79C3C34C52B45572883A05D425EB0F82
Managing Ethical Issues in Infectious Disease Outbreaks: Guidance Document
https://apps.who.int/iris/bitstream/handle/10665/250580/9789241549837-eng.pdf?sequence=1
http://leaux.net/URLS/ConvertAPI Text Files/1179BFAE6BECF21B470CF44E1CC7CDD1.en.txt
Examining the file media/Synopses/1179BFAE6BECF21B470CF44E1CC7CDD1.html:
This file was generated: 2020-12-01 09:27:53
| 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
Political / political affiliation
Searching for indicator political:
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p.000006: decreasing needed resources and access to health care. Moreover, infectious disease outbreaks can generate or
p.000006: exacerbate social crises that can weaken already fragile health systems. Within such contexts, it
p.000006: is not possible to satisfy all urgent needs simultaneously, forcing decision-makers to weigh and prioritize potentially
p.000006: competing ethical values. Time pressures and resource constraints may force action without
p.000006: the thorough deliberation, inclusiveness and transparency that a robust ethical decision-making process demands.
p.000006:
p.000006: This guidance document on ethical issues that arise specifically in the context of infectious disease outbreaks aims to
p.000006: complement existing guidance on ethics in public health. It should therefore be read in conjunction with more general
p.000006: guidance on issues such as public health surveillance,
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006: research with human participants, and addressing the needs of vulnerable populations.
p.000006:
p.000006: Setting up decision-making systems and procedures in advance is the best way to ensure that ethically appropriate
p.000006: decisions will be made if an outbreak
p.000006: 8 occurs. Countries, health-care institutions,
p.000006: international organizations and others involved in epidemic response efforts are encouraged to develop practical
p.000006: strategies and tools to apply the principles in this guidance document to their specific settings, taking into account
p.000006: local social, cultural, and political contexts. WHO is committed to providing countries with technical assistance in
p.000006: support of these efforts.
p.000006:
p.000006:
p.000006: Relevant ethical principles
p.000006:
p.000006: Ethics involves judgements about “the way we ought to live our lives, including our actions, intentions, and our
p.000006: habitual behaviour.”3 The process of ethical analysis involves identifying relevant principles, applying them to a
p.000006: particular situation, and making judgements about how to weigh competing principles when it is not possible to satisfy
p.000006: them all. This guidance document draws on a variety of ethical principles, which are grouped below into seven general
p.000006: categories. These categories are presented merely for the convenience
p.000006: of the reader; other ways of grouping them are equally legitimate.
p.000006:
p.000006: Justice — As used in this document, justice, or fairness, encompasses two different concepts. The first is equity,
p.000006: which refers to fairness in the distribution of resources, opportunities and outcomes. Key elements of equity include
p.000006: treating like
p.000006: cases alike, avoiding discrimination and exploitation, and being sensitive to persons who are especially vulnerable to
p.000006: harm or injustice. The second aspect of justice is procedural justice, which refers to a fair process for making
p.000006: important decisions.
...
p.000006: Respect for persons — The term “respect for persons” refers to treating individuals in ways that are fitting to and
p.000006: informed by a recognition of our common humanity, dignity and inherent rights. A central
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p.000006: aspect of respect for persons is respect for autonomy, which requires letting individuals make their own choices based
p.000006: on their values and preferences. Informed consent, a process in which a competent individual authorizes a course of
p.000006: action based on sufficient relevant information, without coercion or undue inducement, is one
p.000006: way to operationalize this concept. Where individuals lack decision-making capacity, it may be necessary for others to
p.000006: be charged with protecting their interests. Respect for persons also includes paying attention to values such as
p.000006: privacy and confidentiality, as well as social, religious and cultural beliefs and important relationships, including
p.000006: family bonds. Finally, respect for persons requires transparency and truth-telling in the context of carrying out
p.000006: public health and research activities.
p.000006:
p.000006: Liberty — Liberty includes a broad range of social, religious and political freedoms, such as freedom of movement,
p.000006: freedom of peaceful assembly, and freedom of speech. Many aspects of liberty are protected as fundamental human rights.
p.000006:
p.000006: Reciprocity — Reciprocity consists of making a “fitting and proportional return” for contributions that people have
p.000006: made.6 Policies that encourage reciprocity can
p.000006: be an important means of promoting the principle of justice, as they can correct unfair disparities in the distribution
p.000006: of the benefits and burdens of epidemic response efforts.
p.000006:
p.000006: Solidarity — Solidarity is a social relation in which a group, community, nation
p.000006: or, potentially, global community stands together.7 The principle of solidarity justifies collective action in the
p.000006: face of common threats. It also supports efforts to overcome inequalities that undermine the welfare
p.000006: of minorities and groups that suffer from discrimination.
p.000006:
p.000006:
p.000006: Practical applications
p.000006:
p.000006: The application of ethical principles should be informed by evidence as far as it is
p.000006: available. For example, in determining 9
p.000006: whether a particular action contributes to utility, decision-makers should be guided by any available scientific
p.000006: evidence about the action’s expected benefits and harms.
p.000006: The more intrusive the proposed action, the greater the need for robust evidence that what is being proposed is likely
p.000006: to achieve its desired aim. When specific evidence is not available, decisions should be based
p.000006: on reasoned, substantive arguments and informed by evidence from analogous situations, to the extent possible.
p.000006:
p.000006: In balancing competing principles during infectious disease outbreaks, countries must respect their obligations under
p.000006: international human rights agreements. The Siracusa Principles on the Limitation and Derogation Provisions in the
p.000006: International Covenant on Civil and Political Rights
p.000006: (the “Siracusa Principles”)8 are a widely accepted framework for evaluating
p.000006: the appropriateness of limiting certain fundamental human rights in emergency situations. The Siracusa Principles
p.000006: provide that any restrictions on human rights must be carried out in accordance with the law and in pursuit of a
p.000006: legitimate objective of general interest. In addition, such restrictions must be strictly necessary and there must
p.000006: be no other, less intrusive means available to reach the same objective. Finally, any restrictions must be based on
p.000006: scientific evidence and not imposed in an arbitrary, unreasonable, or discriminatory manner.
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p.000006: For both pragmatic and ethical reasons, maintaining the population’s trust in epidemic response efforts is of
p.000006: fundamental importance. This is possible only if
p.000006: policy-makers and response workers act in a trustworthy manner by applying
p.000006: procedural principles fairly and consistently, being open to review based on new
p.000006: 10 relevant information, and acting with the
p.000006: genuine input of affected communities.
p.000006: In addition, a synchronized approach is indispensable to the success of any
p.000006: response effort. All members of the global community need to act in solidarity, since all countries share a common
p.000006: vulnerability to the threat of infectious disease.
p.000006:
p.000006:
p.000006: How the Guidance was developed
...
p.000050: 2008 (WHO/HSE/EPR/GIP/2008.2, WHO/IER/ETH/2008.1;
p.000050: http://apps.who.int/iris/bitstream/10665/69902/1/WHO_IER_ETH_2008.1_eng.pdf?ua=1, accessed 23 July 2016).
p.000050:
p.000050: 3 Guidance on ethics of tuberculosis prevention, care and control. Geneva: World Health Organization; 2010
p.000050: (WHO/HTM/TB/2010.16, http://apps.who.int/iris/ bitstream/10665/44452/1/9789241500531_eng.pdf?ua=1, accessed 23 July
p.000050: 2016).
p.000050:
p.000050: 4 Ethics of using convalescent whole blood and convalescent plasma during the Ebola epidemic. Geneva: World Health
p.000050: Organization; 2015 (WHO/HIS/KER/GHE/15.1; http://apps.who.int/iris/bitstream/10665/161912/1/WHO_HIS_KER_GHE_15.1_eng.
p.000050: pdf?ua=1&ua=1, accessed 23 July 2016).
p.000050:
p.000050: 5 Ethical considerations for use of unregistered interventions for Ebola viral disease. Geneva: World Health
p.000050: Organization; 2014 (WHO/HIS/KER/GHE/14.1, http://apps.who.
p.000050: int/iris/bitstream/10665/130997/1/WHO_HIS_KER_GHE_14.1_eng.pdf?ua=1, accessed 23 July 2016).
p.000050:
p.000050: 6 Becker L. Reciprocity, justice, and disability. Ethics. 2005;116(1):9–39.
p.000050:
p.000050: 7 Dawson A, Jennings B. The place of solidarity in public health ethics. Public Health Reviews. 2012;34(1):65–79.
p.000050:
p.000050: 8 Siracusa Principles on the Limitation and Derogation Provision in the International Covenant on Civil and
p.000050: Political Rights. Geneva: American Association for the International Commission of Jurists; 1985
p.000050: (http://icj.wpengine.netdna-cdn.com/wp-content/uploads/1984/07/Siracusa-
p.000050: principles-ICCPR-legal-submission-1985-eng.pdf, accessed 23 July 2016).
p.000050:
p.000050: 9 United Nations Economic and Social Council. General Comment No. 14: The right to Highest Attainable Standard of
p.000050: Health (Art. 12 of the International Covenant on Economic, Social and Cultural Rights). New York: United Nations
p.000050: Committee on Economic, Social and Cultural Rights (E/C. 12/2000/4 – 2000; www1.umn.edu/
p.000050: humanrts/gencomm/escgencom14.htm, accessed 23 July 2016).
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050: 10 Parpia AS, Ndeffo-Mbah ML, Wenzel NS, Galvani AP. Effects of response to the 2014–2015 Ebola outbreak on deaths
p.000050: from malaria, HIV/AIDS, and tuberculosis, West Africa. Emerg Infect Dis. 2016;22(3)
p.000050: (http://dx.doi.org/10.3201/eid2203.150977, accessed 23 July 2016).
p.000050:
p.000050: 11 Declaration of Helsinki – Ethical principles for medical research involving human subjects, revised October 2013
p.000050: Ferney-Voltaire: World Medical Association; 2013 (www.wma.net/ en/30publications/10policies/b3/index.html, accessed 23
p.000050: July 2016).
p.000050:
p.000050: 12 International ethical guidelines for biomedical research involving human subjects.
p.000050: Geneva: Council for International Organizations of Medical Sciences; 2002 (www.cioms. 51
p.000050: ch/publications/guidelines/guidelines_nov_2002_blurb.htm, accessed 23 July 2016).
...
Political / vulnerable
Searching for indicator vulnerable:
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p.000006: Invariably,
p.000006: the countries most affected by outbreaks have limited resources, underdeveloped legal and regulatory structures, and
p.000006: health systems that lack the resilience to deal with crisis situations. Countries that experience natural disasters and
p.000006: armed conflicts are particularly at risk, as these circumstances simultaneously increase the risk of infectious disease
p.000006: outbreaks while
p.000006: decreasing needed resources and access to health care. Moreover, infectious disease outbreaks can generate or
p.000006: exacerbate social crises that can weaken already fragile health systems. Within such contexts, it
p.000006: is not possible to satisfy all urgent needs simultaneously, forcing decision-makers to weigh and prioritize potentially
p.000006: competing ethical values. Time pressures and resource constraints may force action without
p.000006: the thorough deliberation, inclusiveness and transparency that a robust ethical decision-making process demands.
p.000006:
p.000006: This guidance document on ethical issues that arise specifically in the context of infectious disease outbreaks aims to
p.000006: complement existing guidance on ethics in public health. It should therefore be read in conjunction with more general
p.000006: guidance on issues such as public health surveillance,
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006: research with human participants, and addressing the needs of vulnerable populations.
p.000006:
p.000006: Setting up decision-making systems and procedures in advance is the best way to ensure that ethically appropriate
p.000006: decisions will be made if an outbreak
p.000006: 8 occurs. Countries, health-care institutions,
p.000006: international organizations and others involved in epidemic response efforts are encouraged to develop practical
p.000006: strategies and tools to apply the principles in this guidance document to their specific settings, taking into account
p.000006: local social, cultural, and political contexts. WHO is committed to providing countries with technical assistance in
p.000006: support of these efforts.
p.000006:
p.000006:
p.000006: Relevant ethical principles
p.000006:
p.000006: Ethics involves judgements about “the way we ought to live our lives, including our actions, intentions, and our
p.000006: habitual behaviour.”3 The process of ethical analysis involves identifying relevant principles, applying them to a
p.000006: particular situation, and making judgements about how to weigh competing principles when it is not possible to satisfy
p.000006: them all. This guidance document draws on a variety of ethical principles, which are grouped below into seven general
p.000006: categories. These categories are presented merely for the convenience
p.000006: of the reader; other ways of grouping them are equally legitimate.
p.000006:
p.000006: Justice — As used in this document, justice, or fairness, encompasses two different concepts. The first is equity,
p.000006: which refers to fairness in the distribution of resources, opportunities and outcomes. Key elements of equity include
p.000006: treating like
p.000006: cases alike, avoiding discrimination and exploitation, and being sensitive to persons who are especially vulnerable to
p.000006: harm or injustice. The second aspect of justice is procedural justice, which refers to a fair process for making
p.000006: important decisions.
p.000006: Elements of procedural justice include due process (providing notice to interested persons and an opportunity to be
p.000006: heard), transparency (providing clear and accurate information about the basis for decisions and the process by which
p.000006: they are made), inclusiveness/community engagement (ensuring all relevant stakeholders are able to participate in
p.000006: decisions), accountability (allocating and enforcing responsibility
p.000006: for decisions), and oversight (ensuring appropriate mechanisms for monitoring and review).
p.000006:
p.000006: Beneficence — Beneficence refers to acts that are done for the benefit of others, such as efforts to relieve
p.000006: individuals’ pain and suffering. In the public health context, the principle of beneficence underlies society’s
p.000006: obligation to meet the basic needs of individuals and communities, particularly humanitarian needs such as nourishment,
p.000006: shelter, good health, and security.
p.000006:
p.000006: Utility — The principle of utility states that actions are right insofar as they promote the well-being of individuals
p.000006: or communities. Efforts to maximize utility require consideration of proportionality (balancing the potential benefits
p.000006: of an activity against any risks of harm) and
p.000006: efficiency (achieving the greatest benefits at the lowest possible cost).
p.000006:
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p.000015: and conveyed to the public.
p.000015:
p.000015: • Accountability — The public should know who is responsible for making
p.000015: and implementing decisions in relation to the outbreak response, and how they can challenge decisions they believe are
p.000015: inappropriate.
p.000015:
p.000015: The media will play an important role in any infectious disease outbreak response effort. It is therefore important to
p.000015: ensure that the media has access to accurate and timely information about the disease and its management. Governments,
p.000015: nongovernmental organizations, and
p.000015: academic institutions should make efforts to support media training in relevant scientific concepts and techniques for
p.000015: communicating risk information without raising unnecessary alarm. Media training is important for public health sector
p.000015: employees who may interact with media covering public health issues.
p.000015: In turn, the media has a responsibility to provide accurate, factual, and balanced reporting. This is an important
p.000015: component of media ethics.
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p.000015: Cholera outbreak in Sierra Leone
p.000015: Source: Fid Thompson
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p.000015: 3. Situations of particular vulnerability
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p.000017: 17
p.000017: Questions addressed:
p.000017:
p.000017: • Why are some individuals and groups considered particularly vulnerable during infectious disease outbreaks?
p.000017: • How can vulnerability affect a person’s ability to access services during infectious disease outbreaks?
p.000017: • How can vulnerability affect a person’s willingness and ability to share and receive information during an
p.000017: infectious disease outbreak?
p.000017: • Why are stigmatization and discrimination particular risks during infectious disease outbreaks?
p.000017: • In what ways might vulnerable persons suffer disproportionate burdens from infectious disease response efforts,
p.000017: or have a greater need for resources?
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p.000017: Some individuals and groups face heightened susceptibility to harm or injustice during infectious disease outbreaks.
p.000017: Policy-makers and epidemic responders should develop plans to address the needs of such individuals and groups in
p.000017: advance of an outbreak and,
p.000017: if an outbreak occurs, make reasonable efforts to ensure that these needs are actually met. Doing this requires ongoing
p.000017: attention to community engagement and the development of active social networks between community representatives and
p.000017: government actors.
p.000017:
p.000017: Efforts to address the ways in which individuals and groups may be vulnerable should take into account the following:
p.000017: • Difficulty accessing services and resources — Many of the
p.000017: characteristics that contribute to social vulnerability can make it difficult
p.000017: for individuals to access necessary services. For example, persons with physical disabilities may have mobility
p.000017: impairments that make travelling even short distances difficult or impossible.
p.000017: Other socially vulnerable persons may lack access to safe and reliable transportation or have caregiving
p.000017: responsibilities that make it difficult for them to leave their homes. In addition, vulnerable persons may lack access
p.000017: to necessary resources such as clean water or bednets to reduce the risk of contracting a mosquito-borne disease.
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p.000017: • Need for effective alternative communication strategies — Some types of vulnerability can impede
p.000017: an individual’s ability to transmit or receive information. Communication barriers can stem from a wide range of
p.000017: factors including, but not limited to, illiteracy, unfamiliarity with the
p.000017: 18 local or official language(s), vision or
p.000017: hearing impairments, social isolation, or lack of access to Internet and other communication services. These barriers
p.000017: make it difficult for individuals to receive necessary public health messages
p.000017: or to participate fully in community engagement activities. To overcome these barriers, messages should be delivered in
p.000017: multiple formats (e.g. radio, text messages, billboards, cartoons) as well as direct oral communication with key
p.000017: stakeholders. Health authorities should not assume that the public will search for information; instead, they should
p.000017: proactively reach out to the concerned population wherever they are.
p.000017:
p.000017: • Impact of stigmatization and discrimination — Members of socially disadvantaged groups often face considerable
p.000017: stigma and discrimination, which can be exacerbated in public health emergencies characterized by fear and distrust.
p.000017: Those responsible for infectious disease outbreak response should ensure that all individuals are treated fairly and
p.000017: equitably regardless of their social status or perceived “worth” to society. They should also take measures to prevent
p.000017: stigmatization and social violence.
p.000017:
p.000017: • Disproportionate burdens of outbreak response measures — Even when public health measures
p.000017: are designed with the best of intentions, they can inadvertently place a disproportionate burden on particular
p.000017: populations. For example, quarantine orders that require individuals to stay
p.000017: in their homes can have devastating consequences for persons who need to leave their homes to obtain basic
p.000017: necessities such as clean water or food. Similarly, social distancing measures such as school closures can place
p.000017: disproportionate burdens on children who depend on going to school to access regular meals, as well as on working
p.000017: parents who may have no one available to provide child care.
p.000017:
p.000017: • Greater need for resources — Accommodating the needs of individuals whose situation makes them particularly
p.000017: vulnerable sometimes requires the use of additional resources.
p.000017: In some cases, additional resources are relatively minimal, such as when an interpreter is hired to make
p.000017: a community engagement forum accessible to members of a linguistic minority group. In other cases, they may be more
p.000017: substantial, such as when mobile health teams are assembled to dispatch vaccines and treatments to hard-to-reach rural
p.000017: areas. It is legitimate to take costs into consideration in determining whether a particular accommodation is
p.000017: warranted; indeed, the goal of maximizing utility demands that such assessments be made.
p.000017: However, despite the importance of conserving limited resources, the ethical principle of equity may sometimes justify
p.000017: providing greater resources to persons who have greater needs.
p.000017:
p.000017: • Heightened risk of violence — Infectious disease outbreaks can
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p.000017: exacerbate social unrest, increase criminality, and induce violent behaviour, especially against vulnerable groups such
p.000017: as minority populations
p.000017: or migrants. In addition, public health measures such as home isolation, quarantine, or closure of schools and work
p.000017: facilities can induce violence, particularly against women and children. Officials involved in outbreak planning and
p.000017: response efforts should be prepared for the possibility that
p.000017: specific populations may be targeted as being the cause of the outbreak or provoking transmission; strategies should be
p.000017: proactively designed to
p.000017: protect members of such groups from a heightened risk of violence.
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p.000019: A doctor inspects patients in an MSF supported hospital in Aweil,
p.000019: Northern Bar El Ghazal in South Sudan, 2011
p.000019: Source: Siegfried Modola/IRIN
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p.000019: 4. Allocating scarce resources
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p.000020: 20
p.000020: Questions addressed:
p.000020:
...
p.000020: of health-care workers. As
p.000020: a result, deaths from tuberculosis, human immunodeficiency virus (HIV), and malaria increased dramatically during this
p.000020: period.10
p.000020:
p.000020: Governments, health-care facilities, and others involved in response efforts should
p.000020:
p.000020:
p.000020:
p.000020:
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p.000020: prepare for such situations by developing guidelines on the allocation of scarce resources in outbreak situations. Such
p.000020: guidelines should be developed through an open and transparent process involving broad stakeholder input and, to the
p.000020: extent
p.000020: possible, should be incorporated into formal written documents that establish clear priorities and procedures. Those
p.000020: involved
p.000020: in developing these guidelines should be guided by the following considerations:
p.000020:
p.000020: • Balancing considerations of utility and equity — Resource allocation decisions should be guided by the ethical
p.000020: principles of utility and equity. The principle of utility requires allocating resources to maximize benefits and
p.000020: minimize burdens, while the principle of equity requires attention to the fair distribution of benefits
p.000020: and burdens. In some cases, an equal distribution of benefits and burdens may be considered fair, but in others, it may
p.000020: be fairer to give preference to groups that are worse off, such as the poor, the sick, or the vulnerable. It is not
p.000020: always be possible to achieve fully both utility and equity. For example, establishing treatment centres in large urban
p.000020: settings promotes the value of utility because it makes it possible to treat a large number of people with relatively
p.000020: few resources. However, such
p.000020: an approach may be in tension with the principle of equity if it means that fewer resources will be directed to
p.000020: isolated communities in remote rural areas.
p.000020: There is no single correct way to resolve potential tensions between utility
p.000020: and equity; what is important is that decisions are made through an inclusive and transparent process that takes into
p.000020: account local circumstances.
p.000020: • Defining utility on the basis of health-related considerations —
p.000020: In order to apply the ethical principle of utility, it is first necessary to identify the type of outcomes that will be
p.000020: counted as improvements to welfare. In general, the focus should be on the health-related benefits of allocation
p.000020: mechanisms, whether defined in terms 21
p.000020: of the total number of lives saved, the total number of life years saved, or the total number of quality-adjusted life
p.000020: years saved. For this reason,
p.000020: while it might be ethical to prioritize persons who are essential to manage an outbreak, it is not appropriate to
p.000020: prioritize persons based on social value considerations unrelated to carrying out critical services necessary for
p.000020: society.
p.000020:
p.000020: • Paying attention to the needs of vulnerable populations — In applying the ethical principle of equity, special
p.000020: attention should be given to individuals and groups that are the most vulnerable to discrimination, stigmatization, or
p.000020: isolation, as discussed in Guideline 3.
p.000020: Particular consideration must be given to individuals who are confined in institutional settings, where they are highly
p.000020: dependent on others and
p.000020: potentially exposed to much higher risks of infection than persons living in the community.
p.000020:
p.000020: • Fulfilling reciprocity-based obligations to those who contribute to infectious disease outbreak response efforts
p.000020: — The ethical principle of reciprocity implies that society should support persons who face a disproportionate burden
p.000020: or risk in protecting the public good. This principle justifies giving priority access to scarce resources to persons
p.000020: who
p.000020:
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p.000020: assume risks to their own health or life to contribute to outbreak response efforts.
p.000020:
p.000020: • Providing supportive and palliative care to persons unable to access life- saving resources — Even when it is not
p.000020: possible to provide life-saving medical
p.000020: 22 resources to all who could benefit from
p.000020: them, efforts should be made to ensure that no patients are abandoned. One way to do this is to ensure that adequate
p.000020: resources are directed to providing supportive and palliative care.
p.000020:
p.000020: The application of allocation principles should take into account the following considerations:
p.000020:
p.000020: • Consistent application — Allocation principles should be applied in
...
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000023: 23
p.000023: Questions addressed:
p.000023:
p.000023: • What role does surveillance play in infectious disease outbreak response efforts?
p.000023: • Should surveillance activities be subject to ethical review?
p.000023: • What obligations do entities conducting surveillance activities have to protect the confidentiality of
p.000023: information collected?
p.000023: • Are there any circumstances under which individuals should be asked for consent to, or given the opportunity to
p.000023: opt out of, surveillance activities?
p.000023: • What obligations do those conducting surveillance activities have to disclose information they collect to the
p.000023: affected individuals and communities?
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023: Systematic observation and data collection are essential components of emergency response measures, both to guide the
p.000023: management of the current outbreak and to help prevent and respond to outbreaks in the future. Even if these activities
p.000023: are not characterized as research for regulatory purposes, an ethical analysis should
p.000023: be undertaken to ensure that personal information is protected from physical, legal, psychological, and other harm.
p.000023: Countries should consider organizing systems for ethical oversight of public health activities, commensurate with the
p.000023: activity objectives, methods, risks and benefits, as well as the extent to which the activity involves individuals or
p.000023: groups whose situation may make them vulnerable.
p.000023: Regardless of whether such systems are adopted, ethical analysis of public
p.000023: health activities should be consistent with accepted norms of public health ethics and conducted by individuals or
p.000023: entities that can be held accountable for their decisions.
p.000023:
p.000023: Ensuring high-quality, ethically appropriate surveillance is complicated by at least
p.000023: two factors. First, the law surrounding surveillance across jurisdictions may be unnecessarily complex or inconsistent.
p.000023: Second, surveillance activities will occur across jurisdictions with varying levels of resources, thus placing strains
p.000023: on the quality and reliability of the data. These
p.000023: issues are likely to be exacerbated during an infectious disease outbreak, creating an urgent need for careful planning
p.000023: and international collaboration. Specific issues that should be addressed include the following:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023: • Protecting the confidentiality of personal information — The
p.000023: unauthorized disclosure of personal information collected during an infectious disease outbreak (including name,
p.000023: address, diagnosis, family history, etc.) can expose individuals to significant risk. Countries should
p.000023: 24 ensure that adequate protection exists
p.000023: against these risks, including laws that safeguard the confidentiality of information generated through
p.000023: surveillance activities, and that strictly limit the circumstances in which such information may be used or disclosed
...
p.000025: should be backed up with sufficient resources to ensure that those subject to the restrictions do not experience undue
p.000025: burdens. For example, individuals whose mobility is restricted (whether through confinement at home or
p.000025: in institutional settings) should be ensured access to food, drinking water, sanitary facilities, shelter, clothing,
p.000025: and medical care. It is also important to ensure that individuals have adequate physical space, opportunities to engage
p.000025: in activities, and the means
p.000025: to communicate with their loved ones and the outside world. Fulfilling these needs is essential to respect individual
p.000025: dignity and address the significant psychosocial burden of confinement on individuals and their loved ones. Mechanisms
p.000025: should be put in place to minimize the risk of violence (including sexual assault) and local disease
p.000025: transmission, especially when individuals are confined in institutional settings
p.000025: or when communities are under mass quarantine. At a minimum, persons who
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: are quarantined because they have been exposed to the pathogen responsible for the outbreak should not be put at
p.000025: heightened risk of infection because of the manner in which they are confined. (Decisions on the circumstances and
p.000025: conditions of confinement should consider the heightened needs of vulnerable populations, as discussed
p.000025: in Guideline 3.)
p.000025:
p.000025: • Addressing financial and social consequences — Even short-term restrictions on freedom of movement can have
p.000025: significant — and possibly devastating —financial and social consequences for individuals, their families, and their
p.000025: communities. Countries should provide assistance to households that suffer financial
p.000025: losses as a result of inability to conduct business, loss of a job, damage to crops, or other consequences of
p.000025: restrictions on freedom of movement. In some cases, this support may need to continue
p.000025: for a period following the end of confinement. In addition, efforts should be made to support the social and
p.000025: professional reintegration of individuals for whom confinement is no longer necessary, including measures to reduce
p.000025: stigmatization and discrimination.
p.000025:
p.000025: • Due process protections — Mechanisms should be in place to allow individuals whose liberty has been restricted to
p.000025: challenge the appropriateness of those restrictions, the way they are enforced, and the conditions under which the
p.000025: restrictions are carried out. If it is not feasible to provide full due process protection before the restrictions are
p.000025: implemented in an emergency scenario, mechanisms for review and appeal should be made
p.000025: available without excessive delay. All persons involved in decisions to restrict individuals’ freedom of movement
p.000025: should be accountable for any abuses of authority.
p.000025:
p.000025: • Equitable application — Restrictions on freedom of movement should be
p.000025: applied in the same manner to all 27
p.000025: persons posing a comparable public health risk. Thus, individuals should not be subject to greater or lesser
p.000025: restrictions for reasons unrelated to the
p.000025: risks they may pose to others, including membership in any disfavoured or favoured social group or class (for example,
p.000025: groups defined by gender, ethnicity, or religion). In addition, policy- makers should seek to ensure that restrictions
p.000025: are not applied in a manner that imposes a disproportionate burden on vulnerable segments of society.
p.000025:
p.000025: • Communication and transparency —
p.000025: Policy-makers and public health officials should engage communities in a dialogue about any restrictions on freedom of
p.000025: movement and solicit community members’ views on how restrictions can be carried out with the least possible burden.
p.000025: They should also provide regular updates on the implementation of such measures,
p.000025: both to the public at large and to those whose movement has been restricted. Communication strategies should be
p.000025: designed to avoid the stigmatization
p.000025: of individuals whose liberty has been restricted and to protect their privacy and confidentiality, particularly in the
p.000025: media.
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: 7. Obligations related to medical interventions for the diagnosis, treatment, and prevention of infectious disease
p.000028: 28
p.000028:
p.000028:
p.000028: Questions addressed:
p.000028:
p.000028: • What quality and safety standards should govern the administration of medical interventions offered during
p.000028: infectious disease outbreaks?
p.000028: • What rights do patients (or their authorized proxy decision-makers) have to receive information about the risks
p.000028: and benefits of, and alternatives to, medical interventions during infectious disease outbreaks?
p.000028: • Under what circumstances, if any, might it be appropriate to override an individual’s refusal of diagnostic,
p.000028: therapeutic, or preventive measures during an infectious disease outbreak?
...
Searching for indicator vulnerability:
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p.000001: approximate border lines for which there may not yet be full agreement.
p.000001: The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or
p.000001: recommended by the World Health Organization in preference to others of a similar nature that are not mentioned. Errors
p.000001: and omissions excepted, the names of proprietary products are distinguished by initial capital letters.
p.000001: All reasonable precautions have been taken by the World Health Organization to verify the information contained in this
p.000001: publication. However, the published material is being
p.000001: distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and
p.000001: use of the material lies with the reader. In no event shall the World Health Organization be liable for damages arising
p.000001: from its use.
p.000001:
p.000001: Printed in Spain
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001: Table of Contents
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001: Foreword ............................................................................................................ 3
p.000001: 1
p.000001: Acknowledgements 4
p.000001: Introduction 7
p.000001: Guidelines 12
p.000001: 1. Obligations of governments and the international community 13
p.000001: 2. Involving the local community
p.000015: 15
p.000015: 3. Situations of particular vulnerability
p.000017: 17
p.000017: 4. Allocating scarce resources
p.000020: 20
p.000020: 5. Public health surveillance
p.000023: 23
p.000023: 6. Restrictions on freedom of movement 25
p.000023: 7. Obligations related to medical interventions for the diagnosis, treatment,
p.000023: and prevention of infectious disease
p.000028: 28
p.000028: 8. Research during infectious disease outbreaks 30
p.000028: 9. Emergency use of unproven interventions outside of research 35
p.000028: 10. Rapid data sharing
p.000038: 38
p.000038: 11. Long-term storage of biological specimens collected during infectious
p.000038: disease outbreaks
p.000039: 39
p.000039: 12. Addressing sex- and gender-based differences 41
p.000039: 13. Frontline response workers’ rights and obligations 43
p.000039: 14. Ethical issues in deploying foreign humanitarian aid workers 47
p.000039: References 50
p.000039: Annex 1. Ethics guidance documents consulted in developing Guidance for managing ethical issues in infectious disease
p.000039: outbreaks 52
p.000039: Annex 2. Participants at meetings to formulate Guidance for managing ethical issues in infectious disease outbreaks
p.000055: 55
p.000055:
p.000055:
p.000055:
p.000055:
...
p.000006: international human rights agreements. The Siracusa Principles on the Limitation and Derogation Provisions in the
p.000006: International Covenant on Civil and Political Rights
p.000006: (the “Siracusa Principles”)8 are a widely accepted framework for evaluating
p.000006: the appropriateness of limiting certain fundamental human rights in emergency situations. The Siracusa Principles
p.000006: provide that any restrictions on human rights must be carried out in accordance with the law and in pursuit of a
p.000006: legitimate objective of general interest. In addition, such restrictions must be strictly necessary and there must
p.000006: be no other, less intrusive means available to reach the same objective. Finally, any restrictions must be based on
p.000006: scientific evidence and not imposed in an arbitrary, unreasonable, or discriminatory manner.
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006: For both pragmatic and ethical reasons, maintaining the population’s trust in epidemic response efforts is of
p.000006: fundamental importance. This is possible only if
p.000006: policy-makers and response workers act in a trustworthy manner by applying
p.000006: procedural principles fairly and consistently, being open to review based on new
p.000006: 10 relevant information, and acting with the
p.000006: genuine input of affected communities.
p.000006: In addition, a synchronized approach is indispensable to the success of any
p.000006: response effort. All members of the global community need to act in solidarity, since all countries share a common
p.000006: vulnerability to the threat of infectious disease.
p.000006:
p.000006:
p.000006: How the Guidance was developed
p.000006: Many individuals have helped shape this guidance document, directly or indirectly, starting with the Ethics Panel that
p.000006: was convened by the Director-General on
p.000006: 11 August 2014, and the ad-hoc ethics working groups that met in Geneva, Switzerland between August and October 2014 to
p.000006: provide guidance on the use of untested interventions during the Ebola outbreak in West Africa. Subsequently,
p.000006: in May 2015, a group of experts and stakeholders met in Dublin, Ireland to review existing ethical statements on
p.000006: infectious disease outbreaks and
p.000006: develop a methodology to create a more comprehensive document. To assist this process, an analysis and synthesis of all
p.000006: existing guidance documents relevant
p.000006: to ethical considerations in infectious disease outbreaks was prepared (Annex 1). Reflecting on lessons learnt from
p.000006: previous outbreaks, particularly the recent experiences with Ebola, participants emphasized the need for
p.000006: guidance that could be tailored to different epidemiological, social, and economic contexts. They also discussed the
p.000006: importance of focusing on broader questions of global health governance, community engagement, knowledge generation,
p.000006: and priority setting. Finally,
p.000006: participants emphasized the urgent need to develop concrete operational tools to help individuals involved in epidemic
p.000006: response efforts to incorporate ethical guidance into practical decision-making. The group met again in November 2015
p.000006: in Prato, Italy
...
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014: Avian Influenza in Indonesia
p.000014: Source: Gary Hampton, WHO
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014: 2. Involving the local community
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000015: 15
p.000015: Questions addressed:
p.000015:
p.000015: • Why is community engagement a critical component of infectious disease outbreak response efforts?
p.000015: • What are the hallmarks of a community-centred approach to infectious disease outbreak response?
p.000015: • What should decision-makers do with input they receive during community engagement activities?
p.000015: • What is the media’s role in infectious disease outbreak response efforts?
p.000015:
p.000015:
p.000015:
p.000015:
p.000015: All aspects of infectious disease outbreak response efforts should be supported
p.000015: by early and ongoing engagement with the affected communities. In addition to being ethically important in its own
p.000015: right, community engagement is essential to establishing and maintaining trust and preserving social order.
p.000015:
p.000015: Involving communities fully in infectious disease outbreak planning and response efforts requires attention to the
p.000015: following issues:
p.000015:
p.000015: • Inclusiveness — All persons who could potentially be affected should have opportunities to make their voices
p.000015: heard in all stages of infectious disease outbreak planning and response, either directly or through legitimate
p.000015: representatives. Adequate communication platforms and tools should be put in place to facilitate
p.000015:
p.000015: public communication with health authorities.
p.000015:
p.000015: • Situations of particular vulnerability — As discussed further in Guideline 3, special attention should be given
p.000015: to ensuring that persons who face heightened susceptibility to harm or injustice during infectious disease outbreaks
p.000015: are able to contribute to decisions about infectious disease outbreak planning and response. Public health officials
p.000015: should recognize that such persons might be distrustful of government and other institutions, and make special efforts
p.000015: to include them in community engagement plans.
p.000015:
p.000015: • Openness to diverse perspectives — Communication efforts should be designed to facilitate a genuine
p.000015: two-way dialogue, rather than as merely a means to announce decisions
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015: that have already been made. Decision-makers should be prepared to recognize and debate alternative approaches and
p.000015: revise their decisions based on information they receive. Reaching out to the community early, and allowing for
p.000015: consideration of
p.000015: the interests of all people who will
p.000015: 16 potentially be affected, can play an important role in building trust and empowering communities to
p.000015: be involved in a genuine dialogue.
p.000015:
p.000015: • Transparency — The ethical principle of transparency requires that decision-makers publicly explain the basis for
p.000015: decisions in language that is
p.000015: linguistically and culturally appropriate.
p.000015: When decisions must be made in the face of uncertain information, the uncertainties should be explicitly acknowledged
p.000015: and conveyed to the public.
p.000015:
p.000015: • Accountability — The public should know who is responsible for making
p.000015: and implementing decisions in relation to the outbreak response, and how they can challenge decisions they believe are
p.000015: inappropriate.
p.000015:
p.000015: The media will play an important role in any infectious disease outbreak response effort. It is therefore important to
p.000015: ensure that the media has access to accurate and timely information about the disease and its management. Governments,
p.000015: nongovernmental organizations, and
p.000015: academic institutions should make efforts to support media training in relevant scientific concepts and techniques for
p.000015: communicating risk information without raising unnecessary alarm. Media training is important for public health sector
p.000015: employees who may interact with media covering public health issues.
p.000015: In turn, the media has a responsibility to provide accurate, factual, and balanced reporting. This is an important
p.000015: component of media ethics.
p.000015:
p.000015:
p.000015: Cholera outbreak in Sierra Leone
p.000015: Source: Fid Thompson
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015: 3. Situations of particular vulnerability
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000017: 17
p.000017: Questions addressed:
p.000017:
p.000017: • Why are some individuals and groups considered particularly vulnerable during infectious disease outbreaks?
p.000017: • How can vulnerability affect a person’s ability to access services during infectious disease outbreaks?
p.000017: • How can vulnerability affect a person’s willingness and ability to share and receive information during an
p.000017: infectious disease outbreak?
p.000017: • Why are stigmatization and discrimination particular risks during infectious disease outbreaks?
p.000017: • In what ways might vulnerable persons suffer disproportionate burdens from infectious disease response efforts,
p.000017: or have a greater need for resources?
