from
p.000040: whom data are collected should understand the implications of the results for both health care and prevention
p.000040: (35).
p.000040:
p.000040: Surveillance ﬁndings should be communicated concisely in a way that is understandable to a lay audience and
p.000040: sensitive to community concerns (see Guideline 7). Communica- tion should not seed panic but alert
p.000040: people to relevant risks in a sensible manner. Mass mailings, toll-free information hotlines, social media,
p.000040: newspapers, seminars, and public meetings are all possible means for conveying
p.000040: surveillance information to the communities from which data were collected and analysed and to the public.
p.000040: In resource-limited set- tings, street theatre, and folk art and other community-based methods can be
p.000040: adopted for the same purpose. Communication should also provide meaningful information for phy- sicians, hospital
p.000040: managers and other relevant target audiences.
p.000040:
...

p.000044: to the surveillance data in question. There may sometimes be disagreement about what should be con-
p.000044: sidered “sufﬁciently important” research to justify sharing of surveillance data for research
p.000044: purposes. This is a matter that local governments, public health authorities and/ or research ethics committees
p.000044: (as described below) should judge, taking into account the considerations and guidelines set out in this
p.000044: document.
p.000044:
p.000044: Sharing of surveillance data for research pur- poses requires appropriate safeguards, such as ethical oversight
p.000044: (see Guideline 2), anonymiza- tion, and data security. While the kind of ethi- cal review required for conducting
p.000044: research is not appropriate for conducting public health surveillance, surveillance data should be shared only
p.000044: for research projects that have been reviewed and approved by an appropriate
p.000044: research ethics committee or another appro- priate body, consistent with international and local
p.000044: standards on the ethical conduct of research. In making decisions about granting access to surveillance data,
p.000044: ethics committees should consider the potential public health impact of research (Is the research sufﬁciently
p.000044: important, or does it have, in the language of CIOMS, “social value”?), the risks to the sub- jects involved, the
p.000044: measures in place to protect privacy, and the importance and feasibility of seeking consent.
p.000044:
p.000044: Striking the appropriate balance between safeguards and research advancement will sometimes be
p.000044: challenging. One controversial way of sharing sensitive information on drug use has been to delete any
p.000044: information on substance use disorders from individual clinical records released to researchers. Such protec-
p.000044: tion in the name of privacy has become the centre of controversy in the context of a wide- reaching opioid
p.000044: epidemic. One group of critics has argued that this has left researchers “ﬂy- ing blind” (91).
p.000044:
p.000044: Researchers who have been provided with surveillance data should inform public health authorities about
p.000044: their ﬁndings. Before surveil- lance data are shared with researchers, there should be agreement about:
p.000044: appropriate data uses, restrictions on data re-sharing, adequate acknowledgement of the data source in publi- cations,
p.000044: and data destruction conditions at the end of the research phase.
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044:
p.000044: Guidelines
p.000045: 45
p.000045:
p.000045:
p.000045: Guideline 17. Personally identiﬁable surveillance data should not be shared with agencies that are likely to use them
...

General/Other / tri-council policy statement

Searching for indicator tri-council:

(return to top)
p.000026: and imple- menting a surveillance system.
p.000026:
p.000026: While the establishment of an indepen- dent, impartial ethics oversight mechanism is warranted,
p.000026: concrete implementation will depend on the social, political, legal, and cultural context in which surveillance
p.000026: is con- ducted (52). Research usually entails discrete projects with time-limited horizons, whereas surveillance
p.000026: usually involves continuous monitoring as opposed to a one-time review. The most appropriate mechanism for
p.000026: ethical scrutiny should be chosen in a transparent, accountable fashion. (See guidelines 2 and 5 and the
p.000026: discussion of good governance in section III.)
p.000026:
p.000026:
p.000026: Guidelines
p.000027: 27
p.000027:
p.000027:
p.000027:
p.000027: Box 1. Examples of oversight mechanisms
p.000027:
p.000027: Public Health Ontario (Canada)
p.000027:
p.000027: In 2012, Public Health Ontario published “A framework for the conduct of public health initiatives”. It
p.000027: applies an integrated approach for ethics review, in which all evidence-generating initiatives undergo ethi- cal
p.000027: scrutiny proportionate to the level of risk. Its Ethics Review Board plays a vital role in helping to ensure that
p.000027: research and other initiatives conducted by Public Health Ontario are carried out in a manner that is
p.000027: consistent with the second edition of the Federal “Tri-council policy statement on ethical conduct for
p.000027: research involving humans and other relevant regulations, policies and guidelines”. The Ethics Review Board addresses
p.000027: research, evaluation, surveillance, and quality improvement projects that involve human partici- pants, their data, or
p.000027: their biological materials. Membership of the Board complies with the provisions of the Federal policy statement with
p.000027: regard to expert representation and composition, with members selected from Public Health Ontario and public health
p.000027: units and academic institutions in Ontario. They have expertise in various public health disciplines and in
p.000027: methodology, law, and ethics; the members also include community representatives. (Source:
p.000027: https://www.publichealthontario.ca/en/About/Pages/Ethics-Review-Board.aspx)
p.000027:
p.000027: Centers for Disease Control and Prevention, Public Health Ethics Unit (USA)
p.000027:
p.000027: The Centers for Disease Control and Prevention established the Public Health Ethics Unit in the ofﬁce of the Associate
p.000027: Director for Science, which collaborates with the Public Health Ethics Committee. It provides support throughout the
p.000027: institution; its aims are to “integrate the tools of ethical analysis into day-to-day operations”. It provides
p.000027: training, fosters and sustains a culture of ethical analysis, and provides guidance for and support in ethics
p.000027: consultations. (Source: https://www.cdc.gov/od/science/integrity/phethics/)
...

Orphaned Trigger Words

p.000004: good need to be con- sidered and balanced, and knowing how to do so can be challenging in practice.
p.000004:
p.000004: I am pleased to see WHO leading in this impor- tant area by placing ethics at the heart of pub- lic health
p.000004: surveillance. The WHO Guidelines on Ethical Issues in Public Health Surveillance is
p.000004: the ﬁrst international framework of its kind, it ﬁlls an important gap. The goal of the guide- line development project
p.000004: was to to help policy- makers and practitioners navigate the ethical issues presented by public health
p.000004: surveillance. This document outlines 17 ethical guidelines that can assist everyone involved in public
p.000004: health surveillance, including ofﬁcials in gov- ernment agencies, health workers, NGOs and the private sector.
p.000004: I gratefully acknowledge the many experts and WHO colleagues who have made important contributions to
p.000004: this publication.
p.000004:
p.000004: WHO has rightly asserted that public health surveillance, conducted in a manner that anticipates
p.000004: ethical challenges and proactively seeks to reduce unnecessary risks, provides the architecture for social
p.000004: well-being. It is now up to the global community and countries to take up this challenge and implement the guide-
p.000004: lines in their surveillance systems.
p.000004:
p.000004:
p.000004:
p.000004:
p.000004: Dr Marie-Paule Kieny Assistant Director-General Health Systems and
p.000004: Innovation
p.000004:
p.000004:
p.000004:
p.000004:
p.000004: Foreword
p.000005: 5
p.000005:
p.000005: Acknowledgements
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005: This document was prepared by the WHO Global Health Ethics team, led by Andreas Reis and coordinated by
p.000005: Abha Saxena of the Depart- ment of Information, Evidence and Research in the cluster of Health Systems and Innovation.
p.000005:
p.000005: WHO extends special thanks to the co-chairs of the WHO Guidelines Development Group: Amy L. Fairchild, Texas
p.000005: A&M University School of Public Health, USA, and Co-director for the Columbia University WHO Collaborating Cen- tre
p.000005: for Bioethics, and Ali Akbar Haghdoost, Kerman University of Medical Sciences, Islamic Republic of Iran.
p.000005:
p.000005: Amy Fairchild was lead writer and chief editor. Ali Akbar Haghdoost contributed technical text and was
p.000005: responsible for ensuring the accuracy of the document with regard to the operation of surveillance systems.
p.000005: Angus Dawson and Lisa Lee contributed substantially to formulating the guiding principles and discussions. Calvin
p.000005: Ho Wai Loon provided core text on legal systems and issues. Jennifer Gibson contributed text on accountability
p.000005: and governance. Ronald Bayer, who was Chair of the Network of Collaborating Centres for most of the duration of this
p.000005: project, played a pivotal editorial role, with Ross Upshur and Carla Saenz. Ronald Bayer, Michael Selgelid, and Angus
p.000005: Dawson substantively addressed comments from the Guideline Development Group and external reviewers.
p.000005: Michael Selgelid, Andreas Reis, Amy Fairchild and Ronald Bayer prepared grant proposals to fund the work.
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005:
p.000005: WHO gratefully acknowledges the contribution of the WHO Guidelines Development Group, which shared extensive
p.000005: knowledge, original text and comments on the document. All are also co-authors of the document:
p.000005: ...