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: Some individuals and groups face heightened susceptibility to harm or injustice during infectious disease outbreaks.
p.000017: Policy-makers and epidemic responders should develop plans to address the needs of such individuals and groups in
p.000017: advance of an outbreak and,
p.000017: if an outbreak occurs, make reasonable efforts to ensure that these needs are actually met. Doing this requires ongoing
p.000017: attention to community engagement and the development of active social networks between community representatives and
p.000017: government actors.
p.000017:
p.000017: Efforts to address the ways in which individuals and groups may be vulnerable should take into account the following:
p.000017: • Difficulty accessing services and resources — Many of the
p.000017: characteristics that contribute to social vulnerability can make it difficult
p.000017: for individuals to access necessary services. For example, persons with physical disabilities may have mobility
p.000017: impairments that make travelling even short distances difficult or impossible.
p.000017: Other socially vulnerable persons may lack access to safe and reliable transportation or have caregiving
p.000017: responsibilities that make it difficult for them to leave their homes. In addition, vulnerable persons may lack access
p.000017: to necessary resources such as clean water or bednets to reduce the risk of contracting a mosquito-borne disease.
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: • Need for effective alternative communication strategies — Some types of vulnerability can impede
p.000017: an individual’s ability to transmit or receive information. Communication barriers can stem from a wide range of
p.000017: factors including, but not limited to, illiteracy, unfamiliarity with the
p.000017: 18 local or official language(s), vision or
p.000017: hearing impairments, social isolation, or lack of access to Internet and other communication services. These barriers
p.000017: make it difficult for individuals to receive necessary public health messages
p.000017: or to participate fully in community engagement activities. To overcome these barriers, messages should be delivered in
p.000017: multiple formats (e.g. radio, text messages, billboards, cartoons) as well as direct oral communication with key
p.000017: stakeholders. Health authorities should not assume that the public will search for information; instead, they should
p.000017: proactively reach out to the concerned population wherever they are.
p.000017:
p.000017: • Impact of stigmatization and discrimination — Members of socially disadvantaged groups often face considerable
p.000017: stigma and discrimination, which can be exacerbated in public health emergencies characterized by fear and distrust.
p.000017: Those responsible for infectious disease outbreak response should ensure that all individuals are treated fairly and
p.000017: equitably regardless of their social status or perceived “worth” to society. They should also take measures to prevent
...
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: disease creates special risks for pregnant women or their fetus, both men and women should be informed of these risks
p.000041: and have access to safe methods to minimize them, along with reproductive counselling services.
p.000041:
p.000041: • Sex- and gender-inclusive research
p.000041: 42 strategies — Researchers should make efforts to ensure that studies do not disproportionately
p.000041: favour a particular sex or gender, and that women who are or might become pregnant are not inappropriately excluded
p.000041: from research participation. During an outbreak, research on experimental treatments and preventive measures should
p.000041: seek to identify any sex- or gender-related differences in outcomes.
p.000041:
p.000041: • Attention to social and cultural practices — Gender-related roles and practices can affect all aspects of
p.000041: infectious disease outbreaks, including
p.000041: individuals’ risk of becoming infected, the consequences of infection, their use of health services and other
p.000041: health-seeking behaviours, and their vulnerability to interpersonal violence.
p.000041: Policy-makers and outbreak responders should identify and respond to these factors, drawing when possible
p.000041: on relevant anthropological and sociological research.
p.000041:
p.000041: • Sex- and gender-sensitive communication strategies —
p.000041: Entities responsible for developing and implementing communication strategies should be sensitive to sex- and gender-
p.000041: based differences in how individuals have access to and respond to health- related information. Separate messages and
p.000041: communication strategies may be needed to provide relevant information to particular subgroups, such as pregnant women
p.000041: or nursing mothers.
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: Influenza in India
p.000041: Source: Tom Pietrasik, WHO
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: 13. Frontline response workers’ rights and obligations
p.000041:
p.000041:
p.000041:
p.000043: 43
p.000043: Questions addressed:
p.000043:
...
p.000043: maximum extent compatible with legitimate public health interests.
p.000043:
p.000043: • Provide accurate information to the public — During an infectious disease outbreak, public health officials have
p.000043: the primary responsibility to communicate information about the outbreak pathogen, including how
p.000043: it is transmitted, how infection can be prevented, and what treatments or preventive measures may be effective. Those
p.000043: responsible for designing communication strategies should anticipate and respond to misinformation, exaggeration, and
p.000043: mistrust, and should seek (without
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: withholding key information) to minimize the risk that information about risk factors will lead to stigmatization and
p.000043: discrimination. If persons working in the health sector are asked medical questions about the outbreak by patients or
p.000043: the general public, they should not spread
p.000043: 46 unsubstantiated rumours or suspicion
p.000043: and ensure that information they provide comes from reliable sources.
p.000043:
p.000043: • Avoiding exploitation — In the context of a rapidly spreading life- threatening illness with no proven
p.000043: treatment, desperate individuals may be willing to try any intervention offered, regardless of the expected risks or
p.000043: benefits. Health-care workers have a duty not to exploit individuals’ vulnerability by offering treatments or
p.000043: preventive measures for which
p.000043: there is no reasonable basis to believe that the potential benefits outweigh the uncertainties and risks. This duty
p.000043: does not preclude the appropriate use of unproven interventions on an
p.000043: experimental basis, consistent with the guidelines set forth in Guideline 9.
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:
p.000043:
p.000043:
p.000043:
p.000043: Earthquake Haiti 2010
p.000043: Source: Victor Ariscain, PAHO/WHO
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: 14. Ethical issues in deploying foreign humanitarian aid workers
p.000043:
p.000043:
p.000043:
p.000047: 47
p.000047: Questions addressed:
p.000047:
p.000047: • What ethical issues arise in assigning foreign workers for deployment during infectious disease outbreaks?
p.000047: • What obligations do sponsoring organizations have to prepare foreign aid workers adequately for their missions?
p.000047: • What obligations do sponsoring organizations have regarding the conditions of deployment?
p.000047: • What obligations do sponsoring organizations have to coordinate with local officials?
p.000047: • What obligations do foreign aid workers have before, during, and after deployment?
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047: Foreign governments and humanitarian aid organizations that deploy workers in infectious disease outbreaks have ethical
p.000047: obligations to both the workers themselves and the affected communities. These obligations include the following:
p.000047:
...
Health / Cognitive Impairment
Searching for indicator cognitive:
(return to top)
p.000030: Despite such efforts, some prospective participants may still not fully appreciate the difference between research and
p.000030: ordinary medical care, and this should not in itself preclude their enrolment.
p.000030:
p.000030: • Addressing other barriers to informed consent — In addition to the impact of fear and desperation,
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030: other factors can challenge researchers’ ability to obtain informed consent to research; these range from cultural and
p.000030: linguistic differences between foreign researchers and local participants, to the fact that prospective participants in
p.000030: quarantine or isolation may be cut off from their families and other support
p.000030: systems and feel powerless to decline an invitation to participate in research. To the extent possible, consent
p.000030: processes compatible with international research ethics guidelines should be developed
p.000030: in consultation with local communities and implemented by locally recruited personnel. In addition, researchers should
p.000030: be well informed about the medical, psychological and social support systems available locally so that they can guide
p.000030: participants in need towards these services. In some situations, it may be necessary to develop rapid mechanisms for
p.000030: appointing proxy decision-makers, such as during outbreaks of diseases that affect cognitive abilities, or when
p.000030: an outbreak leaves a large number of children as orphans.
p.000030:
p.000030: • Gaining and maintaining trust — Failure to build and maintain community trust during the process of research
p.000030: design and implementation, or when disclosing preliminary results, will not only impede study recruitment and
p.000030: completion but may also undermine
p.000030: the uptake of any interventions proven to be efficacious. Engaging with affected communities before, during, and after
p.000030: a study is essential to build and maintain trust. In environments in which the public’s trust in government is fragile,
p.000030: researchers should remain as independent as possible from official public health activities. If government workers are
p.000030: themselves involved in
p.000030: conducting research, they should inform participants of this fact. Individuals who observe unethical practices carried
p.000030: out in the name of public health or emergency response efforts should promptly report them to ethics committees or
p.000030: other independent bodies.
p.000030: • Selecting an appropriate research 33
p.000030: methodology — Exposing research participants to risk is ethically unacceptable if the study is not designed in a manner
p.000030: capable of providing valid results. It is therefore imperative that all research be designed and conducted in a
p.000030: methodologically rigorous manner. In clinical trials,
p.000030: the appropriateness of features such as randomization, placebo controls, blinding or masking should be determined on a
...
Searching for indicator impaired:
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p.000035:
p.000035: • Collection and sharing of meaningful data — Physicians overseeing MEURI have the same moral
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: obligation to collect all scientifically relevant data on the safety and efficacy of the intervention as researchers
p.000035: overseeing a clinical trial. Knowledge generated through MEURI should be aggregated across patients if possible and
p.000035: shared transparently, completely and rapidly with the MEURI scientific advisory committee, public health authorities,
p.000035: physicians and researchers in the country, and the international medical and scientific community.
p.000035: Information should be described accurately, without overstating benefits or understating uncertainties or risks.
p.000035:
p.000035: • Importance of informed consent — Individuals who are offered MEURI should be made aware that the intervention
p.000035: might not benefit
p.000035: them and might even harm them. The process of obtaining informed consent to MEURI should be carried out in a
p.000035: culturally and linguistically sensitive manner, with an emphasis on the content and understandability of the
p.000035: information conveyed and the voluntariness of the patient’s decision.
p.000035: The ultimate choice of whether to receive the unproven intervention must rest with the patient, if the patient is
p.000035: in a condition to make the choice. If the patient is unconscious, cognitively impaired, or too sick to understand the
p.000035: information, proxy consent should be obtained from a family member or other authorized decision-maker.
p.000035:
p.000035: • Need for community engagement —
p.000035: MEURI must be sensitive to local norms and practices. One way to try to ensure such sensitivity is to use rapid
p.000035: “community engagement
p.000035: teams” to promote dialogue about the potential benefits and risks of receiving
p.000035: interventions that have not yet been tested in clinical trials.
p.000035:
p.000035: • Fair distribution in the face of scarcity — Compounds qualifying for MEURI may not be available in large
p.000035: quantities. In this situation, choices will have to be made about who receives
p.000035: each intervention. Countries should 37
p.000035: establish mechanisms for making these allocation decisions, taking into account the assessment of the MEURI Scientific
p.000035: Advisory Committee and the principles discussed in Guideline 4.
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: 10. Rapid data sharing
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000038: 38
p.000038: Questions addressed:
p.000038:
p.000038: • Why is rapid data sharing essential during an infectious disease outbreak?
p.000038: • What are the key ethical issues related to rapid data sharing?
p.000038:
p.000038:
p.000038:
p.000038:
p.000038:
p.000038: The collection and sharing of data are essential parts of ordinary public health practice. During an infectious disease
...
Health / Drug Usage
Searching for indicator drug:
(return to top)
p.000038: regarding data sharing to ensure that they adequately protect the confidentiality of personal information and address
p.000038: other relevant ethical questions like managing incidental findings, and dealing with disputes over the ownership or
p.000038: control of information.
p.000038:
p.000038:
p.000038:
p.000038:
p.000038:
p.000038:
p.000038:
p.000038:
p.000038: 11. Long-term storage of biological specimens collected during infectious disease outbreaks
p.000038:
p.000038:
p.000039: 39
p.000039: Questions addressed:
p.000039:
p.000039: • What are the benefits and risks associated with the long-term storage of biological specimens collected during
p.000039: infectious disease outbreaks?
p.000039: • What obligations do entities involved in the long-term storage of biological specimens collected during
p.000039: infectious disease outbreaks have to consult with the community?
p.000039: • Are there any circumstances under which individuals should be asked for consent to, or given the opportunity to
p.000039: opt out of, the long-term storage of biological specimens collected during an infectious disease outbreak?
p.000039: • What considerations should be taken into account in transferring biospecimens outside the institutions that
p.000039: collected them, whether domestically or internationally?
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039: Biological specimens are often collected during an infectious disease outbreak in the context of diagnosis (e.g. to
p.000039: determine who has been infected with or exposed to a novel pathogen), surveillance (e.g. to identify the incidence of
p.000039: drug-resistant bacteria), or research (e.g. during clinical trials of new diagnostics, vaccines or interventions). Such
p.000039: samples are sent to laboratories on site or other laboratories, either domestically or internationally, for analysis.
p.000039:
p.000039: Biospecimens collected during the management of an infectious disease outbreak offer researchers important
p.000039: opportunities to understand the outbreak pathogen better and to develop diagnostic, therapeutic, and preventive
p.000039: measures that
p.000039:
p.000039: may mitigate the harm of similar outbreaks in the future. At the same time, long-term storage of biospecimens involves
p.000039: potential risks to individuals and communities.
p.000039: Risks to individuals primarily relate to the unwanted disclosure of personal information. This can be minimized by
p.000039: protecting the confidentiality of individuals’ identities, but confidentiality may be difficult to protect when only a
p.000039: small number of people are being tested. Moreover, even when individual confidentiality can be adequately protected,
p.000039: some individuals or communities might still be uncomfortable making their biospecimens available for future use,
p.000039: especially if such use is not subject to community control. Particular concerns can arise when specimens are
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039: transferred abroad without the originating country’s prior agreement. Addressing these concerns requires time-consuming
p.000039: but necessary relationship-building, consultation, and education, as well as the establishment of policies, practices,
p.000039: and institutions capable of commanding public confidence and trust.
...
p.000054:
p.000054: Stand on guard for thee: Ethical considerations in preparedness planning for pandemic influenza. Toronto: University of
p.000054: Toronto Joint Centre for Bioethics; 2005 (www.jcb. utoronto.ca/people/documents/upshur_stand_guard.pdf).
p.000054:
p.000054: Swiss Federal Office of Public Health. Swiss Influenza Pandemic Plan. Bern; 2013
p.000054: (www.bag.admin.ch/influenza/01120/01132/10097/10104/index.html?lang=en&download=
p.000054: NHzLpZeg7t,lnp6I0NTU042l2Z6ln1ad1IZn4Z2qZpnO2Yuq2Z6gpJCGenx6gWym162epYb g2c_JjKbNoKSn6A--).
p.000054:
p.000054: Venkat A, Wolf L, Geiderman JM, Asher SL, Marco CA, McGreevy J et al. Ethical issues in the response to Ebola virus
p.000054: disease in US emergency departments: a position paper of the American College of Emergency Physicians, the Emergency
p.000054: Nurses Association and the Society for Academic Emergency Medicine. J Emerg Nurs. 2015; Mar;41(2):e5-e16. doi:
p.000054: 10.1016/j.jen.2015.01.012 (www.ncbi.nlm.nih.gov/pubmed/25770003).
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054: Annex 2. Participants at meetings to formulate Guidance for managing ethical issues in infectious disease outbreaks
p.000054:
p.000054:
p.000054:
p.000054: Panel discussion: Ethical considerations for use of unregistered interventions
p.000054: for Ebola viral disease, World Health Organization, Geneva, 11 August 2014 55
p.000054:
p.000054: Advisors
p.000054: Dr Juan Pablo Beca, Professor, Bioethics Center, Universidad del Desarrollo, Chile
p.000054: Dr Helen Byomire Ndagije, Head, Drug Information Department, Ugandan National Drug Authority, Uganda
p.000054: Dr Philippe Calain (Chair), Senior Researcher, Unit of Research on Humanitarian Stakes and Practices, Médecins Sans
p.000054: Frontières, Switzerland
p.000054: Dr Marion Danis, Head, Ethics and Health Policy and Chief, Bioethics Consultation Service, National Institutes of
p.000054: Health, United States of America
p.000054: Professor Jeremy Farrar, Director, Wellcome Trust, United Kingdom Professor Ryuichi Ida, Chair, National Bioethics
p.000054: Advisory Committee, Japan
p.000054: Professor Tariq Madani, infectious diseases physician and clinical academic researcher, Saudi Arabia
p.000054: Professor Michael Selgelid, Director, Centre for Human Bioethics, Monash University, Australia
p.000054: Professor Peter Smith, Professor of Tropical Epidemiology, London School of Tropical Medicine and Hygiene, United
p.000054: Kingdom
p.000054: Ms Jeanine Thomas, Patient Safety Champion, United States of America
p.000054: Professor Aisssatou Touré, Head, Immunology Department, Institut Pasteurde Dakar,,Senegal Professor Ross Upshur, Chair
p.000054: in Primary Care Research; Professor, Department of Family and Community Medicine and Dalla Lana School of Public
p.000054: Health, University of Toronto; Canada
p.000054:
p.000054: Resource persons
p.000054: Dr Daniel Bausch, Head, Virology and Emerging Infections Department, US Naval Medical Research Unit No. 6, Peru
p.000054: Professor Luciana Borio, Assistant Commissioner for Counterterrorism Policy; Director, Office of Counterterrorism and
p.000054: Emerging Threats, Food and Drug Administration, United States of America
p.000054: Dr Frederick Hayden, Professor of Clinical Virology and Professor of Medicine, University of Virginia School of
p.000054: Medicine, United States of America
p.000054: Dr Stephan Monroe, Deputy Director, National Centre for Emerging and Zoonotic Infectious Diseases, Centers for Disease
p.000054: Control and Prevention, United States of America
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054: WHO Secretariat
p.000054:
p.000054: WHO headquarters, Geneva, Switzerland
p.000054: Dr Margaret Chan, Director-General
p.000054: Dr Marie-Paule Kieny, Assistant Director-General, Health Systems and Innovation Dr Marie-Charlotte Bouesseau, Ethics
p.000054: Advisor, Service Delivery and Safety
p.000054: Dr Pierre Formenty, Scientist, Control of Epidemic Diseases, Department of Pandemic and Epidemic Diseases
p.000054: 56 Dr Margaret Harris, Communication Officer, Department of Pandemic and Epidemic
p.000054: Diseases
p.000054: Mr Gregory Hartl, Coordinator, Department of Communications Dr Rüdiger Krech, Director, Health Systems and Innovation
p.000054: Dr Andreas Reis, Technical Officer, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000054: Dr Cathy Roth, Adviser, Office of the Assistant Director-General, Health Systems and Innovation
p.000054: Dr Vasee Sathyamoorthy, Technical Officer, Initiative for Vaccine Research, Department of Immunization, Vaccines and
p.000054: Biologicals
...
p.002014: Dr Amar Jesani, Independent Researcher and Teacher, Bioethics and Public Health; Editor, Indian Journal of Medical
p.002014: Ethics; Visiting Professor, Centre for Ethics, Yenepoya University, India Dr Dan O’Connor, Head, Medical Humanities,
p.002014: Wellcome Trust, United Kingdom
p.002014: Dr Lisa Schwartz, Arnold L. Johnson Chair in Health Care Ethics, McMaster Ethics in Healthcare, McMaster University,
p.002014: Canada
p.002014: Professor Michael Selgelid, Director, Centre for Human Bioethics, Monash University, Australia Dr Paulina Tindana,
p.002014: Ethicist and Senior Researcher, Navrongo Health Research Centre, Ghana Professor Ross Upshur, Chair in Primary Care
p.002014: Research; Professor, Department of Family and Community Medicine and Dalla Lana School of Public Health, University of
p.002014: Toronto, Canada
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014: Invited participants
p.002014: Dr Enrica Alteri, Head, Human Medicines Evaluation Division, European Medicines Agency, United Kingdom
p.002014: Dr Nicholas Andrews, Statistics Modelling and Economics Department, Centre for Infectious Disease Surveillance and
p.002014: Control, Public Health England, United Kingdom
p.002014: Professor Oumou Younoussa Bah-Sow, Head of Pneumophtisiology, Ignace Deen National Hospital, Guinea
p.002014: Dr Luciana Borio, Assistant Commissioner for Counterterrorism Policy; Director, Office of
p.002014: 58 Counterterrorism and Emerging Threats, Food and Drug Administration, United States of Ameria
p.002014: Dr Jacob Thorup Cohn; Vice President, Governmental Affairs, Bavarian Nordic, Denmark Dr Edward Cox, Director, Office of
p.002014: Antimicrobial Products, Office of New Drugs Center for Drug Evaluation and Research, Food and Drug Administration,
p.002014: Silver Spring MD, United States of America
p.002014: Dr Nicolas Day, Director, Thailand/Laos Wellcome Trust Major Overseas Programme Mahidol-Oxford Tropical Medicine
p.002014: Research Unit, Thailand
p.002014: Dr Matthias Egger, Professor, Clinical Epidemiology, Department of Social Medicine, University of Bristol, United
p.002014: Kingdom; Epidemiology and Public Health, Institute for Social and Preventive Medicine, University of Bern, Switzerland
p.002014: Dr Elizabeth Higgs, Global Health Science Advisor, Office of the Director, Division of Clinical Research, National
p.002014: Institute of Allergy and Infectious Diseases, National Institutes of Health, United States of America
p.002014: Dr Nadia Khelef, Senior Advisor, Global Affairs, Institut Pasteur, France
p.002014: Professor Trudie Lang, Lead Professor, Global Health Network, Nuffield Department of Medicine, University of Oxford,
p.002014: United Kingdom
p.002014: Dr Matthew Lim, Senior Advisor, Global Health Security, Department of Health and Human Services, United States of
p.002014: America
p.002014: Professor Ira Longini, Professor of Biostatistics, Department of Biostatistics, College of Public Health and College of
p.002014: Medicine, University of Florida, United States of America
p.002014: Colonel Scott Miller, Director, Infectious Disease Clinical Research Program, Department of Preventive Medicine,
p.002014: Uniformed Services University, United States of America
p.002014: Ms Adeline Osakwe, Head, National Pharmacovigilance Centre, National Agency for Food and Drug Administration and
p.002014: Control, Nigeria
p.002014: Ms Virginie Pirard, Member, Belgian Advisory Committee on Bioethics; Ethics Advisor, Institut Pasteur, France
p.002014: Dr Micaela Serafini, Medical Director, Médecins Sans Frontières, Switzerland
p.002014: Mr Jemee Tegli, Institutional Review Board Administrator, University of Liberia–Pacific Institute for Research and
p.002014: Evaluation Institutional Review Board, Liberia
p.002014: Dr Gervais Tougas, Representative, International Federation of Pharmaceutical Manufacturers & Associations, Chief
p.002014: Medical Officer, Novartis, Switzerland
p.002014: Dr Johan van Griensven, Department of Clinical Sciences, Institute of Tropical Medicine, Belgium
p.002014: Professor John Whitehead, Emeritus Professor, Department of Mathematics and Statistics, Fylde College, Lancaster
p.002014: University, United Kingdom
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014: WHO Secretariat
p.002014: Dr Marie-Paule Kieny, Assistant Director-General, Health Systems and Innovation Dr Marie-Charlotte Bouesseau, Advisor,
p.002014: Department of Service Delivery and Safety Dr Vânia de la Fuente-Núñez,Technical Officer, Global Health Ethics,
p.002014: Department of Knowledge, Ethics and Research
p.002014: Dr Martin Friede, Scientist, Public Health, Innovation and Intellectual Property, Department of Essential Medicines and
p.002014: Health Products
...
p.000059: Dr Selena Knight, Intern, Global Health Ethics, Department of Knowledge, Ethics and Research Dr Nicola Magrini,
p.000059: Scientist, Policy, Access and Use, Department of Essential Medicines and Health Products
p.000059: Dr Cathy Roth, Adviser, Office of the Assistant Director-General, Health Systems and Innovation Dr Vasee
p.000059: Sathiyamoorthy, Technical Officer, Initiative for Vaccine Research, Department of Immunization, Vaccines and
p.000059: Biologicals
p.000059: Dr Abha Saxena, Coordinator, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059: Dr David Wood, Coordinator, Technologies, Standards and Norms, Department of Essential Medicines and Health Products
p.000059:
p.000059: Developing ethics guidelines for public health responses during epidemics, including for the conduct of related
p.000059: research, Dublin, Ireland, 25–26 May 2015
p.000059:
p.000059: Participants
p.000059: Dr Annick Antierens, Manager, Investigational Platform for Experimental Ebola Products, Médecins Sans Frontières,
p.000059: Switzerland
p.000059: Dr Philippe Calain, Senior Researcher, Unit of Research on Humanitarian Stakes and Practices, Médecins Sans Frontières,
p.000059: Switzerland
p.000059: Dr Edward Cox, Director, Office of Antimicrobial Products, Food and Drug Administration, United States of America
p.000059: Professor Heather Draper, Professor of Biomedical Ethics, University of Birmingham, United Kingdom
p.000059: Dr Sarah Edwards, Senior Lecturer in Research Ethics and Governance, University College London, United Kingdom
p.000059: Professor Jónína Einarsdóttir, Medical Anthropology, School of Social Sciences, University of Iceland, Iceland
p.000059: Professor Jeremy Farrar, Director, Wellcome Trust, United Kingdom
p.000059: Dr Margaret Fitzgerald, Public Health Specialist, Irish Health Service Executive, Ireland Dr Gabriel Fitzpatrick,
p.000059: Médecins Sans Frontières, Ireland
p.000059: Ms Lorraine Gallagher, Development Specialist, Irish Aid, Department of Foreign Affairs, Ireland Professor Jennifer
p.000059: Gibson, Sun Life Financial Chair in Bioethics; Director, Joint Centre for Bioethics; Associate Professor, Institute of
p.000059: Health Policy, Management and Evaluation, University of Toronto, Canada
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059: Professor Frederick G Hayden, Professor of Medicine and Pathology, University of Virginia School of Medicine, Unites
p.000059: States of America
p.000059: Dr Rita Helfand, Centers for Disease Control and Prevention, United States of America Dr Simon Jenkins, Research
p.000059: Fellow, University of Birmingham Project on the ethical challenges experienced by British military healthcare
p.000059: professionals in the Ebola region, United Kingdom
p.000059: Dr Pretesh Kiran, Assistant Professor, Community Health; Convener, Disaster Management Unit, St Johns National Academy
p.000059: of Health Sciences, India
p.000059: 60 Dr Markus Kirchner, Department for Infectious Disease Epidemiology, Robert Koch Institute,
p.000059: Germany
p.000059: Dr Katherine Littler, Senior Policy Adviser, Wellcome Trust, United Kingdom
p.000059: Professor Samuel McConkey, Head, International Health and Tropical Medicine, Royal College of Surgeons, Ireland
p.000059: Dr Farhat Moazam, Founding Chairperson, Center of Biomedical Ethics and Culture, Sindh Institute of Urology and
p.000059: Transplantation, Pakistan
p.000059: Dr Robert Nelson, Deputy Director and Senior Pediatric Ethicist, Office of Pediatric Therapeutics, Food and Drug
p.000059: Administration, United States of America
p.000059: Professor Alistair Nichol, Consultant Anaesthetist, School of Medicine and Medical Sciences, and EU projects,
p.000059: University College Dublin, Ireland
p.000059: Professor Lisa Schwartz, Arnold Johnson Chair in Health Care Ethics, Ethics in Health Care, McMaster University, Canada
p.000059: Professor Michael Selgelid, Director, Centre for Human Bioethics, Monash University, Australia Dr Kadri Simm, Associate
p.000059: Professor of Practical Philosophy, University of Tartu, Estonia
p.000059: Dr Aissatou Touré, Head, Immunology Department, Institut Pasteur de Dakar and Member, National Ethics Committee,
p.000059: Senegal
p.000059: Professor Ross Upshur, Canada Research Chair in Primary Care Research; Professor, Department of Family and Community
p.000059: Medicine and Dalla Lana School of Public Health, University of Toronto, Canada
p.000059: Dr Maria Van Kerkhove, Centre for Global Health, Institut Pasteur, France
p.000059: Dr Aminu Yakubu, Department of Health Planning and Research, Federal Ministry of Health, Nigeria
p.000059:
p.000059: Resource person
p.000059: Professor Carl Coleman (Rapporteur), Professor of Law and Academic Director, Division of Online Learning, Seton Hall
p.000059: University, New Jersey, United States of America
p.000059:
p.000059: WHO headquarters Secretariat, Geneva, Switzerland
...
Searching for indicator influence:
(return to top)
p.000040: specimens will be shared with the communities from which the samples were obtained. Material transfer agreements should
p.000040: be developed with the involvement of persons responsible for the care of patients and the taking of samples,
p.000040: representatives of affected communities and patients, and relevant government officials and ethics committees.
p.000040:
p.000040:
p.000040:
p.000040:
p.000040:
p.000040:
p.000040:
p.000040:
p.000040: 12. Addressing sex- and gender-based differences
p.000040:
p.000040:
p.000040:
p.000041: 41
p.000041: Questions addressed:
p.000041:
p.000041: • How are sex and gender relevant to infectious disease outbreaks?
p.000041: • How can sex and gender be incorporated into public health and surveillance?
p.000041: • How can social and cultural practices relevant to gender roles affect infectious disease outbreaks?
p.000041: • How should appropriate reproductive health-care services be safely provided during an infectious disease
p.000041: outbreak?
p.000041: • How are sex and gender relevant to communication strategies during outbreaks?
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: Sex (biological and physiological characteristics) and gender (socially constructed roles, behaviours, activities, and
p.000041: attributes)20 can influence the spread, containment, course, and consequences of infectious disease outbreaks. Sex and
p.000041: gender differences have been associated with differences in susceptibility to infection, levels of health care
p.000041: received, and in the course and outcome of illness.21 Addressing sex and gender differences in infectious disease
p.000041: outbreak planning and response efforts requires attention to the following considerations:
p.000041:
p.000041: • Sex- and gender-inclusive surveillance programmes — Public health surveillance should systematically collect
p.000041: disaggregated information on sex, gender, and pregnancy status, both to identify differential risks and
p.000041: modes of transmission, and to monitor any differential impact of an infectious disease outbreak and the interventions
p.000041: used to control it. This information is particularly important for pregnant women and their offspring.
p.000041:
p.000041: • Ensuring the availability of high- quality reproductive health-care services — Whether or not they are currently
p.000041: pregnant, women of childbearing age should have access to the full range of high-quality
p.000041: reproductive health-care services during an infectious disease outbreak. These services should be organized and
...
Health / HIV/AIDS
Searching for indicator HIV:
(return to top)
p.000020: disease outbreaks?
p.000020: • What procedural considerations apply to decisions about resource allocation during infectious disease outbreaks?
p.000020: • What obligations do health-care providers have towards persons who are not able to access life-saving resources
p.000020: during infectious disease outbreaks?
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020: Infectious disease outbreaks can quickly overwhelm the capacities of governments and health-care systems, requiring
p.000020: them to make difficult decisions about the allocation of limited resources. Some of these decisions may arise in the
p.000020: context of allocating medical interventions, such as hospital beds, medications, and medical equipment. Others may
p.000020: relate to broader questions about how public health resources should be utilized. For example, how should limited
p.000020: resources be allocated between activities such as surveillance, health promotion, and community engagement? Should
p.000020: human resources be devoted to contact tracing at the possible expense of patient management? Should
p.000020: limited funds be spent improving water and
p.000020: sanitation facilities or building quarantine facilities?
p.000020:
p.000020: Infectious disease outbreaks also compete with other important public health
p.000020: issues for attention and resources. For example, one of the consequences of the Ebola outbreak was a reduction in
p.000020: access to general health-care services due to a combination of a greater number of patients and the sickness and death
p.000020: of health-care workers. As
p.000020: a result, deaths from tuberculosis, human immunodeficiency virus (HIV), and malaria increased dramatically during this
p.000020: period.10
p.000020:
p.000020: Governments, health-care facilities, and others involved in response efforts should
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020: prepare for such situations by developing guidelines on the allocation of scarce resources in outbreak situations. Such
p.000020: guidelines should be developed through an open and transparent process involving broad stakeholder input and, to the
p.000020: extent
p.000020: possible, should be incorporated into formal written documents that establish clear priorities and procedures. Those
p.000020: involved
p.000020: in developing these guidelines should be guided by the following considerations:
p.000020:
p.000020: • Balancing considerations of utility and equity — Resource allocation decisions should be guided by the ethical
p.000020: principles of utility and equity. The principle of utility requires allocating resources to maximize benefits and
p.000020: minimize burdens, while the principle of equity requires attention to the fair distribution of benefits
p.000020: and burdens. In some cases, an equal distribution of benefits and burdens may be considered fair, but in others, it may
p.000020: be fairer to give preference to groups that are worse off, such as the poor, the sick, or the vulnerable. It is not
p.000020: always be possible to achieve fully both utility and equity. For example, establishing treatment centres in large urban
...
p.000050: Organization; 2014 (WHO/HIS/KER/GHE/14.1, http://apps.who.
p.000050: int/iris/bitstream/10665/130997/1/WHO_HIS_KER_GHE_14.1_eng.pdf?ua=1, accessed 23 July 2016).
p.000050:
p.000050: 6 Becker L. Reciprocity, justice, and disability. Ethics. 2005;116(1):9–39.
p.000050:
p.000050: 7 Dawson A, Jennings B. The place of solidarity in public health ethics. Public Health Reviews. 2012;34(1):65–79.
p.000050:
p.000050: 8 Siracusa Principles on the Limitation and Derogation Provision in the International Covenant on Civil and
p.000050: Political Rights. Geneva: American Association for the International Commission of Jurists; 1985
p.000050: (http://icj.wpengine.netdna-cdn.com/wp-content/uploads/1984/07/Siracusa-
p.000050: principles-ICCPR-legal-submission-1985-eng.pdf, accessed 23 July 2016).
p.000050:
p.000050: 9 United Nations Economic and Social Council. General Comment No. 14: The right to Highest Attainable Standard of
p.000050: Health (Art. 12 of the International Covenant on Economic, Social and Cultural Rights). New York: United Nations
p.000050: Committee on Economic, Social and Cultural Rights (E/C. 12/2000/4 – 2000; www1.umn.edu/
p.000050: humanrts/gencomm/escgencom14.htm, accessed 23 July 2016).
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050: 10 Parpia AS, Ndeffo-Mbah ML, Wenzel NS, Galvani AP. Effects of response to the 2014–2015 Ebola outbreak on deaths
p.000050: from malaria, HIV/AIDS, and tuberculosis, West Africa. Emerg Infect Dis. 2016;22(3)
p.000050: (http://dx.doi.org/10.3201/eid2203.150977, accessed 23 July 2016).
p.000050:
p.000050: 11 Declaration of Helsinki – Ethical principles for medical research involving human subjects, revised October 2013
p.000050: Ferney-Voltaire: World Medical Association; 2013 (www.wma.net/ en/30publications/10policies/b3/index.html, accessed 23
p.000050: July 2016).
p.000050:
p.000050: 12 International ethical guidelines for biomedical research involving human subjects.
p.000050: Geneva: Council for International Organizations of Medical Sciences; 2002 (www.cioms. 51
p.000050: ch/publications/guidelines/guidelines_nov_2002_blurb.htm, accessed 23 July 2016).
p.000050:
p.000050: 13 Standards and operational guidance for ethics review of health-related research with human participants. Geneva:
p.000050: World Health Organization; 2011 (www.who.int/ethics/ publications/9789241502948/en/, accessed 23 July 2016).
p.000050:
p.000050: 14 Ethics in epidemics, emergencies and disasters: Research, surveillance and patient care.
p.000050: Geneva: World Health Organization; 2015 (who.int/ethics/publications/epidemics- emergencies-research/en/, accessed 23
p.000050: July 2016).
p.000050:
p.000050: 15 Research ethics in international epidemic response. Geneva: World Health Organization; 2009 (WHO/HSE/GIP/ITP/10.1;
...
Searching for indicator hiv/aids:
(return to top)
Health / Healthy People
Searching for indicator volunteers:
(return to top)
p.000043: obligations to pay their employees and contractors. Fair remuneration for frontline workers includes the provision of
p.000043: financial support during periods in which workers are unable to carry out their normal responsibilities because of an
p.000043: infection acquired on the job.
p.000043:
p.000043: • Support for reintegrating into the community — Frontline workers may experience stigma and discrimination,
p.000043: particularly those involved in unpopular measures such as infection control or burials not conducted according to
p.000043: the traditional customs. Governments should make efforts to reduce the risk of stigmatization and discrimination and
p.000043: help such workers to reintegrate into the community, including by providing job placement assistance and relocation to
p.000043: other communities if needed.
p.000043:
p.000043: • Assistance to family members — Assistance should be provided to families of frontline workers who need to remain
p.000043: away from home in order
p.000043: to carry out their responsibilities or to recuperate from illness. Death benefits should be provided to family members
p.000043: of frontline workers who die in the line of duty, including those who were volunteers or “casual workers.”
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: As noted above, some workers may have a duty to work during an infectious
p.000043: disease outbreak. However, even for these individuals, the duty to assume risk is not unlimited. In determining the
p.000043: scope of workers’ duties to assume personal risks, the following factors should be taken into account:
p.000043:
p.000043: • Reciprocal obligations — Any professional or employment-based obligation to assume personal risk is contingent on
p.000043: society’s fulfilment of its reciprocal obligations to workers, as outlined above. If the reciprocal obligations are not
p.000043: met, frontline
p.000043: workers cannot legitimately be expected to assume a significant risk of harm to themselves and their families.
p.000043:
p.000043: • Risks and benefits — Frontline workers should not be expected to expose themselves to risks that are
p.000043: disproportionate to the public health
p.000043: benefits their efforts are likely to achieve.
p.000043:
p.000043: • Equity and transparency — Entities responsible for assigning frontline workers to specific tasks should ensure
p.000043: that risks are distributed among individuals and occupational categories in an equitable manner, and that the process
p.000043: of assigning workers is as transparent as possible.
p.000043:
p.000043: • Consequences for non- participation — Frontline workers should be informed of the risks they are being asked to
p.000043: assume. Insofar as possible, expectations should be made clear in written employment agreements. Workers who are
...
Health / Mentally Disabled
Searching for indicator mentally:
(return to top)
p.000028:
p.000028:
p.000028: Any medical intervention for the diagnosis, treatment, or prevention of infectious disease should be provided in accord
p.000028: with professional medical standards, under conditions designed to ensure the highest attainable level of patient
p.000028: safety. Countries, with the support of international experts, should establish the minimum standards
p.000028: to be applied in the care and treatment of patients affected by an outbreak.
p.000028: These standards should apply not only to health-care institutions but also to home-based care, community activities
p.000028: (including health education sessions), and environmental decontamination efforts or the management of dead bodies.
p.000028:
p.000028: Individuals offered medical interventions for the diagnosis, treatment, or prevention of an infectious pathogen should
p.000028: be informed about the risks, benefits, and alternatives, just as they would be for other significant medical
p.000028: interventions. The presumption should be that the final decision about which medical interventions to accept, if any,
p.000028: belongs to the patient. For patients who lack the legal capacity to make health- care decisions for themselves,
p.000028: decisions should generally be made by appropriately authorized proxy decision-makers, with efforts made to solicit the
p.000028: patient’s assent whenever possible.
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028: Health-care providers should recognize that, in some situations, the refusal of diagnostic, therapeutic, or preventive
p.000028: measures might be a choice that is rational from the perspective of a mentally competent individual. If an individual
p.000028: is unwilling to accept an intervention, providers should engage the patient in an open and respectful dialogue, paying
p.000028: careful attention to the patient’s concerns, perceptions, and situational needs.
p.000028:
p.000028: In exceptional situations, there may be legitimate reasons to override an individual’s refusal of a diagnostic,
p.000028: therapeutic, or preventive measure that has proven to
p.000028: be safe and effective and is part of the accepted medical standard of care. Decisions on whether to override a refusal
p.000028: should be grounded in the following considerations:
p.000028:
p.000028: • Public health necessity of the proposed intervention — A mentally competent individual’s refusal of diagnostic,
p.000028: therapeutic, or preventive measures should only be overridden when there is substantial reason to believe that
p.000028: accepting the refusal would pose significant risks to public health, that the intervention is likely to
p.000028: ameliorate those risks, and that no other measures to protect public health — including isolating the patient — are
p.000028: feasible under the circumstances.
p.000028:
p.000028: • Existence of medical contraindications to the proposed intervention — Some interventions that may pose low risks
p.000028: for the majority of the population can pose heightened risks for individuals with particular medical conditions.
p.000028: Individuals should not be forced to undergo interventions that would expose them to significant risks in light of their
p.000028: personal medical circumstances.
p.000028: • Feasibility of providing interventions to an unwilling patient — In some cases, it may be impossible to provide
p.000028: an intervention to an individual who is unwilling to be an active participant in the process. For example, standard
p.000028: treatment for tuberculosis requires the patient to
p.000028: take medication on a regular basis for 29
p.000028: several months. Without the patient’s cooperation, it is unrealistic to expect that such a lengthy treatment regimen
p.000028: could successfully be completed. In such circumstances, the only realistic way to protect public health may be to
p.000028: isolate the patient until he or she is no longer infectious, assuming it is feasible to do so in a humane manner.
p.000028:
p.000028: • Impact on community trust — Overriding individuals’ refusal of diagnostic, therapeutic, or preventive measures
...
Searching for indicator disability:
(return to top)
p.000047:
p.000047:
p.000047: References
p.000047:
p.000047:
p.000047: 1 Resolution WHA58.3. Revision of the International Health Regulations. In: Fifty-eighth World Health Assembly,
p.000047: Geneva, 16–25 May 2005. Resolutions and decisions, annex. Geneva: World Health Organization; 2005 (WHA58/2005/REC/1;
p.000047: http://apps.who.int/gb/ ebwha/pdf_files/WHA58-REC1/english/A58_2005_REC1-en.pdf, accessed 23 July 2016).
p.000050: 50
p.000050: 2 Addressing ethical issues in pandemic influenza planning: Discussion papers. Geneva: World Health Organization;
p.000050: 2008 (WHO/HSE/EPR/GIP/2008.2, WHO/IER/ETH/2008.1;
p.000050: http://apps.who.int/iris/bitstream/10665/69902/1/WHO_IER_ETH_2008.1_eng.pdf?ua=1, accessed 23 July 2016).
p.000050:
p.000050: 3 Guidance on ethics of tuberculosis prevention, care and control. Geneva: World Health Organization; 2010
p.000050: (WHO/HTM/TB/2010.16, http://apps.who.int/iris/ bitstream/10665/44452/1/9789241500531_eng.pdf?ua=1, accessed 23 July
p.000050: 2016).
p.000050:
p.000050: 4 Ethics of using convalescent whole blood and convalescent plasma during the Ebola epidemic. Geneva: World Health
p.000050: Organization; 2015 (WHO/HIS/KER/GHE/15.1; http://apps.who.int/iris/bitstream/10665/161912/1/WHO_HIS_KER_GHE_15.1_eng.
p.000050: pdf?ua=1&ua=1, accessed 23 July 2016).
p.000050:
p.000050: 5 Ethical considerations for use of unregistered interventions for Ebola viral disease. Geneva: World Health
p.000050: Organization; 2014 (WHO/HIS/KER/GHE/14.1, http://apps.who.
p.000050: int/iris/bitstream/10665/130997/1/WHO_HIS_KER_GHE_14.1_eng.pdf?ua=1, accessed 23 July 2016).
p.000050:
p.000050: 6 Becker L. Reciprocity, justice, and disability. Ethics. 2005;116(1):9–39.
p.000050:
p.000050: 7 Dawson A, Jennings B. The place of solidarity in public health ethics. Public Health Reviews. 2012;34(1):65–79.
p.000050:
p.000050: 8 Siracusa Principles on the Limitation and Derogation Provision in the International Covenant on Civil and
p.000050: Political Rights. Geneva: American Association for the International Commission of Jurists; 1985
p.000050: (http://icj.wpengine.netdna-cdn.com/wp-content/uploads/1984/07/Siracusa-
p.000050: principles-ICCPR-legal-submission-1985-eng.pdf, accessed 23 July 2016).
p.000050:
p.000050: 9 United Nations Economic and Social Council. General Comment No. 14: The right to Highest Attainable Standard of
p.000050: Health (Art. 12 of the International Covenant on Economic, Social and Cultural Rights). New York: United Nations
p.000050: Committee on Economic, Social and Cultural Rights (E/C. 12/2000/4 – 2000; www1.umn.edu/
p.000050: humanrts/gencomm/escgencom14.htm, accessed 23 July 2016).
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050: 10 Parpia AS, Ndeffo-Mbah ML, Wenzel NS, Galvani AP. Effects of response to the 2014–2015 Ebola outbreak on deaths
p.000050: from malaria, HIV/AIDS, and tuberculosis, West Africa. Emerg Infect Dis. 2016;22(3)
p.000050: (http://dx.doi.org/10.3201/eid2203.150977, accessed 23 July 2016).
p.000050:
p.000050: 11 Declaration of Helsinki – Ethical principles for medical research involving human subjects, revised October 2013
...
Health / Motherhood/Family
Searching for indicator family:
(return to top)
p.000006:
p.000006: Utility — The principle of utility states that actions are right insofar as they promote the well-being of individuals
p.000006: or communities. Efforts to maximize utility require consideration of proportionality (balancing the potential benefits
p.000006: of an activity against any risks of harm) and
p.000006: efficiency (achieving the greatest benefits at the lowest possible cost).
p.000006:
p.000006: Respect for persons — The term “respect for persons” refers to treating individuals in ways that are fitting to and
p.000006: informed by a recognition of our common humanity, dignity and inherent rights. A central
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006: aspect of respect for persons is respect for autonomy, which requires letting individuals make their own choices based
p.000006: on their values and preferences. Informed consent, a process in which a competent individual authorizes a course of
p.000006: action based on sufficient relevant information, without coercion or undue inducement, is one
p.000006: way to operationalize this concept. Where individuals lack decision-making capacity, it may be necessary for others to
p.000006: be charged with protecting their interests. Respect for persons also includes paying attention to values such as
p.000006: privacy and confidentiality, as well as social, religious and cultural beliefs and important relationships, including
p.000006: family bonds. Finally, respect for persons requires transparency and truth-telling in the context of carrying out
p.000006: public health and research activities.
p.000006:
p.000006: Liberty — Liberty includes a broad range of social, religious and political freedoms, such as freedom of movement,
p.000006: freedom of peaceful assembly, and freedom of speech. Many aspects of liberty are protected as fundamental human rights.
p.000006:
p.000006: Reciprocity — Reciprocity consists of making a “fitting and proportional return” for contributions that people have
p.000006: made.6 Policies that encourage reciprocity can
p.000006: be an important means of promoting the principle of justice, as they can correct unfair disparities in the distribution
p.000006: of the benefits and burdens of epidemic response efforts.
p.000006:
p.000006: Solidarity — Solidarity is a social relation in which a group, community, nation
p.000006: or, potentially, global community stands together.7 The principle of solidarity justifies collective action in the
p.000006: face of common threats. It also supports efforts to overcome inequalities that undermine the welfare
p.000006: of minorities and groups that suffer from discrimination.
p.000006:
p.000006:
p.000006: Practical applications
p.000006:
p.000006: The application of ethical principles should be informed by evidence as far as it is
p.000006: available. For example, in determining 9
...
p.000023: be undertaken to ensure that personal information is protected from physical, legal, psychological, and other harm.
p.000023: Countries should consider organizing systems for ethical oversight of public health activities, commensurate with the
p.000023: activity objectives, methods, risks and benefits, as well as the extent to which the activity involves individuals or
p.000023: groups whose situation may make them vulnerable.
p.000023: Regardless of whether such systems are adopted, ethical analysis of public
p.000023: health activities should be consistent with accepted norms of public health ethics and conducted by individuals or
p.000023: entities that can be held accountable for their decisions.
p.000023:
p.000023: Ensuring high-quality, ethically appropriate surveillance is complicated by at least
p.000023: two factors. First, the law surrounding surveillance across jurisdictions may be unnecessarily complex or inconsistent.
p.000023: Second, surveillance activities will occur across jurisdictions with varying levels of resources, thus placing strains
p.000023: on the quality and reliability of the data. These
p.000023: issues are likely to be exacerbated during an infectious disease outbreak, creating an urgent need for careful planning
p.000023: and international collaboration. Specific issues that should be addressed include the following:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023: • Protecting the confidentiality of personal information — The
p.000023: unauthorized disclosure of personal information collected during an infectious disease outbreak (including name,
p.000023: address, diagnosis, family history, etc.) can expose individuals to significant risk. Countries should
p.000023: 24 ensure that adequate protection exists
p.000023: against these risks, including laws that safeguard the confidentiality of information generated through
p.000023: surveillance activities, and that strictly limit the circumstances in which such information may be used or disclosed
p.000023: for purposes different from those for which it was initially collected. Use and sharing of non-aggregated surveillance
p.000023: data for research purposes must have the approval of a properly constituted and trained research ethics committee.
p.000023:
p.000023: • Assessing the importance of universal participation — Public health surveillance is typically conducted on a
p.000023: mandatory basis, without
p.000023: the possibility of individual refusal. Collecting surveillance information on a mandatory basis is ethically
p.000023: appropriate on the grounds of public
p.000023: interest if an accountable governmental authority has determined that universal participation is necessary to achieve
p.000023: compelling public health objectives.
p.000023: However, it should not be assumed that surveillance activities must always be carried out on a mandatory basis.
p.000023: Entities responsible for designing and approving surveillance programmes should consider the appropriateness of
p.000023: allowing individuals to opt out of particular surveillance activities, taking into account the nature and degree of
p.000023: individual risks involved and the extent to which allowing opt-outs
p.000023: would undermine the activity’s public health goals.
p.000023:
...
p.000025:
p.000025: about the outbreak pathogen, as determined in consultation with national and international public health officials. No
p.000025: such interventions should be implemented unless there is a reasonable basis to expect they will significantly reduce
p.000025: disease transmission. The rationale for relying
p.000025: 26 on these measures should be made
p.000025: explicit, and the appropriateness of any restrictions should be continuously re-evaluated in light of emerging
p.000025: scientific information about the outbreak. If the original rationale for
p.000025: imposing a restriction no longer applies, the restriction should be lifted without delay.
p.000025:
p.000025: • Least restrictive means — Any restrictions on freedom of movement should be designed and implemented in a manner
p.000025: that imposes the fewest constraints reasonably possible. Greater restrictions should be imposed only when there are
p.000025: strong grounds to believe that less restrictive measures are unlikely to achieve important
p.000025: public health goals. For example, requests for voluntary cooperation are generally preferable to public health mandates
p.000025: enforced by law or military authorities. Similarly, home-based quarantine should be considered before confining
p.000025: individuals in
p.000025: institutions. While isolation in a properly equipped health-care facility is usually recommended for individuals who
p.000025: are already symptomatic, especially for diseases with a high potential for contagiousness, home-based isolation may
p.000025: sometimes be appropriate, provided that adequate medical and
p.000025: logistical support can be organized and family attendants are willing and able to act under the oversight of trained
p.000025: public health staff. This is particularly true if the caseload overwhelms facility capacity.
p.000025:
p.000025: • Costs — In some cases, a less restrictive alternative may involve greater costs. This does not, in itself,
p.000025: justify more restrictive approaches. However, costs and other practical constraints (e.g. logistics, distance,
p.000025: available workforce) may legitimately be taken into account to determine whether a less restrictive alternative is
p.000025: feasible under the circumstances, particularly in settings with severe resource constraints.
p.000025:
p.000025: • Ensuring humane conditions — Any restrictions on freedom of movement, particularly those that are not voluntary,
p.000025: should be backed up with sufficient resources to ensure that those subject to the restrictions do not experience undue
p.000025: burdens. For example, individuals whose mobility is restricted (whether through confinement at home or
p.000025: in institutional settings) should be ensured access to food, drinking water, sanitary facilities, shelter, clothing,
p.000025: and medical care. It is also important to ensure that individuals have adequate physical space, opportunities to engage
p.000025: in activities, and the means
p.000025: to communicate with their loved ones and the outside world. Fulfilling these needs is essential to respect individual
p.000025: dignity and address the significant psychosocial burden of confinement on individuals and their loved ones. Mechanisms
...
p.000035: overseeing a clinical trial. Knowledge generated through MEURI should be aggregated across patients if possible and
p.000035: shared transparently, completely and rapidly with the MEURI scientific advisory committee, public health authorities,
p.000035: physicians and researchers in the country, and the international medical and scientific community.
p.000035: Information should be described accurately, without overstating benefits or understating uncertainties or risks.
p.000035:
p.000035: • Importance of informed consent — Individuals who are offered MEURI should be made aware that the intervention
p.000035: might not benefit
p.000035: them and might even harm them. The process of obtaining informed consent to MEURI should be carried out in a
p.000035: culturally and linguistically sensitive manner, with an emphasis on the content and understandability of the
p.000035: information conveyed and the voluntariness of the patient’s decision.
p.000035: The ultimate choice of whether to receive the unproven intervention must rest with the patient, if the patient is
p.000035: in a condition to make the choice. If the patient is unconscious, cognitively impaired, or too sick to understand the
p.000035: information, proxy consent should be obtained from a family member or other authorized decision-maker.
p.000035:
p.000035: • Need for community engagement —
p.000035: MEURI must be sensitive to local norms and practices. One way to try to ensure such sensitivity is to use rapid
p.000035: “community engagement
p.000035: teams” to promote dialogue about the potential benefits and risks of receiving
p.000035: interventions that have not yet been tested in clinical trials.
p.000035:
p.000035: • Fair distribution in the face of scarcity — Compounds qualifying for MEURI may not be available in large
p.000035: quantities. In this situation, choices will have to be made about who receives
p.000035: each intervention. Countries should 37
p.000035: establish mechanisms for making these allocation decisions, taking into account the assessment of the MEURI Scientific
p.000035: Advisory Committee and the principles discussed in Guideline 4.
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: 10. Rapid data sharing
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000038: 38
p.000038: Questions addressed:
p.000038:
p.000038: • Why is rapid data sharing essential during an infectious disease outbreak?
p.000038: • What are the key ethical issues related to rapid data sharing?
p.000038:
p.000038:
p.000038:
p.000038:
p.000038:
p.000038: The collection and sharing of data are essential parts of ordinary public health practice. During an infectious disease
p.000038: outbreak, data sharing takes on increased urgency because of the uncertain and ever-changing scientific information;
p.000038: the compromised response capacity of local health systems; and the heightened role of cross-border collaboration. For
...
p.000041: Entities responsible for developing and implementing communication strategies should be sensitive to sex- and gender-
p.000041: based differences in how individuals have access to and respond to health- related information. Separate messages and
p.000041: communication strategies may be needed to provide relevant information to particular subgroups, such as pregnant women
p.000041: or nursing mothers.
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: Influenza in India
p.000041: Source: Tom Pietrasik, WHO
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: 13. Frontline response workers’ rights and obligations
p.000041:
p.000041:
p.000041:
p.000043: 43
p.000043: Questions addressed:
p.000043:
p.000043: • What obligations exist to protect the health of frontline workers who participate in infectious disease outbreak
p.000043: response efforts?
p.000043: • What obligations exist to provide material support to frontline workers who participate in infectious disease
p.000043: outbreak response efforts?
p.000043: • To what extent do these obligations extend to the workers’ family?
p.000043: • What should be taken into account in determining whether individuals have an obligation to serve as frontline
p.000043: workers during infectious disease outbreaks?
p.000043: • What special obligations do workers in the health-care sector have during infectious disease outbreaks?
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: An effective infectious disease outbreak response depends on the contribution of
p.000043: a diverse range of frontline workers, some of whom may be working on a volunteer basis. These workers often assume
p.000043: considerable personal risk to carry out their jobs. Within the health-care sector, frontline workers range from
p.000043: health-care professionals
p.000043: with direct patient care responsibilities to traditional healers, ambulance drivers,
p.000043: laboratory workers, and hospital ancillary staff. Outside the health sector, individuals such as sanitation workers,
p.000043: burial teams, domestic humanitarian aid workers, and persons who carry out contact-tracing also play critical roles.
p.000043: Some of these workers may be among the least advantaged members of society, and have little control over the type of
p.000043: duties they are asked to
p.000043: perform. It is essential that frontline workers’ rights and obligations be clearly established during the pre-outbreak
p.000043: planning period,
p.000043: in order to ensure that all actors are aware of what can reasonably be expected if an outbreak occurs.
p.000043:
p.000043: Workers with certain professional qualifications, such as physicians, nurses, and funeral directors, may have a duty to
...
p.000043:
p.000043: may have precarious employment contracts with no social protection, or work on
p.000043: a volunteer basis.
p.000043:
p.000043: Regardless of whether a particular individual has a pre-existing duty to assume
p.000043: heightened risks during an infectious disease outbreak, once a worker has taken on these
p.000043: 44 risks, society has a reciprocal obligation to
p.000043: provide necessary support. At a minimum, fulfilment of society’s reciprocal obligations to frontline workers requires
p.000043: the following actions:
p.000043:
p.000043: • Minimizing the risk of infection —
p.000043: Individuals should not be expected to take on risky work assignments
p.000043: during an infectious disease outbreak unless they are provided with
p.000043: the training, tools, and resources necessary to minimize the risks to the extent reasonably possible. This includes
p.000043: complete and accurate information known about the nature
p.000043: of the pathogen and infection control measures, updated information on the epidemiological situation at the local
p.000043: level, and the provision of personal protective equipment. Regular screening of frontline workers should be put
p.000043: in place to detect any infection as quickly as possible, in order to initiate immediate care and minimize the risk of
p.000043: transmission to colleagues, patients, families, and community members.
p.000043:
p.000043: • Priority access to health care — Frontline workers who become sick, as well as any immediate family members who
p.000043: become ill through contact with the worker, should be ensured access to the highest level of care reasonably available.
p.000043: In addition, countries should consider giving frontline workers and their families priority access to vaccines
p.000043: and other treatments as they become available.
p.000043:
p.000043: • Appropriate remuneration — Frontline workers should be given fair remuneration for their work. Governments should
p.000043: ensure that public sector workers are paid in
p.000043: a timely manner, and make efforts to ensure that actors in the private and nongovernmental sectors fulfil their own
p.000043: obligations to pay their employees and contractors. Fair remuneration for frontline workers includes the provision of
p.000043: financial support during periods in which workers are unable to carry out their normal responsibilities because of an
p.000043: infection acquired on the job.
p.000043:
p.000043: • Support for reintegrating into the community — Frontline workers may experience stigma and discrimination,
p.000043: particularly those involved in unpopular measures such as infection control or burials not conducted according to
p.000043: the traditional customs. Governments should make efforts to reduce the risk of stigmatization and discrimination and
p.000043: help such workers to reintegrate into the community, including by providing job placement assistance and relocation to
p.000043: other communities if needed.
p.000043:
p.000043: • Assistance to family members — Assistance should be provided to families of frontline workers who need to remain
p.000043: away from home in order
p.000043: to carry out their responsibilities or to recuperate from illness. Death benefits should be provided to family members
p.000043: of frontline workers who die in the line of duty, including those who were volunteers or “casual workers.”
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: As noted above, some workers may have a duty to work during an infectious
p.000043: disease outbreak. However, even for these individuals, the duty to assume risk is not unlimited. In determining the
p.000043: scope of workers’ duties to assume personal risks, the following factors should be taken into account:
p.000043:
p.000043: • Reciprocal obligations — Any professional or employment-based obligation to assume personal risk is contingent on
p.000043: society’s fulfilment of its reciprocal obligations to workers, as outlined above. If the reciprocal obligations are not
p.000043: met, frontline
p.000043: workers cannot legitimately be expected to assume a significant risk of harm to themselves and their families.
p.000043:
p.000043: • Risks and benefits — Frontline workers should not be expected to expose themselves to risks that are
p.000043: disproportionate to the public health
p.000043: benefits their efforts are likely to achieve.
p.000043:
p.000043: • Equity and transparency — Entities responsible for assigning frontline workers to specific tasks should ensure
p.000043: that risks are distributed among individuals and occupational categories in an equitable manner, and that the process
p.000043: of assigning workers is as transparent as possible.
p.000043:
p.000043: • Consequences for non- participation — Frontline workers should be informed of the risks they are being asked to
p.000043: assume. Insofar as possible, expectations should be made clear in written employment agreements. Workers who are
p.000043: unwilling to accept reasonable risks and work assignments may be subject to professional repercussions
p.000043: (for example, loss of their job), but additional punishments, such as fines or imprisonment, are generally unwarranted.
p.000043: Persons responsible for assessing the consequences for non- participation should recognize that
p.000043: workers may sometimes need to balance other obligations, such as duty to family,
p.000043: against job-related responsibilities. 45
p.000043:
p.000043: Additional obligations of those working in the health‑care sector:
p.000043:
p.000043: In addition to the issues addressed above, persons working in the health-care sector have obligations to the community
p.000043: during an infectious disease outbreak, including the following:
p.000043:
p.000043: • Participate in public health surveillance and reporting efforts — Persons working in the health sector have an
p.000043: obligation to participate in organized measures to respond to infectious disease outbreaks, including public health
p.000043: surveillance and reporting. Health-care providers should protect the confidentiality of patient information to the
p.000043: maximum extent compatible with legitimate public health interests.
p.000043:
p.000043: • Provide accurate information to the public — During an infectious disease outbreak, public health officials have
p.000043: the primary responsibility to communicate information about the outbreak pathogen, including how
p.000043: it is transmitted, how infection can be prevented, and what treatments or preventive measures may be effective. Those
p.000043: responsible for designing communication strategies should anticipate and respond to misinformation, exaggeration, and
p.000043: mistrust, and should seek (without
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: withholding key information) to minimize the risk that information about risk factors will lead to stigmatization and
...
p.000054:
p.000054:
p.000054:
p.000054: Panel discussion: Ethical considerations for use of unregistered interventions
p.000054: for Ebola viral disease, World Health Organization, Geneva, 11 August 2014 55
p.000054:
p.000054: Advisors
p.000054: Dr Juan Pablo Beca, Professor, Bioethics Center, Universidad del Desarrollo, Chile
p.000054: Dr Helen Byomire Ndagije, Head, Drug Information Department, Ugandan National Drug Authority, Uganda
p.000054: Dr Philippe Calain (Chair), Senior Researcher, Unit of Research on Humanitarian Stakes and Practices, Médecins Sans
p.000054: Frontières, Switzerland
p.000054: Dr Marion Danis, Head, Ethics and Health Policy and Chief, Bioethics Consultation Service, National Institutes of
p.000054: Health, United States of America
p.000054: Professor Jeremy Farrar, Director, Wellcome Trust, United Kingdom Professor Ryuichi Ida, Chair, National Bioethics
p.000054: Advisory Committee, Japan
p.000054: Professor Tariq Madani, infectious diseases physician and clinical academic researcher, Saudi Arabia
p.000054: Professor Michael Selgelid, Director, Centre for Human Bioethics, Monash University, Australia
p.000054: Professor Peter Smith, Professor of Tropical Epidemiology, London School of Tropical Medicine and Hygiene, United
p.000054: Kingdom
p.000054: Ms Jeanine Thomas, Patient Safety Champion, United States of America
p.000054: Professor Aisssatou Touré, Head, Immunology Department, Institut Pasteurde Dakar,,Senegal Professor Ross Upshur, Chair
p.000054: in Primary Care Research; Professor, Department of Family and Community Medicine and Dalla Lana School of Public
p.000054: Health, University of Toronto; Canada
p.000054:
p.000054: Resource persons
p.000054: Dr Daniel Bausch, Head, Virology and Emerging Infections Department, US Naval Medical Research Unit No. 6, Peru
p.000054: Professor Luciana Borio, Assistant Commissioner for Counterterrorism Policy; Director, Office of Counterterrorism and
p.000054: Emerging Threats, Food and Drug Administration, United States of America
p.000054: Dr Frederick Hayden, Professor of Clinical Virology and Professor of Medicine, University of Virginia School of
p.000054: Medicine, United States of America
p.000054: Dr Stephan Monroe, Deputy Director, National Centre for Emerging and Zoonotic Infectious Diseases, Centers for Disease
p.000054: Control and Prevention, United States of America
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054: WHO Secretariat
p.000054:
p.000054: WHO headquarters, Geneva, Switzerland
p.000054: Dr Margaret Chan, Director-General
p.000054: Dr Marie-Paule Kieny, Assistant Director-General, Health Systems and Innovation Dr Marie-Charlotte Bouesseau, Ethics
p.000054: Advisor, Service Delivery and Safety
p.000054: Dr Pierre Formenty, Scientist, Control of Epidemic Diseases, Department of Pandemic and Epidemic Diseases
p.000054: 56 Dr Margaret Harris, Communication Officer, Department of Pandemic and Epidemic
p.000054: Diseases
p.000054: Mr Gregory Hartl, Coordinator, Department of Communications Dr Rüdiger Krech, Director, Health Systems and Innovation
...
p.000054:
p.000054: Ethical issues related to study design for trials on therapeutics, World Health Organization, Geneva, 20–21 October
p.002014: 2014
p.002014:
p.002014: Ethics Working Group
p.002014: Professor Arthur Caplan, Drs William F and Virginia Connolly Mitty; Director, Division of Medical Ethics, New York
p.002014: University Langone Medical Center’s Department of Population Health, United States of America
p.002014: Dr Clare Chandler, Senior Lecturer, Medical Anthropology, Department of Global Health and Development, London School of
p.002014: Hygiene and Tropical Medicine, United Kingdom
p.002014: Dr Alpha Ahmadou Diallo, Administrator, National Ethics Committee, Ministry of Health and Public Hygiene, Guinea
p.002014: Dr Amar Jesani, Independent Researcher and Teacher, Bioethics and Public Health; Editor, Indian Journal of Medical
p.002014: Ethics; Visiting Professor, Centre for Ethics, Yenepoya University, India Dr Dan O’Connor, Head, Medical Humanities,
p.002014: Wellcome Trust, United Kingdom
p.002014: Dr Lisa Schwartz, Arnold L. Johnson Chair in Health Care Ethics, McMaster Ethics in Healthcare, McMaster University,
p.002014: Canada
p.002014: Professor Michael Selgelid, Director, Centre for Human Bioethics, Monash University, Australia Dr Paulina Tindana,
p.002014: Ethicist and Senior Researcher, Navrongo Health Research Centre, Ghana Professor Ross Upshur, Chair in Primary Care
p.002014: Research; Professor, Department of Family and Community Medicine and Dalla Lana School of Public Health, University of
p.002014: Toronto, Canada
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014: Invited participants
p.002014: Dr Enrica Alteri, Head, Human Medicines Evaluation Division, European Medicines Agency, United Kingdom
p.002014: Dr Nicholas Andrews, Statistics Modelling and Economics Department, Centre for Infectious Disease Surveillance and
p.002014: Control, Public Health England, United Kingdom
p.002014: Professor Oumou Younoussa Bah-Sow, Head of Pneumophtisiology, Ignace Deen National Hospital, Guinea
p.002014: Dr Luciana Borio, Assistant Commissioner for Counterterrorism Policy; Director, Office of
p.002014: 58 Counterterrorism and Emerging Threats, Food and Drug Administration, United States of Ameria
p.002014: Dr Jacob Thorup Cohn; Vice President, Governmental Affairs, Bavarian Nordic, Denmark Dr Edward Cox, Director, Office of
p.002014: Antimicrobial Products, Office of New Drugs Center for Drug Evaluation and Research, Food and Drug Administration,
p.002014: Silver Spring MD, United States of America
p.002014: Dr Nicolas Day, Director, Thailand/Laos Wellcome Trust Major Overseas Programme Mahidol-Oxford Tropical Medicine
p.002014: Research Unit, Thailand
p.002014: Dr Matthias Egger, Professor, Clinical Epidemiology, Department of Social Medicine, University of Bristol, United
p.002014: Kingdom; Epidemiology and Public Health, Institute for Social and Preventive Medicine, University of Bern, Switzerland
p.002014: Dr Elizabeth Higgs, Global Health Science Advisor, Office of the Director, Division of Clinical Research, National
...
p.000059: of Health Sciences, India
p.000059: 60 Dr Markus Kirchner, Department for Infectious Disease Epidemiology, Robert Koch Institute,
p.000059: Germany
p.000059: Dr Katherine Littler, Senior Policy Adviser, Wellcome Trust, United Kingdom
p.000059: Professor Samuel McConkey, Head, International Health and Tropical Medicine, Royal College of Surgeons, Ireland
p.000059: Dr Farhat Moazam, Founding Chairperson, Center of Biomedical Ethics and Culture, Sindh Institute of Urology and
p.000059: Transplantation, Pakistan
p.000059: Dr Robert Nelson, Deputy Director and Senior Pediatric Ethicist, Office of Pediatric Therapeutics, Food and Drug
p.000059: Administration, United States of America
p.000059: Professor Alistair Nichol, Consultant Anaesthetist, School of Medicine and Medical Sciences, and EU projects,
p.000059: University College Dublin, Ireland
p.000059: Professor Lisa Schwartz, Arnold Johnson Chair in Health Care Ethics, Ethics in Health Care, McMaster University, Canada
p.000059: Professor Michael Selgelid, Director, Centre for Human Bioethics, Monash University, Australia Dr Kadri Simm, Associate
p.000059: Professor of Practical Philosophy, University of Tartu, Estonia
p.000059: Dr Aissatou Touré, Head, Immunology Department, Institut Pasteur de Dakar and Member, National Ethics Committee,
p.000059: Senegal
p.000059: Professor Ross Upshur, Canada Research Chair in Primary Care Research; Professor, Department of Family and Community
p.000059: Medicine and Dalla Lana School of Public Health, University of Toronto, Canada
p.000059: Dr Maria Van Kerkhove, Centre for Global Health, Institut Pasteur, France
p.000059: Dr Aminu Yakubu, Department of Health Planning and Research, Federal Ministry of Health, Nigeria
p.000059:
p.000059: Resource person
p.000059: Professor Carl Coleman (Rapporteur), Professor of Law and Academic Director, Division of Online Learning, Seton Hall
p.000059: University, New Jersey, United States of America
p.000059:
p.000059: WHO headquarters Secretariat, Geneva, Switzerland
p.000059: Dr Vânia de la Fuente-Núñez, Technical Officer, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059: Dr Andreas Reis, Technical Officer, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059: Dr Abha Saxena, Coordinator, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059: Meeting to develop WHO Guidance on ethics and epidemics. Prato, Italy, 22–24 November 2015
p.000059:
p.000059: Participants
p.000059: Dr Franklyn Prieto Alvarado, Universidad Nacional de Colombia, Colombia Dr Annick Antierens, Médecins Sans Frontières,
p.000059: Switzerland
p.000059: Professor Oumou Younoussa Bah-Sow, Ignace Deen National Hospital, Guinea Dr Ruchi Baxi, The Ethox Centre, United
...
p.000061: et de Formation sur le VIH et les Maladies Associées, Hôpital de Fann, Sénégal
p.000061: Dr Benedict Dossen, National Research Ethics Board, University of Liberia–Pacific Institute for Research and
p.000061: Evaluation, Africa Center Institutional Review Board, Liberia
p.000061: Dr Sarah Edwards, Research Ethics and Governance, University College London, United Kingdom
p.000061: Professor Amy F Fairchild, Mailman School of Public Health, United States of America Dr Eddy Foday, Ministry of Health
p.000061: and Sanitation, Sierra Leone
p.000061: Professor Frederick G Hayden, Mailman School of Public Health, United States of America Dr Amar Jesani, Yenepoya
p.000061: University, India
p.000061: Ms Rebecca Johnson, Ebola survivor, Sierra Leone
p.000061: Ms Robinah Kaitiritimba, Patient representative (Community representative, Makerere University Institutional Review
p.000061: Board; Uganda National Health Consumers’ Organisation, Uganda
p.000061: Dr Stephen Kennedy, Coordinator, Ebola Virus Disease Research, Incident Management System, Liberia
p.000061: Dr Pretesh Kiran, National Academy of Health Sciences, India
p.000061: Dr Bocar Kouyate, Special Advisor to the Minister of Health, Burkina Faso Professor Mark Leys, Vrije Universiteit
p.000061: Brussel,,Belgium
p.000061: Dr Farhat Moazam, Founding Chairperson of Center of Biomedical Ethics and Culture, Sindh Institute of Urology and
p.000061: Transplantation, Pakistan
p.000061: Dr Dónal O’Mathúna, Dublin City University, Ireland
p.000061: Professor Mahmudur Rahman, Director, Institute of Epidemiology, Disease Control and Research; National Influenza
p.000061: Center, Ministry of Health and Family Welfare, Bangladesh Professor Lisa Schwartz, Arnold Johnson Chair in Health Care
p.000061: Ethics, McMaster Ethics in Healthcare, McMaster University, Canada
p.000061: Professor Michael Selgelid, Director, Centre for Human Bioethics, Monash University, Australia Dr Aissatou Touré, Head,
p.000061: Immunology Unit, Institut Pasteur de Dakar, Senegal
p.000061: Dr Maria Van Kerkhove, Centre for Global Health, Institut Pasteur, France
p.000061:
p.000061:
p.000061:
p.000061:
p.000061:
p.000061:
p.000061:
p.000061:
p.000061: Observer
p.000061: Dr Katherine Littler, Senior Policy Adviser, Policy Department, Wellcome Trust, United Kingdom
p.000061:
p.000061: Resource consultants
p.000061: Professor Carl Coleman, Professor of Law and Academic Director, Division of Online Learning, Seton Hall University, New
p.000061: Jersey, United States of America
p.000061: Dr Michele Loi (Rapporteur), Post-doctoral research fellow, ETH Zürich, Switzerland
p.000061: Dr Diego Silva, Assistant Professor, Faculty of Health Sciences, Simon Fraser University, Canada
p.000062: 62
p.000062: WHO headquarters Secretariat, Geneva, Switzerland
p.000062: Dr Pierre Formenty, Scientist, Control of Epidemic Diseases, Department of Pandemic and Epidemic Diseases
p.000062: Dr Vânia de la Fuente-Núñez,Technical Officer, Global Health Ethics, Department of Knowledge, Ethics and Research
...