p.000023: to ethical scrutiny; (ii) the obli- gation to ensure appropriate protection and rights; and (iii)
p.000023: considerations in making deci- sions about how to communicate and share surveillance data. These guidelines
p.000023: represent a starting point for the searching, sustained discussions that public health surveillance
p.000023: demands. Like other international guidelines on research ethics, the ethics of surveillance will require
p.000023: continuous review and revision in the light of experience.
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023: Kim Pai factory, Bangkok, June 2015.
p.000023: Source: WHO /Diego Rodriguez
p.000023:
p.000024: 24
p.000024: Guidelines
p.000024:
p.000024:
p.000024:
p.000024: Guideline 1. Countries have an obligation to develop appropriate, feasible, sustainable public health surveillance
p.000024: systems.
p.000024: Surveillance systems should have a clear purpose and a plan for data collection, analysis, use and dissemination based
p.000024: on relevant public health priorities.
p.000024:
p.000024: Member States have an ethical duty to pro- tect population health – not only that of their citizens but that
p.000024: of all people within their borders, including refugees, undocumented workers, and individuals in
p.000024: transit (51) – and to address the disparities that characterize the distribution of morbidity and
p.000024: mortality. The duty to protect population health is the foundation of an afﬁrmative responsibility to
p.000024: conduct public health surveillance. The exer- cise of that responsibility may be assigned to subnational
p.000024: governmental bodies.
p.000024:
p.000024: Without public health surveillance systems, population health cannot be protected and inequalities cannot
p.000024: be adequately addressed. Inattention to pressing public health needs leads to erosion of trust. Thus,
p.000024: from the per- spective of the common good, the failure of countries and the international community
p.000024: to undertake adequate public health surveil- lance represents a central moral concern. The importance of
p.000024: population health thus imposes upon States an obligation to develop systems that capture data critical to
p.000024: identifying and responding to (outbreaks of) infectious dis- eases, epidemic threats and the toll exacted
p.000024: by injuries and chronic disease, which demand environmental and occupational monitoring or investigation. A
p.000024: commitment to equity and justice can uncover the ways in which pat- terns of morbidity and mortality reﬂect
p.000024: and contribute to social inequality. As such com- prehensive systems are beyond the capacity of some countries,
p.000024: the international community, as described in Guideline 6, has the obligation to provide support.
p.000024: Passive systems of surveillance are often suf- ﬁcient, such as monitoring seasonal outbreaks of inﬂuenza from
p.000024: incidence and prevalence rates that include neither names nor case veri- ﬁcation with costly laboratory tests for all
p.000024: indi- viduals with inﬂuenza-like syndromes. Even in the instance of inﬂuenza, however, systematic community-based
p.000024: surveillance provides a more accurate depiction of outbreaks. The State might have to establish active
p.000024: surveillance sys- tems, taking proactive steps, for example, to ﬁnd data: this might require examining clinical
p.000024: records to ensure complete reporting and to conﬁrm an inﬂuenza diagnosis. Cancer reg- istries in some
p.000024: countries have included such active surveillance.
p.000024:
p.000024: Surveillance systems often entail the enact- ment of regulations and statutes that impose upon clinicians,
p.000024: health care administrators or laboratories a duty to report to public health registries. To ensure
p.000024: effective surveillance of disease priorities, it is often necessary to man- date the reporting of individually
p.000024: identiﬁable data, including names and other socio-demo- graphic characteristics. Such intrusion on clini- cal
p.000024: conﬁdentiality is justiﬁed when names are required to ensure the collection of accurate data, which is separate
p.000024: from the need to target interventions. But accurate data and targeted interventions both rest on the moral obligation
p.000024: to prevent harm to others and the common good or to provide the best resources to pop- ulations according to ...

p.000029: technical perspective will depend on the priority, the context and the type of sur- veillance. While some
p.000029: countries and institu- tions explicitly stress the accuracy or reliability of data (55), others value rapid
p.000029: collection of useful data over complete accuracy.
p.000029:
p.000029: Countries have obligations to ensure suf- ﬁcient numbers of trained staff to generate and competently
p.000029: analyse surveillance data
p.000029:
p.000029: and promote quality. The quality of surveil- lance data can be improved not only by formal technical evaluation
p.000029: but also by regular audit and benchmarking against national and inter- national norms (56). Countries have an
p.000029: obli- gation to educate people who contribute to surveillance about its goals and to explain why surveillance
p.000029: is conducted, what risks might arise, how those risks can be minimized and any appropriate legal and
p.000029: ethical obligations. Individual health care workers, professional bodies, and agencies (like hospitals
p.000029: and labo- ratories), in turn, have a professional obliga- tion to support and contribute to maintaining the
p.000029: integrity of surveillance activities and to ensure that data of the best possible quality are obtained.
p.000029:
p.000029: Counterintuitively, data quality may be com- promised by widely used performance-based funding mechanisms.
p.000029: Too great an emphasis on achieving targets, linked to funding, can undermine the integrity of
p.000029: surveillance. For example, countries may be pressured to pro- duce data to secure resources, and staff
p.000029: may have to choose between providing either the data desired by funders or the correct data and risk
p.000029: losing their jobs. Realistic target-set- ting at international and national levels and broader international
p.000029: support for surveillance (Guideline 6) are possible solutions to coun- teract the scramble for funding that
p.000029: produces unreliable data.
p.000029:
p.000029:
p.000029:
p.000029:
p.000029:
p.000029:
p.000029:
p.000029:
p.000029:
p.000029:
p.000029:
p.000029:
p.000030: 30
p.000030: Guidelines
p.000030:
p.000030:
p.000030:
p.000030: Guideline 5. Planning for public health surveillance should be guided by transparent governmental priority-setting.
p.000030:
p.000030: Public health surveillance involves the invest- ment of resources that could be allocated to meet other
p.000030: goals, such as clinical care or pre- vention (57). Furthermore, within the resources available for public
p.000030: health surveillance, priorities must be set. Given competing goods, the allocation of scarce resources must
p.000030: inevita- bly engage questions of equity and efﬁciency. As no absolute standard can guide such deter- minations, it is
p.000030: critical that decision-making be transparent, fair and open to revision (58). Governments are accountable for
p.000030: how priori- ties are set. Transparency is important because it fosters trust and creates conditions for citi-
p.000030: zens to advance the common good individually and collectively (59).
p.000030:
p.000030: Transparency is essential with respect to: (i) the aims and duration of any public health surveil- lance activity, (ii)
p.000030: the rationale for such activity relative to explicit health or health care system goals, (iii) the intended beneﬁts
p.000030: and potential burdens to citizens and other actors of public ...

Appendix

Indicator List

Indicator	Vulnerability
HIV	HIV/AIDS
abuse	Victim of Abuse
access	Access to Social Goods
age	Age
arrest	person under arrest
autonomy	Impaired Autonomy
blind	visual impairment
blinded	visual impairment
children	Child
cioms	cioms guidelines
coerced	Presence of Coercion
criminal	criminal
drug	Drug Usage
educational	education
emergencies	patients in emergency situations
emergency	Public Emergency
faith	Religion
gender	gender
hiv/aids	HIV/AIDS
home	Property Ownership
language	Linguistic Proficiency
liberty	Incarcerated
low-income	Economic/Poverty
migrant	migrant
nation	stateless persons
opinion	philosophical differences/differences of opinion
parent	parents
party	political affiliation
philosophy	philosophical differences/differences of opinion
political	political affiliation
poor	Economic/Poverty
poverty	Economic/Poverty
property	Property Ownership
refugee	Refugee Status
sex workers	sex worker
sick	Physically Ill
single	Marital Status
stigma	Threat of Stigma
stigmatization	Threat of Stigma
stigmatized	Threat of Stigma
student	Student
substance	Drug Usage
substance use	substance use
threat	Threat of Stigma
trauma	Victim of Abuse
tri-council	tri-council policy statement
violence	Threat of Violence
volunteers	Healthy People
vulnerability	vulnerable
vulnerable	vulnerable

Indicator Peers (Indicators in Same Vulnerability)