Health / Physically Disabled
Searching for indicator illness:
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p.000040:
p.000040:
p.000040:
p.000040:
p.000040:
p.000040:
p.000040:
p.000040:
p.000040: 12. Addressing sex- and gender-based differences
p.000040:
p.000040:
p.000040:
p.000041: 41
p.000041: Questions addressed:
p.000041:
p.000041: • How are sex and gender relevant to infectious disease outbreaks?
p.000041: • How can sex and gender be incorporated into public health and surveillance?
p.000041: • How can social and cultural practices relevant to gender roles affect infectious disease outbreaks?
p.000041: • How should appropriate reproductive health-care services be safely provided during an infectious disease
p.000041: outbreak?
p.000041: • How are sex and gender relevant to communication strategies during outbreaks?
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: Sex (biological and physiological characteristics) and gender (socially constructed roles, behaviours, activities, and
p.000041: attributes)20 can influence the spread, containment, course, and consequences of infectious disease outbreaks. Sex and
p.000041: gender differences have been associated with differences in susceptibility to infection, levels of health care
p.000041: received, and in the course and outcome of illness.21 Addressing sex and gender differences in infectious disease
p.000041: outbreak planning and response efforts requires attention to the following considerations:
p.000041:
p.000041: • Sex- and gender-inclusive surveillance programmes — Public health surveillance should systematically collect
p.000041: disaggregated information on sex, gender, and pregnancy status, both to identify differential risks and
p.000041: modes of transmission, and to monitor any differential impact of an infectious disease outbreak and the interventions
p.000041: used to control it. This information is particularly important for pregnant women and their offspring.
p.000041:
p.000041: • Ensuring the availability of high- quality reproductive health-care services — Whether or not they are currently
p.000041: pregnant, women of childbearing age should have access to the full range of high-quality
p.000041: reproductive health-care services during an infectious disease outbreak. These services should be organized and
p.000041: delivered in a manner that does not stigmatize persons who use them or expose them to a heightened risk of infection
p.000041: with the outbreak pathogen. If there is evidence that an infectious
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
...
p.000043:
p.000043: • Appropriate remuneration — Frontline workers should be given fair remuneration for their work. Governments should
p.000043: ensure that public sector workers are paid in
p.000043: a timely manner, and make efforts to ensure that actors in the private and nongovernmental sectors fulfil their own
p.000043: obligations to pay their employees and contractors. Fair remuneration for frontline workers includes the provision of
p.000043: financial support during periods in which workers are unable to carry out their normal responsibilities because of an
p.000043: infection acquired on the job.
p.000043:
p.000043: • Support for reintegrating into the community — Frontline workers may experience stigma and discrimination,
p.000043: particularly those involved in unpopular measures such as infection control or burials not conducted according to
p.000043: the traditional customs. Governments should make efforts to reduce the risk of stigmatization and discrimination and
p.000043: help such workers to reintegrate into the community, including by providing job placement assistance and relocation to
p.000043: other communities if needed.
p.000043:
p.000043: • Assistance to family members — Assistance should be provided to families of frontline workers who need to remain
p.000043: away from home in order
p.000043: to carry out their responsibilities or to recuperate from illness. Death benefits should be provided to family members
p.000043: of frontline workers who die in the line of duty, including those who were volunteers or “casual workers.”
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: As noted above, some workers may have a duty to work during an infectious
p.000043: disease outbreak. However, even for these individuals, the duty to assume risk is not unlimited. In determining the
p.000043: scope of workers’ duties to assume personal risks, the following factors should be taken into account:
p.000043:
p.000043: • Reciprocal obligations — Any professional or employment-based obligation to assume personal risk is contingent on
p.000043: society’s fulfilment of its reciprocal obligations to workers, as outlined above. If the reciprocal obligations are not
p.000043: met, frontline
p.000043: workers cannot legitimately be expected to assume a significant risk of harm to themselves and their families.
p.000043:
p.000043: • Risks and benefits — Frontline workers should not be expected to expose themselves to risks that are
p.000043: disproportionate to the public health
p.000043: benefits their efforts are likely to achieve.
p.000043:
p.000043: • Equity and transparency — Entities responsible for assigning frontline workers to specific tasks should ensure
p.000043: that risks are distributed among individuals and occupational categories in an equitable manner, and that the process
p.000043: of assigning workers is as transparent as possible.
p.000043:
...
p.000043: obligation to participate in organized measures to respond to infectious disease outbreaks, including public health
p.000043: surveillance and reporting. Health-care providers should protect the confidentiality of patient information to the
p.000043: maximum extent compatible with legitimate public health interests.
p.000043:
p.000043: • Provide accurate information to the public — During an infectious disease outbreak, public health officials have
p.000043: the primary responsibility to communicate information about the outbreak pathogen, including how
p.000043: it is transmitted, how infection can be prevented, and what treatments or preventive measures may be effective. Those
p.000043: responsible for designing communication strategies should anticipate and respond to misinformation, exaggeration, and
p.000043: mistrust, and should seek (without
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: withholding key information) to minimize the risk that information about risk factors will lead to stigmatization and
p.000043: discrimination. If persons working in the health sector are asked medical questions about the outbreak by patients or
p.000043: the general public, they should not spread
p.000043: 46 unsubstantiated rumours or suspicion
p.000043: and ensure that information they provide comes from reliable sources.
p.000043:
p.000043: • Avoiding exploitation — In the context of a rapidly spreading life- threatening illness with no proven
p.000043: treatment, desperate individuals may be willing to try any intervention offered, regardless of the expected risks or
p.000043: benefits. Health-care workers have a duty not to exploit individuals’ vulnerability by offering treatments or
p.000043: preventive measures for which
p.000043: there is no reasonable basis to believe that the potential benefits outweigh the uncertainties and risks. This duty
p.000043: does not preclude the appropriate use of unproven interventions on an
p.000043: experimental basis, consistent with the guidelines set forth in Guideline 9.
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:
p.000043:
p.000043:
p.000043:
p.000043: Earthquake Haiti 2010
p.000043: Source: Victor Ariscain, PAHO/WHO
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: 14. Ethical issues in deploying foreign humanitarian aid workers
p.000043:
p.000043:
p.000043:
p.000047: 47
p.000047: Questions addressed:
p.000047:
p.000047: • What ethical issues arise in assigning foreign workers for deployment during infectious disease outbreaks?
p.000047: • What obligations do sponsoring organizations have to prepare foreign aid workers adequately for their missions?
p.000047: • What obligations do sponsoring organizations have regarding the conditions of deployment?
p.000047: • What obligations do sponsoring organizations have to coordinate with local officials?
p.000047: • What obligations do foreign aid workers have before, during, and after deployment?
p.000047:
...
p.000047: authorities and care providers to
p.000047: ensure that the foreign agency does not excessively draw resources away from other essential services.
p.000047:
p.000047: • Fairness in assigning foreign workers for deployment — Foreign aid workers should be deployed only if they are
p.000047: capable of providing necessary services not sufficiently available in the local setting. Assignment of foreign
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047: health workers should take into consideration their relevant skills and knowledge, as well as their linguistic and
p.000047: cultural competencies to meet mission objectives and understand and communicate with affected communities. It is
p.000047: inappropriate to deploy unqualified or unnecessary
p.000047: 48 workers solely to satisfy their personal
p.000047: or professional desire to be helpful (so-called “disaster tourism”).
p.000047:
p.000047: • Clarity about conditions of deployment — Prospective foreign aid workers should be given
p.000047: comprehensive information about the project’s expectations and risks so they can make informed decisions about whether
p.000047: or not they will be able to make appropriate contributions. In addition, foreign aid workers should be clearly
p.000047: informed of the conditions of their deployment, including the level of health care they can expect if they become ill,
p.000047: the circumstances under
p.000047: which they will be repatriated, available insurance, and whether benefits will
p.000047: be provided to their families in case of illness or death.
p.000047:
p.000047: • Provision of necessary training and resources — Aid workers must be provided with appropriate
p.000047: training, preparation, and equipment to ensure that they can effectively carry out their mission with the lowest risks
p.000047: practicable. Training should include preparation in psychosocial and communication skills, and in understanding and
p.000047: respecting the local culture and traditions. Managers and organizations have an obligation to provide adequate support
p.000047: and guidance to the staff, both during their activity in the field and following
p.000047: their mission. This should include training and resources for managing challenging ethical issues, such as resource
p.000047: allocation decisions, triage, and inequities.
p.000047:
p.000047: • Ensuring the security and safety of aid workers — Organizations that deploy foreign aid workers have an
p.000047: obligation to take all necessary measures to ensure the workers’ security, particularly in situations of crisis; this
p.000047: obligation includes the provision of measures to reduce risks of exposure to infectious agents, contamination and
p.000047: violence. A clear chain of authority must be in place to provide oversight and ongoing advice. Individuals who object
p.000047: to assigned duties should have an opportunity for review and appeal, according to the norms of the organizations for
p.000047: which they work.
p.000047:
p.000047: Aid workers also have their own ethical obligations to patients, affected communities, their sponsoring
p.000047: organizations, and themselves. In addition to the obligations described in other sections of this document, obligations
p.000047: of foreign aid workers include the following:
p.000047:
...
Health / Physically Ill
Searching for indicator sick:
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p.000020: of health-care workers. As
p.000020: a result, deaths from tuberculosis, human immunodeficiency virus (HIV), and malaria increased dramatically during this
p.000020: period.10
p.000020:
p.000020: Governments, health-care facilities, and others involved in response efforts should
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020: prepare for such situations by developing guidelines on the allocation of scarce resources in outbreak situations. Such
p.000020: guidelines should be developed through an open and transparent process involving broad stakeholder input and, to the
p.000020: extent
p.000020: possible, should be incorporated into formal written documents that establish clear priorities and procedures. Those
p.000020: involved
p.000020: in developing these guidelines should be guided by the following considerations:
p.000020:
p.000020: • Balancing considerations of utility and equity — Resource allocation decisions should be guided by the ethical
p.000020: principles of utility and equity. The principle of utility requires allocating resources to maximize benefits and
p.000020: minimize burdens, while the principle of equity requires attention to the fair distribution of benefits
p.000020: and burdens. In some cases, an equal distribution of benefits and burdens may be considered fair, but in others, it may
p.000020: be fairer to give preference to groups that are worse off, such as the poor, the sick, or the vulnerable. It is not
p.000020: always be possible to achieve fully both utility and equity. For example, establishing treatment centres in large urban
p.000020: settings promotes the value of utility because it makes it possible to treat a large number of people with relatively
p.000020: few resources. However, such
p.000020: an approach may be in tension with the principle of equity if it means that fewer resources will be directed to
p.000020: isolated communities in remote rural areas.
p.000020: There is no single correct way to resolve potential tensions between utility
p.000020: and equity; what is important is that decisions are made through an inclusive and transparent process that takes into
p.000020: account local circumstances.
p.000020: • Defining utility on the basis of health-related considerations —
p.000020: In order to apply the ethical principle of utility, it is first necessary to identify the type of outcomes that will be
p.000020: counted as improvements to welfare. In general, the focus should be on the health-related benefits of allocation
p.000020: mechanisms, whether defined in terms 21
p.000020: of the total number of lives saved, the total number of life years saved, or the total number of quality-adjusted life
p.000020: years saved. For this reason,
p.000020: while it might be ethical to prioritize persons who are essential to manage an outbreak, it is not appropriate to
p.000020: prioritize persons based on social value considerations unrelated to carrying out critical services necessary for
p.000020: society.
p.000020:
...
p.000030: sites. Researchers have an obligation to share information collected as part of a study if it is important for the
p.000030: ongoing response efforts, such as information about hidden cases and transmission chains or resistance to response
p.000030: measures. Persons who share the information and those who receive it should protect the confidentiality of personal
p.000030: information to the maximum
p.000030: extent possible. As part of the informed consent process, researchers should inform potential participants about
p.000030: the circumstances under which their personal information might be shared with public health authorities.
p.000030:
p.000030: • Ensuring that research does not drain critical health-related resources — Research should not be done if it will
p.000030: excessively take
p.000030: away resources, including personnel, equipment, and health-care facilities, from other critical clinical and public
p.000030: health efforts. To the extent possible, research protocols should anticipate provisions for local capacity-building
p.000030: such as involving and training local contributors or, where possible, leaving behind any potentially useful tools or
p.000030: resources.
p.000030:
p.000030: • Confronting fear and desperation — The climate of fear and desperation typical of infectious disease outbreaks
p.000030: can make it difficult for ethics
p.000030: committees or prospective participants to engage in an objective assessment of the risks and benefits of research
p.000030: participation. In an environment where large numbers of individuals become sick and die, any potential intervention may
p.000030: be perceived to
p.000030: be better than nothing, regardless of the risks and potential benefits actually involved. Those responsible for
p.000030: approving research protocols
p.000030: should ensure that clinical trials are not initiated unless there is a reasonable scientific basis to believe that the
p.000030: experimental intervention is likely
p.000030: to be safe and efficacious, and that the risks have been minimized to the extent reasonably possible. In addition,
p.000030: researchers and ethics committees should recognize that, during an outbreak, prospective participants may be especially
p.000030: prone to the therapeutic misconception — that is, the mistaken view that the intervention is primarily designed to
p.000030: directly benefit the individual participants, as opposed to developing generalizable knowledge for the potential
p.000030: benefit of persons
p.000030: in the future. Indeed, researchers themselves, as well as humanitarian aid workers, may sometimes fail
p.000030: to distinguish between engaging in research and providing ordinary
p.000030: clinical care. Efforts should be made to dispel the therapeutic misconception to the extent reasonably possible.
p.000030: Despite such efforts, some prospective participants may still not fully appreciate the difference between research and
p.000030: ordinary medical care, and this should not in itself preclude their enrolment.
p.000030:
p.000030: • Addressing other barriers to informed consent — In addition to the impact of fear and desperation,
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
...
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: obligation to collect all scientifically relevant data on the safety and efficacy of the intervention as researchers
p.000035: overseeing a clinical trial. Knowledge generated through MEURI should be aggregated across patients if possible and
p.000035: shared transparently, completely and rapidly with the MEURI scientific advisory committee, public health authorities,
p.000035: physicians and researchers in the country, and the international medical and scientific community.
p.000035: Information should be described accurately, without overstating benefits or understating uncertainties or risks.
p.000035:
p.000035: • Importance of informed consent — Individuals who are offered MEURI should be made aware that the intervention
p.000035: might not benefit
p.000035: them and might even harm them. The process of obtaining informed consent to MEURI should be carried out in a
p.000035: culturally and linguistically sensitive manner, with an emphasis on the content and understandability of the
p.000035: information conveyed and the voluntariness of the patient’s decision.
p.000035: The ultimate choice of whether to receive the unproven intervention must rest with the patient, if the patient is
p.000035: in a condition to make the choice. If the patient is unconscious, cognitively impaired, or too sick to understand the
p.000035: information, proxy consent should be obtained from a family member or other authorized decision-maker.
p.000035:
p.000035: • Need for community engagement —
p.000035: MEURI must be sensitive to local norms and practices. One way to try to ensure such sensitivity is to use rapid
p.000035: “community engagement
p.000035: teams” to promote dialogue about the potential benefits and risks of receiving
p.000035: interventions that have not yet been tested in clinical trials.
p.000035:
p.000035: • Fair distribution in the face of scarcity — Compounds qualifying for MEURI may not be available in large
p.000035: quantities. In this situation, choices will have to be made about who receives
p.000035: each intervention. Countries should 37
p.000035: establish mechanisms for making these allocation decisions, taking into account the assessment of the MEURI Scientific
p.000035: Advisory Committee and the principles discussed in Guideline 4.
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: 10. Rapid data sharing
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000038: 38
p.000038: Questions addressed:
p.000038:
p.000038: • Why is rapid data sharing essential during an infectious disease outbreak?
p.000038: • What are the key ethical issues related to rapid data sharing?
p.000038:
p.000038:
p.000038:
p.000038:
p.000038:
p.000038: The collection and sharing of data are essential parts of ordinary public health practice. During an infectious disease
p.000038: outbreak, data sharing takes on increased urgency because of the uncertain and ever-changing scientific information;
...
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: may have precarious employment contracts with no social protection, or work on
p.000043: a volunteer basis.
p.000043:
p.000043: Regardless of whether a particular individual has a pre-existing duty to assume
p.000043: heightened risks during an infectious disease outbreak, once a worker has taken on these
p.000043: 44 risks, society has a reciprocal obligation to
p.000043: provide necessary support. At a minimum, fulfilment of society’s reciprocal obligations to frontline workers requires
p.000043: the following actions:
p.000043:
p.000043: • Minimizing the risk of infection —
p.000043: Individuals should not be expected to take on risky work assignments
p.000043: during an infectious disease outbreak unless they are provided with
p.000043: the training, tools, and resources necessary to minimize the risks to the extent reasonably possible. This includes
p.000043: complete and accurate information known about the nature
p.000043: of the pathogen and infection control measures, updated information on the epidemiological situation at the local
p.000043: level, and the provision of personal protective equipment. Regular screening of frontline workers should be put
p.000043: in place to detect any infection as quickly as possible, in order to initiate immediate care and minimize the risk of
p.000043: transmission to colleagues, patients, families, and community members.
p.000043:
p.000043: • Priority access to health care — Frontline workers who become sick, as well as any immediate family members who
p.000043: become ill through contact with the worker, should be ensured access to the highest level of care reasonably available.
p.000043: In addition, countries should consider giving frontline workers and their families priority access to vaccines
p.000043: and other treatments as they become available.
p.000043:
p.000043: • Appropriate remuneration — Frontline workers should be given fair remuneration for their work. Governments should
p.000043: ensure that public sector workers are paid in
p.000043: a timely manner, and make efforts to ensure that actors in the private and nongovernmental sectors fulfil their own
p.000043: obligations to pay their employees and contractors. Fair remuneration for frontline workers includes the provision of
p.000043: financial support during periods in which workers are unable to carry out their normal responsibilities because of an
p.000043: infection acquired on the job.
p.000043:
p.000043: • Support for reintegrating into the community — Frontline workers may experience stigma and discrimination,
p.000043: particularly those involved in unpopular measures such as infection control or burials not conducted according to
p.000043: the traditional customs. Governments should make efforts to reduce the risk of stigmatization and discrimination and
...
Health / Pregnant
Searching for indicator pregnant:
(return to top)
p.000041: • How should appropriate reproductive health-care services be safely provided during an infectious disease
p.000041: outbreak?
p.000041: • How are sex and gender relevant to communication strategies during outbreaks?
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: Sex (biological and physiological characteristics) and gender (socially constructed roles, behaviours, activities, and
p.000041: attributes)20 can influence the spread, containment, course, and consequences of infectious disease outbreaks. Sex and
p.000041: gender differences have been associated with differences in susceptibility to infection, levels of health care
p.000041: received, and in the course and outcome of illness.21 Addressing sex and gender differences in infectious disease
p.000041: outbreak planning and response efforts requires attention to the following considerations:
p.000041:
p.000041: • Sex- and gender-inclusive surveillance programmes — Public health surveillance should systematically collect
p.000041: disaggregated information on sex, gender, and pregnancy status, both to identify differential risks and
p.000041: modes of transmission, and to monitor any differential impact of an infectious disease outbreak and the interventions
p.000041: used to control it. This information is particularly important for pregnant women and their offspring.
p.000041:
p.000041: • Ensuring the availability of high- quality reproductive health-care services — Whether or not they are currently
p.000041: pregnant, women of childbearing age should have access to the full range of high-quality
p.000041: reproductive health-care services during an infectious disease outbreak. These services should be organized and
p.000041: delivered in a manner that does not stigmatize persons who use them or expose them to a heightened risk of infection
p.000041: with the outbreak pathogen. If there is evidence that an infectious
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: disease creates special risks for pregnant women or their fetus, both men and women should be informed of these risks
p.000041: and have access to safe methods to minimize them, along with reproductive counselling services.
p.000041:
p.000041: • Sex- and gender-inclusive research
p.000041: 42 strategies — Researchers should make efforts to ensure that studies do not disproportionately
p.000041: favour a particular sex or gender, and that women who are or might become pregnant are not inappropriately excluded
p.000041: from research participation. During an outbreak, research on experimental treatments and preventive measures should
p.000041: seek to identify any sex- or gender-related differences in outcomes.
p.000041:
p.000041: • Attention to social and cultural practices — Gender-related roles and practices can affect all aspects of
p.000041: infectious disease outbreaks, including
p.000041: individuals’ risk of becoming infected, the consequences of infection, their use of health services and other
p.000041: health-seeking behaviours, and their vulnerability to interpersonal violence.
p.000041: Policy-makers and outbreak responders should identify and respond to these factors, drawing when possible
p.000041: on relevant anthropological and sociological research.
p.000041:
p.000041: • Sex- and gender-sensitive communication strategies —
p.000041: Entities responsible for developing and implementing communication strategies should be sensitive to sex- and gender-
p.000041: based differences in how individuals have access to and respond to health- related information. Separate messages and
p.000041: communication strategies may be needed to provide relevant information to particular subgroups, such as pregnant women
p.000041: or nursing mothers.
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: Influenza in India
p.000041: Source: Tom Pietrasik, WHO
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: 13. Frontline response workers’ rights and obligations
p.000041:
p.000041:
p.000041:
p.000043: 43
p.000043: Questions addressed:
p.000043:
p.000043: • What obligations exist to protect the health of frontline workers who participate in infectious disease outbreak
p.000043: response efforts?
p.000043: • What obligations exist to provide material support to frontline workers who participate in infectious disease
p.000043: outbreak response efforts?
p.000043: • To what extent do these obligations extend to the workers’ family?
p.000043: • What should be taken into account in determining whether individuals have an obligation to serve as frontline
p.000043: workers during infectious disease outbreaks?
p.000043: • What special obligations do workers in the health-care sector have during infectious disease outbreaks?
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: An effective infectious disease outbreak response depends on the contribution of
p.000043: a diverse range of frontline workers, some of whom may be working on a volunteer basis. These workers often assume
...
Health / Unconscious People
Searching for indicator unconscious:
(return to top)
p.000035: according to good manufacturing practices should be used for MEURI.
p.000035:
p.000035: • Collection and sharing of meaningful data — Physicians overseeing MEURI have the same moral
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: obligation to collect all scientifically relevant data on the safety and efficacy of the intervention as researchers
p.000035: overseeing a clinical trial. Knowledge generated through MEURI should be aggregated across patients if possible and
p.000035: shared transparently, completely and rapidly with the MEURI scientific advisory committee, public health authorities,
p.000035: physicians and researchers in the country, and the international medical and scientific community.
p.000035: Information should be described accurately, without overstating benefits or understating uncertainties or risks.
p.000035:
p.000035: • Importance of informed consent — Individuals who are offered MEURI should be made aware that the intervention
p.000035: might not benefit
p.000035: them and might even harm them. The process of obtaining informed consent to MEURI should be carried out in a
p.000035: culturally and linguistically sensitive manner, with an emphasis on the content and understandability of the
p.000035: information conveyed and the voluntariness of the patient’s decision.
p.000035: The ultimate choice of whether to receive the unproven intervention must rest with the patient, if the patient is
p.000035: in a condition to make the choice. If the patient is unconscious, cognitively impaired, or too sick to understand the
p.000035: information, proxy consent should be obtained from a family member or other authorized decision-maker.
p.000035:
p.000035: • Need for community engagement —
p.000035: MEURI must be sensitive to local norms and practices. One way to try to ensure such sensitivity is to use rapid
p.000035: “community engagement
p.000035: teams” to promote dialogue about the potential benefits and risks of receiving
p.000035: interventions that have not yet been tested in clinical trials.
p.000035:
p.000035: • Fair distribution in the face of scarcity — Compounds qualifying for MEURI may not be available in large
p.000035: quantities. In this situation, choices will have to be made about who receives
p.000035: each intervention. Countries should 37
p.000035: establish mechanisms for making these allocation decisions, taking into account the assessment of the MEURI Scientific
p.000035: Advisory Committee and the principles discussed in Guideline 4.
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: 10. Rapid data sharing
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000038: 38
p.000038: Questions addressed:
p.000038:
p.000038: • Why is rapid data sharing essential during an infectious disease outbreak?
p.000038: • What are the key ethical issues related to rapid data sharing?
p.000038:
p.000038:
p.000038:
p.000038:
p.000038:
p.000038: The collection and sharing of data are essential parts of ordinary public health practice. During an infectious disease
...
Health / ill
Searching for indicator ill:
(return to top)
p.000043: a volunteer basis.
p.000043:
p.000043: Regardless of whether a particular individual has a pre-existing duty to assume
p.000043: heightened risks during an infectious disease outbreak, once a worker has taken on these
p.000043: 44 risks, society has a reciprocal obligation to
p.000043: provide necessary support. At a minimum, fulfilment of society’s reciprocal obligations to frontline workers requires
p.000043: the following actions:
p.000043:
p.000043: • Minimizing the risk of infection —
p.000043: Individuals should not be expected to take on risky work assignments
p.000043: during an infectious disease outbreak unless they are provided with
p.000043: the training, tools, and resources necessary to minimize the risks to the extent reasonably possible. This includes
p.000043: complete and accurate information known about the nature
p.000043: of the pathogen and infection control measures, updated information on the epidemiological situation at the local
p.000043: level, and the provision of personal protective equipment. Regular screening of frontline workers should be put
p.000043: in place to detect any infection as quickly as possible, in order to initiate immediate care and minimize the risk of
p.000043: transmission to colleagues, patients, families, and community members.
p.000043:
p.000043: • Priority access to health care — Frontline workers who become sick, as well as any immediate family members who
p.000043: become ill through contact with the worker, should be ensured access to the highest level of care reasonably available.
p.000043: In addition, countries should consider giving frontline workers and their families priority access to vaccines
p.000043: and other treatments as they become available.
p.000043:
p.000043: • Appropriate remuneration — Frontline workers should be given fair remuneration for their work. Governments should
p.000043: ensure that public sector workers are paid in
p.000043: a timely manner, and make efforts to ensure that actors in the private and nongovernmental sectors fulfil their own
p.000043: obligations to pay their employees and contractors. Fair remuneration for frontline workers includes the provision of
p.000043: financial support during periods in which workers are unable to carry out their normal responsibilities because of an
p.000043: infection acquired on the job.
p.000043:
p.000043: • Support for reintegrating into the community — Frontline workers may experience stigma and discrimination,
p.000043: particularly those involved in unpopular measures such as infection control or burials not conducted according to
p.000043: the traditional customs. Governments should make efforts to reduce the risk of stigmatization and discrimination and
p.000043: help such workers to reintegrate into the community, including by providing job placement assistance and relocation to
p.000043: other communities if needed.
p.000043:
...
p.000047: the local government, and have ongoing discussions among themselves and with the local government to clarify and
p.000047: coordinate their roles
p.000047: and responsibilities and address any disparities in standards of practice. Efforts should be coordinated with local
p.000047: authorities and care providers to
p.000047: ensure that the foreign agency does not excessively draw resources away from other essential services.
p.000047:
p.000047: • Fairness in assigning foreign workers for deployment — Foreign aid workers should be deployed only if they are
p.000047: capable of providing necessary services not sufficiently available in the local setting. Assignment of foreign
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047: health workers should take into consideration their relevant skills and knowledge, as well as their linguistic and
p.000047: cultural competencies to meet mission objectives and understand and communicate with affected communities. It is
p.000047: inappropriate to deploy unqualified or unnecessary
p.000047: 48 workers solely to satisfy their personal
p.000047: or professional desire to be helpful (so-called “disaster tourism”).
p.000047:
p.000047: • Clarity about conditions of deployment — Prospective foreign aid workers should be given
p.000047: comprehensive information about the project’s expectations and risks so they can make informed decisions about whether
p.000047: or not they will be able to make appropriate contributions. In addition, foreign aid workers should be clearly
p.000047: informed of the conditions of their deployment, including the level of health care they can expect if they become ill,
p.000047: the circumstances under
p.000047: which they will be repatriated, available insurance, and whether benefits will
p.000047: be provided to their families in case of illness or death.
p.000047:
p.000047: • Provision of necessary training and resources — Aid workers must be provided with appropriate
p.000047: training, preparation, and equipment to ensure that they can effectively carry out their mission with the lowest risks
p.000047: practicable. Training should include preparation in psychosocial and communication skills, and in understanding and
p.000047: respecting the local culture and traditions. Managers and organizations have an obligation to provide adequate support
p.000047: and guidance to the staff, both during their activity in the field and following
p.000047: their mission. This should include training and resources for managing challenging ethical issues, such as resource
p.000047: allocation decisions, triage, and inequities.
p.000047:
p.000047: • Ensuring the security and safety of aid workers — Organizations that deploy foreign aid workers have an
p.000047: obligation to take all necessary measures to ensure the workers’ security, particularly in situations of crisis; this
p.000047: obligation includes the provision of measures to reduce risks of exposure to infectious agents, contamination and
p.000047: violence. A clear chain of authority must be in place to provide oversight and ongoing advice. Individuals who object
p.000047: to assigned duties should have an opportunity for review and appeal, according to the norms of the organizations for
p.000047: which they work.
p.000047:
p.000047: Aid workers also have their own ethical obligations to patients, affected communities, their sponsoring
...
Health / of childbearing age/fertile
Searching for indicator childbearing age:
(return to top)
p.000041: Sex (biological and physiological characteristics) and gender (socially constructed roles, behaviours, activities, and
p.000041: attributes)20 can influence the spread, containment, course, and consequences of infectious disease outbreaks. Sex and
p.000041: gender differences have been associated with differences in susceptibility to infection, levels of health care
p.000041: received, and in the course and outcome of illness.21 Addressing sex and gender differences in infectious disease
p.000041: outbreak planning and response efforts requires attention to the following considerations:
p.000041:
p.000041: • Sex- and gender-inclusive surveillance programmes — Public health surveillance should systematically collect
p.000041: disaggregated information on sex, gender, and pregnancy status, both to identify differential risks and
p.000041: modes of transmission, and to monitor any differential impact of an infectious disease outbreak and the interventions
p.000041: used to control it. This information is particularly important for pregnant women and their offspring.
p.000041:
p.000041: • Ensuring the availability of high- quality reproductive health-care services — Whether or not they are currently
p.000041: pregnant, women of childbearing age should have access to the full range of high-quality
p.000041: reproductive health-care services during an infectious disease outbreak. These services should be organized and
p.000041: delivered in a manner that does not stigmatize persons who use them or expose them to a heightened risk of infection
p.000041: with the outbreak pathogen. If there is evidence that an infectious
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: disease creates special risks for pregnant women or their fetus, both men and women should be informed of these risks
p.000041: and have access to safe methods to minimize them, along with reproductive counselling services.
p.000041:
p.000041: • Sex- and gender-inclusive research
p.000041: 42 strategies — Researchers should make efforts to ensure that studies do not disproportionately
p.000041: favour a particular sex or gender, and that women who are or might become pregnant are not inappropriately excluded
p.000041: from research participation. During an outbreak, research on experimental treatments and preventive measures should
p.000041: seek to identify any sex- or gender-related differences in outcomes.
p.000041:
...
Health / patients in emergency situations
Searching for indicator emergencies:
(return to top)
p.000039: outbreaks 52
p.000039: Annex 2. Participants at meetings to formulate Guidance for managing ethical issues in infectious disease outbreaks
p.000055: 55
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055: Foreword
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055: Infectious disease outbreaks are periods of great uncertainty. Events unfold, resources and capacities that are often
p.000055: limited
p.000055: are stretched yet further, and decisions for a public health response must be made quickly, even though the evidence
p.000055: for decision-making may be scant. In such a situation, public health officials, policy-makers, funders, researchers,
p.000055: field epidemiologists, first responders, national
p.000055: ethics boards, health-care workers, and public health practitioners need a moral compass
p.000055: to guide them in their decision-making. Bioethics puts people at the heart of the problem, emphasizes the principles
p.000055: that should guide health systems, and provides the moral rationale for making choices, particularly in a crisis.
p.000055:
p.000055: I therefore welcome the development of the Guidance for managing ethical issues in infectious disease outbreaks, which
p.000055: will be key to embedding ethics within the integrated global alert and response system for epidemics and other public
p.000055: health emergencies. The publication will also
p.000055: support and strengthen the implementation and uptake of policies and programmes in this context.
p.000055:
p.000055: Research is an integral part of the public health response – not only to learn about the current epidemic but also to
p.000055: build an evidence base for future epidemics. Research during
p.000055: an epidemic ranges from epidemiological and socio-behavioral to clinical trials and toxicity studies, all of which are
p.000055: crucial. I am pleased
p.000055: to see that the guidance touches upon this 3
p.000055: important area with advice, not only on research and emergency use of unproven interventions, but also on rapid data
p.000055: sharing see: http://www.who.int/ihr/procedures/ SPG_data_sharing.pdf?ua=1.
p.000055:
p.000055: The importance given to communication during an infectious disease outbreak can make or break public health efforts,
p.000055: and WHO takes this very seriously. This
p.000055: document outlines the ethical principles that should guide communication planning and implementation at every level
p.000055: from frontline workers to policy-makers.
p.000055:
p.000055: The guidance represents the work of an international group of stakeholders and experts, including public health
p.000055: practitioners in charge of response management at
p.000055: the local, national and international level; nongovernmental organization representatives; directors of funding
p.000055: agencies; chairs of ethics committees; heads of research laboratories; representatives
p.000055: of national regulatory agencies; patient representatives; and experts in public health ethics, bioethics, human rights,
...
p.000017: to necessary resources such as clean water or bednets to reduce the risk of contracting a mosquito-borne disease.
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: • Need for effective alternative communication strategies — Some types of vulnerability can impede
p.000017: an individual’s ability to transmit or receive information. Communication barriers can stem from a wide range of
p.000017: factors including, but not limited to, illiteracy, unfamiliarity with the
p.000017: 18 local or official language(s), vision or
p.000017: hearing impairments, social isolation, or lack of access to Internet and other communication services. These barriers
p.000017: make it difficult for individuals to receive necessary public health messages
p.000017: or to participate fully in community engagement activities. To overcome these barriers, messages should be delivered in
p.000017: multiple formats (e.g. radio, text messages, billboards, cartoons) as well as direct oral communication with key
p.000017: stakeholders. Health authorities should not assume that the public will search for information; instead, they should
p.000017: proactively reach out to the concerned population wherever they are.
p.000017:
p.000017: • Impact of stigmatization and discrimination — Members of socially disadvantaged groups often face considerable
p.000017: stigma and discrimination, which can be exacerbated in public health emergencies characterized by fear and distrust.
p.000017: Those responsible for infectious disease outbreak response should ensure that all individuals are treated fairly and
p.000017: equitably regardless of their social status or perceived “worth” to society. They should also take measures to prevent
p.000017: stigmatization and social violence.
p.000017:
p.000017: • Disproportionate burdens of outbreak response measures — Even when public health measures
p.000017: are designed with the best of intentions, they can inadvertently place a disproportionate burden on particular
p.000017: populations. For example, quarantine orders that require individuals to stay
p.000017: in their homes can have devastating consequences for persons who need to leave their homes to obtain basic
p.000017: necessities such as clean water or food. Similarly, social distancing measures such as school closures can place
p.000017: disproportionate burdens on children who depend on going to school to access regular meals, as well as on working
p.000017: parents who may have no one available to provide child care.
p.000017:
p.000017: • Greater need for resources — Accommodating the needs of individuals whose situation makes them particularly
p.000017: vulnerable sometimes requires the use of additional resources.
p.000017: In some cases, additional resources are relatively minimal, such as when an interpreter is hired to make
...
p.000050: Committee on Economic, Social and Cultural Rights (E/C. 12/2000/4 – 2000; www1.umn.edu/
p.000050: humanrts/gencomm/escgencom14.htm, accessed 23 July 2016).
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050: 10 Parpia AS, Ndeffo-Mbah ML, Wenzel NS, Galvani AP. Effects of response to the 2014–2015 Ebola outbreak on deaths
p.000050: from malaria, HIV/AIDS, and tuberculosis, West Africa. Emerg Infect Dis. 2016;22(3)
p.000050: (http://dx.doi.org/10.3201/eid2203.150977, accessed 23 July 2016).
p.000050:
p.000050: 11 Declaration of Helsinki – Ethical principles for medical research involving human subjects, revised October 2013
p.000050: Ferney-Voltaire: World Medical Association; 2013 (www.wma.net/ en/30publications/10policies/b3/index.html, accessed 23
p.000050: July 2016).
p.000050:
p.000050: 12 International ethical guidelines for biomedical research involving human subjects.
p.000050: Geneva: Council for International Organizations of Medical Sciences; 2002 (www.cioms. 51
p.000050: ch/publications/guidelines/guidelines_nov_2002_blurb.htm, accessed 23 July 2016).
p.000050:
p.000050: 13 Standards and operational guidance for ethics review of health-related research with human participants. Geneva:
p.000050: World Health Organization; 2011 (www.who.int/ethics/ publications/9789241502948/en/, accessed 23 July 2016).
p.000050:
p.000050: 14 Ethics in epidemics, emergencies and disasters: Research, surveillance and patient care.
p.000050: Geneva: World Health Organization; 2015 (who.int/ethics/publications/epidemics- emergencies-research/en/, accessed 23
p.000050: July 2016).
p.000050:
p.000050: 15 Research ethics in international epidemic response. Geneva: World Health Organization; 2009 (WHO/HSE/GIP/ITP/10.1;
p.000050: www.who.int/ethics/gip_research_ethics_.pdf, accessed 23 July 2016).
p.000050:
p.000050: 16 Developing global norms for sharing data and results during public health emergencies. Geneva: World Health
p.000050: Organization; 2015 (www.who.int/medicines/ebola-treatment/ blueprint_phe_data-share-results/en/, accessed 23 July
p.000050: 2016).
p.000050:
p.000050: 17 Overlapping publications. International Committee of Medical Journal Editors (www.
p.000050: icmje.org/recommendations/browse/publishing-and-editorial-issues/overlapping- publications.html, accessed 23 July
p.000050: 2016).
p.000050:
p.000050: 18 Ethical issues related to study design for trials on therapeutics for Ebola Virus Disease.
p.000050: 2014. Report of the WHO Ethics Working Group meeting, 20–21 October 2014. Geneva: World Health Organization; 2014
p.000050: (WHO/HIS/KER/GHE/14.2; http://apps.who.int/iris/ bitstream/10665/137509/1/WHO_HIS_KER_GHE_14.2_eng.pdf, accessed 23
p.000050: July 2016).
p.000050:
p.000050: 19 Dye C, Bartolomeos K, Moorthy V, Kieny MP. Data sharing in public health emergencies: a call to researchers. Bull
p.000050: World Health Organ. 2016;1:94(3):158. doi: 10.2471/ BLT.16.170860
p.000050: (www.who.int/bulletin/volumes/94/3/16-170860.pdf?ua=1).
p.000050:
p.000050: 20 Gender, women and health. In: WHO [website]. Geneva: World Health Organization
p.000050: (http://apps.who.int/gender/whatisgender/en/, accessed 23 July 2016).
p.000050:
p.000050: 21 Addressing sex and gender in epidemic-prone infectious diseases. Geneva: World Health Organization; 2007
p.000050: (www.who.int/csr/resources/publications/SexGenderInfectDis.pdf).
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050: Annex 1. Ethics guidance documents that contributed to the Guidance for managing ethical issues in infectious disease
p.000050: outbreaks
p.000050:
p.000050:
p.000050: WHO guidance documents
p.000050:
p.000050: 52 Addressing ethical issues in pandemic influenza planning: Discussion papers. Geneva: World Health
p.000050: Organization; 2008 (WHO/HSE/EPR/GIP/2008.2, WHO/IER/ETH/2008.1; http://apps.
p.000050: who.int/iris/bitstream/10665/69902/1/WHO_IER_ETH_2008.1_eng.pdf?ua=1).
p.000050:
p.000050: Ethical considerations for use of unregistered interventions for Ebola viral disease. Report of an advisory panel to
p.000050: WHO. Geneva: World Health Organization; 2014 (WHO/HIS/KER/ GHE/14.1;
p.000050: http://apps.who.int/iris/bitstream/10665/130997/1/WHO_HIS_KER_GHE_14.1_ eng.pdf?ua=1).
p.000050:
p.000050: Ethical considerations in developing a public health response to pandemic influenza. Geneva: World Health Organization;
p.000050: 2007 (WHO/CDS/EPR/GIP/2007.2; http://www.who.int/ csr/resources/publications/WHO_CDS_EPR_GIP_2007_2c.pdf?ua=1).
p.000050:
p.000050: Ethical issues related to study design for trials on therapeutics for Ebola virus disease. WHO Ethics Working Group
p.000050: Meeting, 20–21 October 2014. Geneva: World Health Organization; 2014 (WHO/HIS/KER/GHE/14.2;
p.000050: http://apps.who.int/iris/bitstream/10665/137509/1/WHO_ HIS_KER_GHE_14.2_eng.pdf?ua=1).
p.000050:
p.000050: Ethics of using convalescent whole blood and convalescent plasma during the Ebola epidemic: Interim guidance for ethics
p.000050: review committees, researchers, national health authorities and blood transfusion services. Geneva: World Health
p.000050: Organization; 2015 (http://apps.who.int/iris/bitstream/10665/161912/1/WHO_HIS_KER_GHE_15.1_eng. pdf?ua=1&ua=1).
p.000050:
p.000050: Ethics in epidemics, emergencies and disasters: Research, surveillance and patient care: Training manual. Geneva: World
p.000050: Health Organization; 2015 (http://apps.who.int/iris/ bitstream/10665/196326/1/9789241549349_eng.pdf?ua=1).
p.000050:
p.000050: Guidance on ethics of tuberculosis prevention, care and control. Geneva: World Health Organization; 2010
p.000050: (http://apps.who.int/iris/bitstream/10665/44452/1/9789241500531_ eng.pdf?ua=1).
p.000050:
p.000050: Research ethics in international epidemic response: WHO Technical Consultation. Geneva: World Health Organization; 2009
p.000050: (www.who.int/ethics/gip_research_ethics_.pdf).
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050: Standards and operational guidance for ethics review of health-related research with human participants. Geneva: World
p.000050: Health Organization; 2011 (http://apps.who.int/iris/ bitstream/10665/44783/1/9789241502948_eng.pdf?ua=1&ua=1).
p.000050:
p.000050: National guidance/opinion papers
p.000050:
p.000050: Allocation of ventilators in an influenza pandemic: Planning document. New York State Task Force on Life and the Law;
p.000050: 2007 (www.cidrap.umn.edu/sites/default/files/public/
p.000050: php/196/196_guidance.pdf).
p.000053: 53
p.000053:
p.000053: Altevogt BM, Stroud C, Hanson S, Hanfling D, Gostin LO, editors. Guidance for establishing crisis standards of care for
p.000053: use in disaster situations: A letter report. Washington: National Academies Press; 2009
p.000053: (www.nap.edu/read/12749/chapter/1).
p.000053:
...
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p.000006: that had arisen in other global infectious disease outbreaks, including severe acute respiratory syndrome (SARS),
p.000006: pandemic influenza, and multidrug-resistant tuberculosis. However, while WHO has issued ethical guidance
p.000006: on some of these outbreaks,2,3,4,5 prior guidance has only focused on the specific pathogen in isolation. The purpose
p.000006: of this document is to look beyond issues specific to particular epidemic pathogens and instead focus on the
p.000006: cross-cutting ethical issues that apply to infectious disease outbreaks generally. In addition to setting forth general
p.000006: principles, it examines how these principles can be adapted to different epidemiological and social circumstances.
p.000006:
p.000006: While many of the ethical issues that arise in infectious disease outbreaks are the same as those that arise in other
p.000006: areas of public health, the context of 7
p.000006: an outbreak has particular complexities. Decisions during an outbreak need to be made on an urgent basis, often in the
p.000006: context of scientific uncertainty, social and institutional disruption, and an overall climate of fear and distrust.
p.000006: Invariably,
p.000006: the countries most affected by outbreaks have limited resources, underdeveloped legal and regulatory structures, and
p.000006: health systems that lack the resilience to deal with crisis situations. Countries that experience natural disasters and
p.000006: armed conflicts are particularly at risk, as these circumstances simultaneously increase the risk of infectious disease
p.000006: outbreaks while
p.000006: decreasing needed resources and access to health care. Moreover, infectious disease outbreaks can generate or
p.000006: exacerbate social crises that can weaken already fragile health systems. Within such contexts, it
p.000006: is not possible to satisfy all urgent needs simultaneously, forcing decision-makers to weigh and prioritize potentially
p.000006: competing ethical values. Time pressures and resource constraints may force action without
p.000006: the thorough deliberation, inclusiveness and transparency that a robust ethical decision-making process demands.
p.000006:
p.000006: This guidance document on ethical issues that arise specifically in the context of infectious disease outbreaks aims to
p.000006: complement existing guidance on ethics in public health. It should therefore be read in conjunction with more general
p.000006: guidance on issues such as public health surveillance,
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006: research with human participants, and addressing the needs of vulnerable populations.
p.000006:
p.000006: Setting up decision-making systems and procedures in advance is the best way to ensure that ethically appropriate
p.000006: decisions will be made if an outbreak
p.000006: 8 occurs. Countries, health-care institutions,
p.000006: international organizations and others involved in epidemic response efforts are encouraged to develop practical
p.000006: strategies and tools to apply the principles in this guidance document to their specific settings, taking into account
p.000006: local social, cultural, and political contexts. WHO is committed to providing countries with technical assistance in
...
p.000013: obligation to ensure the long-term capacity of the systems necessary to carry out effective epidemic prevention and
p.000013: response efforts.
p.000013:
p.000013: Countries have obligations not only to persons within their own borders but also to the broader international
p.000013: community. As the United Nations Committee on
p.000013:
p.000013: Economic, Social and Cultural Rights has recognized, “given that some diseases are easily transmissible beyond the
p.000013: frontiers of a State, the international community has a collective responsibility to address this problem. The
p.000013: economically developed States Parties have a special responsibility
p.000013: and interest to assist the poorer developing States in this regard.”9
p.000013:
p.000013: These obligations reflect the practical reality that infectious disease outbreaks do not respect national borders, and
p.000013: that an outbreak in one country can put the rest of the world at risk.
p.000013:
p.000013: Countries’ obligations to consider the needs of the international community do not arise solely in times of emergency.
p.000013: Instead, they require ongoing attention to ameliorate the social determinants of poor
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013: health that contribute to infectious disease outbreaks, including poverty, limited access to education, and inadequate
p.000013: systems of water and sanitation.
p.000013:
p.000013: The following are key elements of the obligations of governments and the international community:
p.000014: 14
p.000014: • Ensuring the sufficiency of national public health laws — As discussed later in this document, certain public
p.000014: health interventions that might be necessary during an infectious disease outbreak (e.g. restrictions on freedom of
p.000014: movement) depend on having a clear legal basis for government action, as well as a system in place to provide oversight
p.000014: and review. All countries should review their public health laws to ensure that they give the government sufficient
p.000014: authority to respond effectively to an epidemic while also providing individuals with appropriate human rights
p.000014: protections.
p.000014:
p.000014: • Participating in global surveillance and preparedness efforts —
p.000014: All countries must carry out their responsibilities under the IHR to participate in global surveillance efforts in a
p.000014: truthful and transparent manner. This includes providing prompt notification of events that may constitute a public
p.000014: health emergency of international concern, regardless
p.000014: of any negative consequences that may be associated with notification, such as a possible reduction in trade or
p.000014: tourism. The obligation to provide
p.000014: prompt notification to the international community stems not only from the text of the IHR but also from the ethical
p.000014: principles of solidarity and reciprocity. In addition, countries should develop
p.000014: preparedness plans for infectious disease outbreaks and other potential disasters and provide guidance to relevant
...
p.000015: to include them in community engagement plans.
p.000015:
p.000015: • Openness to diverse perspectives — Communication efforts should be designed to facilitate a genuine
p.000015: two-way dialogue, rather than as merely a means to announce decisions
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015: that have already been made. Decision-makers should be prepared to recognize and debate alternative approaches and
p.000015: revise their decisions based on information they receive. Reaching out to the community early, and allowing for
p.000015: consideration of
p.000015: the interests of all people who will
p.000015: 16 potentially be affected, can play an important role in building trust and empowering communities to
p.000015: be involved in a genuine dialogue.
p.000015:
p.000015: • Transparency — The ethical principle of transparency requires that decision-makers publicly explain the basis for
p.000015: decisions in language that is
p.000015: linguistically and culturally appropriate.
p.000015: When decisions must be made in the face of uncertain information, the uncertainties should be explicitly acknowledged
p.000015: and conveyed to the public.
p.000015:
p.000015: • Accountability — The public should know who is responsible for making
p.000015: and implementing decisions in relation to the outbreak response, and how they can challenge decisions they believe are
p.000015: inappropriate.
p.000015:
p.000015: The media will play an important role in any infectious disease outbreak response effort. It is therefore important to
p.000015: ensure that the media has access to accurate and timely information about the disease and its management. Governments,
p.000015: nongovernmental organizations, and
p.000015: academic institutions should make efforts to support media training in relevant scientific concepts and techniques for
p.000015: communicating risk information without raising unnecessary alarm. Media training is important for public health sector
p.000015: employees who may interact with media covering public health issues.
p.000015: In turn, the media has a responsibility to provide accurate, factual, and balanced reporting. This is an important
p.000015: component of media ethics.
p.000015:
p.000015:
p.000015: Cholera outbreak in Sierra Leone
p.000015: Source: Fid Thompson
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015: 3. Situations of particular vulnerability
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000017: 17
p.000017: Questions addressed:
p.000017:
p.000017: • Why are some individuals and groups considered particularly vulnerable during infectious disease outbreaks?
p.000017: • How can vulnerability affect a person’s ability to access services during infectious disease outbreaks?
p.000017: • How can vulnerability affect a person’s willingness and ability to share and receive information during an
p.000017: infectious disease outbreak?
p.000017: • Why are stigmatization and discrimination particular risks during infectious disease outbreaks?
p.000017: • In what ways might vulnerable persons suffer disproportionate burdens from infectious disease response efforts,
p.000017: or have a greater need for resources?
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: Some individuals and groups face heightened susceptibility to harm or injustice during infectious disease outbreaks.
p.000017: Policy-makers and epidemic responders should develop plans to address the needs of such individuals and groups in
p.000017: advance of an outbreak and,
p.000017: if an outbreak occurs, make reasonable efforts to ensure that these needs are actually met. Doing this requires ongoing
p.000017: attention to community engagement and the development of active social networks between community representatives and
p.000017: government actors.
p.000017:
p.000017: Efforts to address the ways in which individuals and groups may be vulnerable should take into account the following:
p.000017: • Difficulty accessing services and resources — Many of the
p.000017: characteristics that contribute to social vulnerability can make it difficult
p.000017: for individuals to access necessary services. For example, persons with physical disabilities may have mobility
p.000017: impairments that make travelling even short distances difficult or impossible.
p.000017: Other socially vulnerable persons may lack access to safe and reliable transportation or have caregiving
p.000017: responsibilities that make it difficult for them to leave their homes. In addition, vulnerable persons may lack access
p.000017: to necessary resources such as clean water or bednets to reduce the risk of contracting a mosquito-borne disease.
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: • Need for effective alternative communication strategies — Some types of vulnerability can impede
p.000017: an individual’s ability to transmit or receive information. Communication barriers can stem from a wide range of
p.000017: factors including, but not limited to, illiteracy, unfamiliarity with the
p.000017: 18 local or official language(s), vision or
p.000017: hearing impairments, social isolation, or lack of access to Internet and other communication services. These barriers
p.000017: make it difficult for individuals to receive necessary public health messages
p.000017: or to participate fully in community engagement activities. To overcome these barriers, messages should be delivered in
p.000017: multiple formats (e.g. radio, text messages, billboards, cartoons) as well as direct oral communication with key
p.000017: stakeholders. Health authorities should not assume that the public will search for information; instead, they should
p.000017: proactively reach out to the concerned population wherever they are.
p.000017:
p.000017: • Impact of stigmatization and discrimination — Members of socially disadvantaged groups often face considerable
p.000017: stigma and discrimination, which can be exacerbated in public health emergencies characterized by fear and distrust.
p.000017: Those responsible for infectious disease outbreak response should ensure that all individuals are treated fairly and
p.000017: equitably regardless of their social status or perceived “worth” to society. They should also take measures to prevent
p.000017: stigmatization and social violence.
p.000017:
p.000017: • Disproportionate burdens of outbreak response measures — Even when public health measures
p.000017: are designed with the best of intentions, they can inadvertently place a disproportionate burden on particular
p.000017: populations. For example, quarantine orders that require individuals to stay
p.000017: in their homes can have devastating consequences for persons who need to leave their homes to obtain basic
p.000017: necessities such as clean water or food. Similarly, social distancing measures such as school closures can place
p.000017: disproportionate burdens on children who depend on going to school to access regular meals, as well as on working
p.000017: parents who may have no one available to provide child care.
p.000017:
p.000017: • Greater need for resources — Accommodating the needs of individuals whose situation makes them particularly
p.000017: vulnerable sometimes requires the use of additional resources.
p.000017: In some cases, additional resources are relatively minimal, such as when an interpreter is hired to make
p.000017: a community engagement forum accessible to members of a linguistic minority group. In other cases, they may be more
p.000017: substantial, such as when mobile health teams are assembled to dispatch vaccines and treatments to hard-to-reach rural
p.000017: areas. It is legitimate to take costs into consideration in determining whether a particular accommodation is
p.000017: warranted; indeed, the goal of maximizing utility demands that such assessments be made.
p.000017: However, despite the importance of conserving limited resources, the ethical principle of equity may sometimes justify
p.000017: providing greater resources to persons who have greater needs.
p.000017:
p.000017: • Heightened risk of violence — Infectious disease outbreaks can
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: exacerbate social unrest, increase criminality, and induce violent behaviour, especially against vulnerable groups such
...
p.000017: specific populations may be targeted as being the cause of the outbreak or provoking transmission; strategies should be
p.000017: proactively designed to
p.000017: protect members of such groups from a heightened risk of violence.
p.000017:
p.000017:
p.000019: 19
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:
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 doctor inspects patients in an MSF supported hospital in Aweil,
p.000019: Northern Bar El Ghazal in South Sudan, 2011
p.000019: Source: Siegfried Modola/IRIN
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019: 4. Allocating scarce resources
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000020: 20
p.000020: Questions addressed:
p.000020:
p.000020: • What type of resource allocation decisions might need to be made during infectious disease outbreaks?
p.000020: • How do the principles of utility and equity apply to decisions about allocating scarce resources during
p.000020: infectious disease outbreaks?
p.000020: • How does the principle of reciprocity apply to decisions about allocating scarce resources during infectious
p.000020: disease outbreaks?
p.000020: • What procedural considerations apply to decisions about resource allocation during infectious disease outbreaks?
p.000020: • What obligations do health-care providers have towards persons who are not able to access life-saving resources
p.000020: during infectious disease outbreaks?
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020: Infectious disease outbreaks can quickly overwhelm the capacities of governments and health-care systems, requiring
p.000020: them to make difficult decisions about the allocation of limited resources. Some of these decisions may arise in the
p.000020: context of allocating medical interventions, such as hospital beds, medications, and medical equipment. Others may
p.000020: relate to broader questions about how public health resources should be utilized. For example, how should limited
p.000020: resources be allocated between activities such as surveillance, health promotion, and community engagement? Should
p.000020: human resources be devoted to contact tracing at the possible expense of patient management? Should
p.000020: limited funds be spent improving water and
p.000020: sanitation facilities or building quarantine facilities?
p.000020:
p.000020: Infectious disease outbreaks also compete with other important public health
p.000020: issues for attention and resources. For example, one of the consequences of the Ebola outbreak was a reduction in
p.000020: access to general health-care services due to a combination of a greater number of patients and the sickness and death
p.000020: of health-care workers. As
p.000020: a result, deaths from tuberculosis, human immunodeficiency virus (HIV), and malaria increased dramatically during this
p.000020: period.10
p.000020:
p.000020: Governments, health-care facilities, and others involved in response efforts should
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020: prepare for such situations by developing guidelines on the allocation of scarce resources in outbreak situations. Such
p.000020: guidelines should be developed through an open and transparent process involving broad stakeholder input and, to the
p.000020: extent
p.000020: possible, should be incorporated into formal written documents that establish clear priorities and procedures. Those
p.000020: involved
p.000020: in developing these guidelines should be guided by the following considerations:
p.000020:
p.000020: • Balancing considerations of utility and equity — Resource allocation decisions should be guided by the ethical
p.000020: principles of utility and equity. The principle of utility requires allocating resources to maximize benefits and
p.000020: minimize burdens, while the principle of equity requires attention to the fair distribution of benefits
p.000020: and burdens. In some cases, an equal distribution of benefits and burdens may be considered fair, but in others, it may
...
p.000020: mechanisms, whether defined in terms 21
p.000020: of the total number of lives saved, the total number of life years saved, or the total number of quality-adjusted life
p.000020: years saved. For this reason,
p.000020: while it might be ethical to prioritize persons who are essential to manage an outbreak, it is not appropriate to
p.000020: prioritize persons based on social value considerations unrelated to carrying out critical services necessary for
p.000020: society.
p.000020:
p.000020: • Paying attention to the needs of vulnerable populations — In applying the ethical principle of equity, special
p.000020: attention should be given to individuals and groups that are the most vulnerable to discrimination, stigmatization, or
p.000020: isolation, as discussed in Guideline 3.
p.000020: Particular consideration must be given to individuals who are confined in institutional settings, where they are highly
p.000020: dependent on others and
p.000020: potentially exposed to much higher risks of infection than persons living in the community.
p.000020:
p.000020: • Fulfilling reciprocity-based obligations to those who contribute to infectious disease outbreak response efforts
p.000020: — The ethical principle of reciprocity implies that society should support persons who face a disproportionate burden
p.000020: or risk in protecting the public good. This principle justifies giving priority access to scarce resources to persons
p.000020: who
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020: assume risks to their own health or life to contribute to outbreak response efforts.
p.000020:
p.000020: • Providing supportive and palliative care to persons unable to access life- saving resources — Even when it is not
p.000020: possible to provide life-saving medical
p.000020: 22 resources to all who could benefit from
p.000020: them, efforts should be made to ensure that no patients are abandoned. One way to do this is to ensure that adequate
p.000020: resources are directed to providing supportive and palliative care.
p.000020:
p.000020: The application of allocation principles should take into account the following considerations:
p.000020:
p.000020: • Consistent application — Allocation principles should be applied in
p.000020: a consistent manner, both within individual institutions and, to the extent possible, across geographic areas.
p.000020: Decision-making tools should be developed to ensure that like cases are treated alike, and that no person receives
p.000020: better or worse treatment due to his or her social status or other factors not explicitly recognized in
p.000020: the allocation plan. Efforts should be made to avoid unintended systemic discrimination in the choice or application of
p.000020: allocation methods.
p.000020:
p.000020: • Resolution of disputes — Mechanisms should be developed to resolve disagreements about the application of
p.000020: allocation principles;
p.000020: these mechanisms should be designed to ensure that anyone who believes that allocation principles have been applied
p.000020: inappropriately has access to impartial and accountable review processes, and has the opportunity to be heard.
p.000020: • Avoiding corruption — Corruption in the health-care sector may be exacerbated during infectious disease
p.000020: outbreaks if large numbers of individuals are competing for access
p.000020: to limited resources. Efforts should be made to ensure that persons involved in the application of allocation systems
p.000020: do not accept or give bribes or engage in other corrupt activities.
p.000020:
p.000020: • Separation of responsibilities — To the extent possible, the interpretation of allocation principles should not
p.000020: be entrusted to clinicians who have pre-existing professional relationships that create an ethical obligation to
p.000020: advocate for the
p.000020: interests of specific patients or groups.
p.000020: Instead, decisions should be made by appropriately qualified clinicians
p.000020: who have no personal or professional reasons to advocate for one patient or group over another.
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020: 5. Public health surveillance
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000023: 23
p.000023: Questions addressed:
p.000023:
p.000023: • What role does surveillance play in infectious disease outbreak response efforts?
p.000023: • Should surveillance activities be subject to ethical review?
p.000023: • What obligations do entities conducting surveillance activities have to protect the confidentiality of
p.000023: information collected?
p.000023: • Are there any circumstances under which individuals should be asked for consent to, or given the opportunity to
p.000023: opt out of, surveillance activities?
p.000023: • What obligations do those conducting surveillance activities have to disclose information they collect to the
p.000023: affected individuals and communities?
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
...
p.000025: individuals in
p.000025: institutions. While isolation in a properly equipped health-care facility is usually recommended for individuals who
p.000025: are already symptomatic, especially for diseases with a high potential for contagiousness, home-based isolation may
p.000025: sometimes be appropriate, provided that adequate medical and
p.000025: logistical support can be organized and family attendants are willing and able to act under the oversight of trained
p.000025: public health staff. This is particularly true if the caseload overwhelms facility capacity.
p.000025:
p.000025: • Costs — In some cases, a less restrictive alternative may involve greater costs. This does not, in itself,
p.000025: justify more restrictive approaches. However, costs and other practical constraints (e.g. logistics, distance,
p.000025: available workforce) may legitimately be taken into account to determine whether a less restrictive alternative is
p.000025: feasible under the circumstances, particularly in settings with severe resource constraints.
p.000025:
p.000025: • Ensuring humane conditions — Any restrictions on freedom of movement, particularly those that are not voluntary,
p.000025: should be backed up with sufficient resources to ensure that those subject to the restrictions do not experience undue
p.000025: burdens. For example, individuals whose mobility is restricted (whether through confinement at home or
p.000025: in institutional settings) should be ensured access to food, drinking water, sanitary facilities, shelter, clothing,
p.000025: and medical care. It is also important to ensure that individuals have adequate physical space, opportunities to engage
p.000025: in activities, and the means
p.000025: to communicate with their loved ones and the outside world. Fulfilling these needs is essential to respect individual
p.000025: dignity and address the significant psychosocial burden of confinement on individuals and their loved ones. Mechanisms
p.000025: should be put in place to minimize the risk of violence (including sexual assault) and local disease
p.000025: transmission, especially when individuals are confined in institutional settings
p.000025: or when communities are under mass quarantine. At a minimum, persons who
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: are quarantined because they have been exposed to the pathogen responsible for the outbreak should not be put at
p.000025: heightened risk of infection because of the manner in which they are confined. (Decisions on the circumstances and
p.000025: conditions of confinement should consider the heightened needs of vulnerable populations, as discussed
p.000025: in Guideline 3.)
p.000025:
p.000025: • Addressing financial and social consequences — Even short-term restrictions on freedom of movement can have
p.000025: significant — and possibly devastating —financial and social consequences for individuals, their families, and their
p.000025: communities. Countries should provide assistance to households that suffer financial
...
p.000030: case-by-case basis, with attention to both the scientific
p.000030: validity of the data and the acceptability of the methodology to the community from which participants will be drawn.
p.000030: In studies relying on qualitative methods, the potential benefits of using methodologies such as focus groups (in which
p.000030: individual confidentiality cannot be guaranteed) or of interviewing traumatized victims should be balanced against the
p.000030: risks and burdens to the individuals involved.
p.000030:
p.000030: • Rapid data sharing: As WHO has previously recognized, every researcher who engages in generation of information
p.000030: related to a public health emergency or acute public health event with the potential to progress
p.000030: to an emergency has the fundamental moral obligation to share preliminary results once they are adequately quality
p.000030: controlled for release.16 Such information should be shared with
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030: public health officials, the study participants and affected population, and groups involved in wider international
p.000030: response efforts, without waiting for publication in scientific journals. Journals should facilitate
p.000030: this process by allowing researchers to rapidly disseminate information
p.000030: 34 with immediate implications for public
p.000030: health without losing the opportunity for subsequent consideration for publication in a journal.17
p.000030:
p.000030: • Assuring equitable access to the benefits of research — As
p.000030: recognized in existing international ethics guidelines, individuals and communities that participate in research
p.000030: should, where relevant, have access to any benefits that result from their participation. Research sponsors and host
p.000030: countries should agree in advance on mechanisms to ensure that any interventions found to be safe and effective in
p.000030: research will be made available to the local population without undue delay, including, when feasible, on a
p.000030: compassionate use basis before regulatory approval is finalized.
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:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030: Staff preparing to go into the Isolation Unit at Persahabatan Hospital, East Jakarta.
p.000030: Source: Jonathan Perugia
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030: 9. Emergency use of unproven interventions outside of research
p.000030:
p.000030:
p.000030:
p.000035: 35
p.000035: Questions addressed:
p.000035:
p.000035: • Under what circumstances is it ethically appropriate to offer patients unproven interventions outside clinical
p.000035: trials during infectious disease outbreaks?
p.000035: • How should such interventions be identified?
p.000035: • What type of ethical oversight should be conducted when unproven interventions are offered outside clinical
p.000035: trials during infectious disease outbreaks?
p.000035: • If such interventions are provided, what should individuals be told about them?
p.000035: • What obligations do persons administering unproven interventions outside clinical trials have to communicate with
p.000035: the community?
...
p.000035: this purpose. This committee should base its recommendations on a rigorous review of all data available from
p.000035: laboratory, animal and human studies of the intervention to assess the risk–benefit of MEURI in the context of the
p.000035: risks for patients who do not receive MEURI.
p.000035:
p.000035: MEURI should be guided by the same ethical principles that guide use of
p.000035: unproven compounds in clinical trials, including the following:
p.000035:
p.000035: • Importance of ethical oversight — MEURI is intended to be an exceptional measure for situations in which
p.000035: initiating a clinical trial is not feasible, not as a means to circumvent ethical oversight of the use of unproven
p.000035: interventions. Thus, mechanisms should be established to ensure that MEURI is subject to ethical oversight.
p.000035:
p.000035: • Effective resource allocation — MEURI should not preclude or delay the initiation of clinical research into
p.000035: experimental products. In addition, it should not divert attention or resources from the implementation of effective
p.000035: clinical care and/or public health measures that may be crucial to control an outbreak.
p.000035:
p.000035: • Minimizing risk — Administering unproven interventions necessarily involves risks, some of which will not be
p.000035: fully understood until further testing is conducted. However, any known risks associated with an intervention should be
p.000035: minimized to the extent reasonably possible (e.g. administration under hygienic conditions; using
p.000035: the same safety precautions that would be used during a clinical trial, with close monitoring and access to emergency
p.000035: medication and equipment; and providing necessary supportive treatment). Only investigational products manufactured
p.000035: according to good manufacturing practices should be used for MEURI.
p.000035:
p.000035: • Collection and sharing of meaningful data — Physicians overseeing MEURI have the same moral
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: obligation to collect all scientifically relevant data on the safety and efficacy of the intervention as researchers
p.000035: overseeing a clinical trial. Knowledge generated through MEURI should be aggregated across patients if possible and
p.000035: shared transparently, completely and rapidly with the MEURI scientific advisory committee, public health authorities,
p.000035: physicians and researchers in the country, and the international medical and scientific community.
p.000035: Information should be described accurately, without overstating benefits or understating uncertainties or risks.
p.000035:
p.000035: • Importance of informed consent — Individuals who are offered MEURI should be made aware that the intervention
p.000035: might not benefit
p.000035: them and might even harm them. The process of obtaining informed consent to MEURI should be carried out in a
p.000035: culturally and linguistically sensitive manner, with an emphasis on the content and understandability of the
p.000035: information conveyed and the voluntariness of the patient’s decision.
...
p.000039: but necessary relationship-building, consultation, and education, as well as the establishment of policies, practices,
p.000039: and institutions capable of commanding public confidence and trust.
p.000040: 40
p.000040: In addition to the general principles discussed elsewhere in this document, specific considerations relevant to the
p.000040: long-term storage of biological specimens collected during infectious disease outbreaks include the following:
p.000040:
p.000040: • Provision of information — Before individuals are asked to provide biospecimens during an infectious disease
p.000040: outbreak, they should be given access to information about the
p.000040: purpose of the collection, whether their samples will be stored and, if so, the ways in which their specimens might be
p.000040: used in the future. When feasible and consistent with public health objectives, individuals should be asked to provide
p.000040: informed consent or be given the opportunity to opt out of the long-term storage of their specimens. Seeking informed
p.000040: consent is particularly important if there is any possibility that the specimens may later be used for research
p.000040: purposes.
p.000040:
p.000040: • Community engagement — Individuals and organizations involved in the long-term storage of biospecimens collected
p.000040: during infectious disease outbreaks should engage representatives of the local community in a dialogue about the
p.000040: process. Community representatives should be involved in the development of policies regarding future use of the
p.000040: samples, including measures to ensure that equitable access is provided to any benefits that result from using the
p.000040: samples in research.
p.000040:
p.000040: • International sharing of biospecimens — Sharing biospecimens internationally may sometimes be necessary to
p.000040: conduct critical research.
p.000040: If it is necessary to transfer specimens internationally, appropriate governance mechanisms and regulatory systems
p.000040: should be established to ensure that representatives of the country where the specimens were collected are involved in
p.000040: decisions about the specimens’ use. The international community should make efforts to strengthen countries’ capacity
p.000040: to maintain biospecimens within their own borders.
p.000040:
p.000040: • Material transfer agreements — Biospecimens should not be transferred outside of the countries from which they
p.000040: are collected without formal material transfer agreements. Such agreements should specify the purpose of the transfer,
p.000040: certify the specimen donor's consent as appropriate, provide for adequate confidentiality protection, cover the
p.000040: physical security of the specimens, require that the country
p.000040: of origin is acknowledged in future research reporting, and guarantee that the benefits of any subsequent use of the
p.000040: specimens will be shared with the communities from which the samples were obtained. Material transfer agreements should
p.000040: be developed with the involvement of persons responsible for the care of patients and the taking of samples,
p.000040: representatives of affected communities and patients, and relevant government officials and ethics committees.
p.000040:
p.000040:
p.000040:
p.000040:
p.000040:
...
p.000041: attributes)20 can influence the spread, containment, course, and consequences of infectious disease outbreaks. Sex and
p.000041: gender differences have been associated with differences in susceptibility to infection, levels of health care
p.000041: received, and in the course and outcome of illness.21 Addressing sex and gender differences in infectious disease
p.000041: outbreak planning and response efforts requires attention to the following considerations:
p.000041:
p.000041: • Sex- and gender-inclusive surveillance programmes — Public health surveillance should systematically collect
p.000041: disaggregated information on sex, gender, and pregnancy status, both to identify differential risks and
p.000041: modes of transmission, and to monitor any differential impact of an infectious disease outbreak and the interventions
p.000041: used to control it. This information is particularly important for pregnant women and their offspring.
p.000041:
p.000041: • Ensuring the availability of high- quality reproductive health-care services — Whether or not they are currently
p.000041: pregnant, women of childbearing age should have access to the full range of high-quality
p.000041: reproductive health-care services during an infectious disease outbreak. These services should be organized and
p.000041: delivered in a manner that does not stigmatize persons who use them or expose them to a heightened risk of infection
p.000041: with the outbreak pathogen. If there is evidence that an infectious
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: disease creates special risks for pregnant women or their fetus, both men and women should be informed of these risks
p.000041: and have access to safe methods to minimize them, along with reproductive counselling services.
p.000041:
p.000041: • Sex- and gender-inclusive research
p.000041: 42 strategies — Researchers should make efforts to ensure that studies do not disproportionately
p.000041: favour a particular sex or gender, and that women who are or might become pregnant are not inappropriately excluded
p.000041: from research participation. During an outbreak, research on experimental treatments and preventive measures should
p.000041: seek to identify any sex- or gender-related differences in outcomes.
p.000041:
p.000041: • Attention to social and cultural practices — Gender-related roles and practices can affect all aspects of
p.000041: infectious disease outbreaks, including
p.000041: individuals’ risk of becoming infected, the consequences of infection, their use of health services and other
p.000041: health-seeking behaviours, and their vulnerability to interpersonal violence.
p.000041: Policy-makers and outbreak responders should identify and respond to these factors, drawing when possible
p.000041: on relevant anthropological and sociological research.
p.000041:
p.000041: • Sex- and gender-sensitive communication strategies —
p.000041: Entities responsible for developing and implementing communication strategies should be sensitive to sex- and gender-
p.000041: based differences in how individuals have access to and respond to health- related information. Separate messages and
p.000041: communication strategies may be needed to provide relevant information to particular subgroups, such as pregnant women
p.000041: or nursing mothers.