Indicator	Peers
HIV	['hiv/aids']
abuse	['trauma']
blind	['blinded']
blinded	['blind']
drug	['substance']
hiv/aids	['HIV']
home	['property']
low-income	['poor', 'poverty']
opinion	['philosophy']
party	['political']
philosophy	['opinion']
political	['party']
poor	['poverty', 'low-income']
poverty	['poor', 'low-income']
property	['home']
stigma	['threat', 'stigmatization', 'stigmatized']
stigmatization	['stigma', 'threat', 'stigmatized']
stigmatized	['stigma', 'threat', 'stigmatization']
substance	['drug']
threat	['stigma', 'stigmatization', 'stigmatized']
trauma	['abuse']
vulnerability	['vulnerable']
vulnerable	['vulnerability']

Trigger Words

capacity

consent

cultural

developing

ethics

harm

justice

protect

protection

risk

self-determination

sensitive

welfare

Applicable Type / Vulnerability / Indicator Overlay for this Input

Vulnerability Type	Vulnerability	Indicator	# Matches
Political	Refugee Status	refugee	1
Political	criminal	criminal	1
Political	migrant	migrant	1
Political	person under arrest	arrest	1
Political	political affiliation	party	3
Political	political affiliation	political	9
Political	stateless persons	nation	3
Political	vulnerable	vulnerable	5
Political	vulnerable	vulnerability	5
Health	Drug Usage	drug	8
Health	Drug Usage	substance	2
Health	HIV/AIDS	HIV	19
Health	HIV/AIDS	hiv/aids	0
Health	Healthy People	volunteers	1
Health	Physically Ill	sick	3
Health	patients in emergency situations	emergencies	6
Health	substance use	substance use	1
Health	visual impairment	blind	1
Health	visual impairment	blinded	1
Social	Access to Social Goods	access	17
Social	Age	age	3
Social	Child	children	3
Social	Incarcerated	liberty	2
Social	Linguistic Proficiency	language	3
Social	Marital Status	single	1
Social	Presence of Coercion	coerced	1
Social	Property Ownership	home	3
Social	Property Ownership	property	4
Social	Religion	faith	1
Social	Student	student	1
Social	Threat of Stigma	stigma	3
Social	Threat of Stigma	threat	2
Social	Threat of Stigma	stigmatization	6
Social	Threat of Stigma	stigmatized	1
Social	Threat of Violence	violence	2
Social	Victim of Abuse	trauma	1
Social	Victim of Abuse	abuse	1
Social	education	educational	1
Social	gender	gender	1
Social	parents	parent	1
Social	philosophical differences/differences of opinion	opinion	2
Social	philosophical differences/differences of opinion	philosophy	1
Social	sex worker	sex workers	1
Economic	Economic/Poverty	poor	1
Economic	Economic/Poverty	poverty	1
Economic	Economic/Poverty	low-income	1
General/Other	Impaired Autonomy	autonomy	4
General/Other	Public Emergency	emergency	9
General/Other	cioms guidelines	cioms	9
General/Other	tri-council policy statement	tri-council	1

WHO Guidelines on Ethical Issues in Public Health Surveillance

Applicable Type / Vulnerability / Indicator Overlay for this Input

Political / Refugee Status

Political / criminal

Political / migrant

Political / person under arrest

Political / political affiliation

Political / stateless persons

Political / vulnerable

Health / Drug Usage

Health / HIV/AIDS

Health / Healthy People

Health / Physically Ill

Health / patients in emergency situations

Health / substance use

Health / visual impairment

Social / Access to Social Goods

Social / Age

Social / Child

Social / Incarcerated

Social / Linguistic Proficiency

Social / Marital Status

Social / Presence of Coercion

Social / Property Ownership

Social / Religion

Social / Student

Social / Threat of Stigma

Social / Threat of Violence

Social / Victim of Abuse

Social / education

Social / gender

Social / parents

Social / philosophical differences/differences of opinion

Social / sex worker

Economic / Economic/Poverty

General/Other / Impaired Autonomy

General/Other / Public Emergency

General/Other / cioms guidelines

General/Other / tri-council policy statement

Orphaned Trigger Words

Appendix

Indicator List

Indicator Peers (Indicators in Same Vulnerability)

Trigger Words

Applicable Type / Vulnerability / Indicator Overlay for this Input