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: Influenza in India
p.000041: Source: Tom Pietrasik, WHO
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: 13. Frontline response workers’ rights and obligations
p.000041:
p.000041:
p.000041:
p.000043: 43
p.000043: Questions addressed:
p.000043:
p.000043: • What obligations exist to protect the health of frontline workers who participate in infectious disease outbreak
p.000043: response efforts?
p.000043: • What obligations exist to provide material support to frontline workers who participate in infectious disease
p.000043: outbreak response efforts?
p.000043: • To what extent do these obligations extend to the workers’ family?
p.000043: • What should be taken into account in determining whether individuals have an obligation to serve as frontline
p.000043: workers during infectious disease outbreaks?
p.000043: • What special obligations do workers in the health-care sector have during infectious disease outbreaks?
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: An effective infectious disease outbreak response depends on the contribution of
...
p.000043: workers, many of whom
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: may have precarious employment contracts with no social protection, or work on
p.000043: a volunteer basis.
p.000043:
p.000043: Regardless of whether a particular individual has a pre-existing duty to assume
p.000043: heightened risks during an infectious disease outbreak, once a worker has taken on these
p.000043: 44 risks, society has a reciprocal obligation to
p.000043: provide necessary support. At a minimum, fulfilment of society’s reciprocal obligations to frontline workers requires
p.000043: the following actions:
p.000043:
p.000043: • Minimizing the risk of infection —
p.000043: Individuals should not be expected to take on risky work assignments
p.000043: during an infectious disease outbreak unless they are provided with
p.000043: the training, tools, and resources necessary to minimize the risks to the extent reasonably possible. This includes
p.000043: complete and accurate information known about the nature
p.000043: of the pathogen and infection control measures, updated information on the epidemiological situation at the local
p.000043: level, and the provision of personal protective equipment. Regular screening of frontline workers should be put
p.000043: in place to detect any infection as quickly as possible, in order to initiate immediate care and minimize the risk of
p.000043: transmission to colleagues, patients, families, and community members.
p.000043:
p.000043: • Priority access to health care — Frontline workers who become sick, as well as any immediate family members who
p.000043: become ill through contact with the worker, should be ensured access to the highest level of care reasonably available.
p.000043: In addition, countries should consider giving frontline workers and their families priority access to vaccines
p.000043: and other treatments as they become available.
p.000043:
p.000043: • Appropriate remuneration — Frontline workers should be given fair remuneration for their work. Governments should
p.000043: ensure that public sector workers are paid in
p.000043: a timely manner, and make efforts to ensure that actors in the private and nongovernmental sectors fulfil their own
p.000043: obligations to pay their employees and contractors. Fair remuneration for frontline workers includes the provision of
p.000043: financial support during periods in which workers are unable to carry out their normal responsibilities because of an
p.000043: infection acquired on the job.
p.000043:
p.000043: • Support for reintegrating into the community — Frontline workers may experience stigma and discrimination,
p.000043: particularly those involved in unpopular measures such as infection control or burials not conducted according to
p.000043: the traditional customs. Governments should make efforts to reduce the risk of stigmatization and discrimination and
p.000043: help such workers to reintegrate into the community, including by providing job placement assistance and relocation to
p.000043: other communities if needed.
p.000043:
p.000043: • Assistance to family members — Assistance should be provided to families of frontline workers who need to remain
p.000043: away from home in order
...
p.002014: Dr Johan van Griensven, Department of Clinical Sciences, Institute of Tropical Medicine, Belgium
p.002014: Professor John Whitehead, Emeritus Professor, Department of Mathematics and Statistics, Fylde College, Lancaster
p.002014: University, United Kingdom
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014: WHO Secretariat
p.002014: Dr Marie-Paule Kieny, Assistant Director-General, Health Systems and Innovation Dr Marie-Charlotte Bouesseau, Advisor,
p.002014: Department of Service Delivery and Safety Dr Vânia de la Fuente-Núñez,Technical Officer, Global Health Ethics,
p.002014: Department of Knowledge, Ethics and Research
p.002014: Dr Martin Friede, Scientist, Public Health, Innovation and Intellectual Property, Department of Essential Medicines and
p.002014: Health Products
p.002014: Ms Marisol Guraiib, Technical Officer, Global Health Ethics, Department of Knowledge,
p.002014: Ethics and Research
p.000059: 59
p.000059: Ms Corinna Klingler, Intern, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059: Dr Selena Knight, Intern, Global Health Ethics, Department of Knowledge, Ethics and Research Dr Nicola Magrini,
p.000059: Scientist, Policy, Access and Use, Department of Essential Medicines and Health Products
p.000059: Dr Cathy Roth, Adviser, Office of the Assistant Director-General, Health Systems and Innovation Dr Vasee
p.000059: Sathiyamoorthy, Technical Officer, Initiative for Vaccine Research, Department of Immunization, Vaccines and
p.000059: Biologicals
p.000059: Dr Abha Saxena, Coordinator, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059: Dr David Wood, Coordinator, Technologies, Standards and Norms, Department of Essential Medicines and Health Products
p.000059:
p.000059: Developing ethics guidelines for public health responses during epidemics, including for the conduct of related
p.000059: research, Dublin, Ireland, 25–26 May 2015
p.000059:
p.000059: Participants
p.000059: Dr Annick Antierens, Manager, Investigational Platform for Experimental Ebola Products, Médecins Sans Frontières,
p.000059: Switzerland
p.000059: Dr Philippe Calain, Senior Researcher, Unit of Research on Humanitarian Stakes and Practices, Médecins Sans Frontières,
p.000059: Switzerland
p.000059: Dr Edward Cox, Director, Office of Antimicrobial Products, Food and Drug Administration, United States of America
p.000059: Professor Heather Draper, Professor of Biomedical Ethics, University of Birmingham, United Kingdom
p.000059: Dr Sarah Edwards, Senior Lecturer in Research Ethics and Governance, University College London, United Kingdom
...
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p.000039:
p.000039: may mitigate the harm of similar outbreaks in the future. At the same time, long-term storage of biospecimens involves
p.000039: potential risks to individuals and communities.
p.000039: Risks to individuals primarily relate to the unwanted disclosure of personal information. This can be minimized by
p.000039: protecting the confidentiality of individuals’ identities, but confidentiality may be difficult to protect when only a
p.000039: small number of people are being tested. Moreover, even when individual confidentiality can be adequately protected,
p.000039: some individuals or communities might still be uncomfortable making their biospecimens available for future use,
p.000039: especially if such use is not subject to community control. Particular concerns can arise when specimens are
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039: transferred abroad without the originating country’s prior agreement. Addressing these concerns requires time-consuming
p.000039: but necessary relationship-building, consultation, and education, as well as the establishment of policies, practices,
p.000039: and institutions capable of commanding public confidence and trust.
p.000040: 40
p.000040: In addition to the general principles discussed elsewhere in this document, specific considerations relevant to the
p.000040: long-term storage of biological specimens collected during infectious disease outbreaks include the following:
p.000040:
p.000040: • Provision of information — Before individuals are asked to provide biospecimens during an infectious disease
p.000040: outbreak, they should be given access to information about the
p.000040: purpose of the collection, whether their samples will be stored and, if so, the ways in which their specimens might be
p.000040: used in the future. When feasible and consistent with public health objectives, individuals should be asked to provide
p.000040: informed consent or be given the opportunity to opt out of the long-term storage of their specimens. Seeking informed
p.000040: consent is particularly important if there is any possibility that the specimens may later be used for research
p.000040: purposes.
p.000040:
p.000040: • Community engagement — Individuals and organizations involved in the long-term storage of biospecimens collected
p.000040: during infectious disease outbreaks should engage representatives of the local community in a dialogue about the
p.000040: process. Community representatives should be involved in the development of policies regarding future use of the
p.000040: samples, including measures to ensure that equitable access is provided to any benefits that result from using the
p.000040: samples in research.
p.000040:
p.000040: • International sharing of biospecimens — Sharing biospecimens internationally may sometimes be necessary to
p.000040: conduct critical research.
p.000040: If it is necessary to transfer specimens internationally, appropriate governance mechanisms and regulatory systems
p.000040: should be established to ensure that representatives of the country where the specimens were collected are involved in
p.000040: decisions about the specimens’ use. The international community should make efforts to strengthen countries’ capacity
p.000040: to maintain biospecimens within their own borders.
p.000040:
...
Social / Child
Searching for indicator child:
(return to top)
p.000017:
p.000017: • Impact of stigmatization and discrimination — Members of socially disadvantaged groups often face considerable
p.000017: stigma and discrimination, which can be exacerbated in public health emergencies characterized by fear and distrust.
p.000017: Those responsible for infectious disease outbreak response should ensure that all individuals are treated fairly and
p.000017: equitably regardless of their social status or perceived “worth” to society. They should also take measures to prevent
p.000017: stigmatization and social violence.
p.000017:
p.000017: • Disproportionate burdens of outbreak response measures — Even when public health measures
p.000017: are designed with the best of intentions, they can inadvertently place a disproportionate burden on particular
p.000017: populations. For example, quarantine orders that require individuals to stay
p.000017: in their homes can have devastating consequences for persons who need to leave their homes to obtain basic
p.000017: necessities such as clean water or food. Similarly, social distancing measures such as school closures can place
p.000017: disproportionate burdens on children who depend on going to school to access regular meals, as well as on working
p.000017: parents who may have no one available to provide child care.
p.000017:
p.000017: • Greater need for resources — Accommodating the needs of individuals whose situation makes them particularly
p.000017: vulnerable sometimes requires the use of additional resources.
p.000017: In some cases, additional resources are relatively minimal, such as when an interpreter is hired to make
p.000017: a community engagement forum accessible to members of a linguistic minority group. In other cases, they may be more
p.000017: substantial, such as when mobile health teams are assembled to dispatch vaccines and treatments to hard-to-reach rural
p.000017: areas. It is legitimate to take costs into consideration in determining whether a particular accommodation is
p.000017: warranted; indeed, the goal of maximizing utility demands that such assessments be made.
p.000017: However, despite the importance of conserving limited resources, the ethical principle of equity may sometimes justify
p.000017: providing greater resources to persons who have greater needs.
p.000017:
p.000017: • Heightened risk of violence — Infectious disease outbreaks can
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: exacerbate social unrest, increase criminality, and induce violent behaviour, especially against vulnerable groups such
p.000017: as minority populations
p.000017: or migrants. In addition, public health measures such as home isolation, quarantine, or closure of schools and work
...
Searching for indicator children:
(return to top)
p.000017: multiple formats (e.g. radio, text messages, billboards, cartoons) as well as direct oral communication with key
p.000017: stakeholders. Health authorities should not assume that the public will search for information; instead, they should
p.000017: proactively reach out to the concerned population wherever they are.
p.000017:
p.000017: • Impact of stigmatization and discrimination — Members of socially disadvantaged groups often face considerable
p.000017: stigma and discrimination, which can be exacerbated in public health emergencies characterized by fear and distrust.
p.000017: Those responsible for infectious disease outbreak response should ensure that all individuals are treated fairly and
p.000017: equitably regardless of their social status or perceived “worth” to society. They should also take measures to prevent
p.000017: stigmatization and social violence.
p.000017:
p.000017: • Disproportionate burdens of outbreak response measures — Even when public health measures
p.000017: are designed with the best of intentions, they can inadvertently place a disproportionate burden on particular
p.000017: populations. For example, quarantine orders that require individuals to stay
p.000017: in their homes can have devastating consequences for persons who need to leave their homes to obtain basic
p.000017: necessities such as clean water or food. Similarly, social distancing measures such as school closures can place
p.000017: disproportionate burdens on children who depend on going to school to access regular meals, as well as on working
p.000017: parents who may have no one available to provide child care.
p.000017:
p.000017: • Greater need for resources — Accommodating the needs of individuals whose situation makes them particularly
p.000017: vulnerable sometimes requires the use of additional resources.
p.000017: In some cases, additional resources are relatively minimal, such as when an interpreter is hired to make
p.000017: a community engagement forum accessible to members of a linguistic minority group. In other cases, they may be more
p.000017: substantial, such as when mobile health teams are assembled to dispatch vaccines and treatments to hard-to-reach rural
p.000017: areas. It is legitimate to take costs into consideration in determining whether a particular accommodation is
p.000017: warranted; indeed, the goal of maximizing utility demands that such assessments be made.
p.000017: However, despite the importance of conserving limited resources, the ethical principle of equity may sometimes justify
p.000017: providing greater resources to persons who have greater needs.
p.000017:
p.000017: • Heightened risk of violence — Infectious disease outbreaks can
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: exacerbate social unrest, increase criminality, and induce violent behaviour, especially against vulnerable groups such
p.000017: as minority populations
p.000017: or migrants. In addition, public health measures such as home isolation, quarantine, or closure of schools and work
p.000017: facilities can induce violence, particularly against women and children. Officials involved in outbreak planning and
p.000017: response efforts should be prepared for the possibility that
p.000017: specific populations may be targeted as being the cause of the outbreak or provoking transmission; strategies should be
p.000017: proactively designed to
p.000017: protect members of such groups from a heightened risk of violence.
p.000017:
p.000017:
p.000019: 19
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:
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 doctor inspects patients in an MSF supported hospital in Aweil,
p.000019: Northern Bar El Ghazal in South Sudan, 2011
p.000019: Source: Siegfried Modola/IRIN
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019: 4. Allocating scarce resources
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000020: 20
p.000020: Questions addressed:
p.000020:
p.000020: • What type of resource allocation decisions might need to be made during infectious disease outbreaks?
p.000020: • How do the principles of utility and equity apply to decisions about allocating scarce resources during
p.000020: infectious disease outbreaks?
p.000020: • How does the principle of reciprocity apply to decisions about allocating scarce resources during infectious
p.000020: disease outbreaks?
p.000020: • What procedural considerations apply to decisions about resource allocation during infectious disease outbreaks?
...
p.000030: ordinary medical care, and this should not in itself preclude their enrolment.
p.000030:
p.000030: • Addressing other barriers to informed consent — In addition to the impact of fear and desperation,
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030: other factors can challenge researchers’ ability to obtain informed consent to research; these range from cultural and
p.000030: linguistic differences between foreign researchers and local participants, to the fact that prospective participants in
p.000030: quarantine or isolation may be cut off from their families and other support
p.000030: systems and feel powerless to decline an invitation to participate in research. To the extent possible, consent
p.000030: processes compatible with international research ethics guidelines should be developed
p.000030: in consultation with local communities and implemented by locally recruited personnel. In addition, researchers should
p.000030: be well informed about the medical, psychological and social support systems available locally so that they can guide
p.000030: participants in need towards these services. In some situations, it may be necessary to develop rapid mechanisms for
p.000030: appointing proxy decision-makers, such as during outbreaks of diseases that affect cognitive abilities, or when
p.000030: an outbreak leaves a large number of children as orphans.
p.000030:
p.000030: • Gaining and maintaining trust — Failure to build and maintain community trust during the process of research
p.000030: design and implementation, or when disclosing preliminary results, will not only impede study recruitment and
p.000030: completion but may also undermine
p.000030: the uptake of any interventions proven to be efficacious. Engaging with affected communities before, during, and after
p.000030: a study is essential to build and maintain trust. In environments in which the public’s trust in government is fragile,
p.000030: researchers should remain as independent as possible from official public health activities. If government workers are
p.000030: themselves involved in
p.000030: conducting research, they should inform participants of this fact. Individuals who observe unethical practices carried
p.000030: out in the name of public health or emergency response efforts should promptly report them to ethics committees or
p.000030: other independent bodies.
p.000030: • Selecting an appropriate research 33
p.000030: methodology — Exposing research participants to risk is ethically unacceptable if the study is not designed in a manner
p.000030: capable of providing valid results. It is therefore imperative that all research be designed and conducted in a
p.000030: methodologically rigorous manner. In clinical trials,
p.000030: the appropriateness of features such as randomization, placebo controls, blinding or masking should be determined on a
p.000030: case-by-case basis, with attention to both the scientific
...
Social / Ethnicity
Searching for indicator ethnicity:
(return to top)
p.000025: professional reintegration of individuals for whom confinement is no longer necessary, including measures to reduce
p.000025: stigmatization and discrimination.
p.000025:
p.000025: • Due process protections — Mechanisms should be in place to allow individuals whose liberty has been restricted to
p.000025: challenge the appropriateness of those restrictions, the way they are enforced, and the conditions under which the
p.000025: restrictions are carried out. If it is not feasible to provide full due process protection before the restrictions are
p.000025: implemented in an emergency scenario, mechanisms for review and appeal should be made
p.000025: available without excessive delay. All persons involved in decisions to restrict individuals’ freedom of movement
p.000025: should be accountable for any abuses of authority.
p.000025:
p.000025: • Equitable application — Restrictions on freedom of movement should be
p.000025: applied in the same manner to all 27
p.000025: persons posing a comparable public health risk. Thus, individuals should not be subject to greater or lesser
p.000025: restrictions for reasons unrelated to the
p.000025: risks they may pose to others, including membership in any disfavoured or favoured social group or class (for example,
p.000025: groups defined by gender, ethnicity, or religion). In addition, policy- makers should seek to ensure that restrictions
p.000025: are not applied in a manner that imposes a disproportionate burden on vulnerable segments of society.
p.000025:
p.000025: • Communication and transparency —
p.000025: Policy-makers and public health officials should engage communities in a dialogue about any restrictions on freedom of
p.000025: movement and solicit community members’ views on how restrictions can be carried out with the least possible burden.
p.000025: They should also provide regular updates on the implementation of such measures,
p.000025: both to the public at large and to those whose movement has been restricted. Communication strategies should be
p.000025: designed to avoid the stigmatization
p.000025: of individuals whose liberty has been restricted and to protect their privacy and confidentiality, particularly in the
p.000025: media.
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: 7. Obligations related to medical interventions for the diagnosis, treatment, and prevention of infectious disease
p.000028: 28
p.000028:
p.000028:
p.000028: Questions addressed:
p.000028:
p.000028: • What quality and safety standards should govern the administration of medical interventions offered during
p.000028: infectious disease outbreaks?
p.000028: • What rights do patients (or their authorized proxy decision-makers) have to receive information about the risks
...
Social / Fetus/Neonate
Searching for indicator fetus:
(return to top)
p.000041:
p.000041: • Sex- and gender-inclusive surveillance programmes — Public health surveillance should systematically collect
p.000041: disaggregated information on sex, gender, and pregnancy status, both to identify differential risks and
p.000041: modes of transmission, and to monitor any differential impact of an infectious disease outbreak and the interventions
p.000041: used to control it. This information is particularly important for pregnant women and their offspring.
p.000041:
p.000041: • Ensuring the availability of high- quality reproductive health-care services — Whether or not they are currently
p.000041: pregnant, women of childbearing age should have access to the full range of high-quality
p.000041: reproductive health-care services during an infectious disease outbreak. These services should be organized and
p.000041: delivered in a manner that does not stigmatize persons who use them or expose them to a heightened risk of infection
p.000041: with the outbreak pathogen. If there is evidence that an infectious
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: disease creates special risks for pregnant women or their fetus, both men and women should be informed of these risks
p.000041: and have access to safe methods to minimize them, along with reproductive counselling services.
p.000041:
p.000041: • Sex- and gender-inclusive research
p.000041: 42 strategies — Researchers should make efforts to ensure that studies do not disproportionately
p.000041: favour a particular sex or gender, and that women who are or might become pregnant are not inappropriately excluded
p.000041: from research participation. During an outbreak, research on experimental treatments and preventive measures should
p.000041: seek to identify any sex- or gender-related differences in outcomes.
p.000041:
p.000041: • Attention to social and cultural practices — Gender-related roles and practices can affect all aspects of
p.000041: infectious disease outbreaks, including
p.000041: individuals’ risk of becoming infected, the consequences of infection, their use of health services and other
p.000041: health-seeking behaviours, and their vulnerability to interpersonal violence.
p.000041: Policy-makers and outbreak responders should identify and respond to these factors, drawing when possible
p.000041: on relevant anthropological and sociological research.
p.000041:
...
Social / Incarcerated
Searching for indicator liberty:
(return to top)
p.000001: Guidance For Managing Ethical Issues
p.000001: In Infectious Disease
p.000001: Outbreaks
p.000001:
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p.000001: privacy
p.000001: principle
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p.000001: confidentiality
p.000001: procedural justice
p.000001: solidarity
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p.000001: equity
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p.000001: value
p.000001: bioethics
p.000001: solidarity
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p.000001: confidentiality
p.000001: solidarity justice
p.000001: value
p.000001: non-maleficence
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p.000001: values
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p.000001: value
p.000001: dignityproportionality
p.000001: equity
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p.000001: libvaluee
p.000001: rty
p.000001: liberty
p.000001: procedural justice
p.000001: principle
p.000001: solidarity
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p.000001: beneficence
p.000001: valueprinciplesvalue
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p.000001: informed consent
p.000001: dignity
p.000001: liberty
p.000001: human rights
p.000001: bioliberty ethics
p.000001: liberty solidarity distributive justice
p.000001:
p.000001: confidentiality
p.000001: procedural justice
p.000001: reciprocity human rights
p.000001:
p.000001: public health ethics
p.000001: principle
p.000001: public good
p.000001: equity
p.000001: informed consent
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p.000001: beneficence
p.000001: principle
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p.000001: value
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p.000001: solidarity
p.000001: justice
p.000001: social justice confidentiality
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p.000001: value
p.000001: public health ethics
p.000001: procedural justice
p.000001:
p.000001: equity
p.000001:
p.000001: principle
p.000001: public good
p.000001: value dignity
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p.000001:
p.000001:
p.000001: Guidance for Managing Ethical Issues
p.000001: in Infectious Disease Outbreaks
p.000001:
p.000001:
p.000001:
p.000001: WHO Library Cataloguing-in-Publication Data
p.000001:
p.000001: Guidance for managing ethical issues in infectious disease outbreaks.
p.000001:
p.000001: 1.Disease Outbreaks. 2.Communicable Diseases. 3.Ethics. I.World Health Organization. ISBN 978 92 4 154983 7
p.000001: (NLM classification: WA 105)
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p.000001: © World Health Organization 2016
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...
p.000006: of an activity against any risks of harm) and
p.000006: efficiency (achieving the greatest benefits at the lowest possible cost).
p.000006:
p.000006: Respect for persons — The term “respect for persons” refers to treating individuals in ways that are fitting to and
p.000006: informed by a recognition of our common humanity, dignity and inherent rights. A central
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006: aspect of respect for persons is respect for autonomy, which requires letting individuals make their own choices based
p.000006: on their values and preferences. Informed consent, a process in which a competent individual authorizes a course of
p.000006: action based on sufficient relevant information, without coercion or undue inducement, is one
p.000006: way to operationalize this concept. Where individuals lack decision-making capacity, it may be necessary for others to
p.000006: be charged with protecting their interests. Respect for persons also includes paying attention to values such as
p.000006: privacy and confidentiality, as well as social, religious and cultural beliefs and important relationships, including
p.000006: family bonds. Finally, respect for persons requires transparency and truth-telling in the context of carrying out
p.000006: public health and research activities.
p.000006:
p.000006: Liberty — Liberty includes a broad range of social, religious and political freedoms, such as freedom of movement,
p.000006: freedom of peaceful assembly, and freedom of speech. Many aspects of liberty are protected as fundamental human rights.
p.000006:
p.000006: Reciprocity — Reciprocity consists of making a “fitting and proportional return” for contributions that people have
p.000006: made.6 Policies that encourage reciprocity can
p.000006: be an important means of promoting the principle of justice, as they can correct unfair disparities in the distribution
p.000006: of the benefits and burdens of epidemic response efforts.
p.000006:
p.000006: Solidarity — Solidarity is a social relation in which a group, community, nation
p.000006: or, potentially, global community stands together.7 The principle of solidarity justifies collective action in the
p.000006: face of common threats. It also supports efforts to overcome inequalities that undermine the welfare
p.000006: of minorities and groups that suffer from discrimination.
p.000006:
p.000006:
p.000006: Practical applications
p.000006:
p.000006: The application of ethical principles should be informed by evidence as far as it is
p.000006: available. For example, in determining 9
p.000006: whether a particular action contributes to utility, decision-makers should be guided by any available scientific
p.000006: evidence about the action’s expected benefits and harms.
p.000006: The more intrusive the proposed action, the greater the need for robust evidence that what is being proposed is likely
p.000006: to achieve its desired aim. When specific evidence is not available, decisions should be based
p.000006: on reasoned, substantive arguments and informed by evidence from analogous situations, to the extent possible.
p.000006:
p.000006: In balancing competing principles during infectious disease outbreaks, countries must respect their obligations under
...
p.000025: transmission, especially when individuals are confined in institutional settings
p.000025: or when communities are under mass quarantine. At a minimum, persons who
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: are quarantined because they have been exposed to the pathogen responsible for the outbreak should not be put at
p.000025: heightened risk of infection because of the manner in which they are confined. (Decisions on the circumstances and
p.000025: conditions of confinement should consider the heightened needs of vulnerable populations, as discussed
p.000025: in Guideline 3.)
p.000025:
p.000025: • Addressing financial and social consequences — Even short-term restrictions on freedom of movement can have
p.000025: significant — and possibly devastating —financial and social consequences for individuals, their families, and their
p.000025: communities. Countries should provide assistance to households that suffer financial
p.000025: losses as a result of inability to conduct business, loss of a job, damage to crops, or other consequences of
p.000025: restrictions on freedom of movement. In some cases, this support may need to continue
p.000025: for a period following the end of confinement. In addition, efforts should be made to support the social and
p.000025: professional reintegration of individuals for whom confinement is no longer necessary, including measures to reduce
p.000025: stigmatization and discrimination.
p.000025:
p.000025: • Due process protections — Mechanisms should be in place to allow individuals whose liberty has been restricted to
p.000025: challenge the appropriateness of those restrictions, the way they are enforced, and the conditions under which the
p.000025: restrictions are carried out. If it is not feasible to provide full due process protection before the restrictions are
p.000025: implemented in an emergency scenario, mechanisms for review and appeal should be made
p.000025: available without excessive delay. All persons involved in decisions to restrict individuals’ freedom of movement
p.000025: should be accountable for any abuses of authority.
p.000025:
p.000025: • Equitable application — Restrictions on freedom of movement should be
p.000025: applied in the same manner to all 27
p.000025: persons posing a comparable public health risk. Thus, individuals should not be subject to greater or lesser
p.000025: restrictions for reasons unrelated to the
p.000025: risks they may pose to others, including membership in any disfavoured or favoured social group or class (for example,
p.000025: groups defined by gender, ethnicity, or religion). In addition, policy- makers should seek to ensure that restrictions
p.000025: are not applied in a manner that imposes a disproportionate burden on vulnerable segments of society.
p.000025:
p.000025: • Communication and transparency —
p.000025: Policy-makers and public health officials should engage communities in a dialogue about any restrictions on freedom of
p.000025: movement and solicit community members’ views on how restrictions can be carried out with the least possible burden.
p.000025: They should also provide regular updates on the implementation of such measures,
p.000025: both to the public at large and to those whose movement has been restricted. Communication strategies should be
p.000025: designed to avoid the stigmatization
p.000025: of individuals whose liberty has been restricted and to protect their privacy and confidentiality, particularly in the
p.000025: media.
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: 7. Obligations related to medical interventions for the diagnosis, treatment, and prevention of infectious disease
p.000028: 28
p.000028:
p.000028:
p.000028: Questions addressed:
p.000028:
p.000028: • What quality and safety standards should govern the administration of medical interventions offered during
p.000028: infectious disease outbreaks?
p.000028: • What rights do patients (or their authorized proxy decision-makers) have to receive information about the risks
p.000028: and benefits of, and alternatives to, medical interventions during infectious disease outbreaks?
p.000028: • Under what circumstances, if any, might it be appropriate to override an individual’s refusal of diagnostic,
p.000028: therapeutic, or preventive measures during an infectious disease outbreak?
p.000028: • What procedural safeguards should be provided before overriding an individual’s refusal of diagnostic,
p.000028: therapeutic, or preventive measures during an infectious disease outbreak?
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028: Any medical intervention for the diagnosis, treatment, or prevention of infectious disease should be provided in accord
p.000028: with professional medical standards, under conditions designed to ensure the highest attainable level of patient
p.000028: safety. Countries, with the support of international experts, should establish the minimum standards
p.000028: to be applied in the care and treatment of patients affected by an outbreak.
...
Searching for indicator restricted:
(return to top)
p.000023: allowing individuals to opt out of particular surveillance activities, taking into account the nature and degree of
p.000023: individual risks involved and the extent to which allowing opt-outs
p.000023: would undermine the activity’s public health goals.
p.000023:
p.000023: • Disclosing information to individuals and communities — Regardless of whether individuals are given the choice to
p.000023: opt out of surveillance activities, the process of surveillance should be conducted on a transparent basis. At a
p.000023: minimum, individuals and communities should be aware of the type of information
p.000023: that will be gathered about them, the purposes for which this information will be used, and any circumstances under
p.000023: which the information collected may be shared with third parties. In addition, information about the outcome of the
p.000023: surveillance activity should be made available as soon as reasonably possible.
p.000023: Careful attention should be given to the manner in which this information is communicated, in order to minimize
p.000023: the risk that subjects of surveillance may face stigmatization or discrimination.
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023: 6. Restrictions on freedom of movement
p.000023:
p.000023:
p.000023:
p.000025: 25
p.000025: Questions addressed:
p.000025:
p.000025: • Under what circumstances is it legitimate to restrict an individual’s freedom of movement during an infectious
p.000025: disease outbreak?
p.000025: • What living conditions should be assured for individuals whose freedom of movement has been restricted?
p.000025: • What other obligations are owed to individuals whose freedom of movement has been restricted?
p.000025: • What procedural protections must be established to ensure that restrictions on freedom of movement are carried
p.000025: out appropriately?
p.000025: • What are the obligations of policy-makers and public health officials to inform the public about restrictions on
p.000025: freedom of movement?
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: Restrictions on freedom of movement include isolation, quarantine, travel advisories or restrictions, and community-
p.000025: based measures to reduce contact between people (e.g. closing schools or prohibiting large gatherings). These measures
p.000025: can often play an important role in controlling infectious disease outbreaks, and in these circumstances, their use is
p.000025: justified by the ethical value of protecting community well- being. However, the effectiveness of these measures should
p.000025: not be assumed; in fact, under some epidemiological circumstances, they may contribute little or nothing to outbreak
p.000025: control efforts, and may even
p.000025: be counterproductive if they engender a backlash that leads to resistance to
p.000025: other control measures. Moreover, all such measures impose a significant burden on individuals and communities,
p.000025: including direct limitations of fundamental human rights, particularly the rights to freedom of movement and peaceful
p.000025: assembly.
p.000025:
p.000025: In light of these considerations, no restrictions on freedom of movement should be implemented without careful
p.000025: attention to the following considerations:
p.000025:
p.000025: • Justifiable basis for imposing restrictions — Decisions to impose restrictions on freedom of movement should be
p.000025: grounded on the best available evidence
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
...
p.000025: enforced by law or military authorities. Similarly, home-based quarantine should be considered before confining
p.000025: individuals in
p.000025: institutions. While isolation in a properly equipped health-care facility is usually recommended for individuals who
p.000025: are already symptomatic, especially for diseases with a high potential for contagiousness, home-based isolation may
p.000025: sometimes be appropriate, provided that adequate medical and
p.000025: logistical support can be organized and family attendants are willing and able to act under the oversight of trained
p.000025: public health staff. This is particularly true if the caseload overwhelms facility capacity.
p.000025:
p.000025: • Costs — In some cases, a less restrictive alternative may involve greater costs. This does not, in itself,
p.000025: justify more restrictive approaches. However, costs and other practical constraints (e.g. logistics, distance,
p.000025: available workforce) may legitimately be taken into account to determine whether a less restrictive alternative is
p.000025: feasible under the circumstances, particularly in settings with severe resource constraints.
p.000025:
p.000025: • Ensuring humane conditions — Any restrictions on freedom of movement, particularly those that are not voluntary,
p.000025: should be backed up with sufficient resources to ensure that those subject to the restrictions do not experience undue
p.000025: burdens. For example, individuals whose mobility is restricted (whether through confinement at home or
p.000025: in institutional settings) should be ensured access to food, drinking water, sanitary facilities, shelter, clothing,
p.000025: and medical care. It is also important to ensure that individuals have adequate physical space, opportunities to engage
p.000025: in activities, and the means
p.000025: to communicate with their loved ones and the outside world. Fulfilling these needs is essential to respect individual
p.000025: dignity and address the significant psychosocial burden of confinement on individuals and their loved ones. Mechanisms
p.000025: should be put in place to minimize the risk of violence (including sexual assault) and local disease
p.000025: transmission, especially when individuals are confined in institutional settings
p.000025: or when communities are under mass quarantine. At a minimum, persons who
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: are quarantined because they have been exposed to the pathogen responsible for the outbreak should not be put at
p.000025: heightened risk of infection because of the manner in which they are confined. (Decisions on the circumstances and
p.000025: conditions of confinement should consider the heightened needs of vulnerable populations, as discussed
p.000025: in Guideline 3.)
p.000025:
p.000025: • Addressing financial and social consequences — Even short-term restrictions on freedom of movement can have
p.000025: significant — and possibly devastating —financial and social consequences for individuals, their families, and their
p.000025: communities. Countries should provide assistance to households that suffer financial
p.000025: losses as a result of inability to conduct business, loss of a job, damage to crops, or other consequences of
p.000025: restrictions on freedom of movement. In some cases, this support may need to continue
p.000025: for a period following the end of confinement. In addition, efforts should be made to support the social and
p.000025: professional reintegration of individuals for whom confinement is no longer necessary, including measures to reduce
p.000025: stigmatization and discrimination.
p.000025:
p.000025: • Due process protections — Mechanisms should be in place to allow individuals whose liberty has been restricted to
p.000025: challenge the appropriateness of those restrictions, the way they are enforced, and the conditions under which the
p.000025: restrictions are carried out. If it is not feasible to provide full due process protection before the restrictions are
p.000025: implemented in an emergency scenario, mechanisms for review and appeal should be made
p.000025: available without excessive delay. All persons involved in decisions to restrict individuals’ freedom of movement
p.000025: should be accountable for any abuses of authority.
p.000025:
p.000025: • Equitable application — Restrictions on freedom of movement should be
p.000025: applied in the same manner to all 27
p.000025: persons posing a comparable public health risk. Thus, individuals should not be subject to greater or lesser
p.000025: restrictions for reasons unrelated to the
p.000025: risks they may pose to others, including membership in any disfavoured or favoured social group or class (for example,
p.000025: groups defined by gender, ethnicity, or religion). In addition, policy- makers should seek to ensure that restrictions
p.000025: are not applied in a manner that imposes a disproportionate burden on vulnerable segments of society.
p.000025:
p.000025: • Communication and transparency —
p.000025: Policy-makers and public health officials should engage communities in a dialogue about any restrictions on freedom of
p.000025: movement and solicit community members’ views on how restrictions can be carried out with the least possible burden.
p.000025: They should also provide regular updates on the implementation of such measures,
p.000025: both to the public at large and to those whose movement has been restricted. Communication strategies should be
p.000025: designed to avoid the stigmatization
p.000025: of individuals whose liberty has been restricted and to protect their privacy and confidentiality, particularly in the
p.000025: media.
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: 7. Obligations related to medical interventions for the diagnosis, treatment, and prevention of infectious disease
p.000028: 28
p.000028:
p.000028:
p.000028: Questions addressed:
p.000028:
p.000028: • What quality and safety standards should govern the administration of medical interventions offered during
p.000028: infectious disease outbreaks?
p.000028: • What rights do patients (or their authorized proxy decision-makers) have to receive information about the risks
p.000028: and benefits of, and alternatives to, medical interventions during infectious disease outbreaks?
p.000028: • Under what circumstances, if any, might it be appropriate to override an individual’s refusal of diagnostic,
p.000028: therapeutic, or preventive measures during an infectious disease outbreak?
p.000028: • What procedural safeguards should be provided before overriding an individual’s refusal of diagnostic,
p.000028: therapeutic, or preventive measures during an infectious disease outbreak?
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028: Any medical intervention for the diagnosis, treatment, or prevention of infectious disease should be provided in accord
p.000028: with professional medical standards, under conditions designed to ensure the highest attainable level of patient
p.000028: safety. Countries, with the support of international experts, should establish the minimum standards
p.000028: to be applied in the care and treatment of patients affected by an outbreak.
...
Social / Linguistic Proficiency
Searching for indicator language:
(return to top)
p.000015: representatives. Adequate communication platforms and tools should be put in place to facilitate
p.000015:
p.000015: public communication with health authorities.
p.000015:
p.000015: • Situations of particular vulnerability — As discussed further in Guideline 3, special attention should be given
p.000015: to ensuring that persons who face heightened susceptibility to harm or injustice during infectious disease outbreaks
p.000015: are able to contribute to decisions about infectious disease outbreak planning and response. Public health officials
p.000015: should recognize that such persons might be distrustful of government and other institutions, and make special efforts
p.000015: to include them in community engagement plans.
p.000015:
p.000015: • Openness to diverse perspectives — Communication efforts should be designed to facilitate a genuine
p.000015: two-way dialogue, rather than as merely a means to announce decisions
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015: that have already been made. Decision-makers should be prepared to recognize and debate alternative approaches and
p.000015: revise their decisions based on information they receive. Reaching out to the community early, and allowing for
p.000015: consideration of
p.000015: the interests of all people who will
p.000015: 16 potentially be affected, can play an important role in building trust and empowering communities to
p.000015: be involved in a genuine dialogue.
p.000015:
p.000015: • Transparency — The ethical principle of transparency requires that decision-makers publicly explain the basis for
p.000015: decisions in language that is
p.000015: linguistically and culturally appropriate.
p.000015: When decisions must be made in the face of uncertain information, the uncertainties should be explicitly acknowledged
p.000015: and conveyed to the public.
p.000015:
p.000015: • Accountability — The public should know who is responsible for making
p.000015: and implementing decisions in relation to the outbreak response, and how they can challenge decisions they believe are
p.000015: inappropriate.
p.000015:
p.000015: The media will play an important role in any infectious disease outbreak response effort. It is therefore important to
p.000015: ensure that the media has access to accurate and timely information about the disease and its management. Governments,
p.000015: nongovernmental organizations, and
p.000015: academic institutions should make efforts to support media training in relevant scientific concepts and techniques for
p.000015: communicating risk information without raising unnecessary alarm. Media training is important for public health sector
p.000015: employees who may interact with media covering public health issues.
p.000015: In turn, the media has a responsibility to provide accurate, factual, and balanced reporting. This is an important
p.000015: component of media ethics.
p.000015:
p.000015:
p.000015: Cholera outbreak in Sierra Leone
p.000015: Source: Fid Thompson
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015: 3. Situations of particular vulnerability
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
...
p.000017: government actors.
p.000017:
p.000017: Efforts to address the ways in which individuals and groups may be vulnerable should take into account the following:
p.000017: • Difficulty accessing services and resources — Many of the
p.000017: characteristics that contribute to social vulnerability can make it difficult
p.000017: for individuals to access necessary services. For example, persons with physical disabilities may have mobility
p.000017: impairments that make travelling even short distances difficult or impossible.
p.000017: Other socially vulnerable persons may lack access to safe and reliable transportation or have caregiving
p.000017: responsibilities that make it difficult for them to leave their homes. In addition, vulnerable persons may lack access
p.000017: to necessary resources such as clean water or bednets to reduce the risk of contracting a mosquito-borne disease.
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: • Need for effective alternative communication strategies — Some types of vulnerability can impede
p.000017: an individual’s ability to transmit or receive information. Communication barriers can stem from a wide range of
p.000017: factors including, but not limited to, illiteracy, unfamiliarity with the
p.000017: 18 local or official language(s), vision or
p.000017: hearing impairments, social isolation, or lack of access to Internet and other communication services. These barriers
p.000017: make it difficult for individuals to receive necessary public health messages
p.000017: or to participate fully in community engagement activities. To overcome these barriers, messages should be delivered in
p.000017: multiple formats (e.g. radio, text messages, billboards, cartoons) as well as direct oral communication with key
p.000017: stakeholders. Health authorities should not assume that the public will search for information; instead, they should
p.000017: proactively reach out to the concerned population wherever they are.
p.000017:
p.000017: • Impact of stigmatization and discrimination — Members of socially disadvantaged groups often face considerable
p.000017: stigma and discrimination, which can be exacerbated in public health emergencies characterized by fear and distrust.
p.000017: Those responsible for infectious disease outbreak response should ensure that all individuals are treated fairly and
p.000017: equitably regardless of their social status or perceived “worth” to society. They should also take measures to prevent
p.000017: stigmatization and social violence.
p.000017:
p.000017: • Disproportionate burdens of outbreak response measures — Even when public health measures
p.000017: are designed with the best of intentions, they can inadvertently place a disproportionate burden on particular
...
Searching for indicator linguistic:
(return to top)
p.000017: equitably regardless of their social status or perceived “worth” to society. They should also take measures to prevent
p.000017: stigmatization and social violence.
p.000017:
p.000017: • Disproportionate burdens of outbreak response measures — Even when public health measures
p.000017: are designed with the best of intentions, they can inadvertently place a disproportionate burden on particular
p.000017: populations. For example, quarantine orders that require individuals to stay
p.000017: in their homes can have devastating consequences for persons who need to leave their homes to obtain basic
p.000017: necessities such as clean water or food. Similarly, social distancing measures such as school closures can place
p.000017: disproportionate burdens on children who depend on going to school to access regular meals, as well as on working
p.000017: parents who may have no one available to provide child care.
p.000017:
p.000017: • Greater need for resources — Accommodating the needs of individuals whose situation makes them particularly
p.000017: vulnerable sometimes requires the use of additional resources.
p.000017: In some cases, additional resources are relatively minimal, such as when an interpreter is hired to make
p.000017: a community engagement forum accessible to members of a linguistic minority group. In other cases, they may be more
p.000017: substantial, such as when mobile health teams are assembled to dispatch vaccines and treatments to hard-to-reach rural
p.000017: areas. It is legitimate to take costs into consideration in determining whether a particular accommodation is
p.000017: warranted; indeed, the goal of maximizing utility demands that such assessments be made.
p.000017: However, despite the importance of conserving limited resources, the ethical principle of equity may sometimes justify
p.000017: providing greater resources to persons who have greater needs.
p.000017:
p.000017: • Heightened risk of violence — Infectious disease outbreaks can
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: exacerbate social unrest, increase criminality, and induce violent behaviour, especially against vulnerable groups such
p.000017: as minority populations
p.000017: or migrants. In addition, public health measures such as home isolation, quarantine, or closure of schools and work
p.000017: facilities can induce violence, particularly against women and children. Officials involved in outbreak planning and
p.000017: response efforts should be prepared for the possibility that
p.000017: specific populations may be targeted as being the cause of the outbreak or provoking transmission; strategies should be
...
p.000030: should ensure that clinical trials are not initiated unless there is a reasonable scientific basis to believe that the
p.000030: experimental intervention is likely
p.000030: to be safe and efficacious, and that the risks have been minimized to the extent reasonably possible. In addition,
p.000030: researchers and ethics committees should recognize that, during an outbreak, prospective participants may be especially
p.000030: prone to the therapeutic misconception — that is, the mistaken view that the intervention is primarily designed to
p.000030: directly benefit the individual participants, as opposed to developing generalizable knowledge for the potential
p.000030: benefit of persons
p.000030: in the future. Indeed, researchers themselves, as well as humanitarian aid workers, may sometimes fail
p.000030: to distinguish between engaging in research and providing ordinary
p.000030: clinical care. Efforts should be made to dispel the therapeutic misconception to the extent reasonably possible.
p.000030: Despite such efforts, some prospective participants may still not fully appreciate the difference between research and
p.000030: ordinary medical care, and this should not in itself preclude their enrolment.
p.000030:
p.000030: • Addressing other barriers to informed consent — In addition to the impact of fear and desperation,
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030: other factors can challenge researchers’ ability to obtain informed consent to research; these range from cultural and
p.000030: linguistic differences between foreign researchers and local participants, to the fact that prospective participants in
p.000030: quarantine or isolation may be cut off from their families and other support
p.000030: systems and feel powerless to decline an invitation to participate in research. To the extent possible, consent
p.000030: processes compatible with international research ethics guidelines should be developed
p.000030: in consultation with local communities and implemented by locally recruited personnel. In addition, researchers should
p.000030: be well informed about the medical, psychological and social support systems available locally so that they can guide
p.000030: participants in need towards these services. In some situations, it may be necessary to develop rapid mechanisms for
p.000030: appointing proxy decision-makers, such as during outbreaks of diseases that affect cognitive abilities, or when
p.000030: an outbreak leaves a large number of children as orphans.
p.000030:
p.000030: • Gaining and maintaining trust — Failure to build and maintain community trust during the process of research
p.000030: design and implementation, or when disclosing preliminary results, will not only impede study recruitment and
p.000030: completion but may also undermine
p.000030: the uptake of any interventions proven to be efficacious. Engaging with affected communities before, during, and after
p.000030: a study is essential to build and maintain trust. In environments in which the public’s trust in government is fragile,
p.000030: researchers should remain as independent as possible from official public health activities. If government workers are
p.000030: themselves involved in
...
p.000047: • What obligations do foreign aid workers have before, during, and after deployment?
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047: Foreign governments and humanitarian aid organizations that deploy workers in infectious disease outbreaks have ethical
p.000047: obligations to both the workers themselves and the affected communities. These obligations include the following:
p.000047:
p.000047: • Coordination with local officials — Foreign governments and external humanitarian aid organizations should deploy
p.000047: workers following discussion and agreement with local officials about their roles and responsibilities or, if
p.000047: this is not possible, with international organizations like WHO. Organizations working in a particular area should
p.000047: register their presence as a foreign Emergency Medical Team (EMT) with
p.000047: the local government, and have ongoing discussions among themselves and with the local government to clarify and
p.000047: coordinate their roles
p.000047: and responsibilities and address any disparities in standards of practice. Efforts should be coordinated with local
p.000047: authorities and care providers to
p.000047: ensure that the foreign agency does not excessively draw resources away from other essential services.
p.000047:
p.000047: • Fairness in assigning foreign workers for deployment — Foreign aid workers should be deployed only if they are
p.000047: capable of providing necessary services not sufficiently available in the local setting. Assignment of foreign
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047: health workers should take into consideration their relevant skills and knowledge, as well as their linguistic and
p.000047: cultural competencies to meet mission objectives and understand and communicate with affected communities. It is
p.000047: inappropriate to deploy unqualified or unnecessary
p.000047: 48 workers solely to satisfy their personal
p.000047: or professional desire to be helpful (so-called “disaster tourism”).
p.000047:
p.000047: • Clarity about conditions of deployment — Prospective foreign aid workers should be given
p.000047: comprehensive information about the project’s expectations and risks so they can make informed decisions about whether
p.000047: or not they will be able to make appropriate contributions. In addition, foreign aid workers should be clearly
p.000047: informed of the conditions of their deployment, including the level of health care they can expect if they become ill,
p.000047: the circumstances under
p.000047: which they will be repatriated, available insurance, and whether benefits will
p.000047: be provided to their families in case of illness or death.
p.000047:
p.000047: • Provision of necessary training and resources — Aid workers must be provided with appropriate
p.000047: training, preparation, and equipment to ensure that they can effectively carry out their mission with the lowest risks
p.000047: practicable. Training should include preparation in psychosocial and communication skills, and in understanding and
p.000047: respecting the local culture and traditions. Managers and organizations have an obligation to provide adequate support
p.000047: and guidance to the staff, both during their activity in the field and following
p.000047: their mission. This should include training and resources for managing challenging ethical issues, such as resource
...
Social / Marital Status
Searching for indicator single:
(return to top)
p.000020: guidelines should be developed through an open and transparent process involving broad stakeholder input and, to the
p.000020: extent
p.000020: possible, should be incorporated into formal written documents that establish clear priorities and procedures. Those
p.000020: involved
p.000020: in developing these guidelines should be guided by the following considerations:
p.000020:
p.000020: • Balancing considerations of utility and equity — Resource allocation decisions should be guided by the ethical
p.000020: principles of utility and equity. The principle of utility requires allocating resources to maximize benefits and
p.000020: minimize burdens, while the principle of equity requires attention to the fair distribution of benefits
p.000020: and burdens. In some cases, an equal distribution of benefits and burdens may be considered fair, but in others, it may
p.000020: be fairer to give preference to groups that are worse off, such as the poor, the sick, or the vulnerable. It is not
p.000020: always be possible to achieve fully both utility and equity. For example, establishing treatment centres in large urban
p.000020: settings promotes the value of utility because it makes it possible to treat a large number of people with relatively
p.000020: few resources. However, such
p.000020: an approach may be in tension with the principle of equity if it means that fewer resources will be directed to
p.000020: isolated communities in remote rural areas.
p.000020: There is no single correct way to resolve potential tensions between utility
p.000020: and equity; what is important is that decisions are made through an inclusive and transparent process that takes into
p.000020: account local circumstances.
p.000020: • Defining utility on the basis of health-related considerations —
p.000020: In order to apply the ethical principle of utility, it is first necessary to identify the type of outcomes that will be
p.000020: counted as improvements to welfare. In general, the focus should be on the health-related benefits of allocation
p.000020: mechanisms, whether defined in terms 21
p.000020: of the total number of lives saved, the total number of life years saved, or the total number of quality-adjusted life
p.000020: years saved. For this reason,
p.000020: while it might be ethical to prioritize persons who are essential to manage an outbreak, it is not appropriate to
p.000020: prioritize persons based on social value considerations unrelated to carrying out critical services necessary for
p.000020: society.
p.000020:
p.000020: • Paying attention to the needs of vulnerable populations — In applying the ethical principle of equity, special
p.000020: attention should be given to individuals and groups that are the most vulnerable to discrimination, stigmatization, or
p.000020: isolation, as discussed in Guideline 3.
p.000020: Particular consideration must be given to individuals who are confined in institutional settings, where they are highly
p.000020: dependent on others and
p.000020: potentially exposed to much higher risks of infection than persons living in the community.
p.000020:
...
Social / Mothers
Searching for indicator mothers:
(return to top)
p.000041:
p.000041: • Attention to social and cultural practices — Gender-related roles and practices can affect all aspects of
p.000041: infectious disease outbreaks, including
p.000041: individuals’ risk of becoming infected, the consequences of infection, their use of health services and other
p.000041: health-seeking behaviours, and their vulnerability to interpersonal violence.
p.000041: Policy-makers and outbreak responders should identify and respond to these factors, drawing when possible
p.000041: on relevant anthropological and sociological research.
p.000041:
p.000041: • Sex- and gender-sensitive communication strategies —
p.000041: Entities responsible for developing and implementing communication strategies should be sensitive to sex- and gender-
p.000041: based differences in how individuals have access to and respond to health- related information. Separate messages and
p.000041: communication strategies may be needed to provide relevant information to particular subgroups, such as pregnant women
p.000041: or nursing mothers.
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: Influenza in India
p.000041: Source: Tom Pietrasik, WHO
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: 13. Frontline response workers’ rights and obligations
p.000041:
p.000041:
p.000041:
p.000043: 43
p.000043: Questions addressed:
p.000043:
p.000043: • What obligations exist to protect the health of frontline workers who participate in infectious disease outbreak
p.000043: response efforts?
p.000043: • What obligations exist to provide material support to frontline workers who participate in infectious disease
p.000043: outbreak response efforts?
p.000043: • To what extent do these obligations extend to the workers’ family?
p.000043: • What should be taken into account in determining whether individuals have an obligation to serve as frontline
p.000043: workers during infectious disease outbreaks?
p.000043: • What special obligations do workers in the health-care sector have during infectious disease outbreaks?
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: An effective infectious disease outbreak response depends on the contribution of
p.000043: a diverse range of frontline workers, some of whom may be working on a volunteer basis. These workers often assume
p.000043: considerable personal risk to carry out their jobs. Within the health-care sector, frontline workers range from
p.000043: health-care professionals
...
Social / Occupation
Searching for indicator job:
(return to top)
p.000025: and medical care. It is also important to ensure that individuals have adequate physical space, opportunities to engage
p.000025: in activities, and the means
p.000025: to communicate with their loved ones and the outside world. Fulfilling these needs is essential to respect individual
p.000025: dignity and address the significant psychosocial burden of confinement on individuals and their loved ones. Mechanisms
p.000025: should be put in place to minimize the risk of violence (including sexual assault) and local disease
p.000025: transmission, especially when individuals are confined in institutional settings
p.000025: or when communities are under mass quarantine. At a minimum, persons who
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: are quarantined because they have been exposed to the pathogen responsible for the outbreak should not be put at
p.000025: heightened risk of infection because of the manner in which they are confined. (Decisions on the circumstances and
p.000025: conditions of confinement should consider the heightened needs of vulnerable populations, as discussed
p.000025: in Guideline 3.)
p.000025:
p.000025: • Addressing financial and social consequences — Even short-term restrictions on freedom of movement can have
p.000025: significant — and possibly devastating —financial and social consequences for individuals, their families, and their
p.000025: communities. Countries should provide assistance to households that suffer financial
p.000025: losses as a result of inability to conduct business, loss of a job, damage to crops, or other consequences of
p.000025: restrictions on freedom of movement. In some cases, this support may need to continue
p.000025: for a period following the end of confinement. In addition, efforts should be made to support the social and
p.000025: professional reintegration of individuals for whom confinement is no longer necessary, including measures to reduce
p.000025: stigmatization and discrimination.
p.000025:
p.000025: • Due process protections — Mechanisms should be in place to allow individuals whose liberty has been restricted to
p.000025: challenge the appropriateness of those restrictions, the way they are enforced, and the conditions under which the
p.000025: restrictions are carried out. If it is not feasible to provide full due process protection before the restrictions are
p.000025: implemented in an emergency scenario, mechanisms for review and appeal should be made
p.000025: available without excessive delay. All persons involved in decisions to restrict individuals’ freedom of movement
p.000025: should be accountable for any abuses of authority.
p.000025:
p.000025: • Equitable application — Restrictions on freedom of movement should be
p.000025: applied in the same manner to all 27
p.000025: persons posing a comparable public health risk. Thus, individuals should not be subject to greater or lesser
p.000025: restrictions for reasons unrelated to the
...
p.000043: level, and the provision of personal protective equipment. Regular screening of frontline workers should be put
p.000043: in place to detect any infection as quickly as possible, in order to initiate immediate care and minimize the risk of
p.000043: transmission to colleagues, patients, families, and community members.
p.000043:
p.000043: • Priority access to health care — Frontline workers who become sick, as well as any immediate family members who
p.000043: become ill through contact with the worker, should be ensured access to the highest level of care reasonably available.
p.000043: In addition, countries should consider giving frontline workers and their families priority access to vaccines
p.000043: and other treatments as they become available.
p.000043:
p.000043: • Appropriate remuneration — Frontline workers should be given fair remuneration for their work. Governments should
p.000043: ensure that public sector workers are paid in
p.000043: a timely manner, and make efforts to ensure that actors in the private and nongovernmental sectors fulfil their own
p.000043: obligations to pay their employees and contractors. Fair remuneration for frontline workers includes the provision of
p.000043: financial support during periods in which workers are unable to carry out their normal responsibilities because of an
p.000043: infection acquired on the job.
p.000043:
p.000043: • Support for reintegrating into the community — Frontline workers may experience stigma and discrimination,
p.000043: particularly those involved in unpopular measures such as infection control or burials not conducted according to
p.000043: the traditional customs. Governments should make efforts to reduce the risk of stigmatization and discrimination and
p.000043: help such workers to reintegrate into the community, including by providing job placement assistance and relocation to
p.000043: other communities if needed.
p.000043:
p.000043: • Assistance to family members — Assistance should be provided to families of frontline workers who need to remain
p.000043: away from home in order
p.000043: to carry out their responsibilities or to recuperate from illness. Death benefits should be provided to family members
p.000043: of frontline workers who die in the line of duty, including those who were volunteers or “casual workers.”
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: As noted above, some workers may have a duty to work during an infectious
p.000043: disease outbreak. However, even for these individuals, the duty to assume risk is not unlimited. In determining the
p.000043: scope of workers’ duties to assume personal risks, the following factors should be taken into account:
p.000043:
p.000043: • Reciprocal obligations — Any professional or employment-based obligation to assume personal risk is contingent on
p.000043: society’s fulfilment of its reciprocal obligations to workers, as outlined above. If the reciprocal obligations are not
p.000043: met, frontline
p.000043: workers cannot legitimately be expected to assume a significant risk of harm to themselves and their families.
p.000043:
p.000043: • Risks and benefits — Frontline workers should not be expected to expose themselves to risks that are
p.000043: disproportionate to the public health
p.000043: benefits their efforts are likely to achieve.
p.000043:
p.000043: • Equity and transparency — Entities responsible for assigning frontline workers to specific tasks should ensure
p.000043: that risks are distributed among individuals and occupational categories in an equitable manner, and that the process
p.000043: of assigning workers is as transparent as possible.
p.000043:
p.000043: • Consequences for non- participation — Frontline workers should be informed of the risks they are being asked to
p.000043: assume. Insofar as possible, expectations should be made clear in written employment agreements. Workers who are
p.000043: unwilling to accept reasonable risks and work assignments may be subject to professional repercussions
p.000043: (for example, loss of their job), but additional punishments, such as fines or imprisonment, are generally unwarranted.
p.000043: Persons responsible for assessing the consequences for non- participation should recognize that
p.000043: workers may sometimes need to balance other obligations, such as duty to family,
p.000043: against job-related responsibilities. 45
p.000043:
p.000043: Additional obligations of those working in the health‑care sector:
p.000043:
p.000043: In addition to the issues addressed above, persons working in the health-care sector have obligations to the community
p.000043: during an infectious disease outbreak, including the following:
p.000043:
p.000043: • Participate in public health surveillance and reporting efforts — Persons working in the health sector have an
p.000043: obligation to participate in organized measures to respond to infectious disease outbreaks, including public health
p.000043: surveillance and reporting. Health-care providers should protect the confidentiality of patient information to the
p.000043: maximum extent compatible with legitimate public health interests.
p.000043:
p.000043: • Provide accurate information to the public — During an infectious disease outbreak, public health officials have
p.000043: the primary responsibility to communicate information about the outbreak pathogen, including how
p.000043: it is transmitted, how infection can be prevented, and what treatments or preventive measures may be effective. Those
p.000043: responsible for designing communication strategies should anticipate and respond to misinformation, exaggeration, and
p.000043: mistrust, and should seek (without
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: withholding key information) to minimize the risk that information about risk factors will lead to stigmatization and
...
Social / Police Officer
Searching for indicator officer:
(return to top)
p.000054: Kingdom
p.000054: Ms Jeanine Thomas, Patient Safety Champion, United States of America
p.000054: Professor Aisssatou Touré, Head, Immunology Department, Institut Pasteurde Dakar,,Senegal Professor Ross Upshur, Chair
p.000054: in Primary Care Research; Professor, Department of Family and Community Medicine and Dalla Lana School of Public
p.000054: Health, University of Toronto; Canada
p.000054:
p.000054: Resource persons
p.000054: Dr Daniel Bausch, Head, Virology and Emerging Infections Department, US Naval Medical Research Unit No. 6, Peru
p.000054: Professor Luciana Borio, Assistant Commissioner for Counterterrorism Policy; Director, Office of Counterterrorism and
p.000054: Emerging Threats, Food and Drug Administration, United States of America
p.000054: Dr Frederick Hayden, Professor of Clinical Virology and Professor of Medicine, University of Virginia School of
p.000054: Medicine, United States of America
p.000054: Dr Stephan Monroe, Deputy Director, National Centre for Emerging and Zoonotic Infectious Diseases, Centers for Disease
p.000054: Control and Prevention, United States of America
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054: WHO Secretariat
p.000054:
p.000054: WHO headquarters, Geneva, Switzerland
p.000054: Dr Margaret Chan, Director-General
p.000054: Dr Marie-Paule Kieny, Assistant Director-General, Health Systems and Innovation Dr Marie-Charlotte Bouesseau, Ethics
p.000054: Advisor, Service Delivery and Safety
p.000054: Dr Pierre Formenty, Scientist, Control of Epidemic Diseases, Department of Pandemic and Epidemic Diseases
p.000054: 56 Dr Margaret Harris, Communication Officer, Department of Pandemic and Epidemic
p.000054: Diseases
p.000054: Mr Gregory Hartl, Coordinator, Department of Communications Dr Rüdiger Krech, Director, Health Systems and Innovation
p.000054: Dr Andreas Reis, Technical Officer, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000054: Dr Cathy Roth, Adviser, Office of the Assistant Director-General, Health Systems and Innovation
p.000054: Dr Vasee Sathyamoorthy, Technical Officer, Initiative for Vaccine Research, Department of Immunization, Vaccines and
p.000054: Biologicals
p.000054: Dr Abha Saxena, Coordinator, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000054: Dr David Wood, Coordinator, Technologies Standards and Norms, Department of Essential Medicines and Health Products
p.000054:
p.000054: Regional offices
p.000054: Dr Marion Motari, Partnership and Resource Mobilization, Regional Office for Africa, Brazzaville, Congo
p.000054: Dr Martin Ota, Medical Officer, Health Information and Knowledge Management, Regional Office for Africa, Brazzaville,
p.000054: Congo
p.000054: Dr Carla Saenz, Bioethics Advisor, Regional Office for the Americas, Washington DC, United States of America
p.000054:
p.000054: Consultation on potential Ebola therapies and vaccines: Pre‑meeting of the Ethics Working Group, World Health
p.000054: Organization, Geneva, 3 September 2014
p.000054:
p.000054: Participants
p.000054: Professor Clement Adebamowo, Chair, National Research Ethics Committee, Nigeria Dr Philippe Calain, Senior Researcher,
p.000054: Unit of Research on Humanitarian Stakes and Practices, Médecins Sans Frontières, Switzerland
p.000054: Dr Marion Danis, Head, Ethics and Health Policy and Chief, Bioethics Consultation Service, National Institutes of
p.000054: Health, United States of America
p.000054: Professor Jeremy Farrar, Director, Wellcome Trust, United Kingdom
p.000054: Professor Jennifer Gibson, Sun Life Financial Chair in Bioethics; Director, Joint Centre for Bioethics; and Associate
p.000054: Professor, Institute of Health Policy, Management and Evaluation, University of Toronto, Canada
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054: Ms Robinah Kaitiritimba, Patient Representative (community representative, Makerere University Institutional Review
p.000054: Boards; Uganda National Health Consumers’ Organisation), Uganda
p.000054: Dr Bocar Kouyate, Special Advisor to the Minister of Health (former Chair of National Ethics Committee), Burkina Faso
p.000054: Professor Cheikh Niang, Université Cheikh Anta Diop, Senegal
p.000054: Professor Michael Selgelid,Director, Centre for Human Bioethics, Monash University, Australia Professor Oyewale Tomori
p.000054: (Chair), President, Nigeria National Academy of Sciences, Nigeria
p.000054: Dr Aissatou Touré (Co-Chair), Head, Immunology Department, Institut Pasteur de Dakar and 57
p.000054: Member, National Ethics Committee, Senegal
p.000054:
p.000054: WHO Secretariat
p.000054:
p.000054: WHO headquarters, Geneva, Switzerland
p.000054: Dr Andreas Reis, Technical Officer, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000054: Dr Abha Saxena, Coordinator, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000054:
p.000054: WHO Regional Office
p.000054: Dr Carla Saenz, Bioethics Advisor, Regional Office for the Americas, Washington DC, United States of America
p.000054:
p.000054: Ethical issues related to study design for trials on therapeutics, World Health Organization, Geneva, 20–21 October
p.002014: 2014
p.002014:
p.002014: Ethics Working Group
p.002014: Professor Arthur Caplan, Drs William F and Virginia Connolly Mitty; Director, Division of Medical Ethics, New York
p.002014: University Langone Medical Center’s Department of Population Health, United States of America
p.002014: Dr Clare Chandler, Senior Lecturer, Medical Anthropology, Department of Global Health and Development, London School of
p.002014: Hygiene and Tropical Medicine, United Kingdom
p.002014: Dr Alpha Ahmadou Diallo, Administrator, National Ethics Committee, Ministry of Health and Public Hygiene, Guinea
p.002014: Dr Amar Jesani, Independent Researcher and Teacher, Bioethics and Public Health; Editor, Indian Journal of Medical
p.002014: Ethics; Visiting Professor, Centre for Ethics, Yenepoya University, India Dr Dan O’Connor, Head, Medical Humanities,
p.002014: Wellcome Trust, United Kingdom
...
p.002014: Dr Elizabeth Higgs, Global Health Science Advisor, Office of the Director, Division of Clinical Research, National
p.002014: Institute of Allergy and Infectious Diseases, National Institutes of Health, United States of America
p.002014: Dr Nadia Khelef, Senior Advisor, Global Affairs, Institut Pasteur, France
p.002014: Professor Trudie Lang, Lead Professor, Global Health Network, Nuffield Department of Medicine, University of Oxford,
p.002014: United Kingdom
p.002014: Dr Matthew Lim, Senior Advisor, Global Health Security, Department of Health and Human Services, United States of
p.002014: America
p.002014: Professor Ira Longini, Professor of Biostatistics, Department of Biostatistics, College of Public Health and College of
p.002014: Medicine, University of Florida, United States of America
p.002014: Colonel Scott Miller, Director, Infectious Disease Clinical Research Program, Department of Preventive Medicine,
p.002014: Uniformed Services University, United States of America
p.002014: Ms Adeline Osakwe, Head, National Pharmacovigilance Centre, National Agency for Food and Drug Administration and
p.002014: Control, Nigeria
p.002014: Ms Virginie Pirard, Member, Belgian Advisory Committee on Bioethics; Ethics Advisor, Institut Pasteur, France
p.002014: Dr Micaela Serafini, Medical Director, Médecins Sans Frontières, Switzerland
p.002014: Mr Jemee Tegli, Institutional Review Board Administrator, University of Liberia–Pacific Institute for Research and
p.002014: Evaluation Institutional Review Board, Liberia
p.002014: Dr Gervais Tougas, Representative, International Federation of Pharmaceutical Manufacturers & Associations, Chief
p.002014: Medical Officer, Novartis, Switzerland
p.002014: Dr Johan van Griensven, Department of Clinical Sciences, Institute of Tropical Medicine, Belgium
p.002014: Professor John Whitehead, Emeritus Professor, Department of Mathematics and Statistics, Fylde College, Lancaster
p.002014: University, United Kingdom
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014: WHO Secretariat
p.002014: Dr Marie-Paule Kieny, Assistant Director-General, Health Systems and Innovation Dr Marie-Charlotte Bouesseau, Advisor,
p.002014: Department of Service Delivery and Safety Dr Vânia de la Fuente-Núñez,Technical Officer, Global Health Ethics,
p.002014: Department of Knowledge, Ethics and Research
p.002014: Dr Martin Friede, Scientist, Public Health, Innovation and Intellectual Property, Department of Essential Medicines and
p.002014: Health Products
p.002014: Ms Marisol Guraiib, Technical Officer, Global Health Ethics, Department of Knowledge,
p.002014: Ethics and Research
p.000059: 59
p.000059: Ms Corinna Klingler, Intern, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059: Dr Selena Knight, Intern, Global Health Ethics, Department of Knowledge, Ethics and Research Dr Nicola Magrini,
p.000059: Scientist, Policy, Access and Use, Department of Essential Medicines and Health Products
p.000059: Dr Cathy Roth, Adviser, Office of the Assistant Director-General, Health Systems and Innovation Dr Vasee
p.000059: Sathiyamoorthy, Technical Officer, Initiative for Vaccine Research, Department of Immunization, Vaccines and
p.000059: Biologicals
p.000059: Dr Abha Saxena, Coordinator, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059: Dr David Wood, Coordinator, Technologies, Standards and Norms, Department of Essential Medicines and Health Products
p.000059:
p.000059: Developing ethics guidelines for public health responses during epidemics, including for the conduct of related
p.000059: research, Dublin, Ireland, 25–26 May 2015
p.000059:
p.000059: Participants
p.000059: Dr Annick Antierens, Manager, Investigational Platform for Experimental Ebola Products, Médecins Sans Frontières,
p.000059: Switzerland
p.000059: Dr Philippe Calain, Senior Researcher, Unit of Research on Humanitarian Stakes and Practices, Médecins Sans Frontières,
p.000059: Switzerland
p.000059: Dr Edward Cox, Director, Office of Antimicrobial Products, Food and Drug Administration, United States of America
p.000059: Professor Heather Draper, Professor of Biomedical Ethics, University of Birmingham, United Kingdom
p.000059: Dr Sarah Edwards, Senior Lecturer in Research Ethics and Governance, University College London, United Kingdom
p.000059: Professor Jónína Einarsdóttir, Medical Anthropology, School of Social Sciences, University of Iceland, Iceland
p.000059: Professor Jeremy Farrar, Director, Wellcome Trust, United Kingdom
p.000059: Dr Margaret Fitzgerald, Public Health Specialist, Irish Health Service Executive, Ireland Dr Gabriel Fitzpatrick,
...
p.000059: Administration, United States of America
p.000059: Professor Alistair Nichol, Consultant Anaesthetist, School of Medicine and Medical Sciences, and EU projects,
p.000059: University College Dublin, Ireland
p.000059: Professor Lisa Schwartz, Arnold Johnson Chair in Health Care Ethics, Ethics in Health Care, McMaster University, Canada
p.000059: Professor Michael Selgelid, Director, Centre for Human Bioethics, Monash University, Australia Dr Kadri Simm, Associate
p.000059: Professor of Practical Philosophy, University of Tartu, Estonia
p.000059: Dr Aissatou Touré, Head, Immunology Department, Institut Pasteur de Dakar and Member, National Ethics Committee,
p.000059: Senegal
p.000059: Professor Ross Upshur, Canada Research Chair in Primary Care Research; Professor, Department of Family and Community
p.000059: Medicine and Dalla Lana School of Public Health, University of Toronto, Canada
p.000059: Dr Maria Van Kerkhove, Centre for Global Health, Institut Pasteur, France
p.000059: Dr Aminu Yakubu, Department of Health Planning and Research, Federal Ministry of Health, Nigeria
p.000059:
p.000059: Resource person
p.000059: Professor Carl Coleman (Rapporteur), Professor of Law and Academic Director, Division of Online Learning, Seton Hall
p.000059: University, New Jersey, United States of America
p.000059:
p.000059: WHO headquarters Secretariat, Geneva, Switzerland
p.000059: Dr Vânia de la Fuente-Núñez, Technical Officer, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059: Dr Andreas Reis, Technical Officer, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059: Dr Abha Saxena, Coordinator, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059: Meeting to develop WHO Guidance on ethics and epidemics. Prato, Italy, 22–24 November 2015
p.000059:
p.000059: Participants
p.000059: Dr Franklyn Prieto Alvarado, Universidad Nacional de Colombia, Colombia Dr Annick Antierens, Médecins Sans Frontières,
p.000059: Switzerland
p.000059: Professor Oumou Younoussa Bah-Sow, Ignace Deen National Hospital, Guinea Dr Ruchi Baxi, The Ethox Centre, United
p.000059: Kingdom
p.000059: Dr Ron Bayer, Mailman School of Public Health, United States of America
p.000061: 61
p.000061: Dr Oscar Cabrera, Executive Director, O’Neill Institute for National and Global Health Law, Georgetown University Law
p.000061: Center, United States of America
p.000061: Dr Philippe Calain, Senior Researcher, Research on Humanitarian Stakes and Practices, Médecins Sans Frontières,
p.000061: Switzerland
p.000061: Dr Voo Teck Chuan, National Academy of Health Sciences, India
p.000061: Professor Alice Desclaux, Institut de Recherche pour le Développement, Unité TRANSVIHMI, Centre Régional de Recherche
p.000061: et de Formation sur le VIH et les Maladies Associées, Hôpital de Fann, Sénégal
p.000061: Dr Benedict Dossen, National Research Ethics Board, University of Liberia–Pacific Institute for Research and
p.000061: Evaluation, Africa Center Institutional Review Board, Liberia
...
p.000061: Transplantation, Pakistan
p.000061: Dr Dónal O’Mathúna, Dublin City University, Ireland
p.000061: Professor Mahmudur Rahman, Director, Institute of Epidemiology, Disease Control and Research; National Influenza
p.000061: Center, Ministry of Health and Family Welfare, Bangladesh Professor Lisa Schwartz, Arnold Johnson Chair in Health Care
p.000061: Ethics, McMaster Ethics in Healthcare, McMaster University, Canada
p.000061: Professor Michael Selgelid, Director, Centre for Human Bioethics, Monash University, Australia Dr Aissatou Touré, Head,
p.000061: Immunology Unit, Institut Pasteur de Dakar, Senegal
p.000061: Dr Maria Van Kerkhove, Centre for Global Health, Institut Pasteur, France
p.000061:
p.000061:
p.000061:
p.000061:
p.000061:
p.000061:
p.000061:
p.000061:
p.000061: Observer
p.000061: Dr Katherine Littler, Senior Policy Adviser, Policy Department, Wellcome Trust, United Kingdom
p.000061:
p.000061: Resource consultants
p.000061: Professor Carl Coleman, Professor of Law and Academic Director, Division of Online Learning, Seton Hall University, New
p.000061: Jersey, United States of America
p.000061: Dr Michele Loi (Rapporteur), Post-doctoral research fellow, ETH Zürich, Switzerland
p.000061: Dr Diego Silva, Assistant Professor, Faculty of Health Sciences, Simon Fraser University, Canada
p.000062: 62
p.000062: WHO headquarters Secretariat, Geneva, Switzerland
p.000062: Dr Pierre Formenty, Scientist, Control of Epidemic Diseases, Department of Pandemic and Epidemic Diseases
p.000062: Dr Vânia de la Fuente-Núñez,Technical Officer, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000062: Dr Andreas Reis, Technical Officer Global Health Ethics, Department of Knowledge, Ethics and Research
p.000062: Dr Abha Saxena, Coordinator, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000062:
p.000062:
p.000062:
p.000062:
p.000062:
p.000062:
p.000062:
p.000062:
p.000062:
p.000062: Infectious disease outbreaks are frequently characterized by scientific uncertainty, social and
p.000062: institutional disruption, and an overall climate of fear and distrust. Invariably, the countries most affected by
p.000062: outbreaks have limited resources, under-developed legal and regulatory structures, and health systems that
p.000062: lack the resilience to deal with crisis situations. Policy-makers and public health professionals may be
p.000062: forced to weigh and prioritize potentially competing ethical values in the face of severe time and resource constraints
p.000062: . This document seeks to assist policy-makers, health care providers, researchers, and others prepare for outbreak
p.000062: situations by anticipating and preparing for the critical ethical issues likely to arise. In addition to
p.000062: setting forth ethical principles applicable to infectious disease outbreaks generally, it shows how these principles
p.000062: can be adapted to different epidemiological and social circumstances.
p.000062:
p.000062:
p.000062:
p.000062:
p.000062:
p.000062:
p.000062:
p.000062:
p.000062:
p.000062:
p.000062:
p.000062:
p.000062:
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p.000062:
p.000062:
p.000062:
p.000062:
p.000062:
...
Social / Property Ownership
Searching for indicator home:
(return to top)
p.000017:
p.000017: • Greater need for resources — Accommodating the needs of individuals whose situation makes them particularly
p.000017: vulnerable sometimes requires the use of additional resources.
p.000017: In some cases, additional resources are relatively minimal, such as when an interpreter is hired to make
p.000017: a community engagement forum accessible to members of a linguistic minority group. In other cases, they may be more
p.000017: substantial, such as when mobile health teams are assembled to dispatch vaccines and treatments to hard-to-reach rural
p.000017: areas. It is legitimate to take costs into consideration in determining whether a particular accommodation is
p.000017: warranted; indeed, the goal of maximizing utility demands that such assessments be made.
p.000017: However, despite the importance of conserving limited resources, the ethical principle of equity may sometimes justify
p.000017: providing greater resources to persons who have greater needs.
p.000017:
p.000017: • Heightened risk of violence — Infectious disease outbreaks can
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: exacerbate social unrest, increase criminality, and induce violent behaviour, especially against vulnerable groups such
p.000017: as minority populations
p.000017: or migrants. In addition, public health measures such as home isolation, quarantine, or closure of schools and work
p.000017: facilities can induce violence, particularly against women and children. Officials involved in outbreak planning and
p.000017: response efforts should be prepared for the possibility that
p.000017: specific populations may be targeted as being the cause of the outbreak or provoking transmission; strategies should be
p.000017: proactively designed to
p.000017: protect members of such groups from a heightened risk of violence.
p.000017:
p.000017:
p.000019: 19
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:
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 doctor inspects patients in an MSF supported hospital in Aweil,
p.000019: Northern Bar El Ghazal in South Sudan, 2011
p.000019: Source: Siegfried Modola/IRIN
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019: 4. Allocating scarce resources
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000020: 20
p.000020: Questions addressed:
p.000020:
p.000020: • What type of resource allocation decisions might need to be made during infectious disease outbreaks?
p.000020: • How do the principles of utility and equity apply to decisions about allocating scarce resources during
p.000020: infectious disease outbreaks?
...
p.000025: assembly.
p.000025:
p.000025: In light of these considerations, no restrictions on freedom of movement should be implemented without careful
p.000025: attention to the following considerations:
p.000025:
p.000025: • Justifiable basis for imposing restrictions — Decisions to impose restrictions on freedom of movement should be
p.000025: grounded on the best available evidence
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: about the outbreak pathogen, as determined in consultation with national and international public health officials. No
p.000025: such interventions should be implemented unless there is a reasonable basis to expect they will significantly reduce
p.000025: disease transmission. The rationale for relying
p.000025: 26 on these measures should be made
p.000025: explicit, and the appropriateness of any restrictions should be continuously re-evaluated in light of emerging
p.000025: scientific information about the outbreak. If the original rationale for
p.000025: imposing a restriction no longer applies, the restriction should be lifted without delay.
p.000025:
p.000025: • Least restrictive means — Any restrictions on freedom of movement should be designed and implemented in a manner
p.000025: that imposes the fewest constraints reasonably possible. Greater restrictions should be imposed only when there are
p.000025: strong grounds to believe that less restrictive measures are unlikely to achieve important
p.000025: public health goals. For example, requests for voluntary cooperation are generally preferable to public health mandates
p.000025: enforced by law or military authorities. Similarly, home-based quarantine should be considered before confining
p.000025: individuals in
p.000025: institutions. While isolation in a properly equipped health-care facility is usually recommended for individuals who
p.000025: are already symptomatic, especially for diseases with a high potential for contagiousness, home-based isolation may
p.000025: sometimes be appropriate, provided that adequate medical and
p.000025: logistical support can be organized and family attendants are willing and able to act under the oversight of trained
p.000025: public health staff. This is particularly true if the caseload overwhelms facility capacity.
p.000025:
p.000025: • Costs — In some cases, a less restrictive alternative may involve greater costs. This does not, in itself,
p.000025: justify more restrictive approaches. However, costs and other practical constraints (e.g. logistics, distance,
p.000025: available workforce) may legitimately be taken into account to determine whether a less restrictive alternative is
p.000025: feasible under the circumstances, particularly in settings with severe resource constraints.
p.000025:
p.000025: • Ensuring humane conditions — Any restrictions on freedom of movement, particularly those that are not voluntary,
p.000025: should be backed up with sufficient resources to ensure that those subject to the restrictions do not experience undue
p.000025: burdens. For example, individuals whose mobility is restricted (whether through confinement at home or
p.000025: in institutional settings) should be ensured access to food, drinking water, sanitary facilities, shelter, clothing,
p.000025: and medical care. It is also important to ensure that individuals have adequate physical space, opportunities to engage
p.000025: in activities, and the means
p.000025: to communicate with their loved ones and the outside world. Fulfilling these needs is essential to respect individual
p.000025: dignity and address the significant psychosocial burden of confinement on individuals and their loved ones. Mechanisms
p.000025: should be put in place to minimize the risk of violence (including sexual assault) and local disease
p.000025: transmission, especially when individuals are confined in institutional settings
p.000025: or when communities are under mass quarantine. At a minimum, persons who
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: are quarantined because they have been exposed to the pathogen responsible for the outbreak should not be put at
p.000025: heightened risk of infection because of the manner in which they are confined. (Decisions on the circumstances and
p.000025: conditions of confinement should consider the heightened needs of vulnerable populations, as discussed
p.000025: in Guideline 3.)
p.000025:
p.000025: • Addressing financial and social consequences — Even short-term restrictions on freedom of movement can have
p.000025: significant — and possibly devastating —financial and social consequences for individuals, their families, and their
...
p.000025: media.
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: 7. Obligations related to medical interventions for the diagnosis, treatment, and prevention of infectious disease
p.000028: 28
p.000028:
p.000028:
p.000028: Questions addressed:
p.000028:
p.000028: • What quality and safety standards should govern the administration of medical interventions offered during
p.000028: infectious disease outbreaks?
p.000028: • What rights do patients (or their authorized proxy decision-makers) have to receive information about the risks
p.000028: and benefits of, and alternatives to, medical interventions during infectious disease outbreaks?
p.000028: • Under what circumstances, if any, might it be appropriate to override an individual’s refusal of diagnostic,
p.000028: therapeutic, or preventive measures during an infectious disease outbreak?
p.000028: • What procedural safeguards should be provided before overriding an individual’s refusal of diagnostic,
p.000028: therapeutic, or preventive measures during an infectious disease outbreak?
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028: Any medical intervention for the diagnosis, treatment, or prevention of infectious disease should be provided in accord
p.000028: with professional medical standards, under conditions designed to ensure the highest attainable level of patient
p.000028: safety. Countries, with the support of international experts, should establish the minimum standards
p.000028: to be applied in the care and treatment of patients affected by an outbreak.
p.000028: These standards should apply not only to health-care institutions but also to home-based care, community activities
p.000028: (including health education sessions), and environmental decontamination efforts or the management of dead bodies.
p.000028:
p.000028: Individuals offered medical interventions for the diagnosis, treatment, or prevention of an infectious pathogen should
p.000028: be informed about the risks, benefits, and alternatives, just as they would be for other significant medical
p.000028: interventions. The presumption should be that the final decision about which medical interventions to accept, if any,
p.000028: belongs to the patient. For patients who lack the legal capacity to make health- care decisions for themselves,
p.000028: decisions should generally be made by appropriately authorized proxy decision-makers, with efforts made to solicit the
p.000028: patient’s assent whenever possible.
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028: Health-care providers should recognize that, in some situations, the refusal of diagnostic, therapeutic, or preventive
p.000028: measures might be a choice that is rational from the perspective of a mentally competent individual. If an individual
p.000028: is unwilling to accept an intervention, providers should engage the patient in an open and respectful dialogue, paying
p.000028: careful attention to the patient’s concerns, perceptions, and situational needs.
p.000028:
p.000028: In exceptional situations, there may be legitimate reasons to override an individual’s refusal of a diagnostic,
p.000028: therapeutic, or preventive measure that has proven to
p.000028: be safe and effective and is part of the accepted medical standard of care. Decisions on whether to override a refusal
...
p.000043: and other treatments as they become available.
p.000043:
p.000043: • Appropriate remuneration — Frontline workers should be given fair remuneration for their work. Governments should
p.000043: ensure that public sector workers are paid in
p.000043: a timely manner, and make efforts to ensure that actors in the private and nongovernmental sectors fulfil their own
p.000043: obligations to pay their employees and contractors. Fair remuneration for frontline workers includes the provision of
p.000043: financial support during periods in which workers are unable to carry out their normal responsibilities because of an
p.000043: infection acquired on the job.
p.000043:
p.000043: • Support for reintegrating into the community — Frontline workers may experience stigma and discrimination,
p.000043: particularly those involved in unpopular measures such as infection control or burials not conducted according to
p.000043: the traditional customs. Governments should make efforts to reduce the risk of stigmatization and discrimination and
p.000043: help such workers to reintegrate into the community, including by providing job placement assistance and relocation to
p.000043: other communities if needed.
p.000043:
p.000043: • Assistance to family members — Assistance should be provided to families of frontline workers who need to remain
p.000043: away from home in order
p.000043: to carry out their responsibilities or to recuperate from illness. Death benefits should be provided to family members
p.000043: of frontline workers who die in the line of duty, including those who were volunteers or “casual workers.”
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: As noted above, some workers may have a duty to work during an infectious
p.000043: disease outbreak. However, even for these individuals, the duty to assume risk is not unlimited. In determining the
p.000043: scope of workers’ duties to assume personal risks, the following factors should be taken into account:
p.000043:
p.000043: • Reciprocal obligations — Any professional or employment-based obligation to assume personal risk is contingent on
p.000043: society’s fulfilment of its reciprocal obligations to workers, as outlined above. If the reciprocal obligations are not
p.000043: met, frontline
p.000043: workers cannot legitimately be expected to assume a significant risk of harm to themselves and their families.
p.000043:
p.000043: • Risks and benefits — Frontline workers should not be expected to expose themselves to risks that are
p.000043: disproportionate to the public health
p.000043: benefits their efforts are likely to achieve.
p.000043:
p.000043: • Equity and transparency — Entities responsible for assigning frontline workers to specific tasks should ensure
...
Searching for indicator property:
(return to top)
p.002014: Uniformed Services University, United States of America
p.002014: Ms Adeline Osakwe, Head, National Pharmacovigilance Centre, National Agency for Food and Drug Administration and
p.002014: Control, Nigeria
p.002014: Ms Virginie Pirard, Member, Belgian Advisory Committee on Bioethics; Ethics Advisor, Institut Pasteur, France
p.002014: Dr Micaela Serafini, Medical Director, Médecins Sans Frontières, Switzerland
p.002014: Mr Jemee Tegli, Institutional Review Board Administrator, University of Liberia–Pacific Institute for Research and
p.002014: Evaluation Institutional Review Board, Liberia
p.002014: Dr Gervais Tougas, Representative, International Federation of Pharmaceutical Manufacturers & Associations, Chief
p.002014: Medical Officer, Novartis, Switzerland
p.002014: Dr Johan van Griensven, Department of Clinical Sciences, Institute of Tropical Medicine, Belgium
p.002014: Professor John Whitehead, Emeritus Professor, Department of Mathematics and Statistics, Fylde College, Lancaster
p.002014: University, United Kingdom
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014:
p.002014: WHO Secretariat
p.002014: Dr Marie-Paule Kieny, Assistant Director-General, Health Systems and Innovation Dr Marie-Charlotte Bouesseau, Advisor,
p.002014: Department of Service Delivery and Safety Dr Vânia de la Fuente-Núñez,Technical Officer, Global Health Ethics,
p.002014: Department of Knowledge, Ethics and Research
p.002014: Dr Martin Friede, Scientist, Public Health, Innovation and Intellectual Property, Department of Essential Medicines and
p.002014: Health Products
p.002014: Ms Marisol Guraiib, Technical Officer, Global Health Ethics, Department of Knowledge,
p.002014: Ethics and Research
p.000059: 59
p.000059: Ms Corinna Klingler, Intern, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059: Dr Selena Knight, Intern, Global Health Ethics, Department of Knowledge, Ethics and Research Dr Nicola Magrini,
p.000059: Scientist, Policy, Access and Use, Department of Essential Medicines and Health Products
p.000059: Dr Cathy Roth, Adviser, Office of the Assistant Director-General, Health Systems and Innovation Dr Vasee
p.000059: Sathiyamoorthy, Technical Officer, Initiative for Vaccine Research, Department of Immunization, Vaccines and
p.000059: Biologicals
p.000059: Dr Abha Saxena, Coordinator, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059: Dr David Wood, Coordinator, Technologies, Standards and Norms, Department of Essential Medicines and Health Products
p.000059:
p.000059: Developing ethics guidelines for public health responses during epidemics, including for the conduct of related
p.000059: research, Dublin, Ireland, 25–26 May 2015
p.000059:
...
Social / Racial Minority
Searching for indicator minority:
(return to top)
p.000017: equitably regardless of their social status or perceived “worth” to society. They should also take measures to prevent
p.000017: stigmatization and social violence.
p.000017:
p.000017: • Disproportionate burdens of outbreak response measures — Even when public health measures
p.000017: are designed with the best of intentions, they can inadvertently place a disproportionate burden on particular
p.000017: populations. For example, quarantine orders that require individuals to stay
p.000017: in their homes can have devastating consequences for persons who need to leave their homes to obtain basic
p.000017: necessities such as clean water or food. Similarly, social distancing measures such as school closures can place
p.000017: disproportionate burdens on children who depend on going to school to access regular meals, as well as on working
p.000017: parents who may have no one available to provide child care.
p.000017:
p.000017: • Greater need for resources — Accommodating the needs of individuals whose situation makes them particularly
p.000017: vulnerable sometimes requires the use of additional resources.
p.000017: In some cases, additional resources are relatively minimal, such as when an interpreter is hired to make
p.000017: a community engagement forum accessible to members of a linguistic minority group. In other cases, they may be more
p.000017: substantial, such as when mobile health teams are assembled to dispatch vaccines and treatments to hard-to-reach rural
p.000017: areas. It is legitimate to take costs into consideration in determining whether a particular accommodation is
p.000017: warranted; indeed, the goal of maximizing utility demands that such assessments be made.
p.000017: However, despite the importance of conserving limited resources, the ethical principle of equity may sometimes justify
p.000017: providing greater resources to persons who have greater needs.
p.000017:
p.000017: • Heightened risk of violence — Infectious disease outbreaks can
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: exacerbate social unrest, increase criminality, and induce violent behaviour, especially against vulnerable groups such
p.000017: as minority populations
p.000017: or migrants. In addition, public health measures such as home isolation, quarantine, or closure of schools and work
p.000017: facilities can induce violence, particularly against women and children. Officials involved in outbreak planning and
p.000017: response efforts should be prepared for the possibility that
p.000017: specific populations may be targeted as being the cause of the outbreak or provoking transmission; strategies should be
p.000017: proactively designed to
p.000017: protect members of such groups from a heightened risk of violence.
p.000017:
p.000017:
p.000019: 19
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:
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 doctor inspects patients in an MSF supported hospital in Aweil,
p.000019: Northern Bar El Ghazal in South Sudan, 2011
p.000019: Source: Siegfried Modola/IRIN
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019: 4. Allocating scarce resources
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000020: 20
p.000020: Questions addressed:
p.000020:
p.000020: • What type of resource allocation decisions might need to be made during infectious disease outbreaks?
...
Social / Religion
Searching for indicator religion:
(return to top)
p.000025: professional reintegration of individuals for whom confinement is no longer necessary, including measures to reduce
p.000025: stigmatization and discrimination.
p.000025:
p.000025: • Due process protections — Mechanisms should be in place to allow individuals whose liberty has been restricted to
p.000025: challenge the appropriateness of those restrictions, the way they are enforced, and the conditions under which the
p.000025: restrictions are carried out. If it is not feasible to provide full due process protection before the restrictions are
p.000025: implemented in an emergency scenario, mechanisms for review and appeal should be made
p.000025: available without excessive delay. All persons involved in decisions to restrict individuals’ freedom of movement
p.000025: should be accountable for any abuses of authority.
p.000025:
p.000025: • Equitable application — Restrictions on freedom of movement should be
p.000025: applied in the same manner to all 27
p.000025: persons posing a comparable public health risk. Thus, individuals should not be subject to greater or lesser
p.000025: restrictions for reasons unrelated to the
p.000025: risks they may pose to others, including membership in any disfavoured or favoured social group or class (for example,
p.000025: groups defined by gender, ethnicity, or religion). In addition, policy- makers should seek to ensure that restrictions
p.000025: are not applied in a manner that imposes a disproportionate burden on vulnerable segments of society.
p.000025:
p.000025: • Communication and transparency —
p.000025: Policy-makers and public health officials should engage communities in a dialogue about any restrictions on freedom of
p.000025: movement and solicit community members’ views on how restrictions can be carried out with the least possible burden.
p.000025: They should also provide regular updates on the implementation of such measures,
p.000025: both to the public at large and to those whose movement has been restricted. Communication strategies should be
p.000025: designed to avoid the stigmatization
p.000025: of individuals whose liberty has been restricted and to protect their privacy and confidentiality, particularly in the
p.000025: media.
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: 7. Obligations related to medical interventions for the diagnosis, treatment, and prevention of infectious disease
p.000028: 28
p.000028:
p.000028:
p.000028: Questions addressed:
p.000028:
p.000028: • What quality and safety standards should govern the administration of medical interventions offered during
p.000028: infectious disease outbreaks?
p.000028: • What rights do patients (or their authorized proxy decision-makers) have to receive information about the risks
p.000028: and benefits of, and alternatives to, medical interventions during infectious disease outbreaks?
...
Searching for indicator religious:
(return to top)
p.000006: obligation to meet the basic needs of individuals and communities, particularly humanitarian needs such as nourishment,
p.000006: shelter, good health, and security.
p.000006:
p.000006: Utility — The principle of utility states that actions are right insofar as they promote the well-being of individuals
p.000006: or communities. Efforts to maximize utility require consideration of proportionality (balancing the potential benefits
p.000006: of an activity against any risks of harm) and
p.000006: efficiency (achieving the greatest benefits at the lowest possible cost).
p.000006:
p.000006: Respect for persons — The term “respect for persons” refers to treating individuals in ways that are fitting to and
p.000006: informed by a recognition of our common humanity, dignity and inherent rights. A central
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006: aspect of respect for persons is respect for autonomy, which requires letting individuals make their own choices based
p.000006: on their values and preferences. Informed consent, a process in which a competent individual authorizes a course of
p.000006: action based on sufficient relevant information, without coercion or undue inducement, is one
p.000006: way to operationalize this concept. Where individuals lack decision-making capacity, it may be necessary for others to
p.000006: be charged with protecting their interests. Respect for persons also includes paying attention to values such as
p.000006: privacy and confidentiality, as well as social, religious and cultural beliefs and important relationships, including
p.000006: family bonds. Finally, respect for persons requires transparency and truth-telling in the context of carrying out
p.000006: public health and research activities.
p.000006:
p.000006: Liberty — Liberty includes a broad range of social, religious and political freedoms, such as freedom of movement,
p.000006: freedom of peaceful assembly, and freedom of speech. Many aspects of liberty are protected as fundamental human rights.
p.000006:
p.000006: Reciprocity — Reciprocity consists of making a “fitting and proportional return” for contributions that people have
p.000006: made.6 Policies that encourage reciprocity can
p.000006: be an important means of promoting the principle of justice, as they can correct unfair disparities in the distribution
p.000006: of the benefits and burdens of epidemic response efforts.
p.000006:
p.000006: Solidarity — Solidarity is a social relation in which a group, community, nation
p.000006: or, potentially, global community stands together.7 The principle of solidarity justifies collective action in the
p.000006: face of common threats. It also supports efforts to overcome inequalities that undermine the welfare
p.000006: of minorities and groups that suffer from discrimination.
p.000006:
p.000006:
p.000006: Practical applications
p.000006:
p.000006: The application of ethical principles should be informed by evidence as far as it is
p.000006: available. For example, in determining 9
p.000006: whether a particular action contributes to utility, decision-makers should be guided by any available scientific
p.000006: evidence about the action’s expected benefits and harms.
p.000006: The more intrusive the proposed action, the greater the need for robust evidence that what is being proposed is likely
p.000006: to achieve its desired aim. When specific evidence is not available, decisions should be based
...
Social / Soldier
Searching for indicator military:
(return to top)
p.000025: including direct limitations of fundamental human rights, particularly the rights to freedom of movement and peaceful
p.000025: assembly.
p.000025:
p.000025: In light of these considerations, no restrictions on freedom of movement should be implemented without careful
p.000025: attention to the following considerations:
p.000025:
p.000025: • Justifiable basis for imposing restrictions — Decisions to impose restrictions on freedom of movement should be
p.000025: grounded on the best available evidence
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: about the outbreak pathogen, as determined in consultation with national and international public health officials. No
p.000025: such interventions should be implemented unless there is a reasonable basis to expect they will significantly reduce
p.000025: disease transmission. The rationale for relying
p.000025: 26 on these measures should be made
p.000025: explicit, and the appropriateness of any restrictions should be continuously re-evaluated in light of emerging
p.000025: scientific information about the outbreak. If the original rationale for
p.000025: imposing a restriction no longer applies, the restriction should be lifted without delay.
p.000025:
p.000025: • Least restrictive means — Any restrictions on freedom of movement should be designed and implemented in a manner
p.000025: that imposes the fewest constraints reasonably possible. Greater restrictions should be imposed only when there are
p.000025: strong grounds to believe that less restrictive measures are unlikely to achieve important
p.000025: public health goals. For example, requests for voluntary cooperation are generally preferable to public health mandates
p.000025: enforced by law or military authorities. Similarly, home-based quarantine should be considered before confining
p.000025: individuals in
p.000025: institutions. While isolation in a properly equipped health-care facility is usually recommended for individuals who
p.000025: are already symptomatic, especially for diseases with a high potential for contagiousness, home-based isolation may
p.000025: sometimes be appropriate, provided that adequate medical and
p.000025: logistical support can be organized and family attendants are willing and able to act under the oversight of trained
p.000025: public health staff. This is particularly true if the caseload overwhelms facility capacity.
p.000025:
p.000025: • Costs — In some cases, a less restrictive alternative may involve greater costs. This does not, in itself,
p.000025: justify more restrictive approaches. However, costs and other practical constraints (e.g. logistics, distance,
p.000025: available workforce) may legitimately be taken into account to determine whether a less restrictive alternative is
p.000025: feasible under the circumstances, particularly in settings with severe resource constraints.
p.000025:
p.000025: • Ensuring humane conditions — Any restrictions on freedom of movement, particularly those that are not voluntary,
p.000025: should be backed up with sufficient resources to ensure that those subject to the restrictions do not experience undue
p.000025: burdens. For example, individuals whose mobility is restricted (whether through confinement at home or
...
p.000059: Switzerland
p.000059: Dr Philippe Calain, Senior Researcher, Unit of Research on Humanitarian Stakes and Practices, Médecins Sans Frontières,
p.000059: Switzerland
p.000059: Dr Edward Cox, Director, Office of Antimicrobial Products, Food and Drug Administration, United States of America
p.000059: Professor Heather Draper, Professor of Biomedical Ethics, University of Birmingham, United Kingdom
p.000059: Dr Sarah Edwards, Senior Lecturer in Research Ethics and Governance, University College London, United Kingdom
p.000059: Professor Jónína Einarsdóttir, Medical Anthropology, School of Social Sciences, University of Iceland, Iceland
p.000059: Professor Jeremy Farrar, Director, Wellcome Trust, United Kingdom
p.000059: Dr Margaret Fitzgerald, Public Health Specialist, Irish Health Service Executive, Ireland Dr Gabriel Fitzpatrick,
p.000059: Médecins Sans Frontières, Ireland
p.000059: Ms Lorraine Gallagher, Development Specialist, Irish Aid, Department of Foreign Affairs, Ireland Professor Jennifer
p.000059: Gibson, Sun Life Financial Chair in Bioethics; Director, Joint Centre for Bioethics; Associate Professor, Institute of
p.000059: Health Policy, Management and Evaluation, University of Toronto, Canada
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059: Professor Frederick G Hayden, Professor of Medicine and Pathology, University of Virginia School of Medicine, Unites
p.000059: States of America
p.000059: Dr Rita Helfand, Centers for Disease Control and Prevention, United States of America Dr Simon Jenkins, Research
p.000059: Fellow, University of Birmingham Project on the ethical challenges experienced by British military healthcare
p.000059: professionals in the Ebola region, United Kingdom
p.000059: Dr Pretesh Kiran, Assistant Professor, Community Health; Convener, Disaster Management Unit, St Johns National Academy
p.000059: of Health Sciences, India
p.000059: 60 Dr Markus Kirchner, Department for Infectious Disease Epidemiology, Robert Koch Institute,
p.000059: Germany
p.000059: Dr Katherine Littler, Senior Policy Adviser, Wellcome Trust, United Kingdom
p.000059: Professor Samuel McConkey, Head, International Health and Tropical Medicine, Royal College of Surgeons, Ireland
p.000059: Dr Farhat Moazam, Founding Chairperson, Center of Biomedical Ethics and Culture, Sindh Institute of Urology and
p.000059: Transplantation, Pakistan
p.000059: Dr Robert Nelson, Deputy Director and Senior Pediatric Ethicist, Office of Pediatric Therapeutics, Food and Drug
p.000059: Administration, United States of America
p.000059: Professor Alistair Nichol, Consultant Anaesthetist, School of Medicine and Medical Sciences, and EU projects,
p.000059: University College Dublin, Ireland
p.000059: Professor Lisa Schwartz, Arnold Johnson Chair in Health Care Ethics, Ethics in Health Care, McMaster University, Canada
p.000059: Professor Michael Selgelid, Director, Centre for Human Bioethics, Monash University, Australia Dr Kadri Simm, Associate
p.000059: Professor of Practical Philosophy, University of Tartu, Estonia
p.000059: Dr Aissatou Touré, Head, Immunology Department, Institut Pasteur de Dakar and Member, National Ethics Committee,
p.000059: Senegal
...
Social / Threat of Stigma
Searching for indicator stigma:
(return to top)
p.000017: to necessary resources such as clean water or bednets to reduce the risk of contracting a mosquito-borne disease.
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: • Need for effective alternative communication strategies — Some types of vulnerability can impede
p.000017: an individual’s ability to transmit or receive information. Communication barriers can stem from a wide range of
p.000017: factors including, but not limited to, illiteracy, unfamiliarity with the
p.000017: 18 local or official language(s), vision or
p.000017: hearing impairments, social isolation, or lack of access to Internet and other communication services. These barriers
p.000017: make it difficult for individuals to receive necessary public health messages
p.000017: or to participate fully in community engagement activities. To overcome these barriers, messages should be delivered in
p.000017: multiple formats (e.g. radio, text messages, billboards, cartoons) as well as direct oral communication with key
p.000017: stakeholders. Health authorities should not assume that the public will search for information; instead, they should
p.000017: proactively reach out to the concerned population wherever they are.
p.000017:
p.000017: • Impact of stigmatization and discrimination — Members of socially disadvantaged groups often face considerable
p.000017: stigma and discrimination, which can be exacerbated in public health emergencies characterized by fear and distrust.
p.000017: Those responsible for infectious disease outbreak response should ensure that all individuals are treated fairly and
p.000017: equitably regardless of their social status or perceived “worth” to society. They should also take measures to prevent
p.000017: stigmatization and social violence.
p.000017:
p.000017: • Disproportionate burdens of outbreak response measures — Even when public health measures
p.000017: are designed with the best of intentions, they can inadvertently place a disproportionate burden on particular
p.000017: populations. For example, quarantine orders that require individuals to stay
p.000017: in their homes can have devastating consequences for persons who need to leave their homes to obtain basic
p.000017: necessities such as clean water or food. Similarly, social distancing measures such as school closures can place
p.000017: disproportionate burdens on children who depend on going to school to access regular meals, as well as on working
p.000017: parents who may have no one available to provide child care.
p.000017:
p.000017: • Greater need for resources — Accommodating the needs of individuals whose situation makes them particularly
p.000017: vulnerable sometimes requires the use of additional resources.
...
p.000043: in place to detect any infection as quickly as possible, in order to initiate immediate care and minimize the risk of
p.000043: transmission to colleagues, patients, families, and community members.
p.000043:
p.000043: • Priority access to health care — Frontline workers who become sick, as well as any immediate family members who
p.000043: become ill through contact with the worker, should be ensured access to the highest level of care reasonably available.
p.000043: In addition, countries should consider giving frontline workers and their families priority access to vaccines
p.000043: and other treatments as they become available.
p.000043:
p.000043: • Appropriate remuneration — Frontline workers should be given fair remuneration for their work. Governments should
p.000043: ensure that public sector workers are paid in
p.000043: a timely manner, and make efforts to ensure that actors in the private and nongovernmental sectors fulfil their own
p.000043: obligations to pay their employees and contractors. Fair remuneration for frontline workers includes the provision of
p.000043: financial support during periods in which workers are unable to carry out their normal responsibilities because of an
p.000043: infection acquired on the job.
p.000043:
p.000043: • Support for reintegrating into the community — Frontline workers may experience stigma and discrimination,
p.000043: particularly those involved in unpopular measures such as infection control or burials not conducted according to
p.000043: the traditional customs. Governments should make efforts to reduce the risk of stigmatization and discrimination and
p.000043: help such workers to reintegrate into the community, including by providing job placement assistance and relocation to
p.000043: other communities if needed.
p.000043:
p.000043: • Assistance to family members — Assistance should be provided to families of frontline workers who need to remain
p.000043: away from home in order
p.000043: to carry out their responsibilities or to recuperate from illness. Death benefits should be provided to family members
p.000043: of frontline workers who die in the line of duty, including those who were volunteers or “casual workers.”
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: As noted above, some workers may have a duty to work during an infectious
p.000043: disease outbreak. However, even for these individuals, the duty to assume risk is not unlimited. In determining the
p.000043: scope of workers’ duties to assume personal risks, the following factors should be taken into account:
p.000043:
...
Searching for indicator threat:
(return to top)
p.000006: international human rights agreements. The Siracusa Principles on the Limitation and Derogation Provisions in the
p.000006: International Covenant on Civil and Political Rights
p.000006: (the “Siracusa Principles”)8 are a widely accepted framework for evaluating
p.000006: the appropriateness of limiting certain fundamental human rights in emergency situations. The Siracusa Principles
p.000006: provide that any restrictions on human rights must be carried out in accordance with the law and in pursuit of a
p.000006: legitimate objective of general interest. In addition, such restrictions must be strictly necessary and there must
p.000006: be no other, less intrusive means available to reach the same objective. Finally, any restrictions must be based on
p.000006: scientific evidence and not imposed in an arbitrary, unreasonable, or discriminatory manner.
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006: For both pragmatic and ethical reasons, maintaining the population’s trust in epidemic response efforts is of
p.000006: fundamental importance. This is possible only if
p.000006: policy-makers and response workers act in a trustworthy manner by applying
p.000006: procedural principles fairly and consistently, being open to review based on new
p.000006: 10 relevant information, and acting with the
p.000006: genuine input of affected communities.
p.000006: In addition, a synchronized approach is indispensable to the success of any
p.000006: response effort. All members of the global community need to act in solidarity, since all countries share a common
p.000006: vulnerability to the threat of infectious disease.
p.000006:
p.000006:
p.000006: How the Guidance was developed
p.000006: Many individuals have helped shape this guidance document, directly or indirectly, starting with the Ethics Panel that
p.000006: was convened by the Director-General on
p.000006: 11 August 2014, and the ad-hoc ethics working groups that met in Geneva, Switzerland between August and October 2014 to
p.000006: provide guidance on the use of untested interventions during the Ebola outbreak in West Africa. Subsequently,
p.000006: in May 2015, a group of experts and stakeholders met in Dublin, Ireland to review existing ethical statements on
p.000006: infectious disease outbreaks and
p.000006: develop a methodology to create a more comprehensive document. To assist this process, an analysis and synthesis of all
p.000006: existing guidance documents relevant
p.000006: to ethical considerations in infectious disease outbreaks was prepared (Annex 1). Reflecting on lessons learnt from
p.000006: previous outbreaks, particularly the recent experiences with Ebola, participants emphasized the need for
p.000006: guidance that could be tailored to different epidemiological, social, and economic contexts. They also discussed the
p.000006: importance of focusing on broader questions of global health governance, community engagement, knowledge generation,
p.000006: and priority setting. Finally,
p.000006: participants emphasized the urgent need to develop concrete operational tools to help individuals involved in epidemic
p.000006: response efforts to incorporate ethical guidance into practical decision-making. The group met again in November 2015
p.000006: in Prato, Italy
p.000006: to review an initial draft of the guidance and to hear from additional experts and stakeholders, including survivors of
...
Searching for indicator stigmatization:
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p.000015: nongovernmental organizations, and
p.000015: academic institutions should make efforts to support media training in relevant scientific concepts and techniques for
p.000015: communicating risk information without raising unnecessary alarm. Media training is important for public health sector
p.000015: employees who may interact with media covering public health issues.
p.000015: In turn, the media has a responsibility to provide accurate, factual, and balanced reporting. This is an important
p.000015: component of media ethics.
p.000015:
p.000015:
p.000015: Cholera outbreak in Sierra Leone
p.000015: Source: Fid Thompson
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015: 3. Situations of particular vulnerability
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000017: 17
p.000017: Questions addressed:
p.000017:
p.000017: • Why are some individuals and groups considered particularly vulnerable during infectious disease outbreaks?
p.000017: • How can vulnerability affect a person’s ability to access services during infectious disease outbreaks?
p.000017: • How can vulnerability affect a person’s willingness and ability to share and receive information during an
p.000017: infectious disease outbreak?
p.000017: • Why are stigmatization and discrimination particular risks during infectious disease outbreaks?
p.000017: • In what ways might vulnerable persons suffer disproportionate burdens from infectious disease response efforts,
p.000017: or have a greater need for resources?
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: Some individuals and groups face heightened susceptibility to harm or injustice during infectious disease outbreaks.
p.000017: Policy-makers and epidemic responders should develop plans to address the needs of such individuals and groups in
p.000017: advance of an outbreak and,
p.000017: if an outbreak occurs, make reasonable efforts to ensure that these needs are actually met. Doing this requires ongoing
p.000017: attention to community engagement and the development of active social networks between community representatives and
p.000017: government actors.
p.000017:
p.000017: Efforts to address the ways in which individuals and groups may be vulnerable should take into account the following:
p.000017: • Difficulty accessing services and resources — Many of the
p.000017: characteristics that contribute to social vulnerability can make it difficult
p.000017: for individuals to access necessary services. For example, persons with physical disabilities may have mobility
p.000017: impairments that make travelling even short distances difficult or impossible.
p.000017: Other socially vulnerable persons may lack access to safe and reliable transportation or have caregiving
p.000017: responsibilities that make it difficult for them to leave their homes. In addition, vulnerable persons may lack access
p.000017: to necessary resources such as clean water or bednets to reduce the risk of contracting a mosquito-borne disease.
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: • Need for effective alternative communication strategies — Some types of vulnerability can impede
p.000017: an individual’s ability to transmit or receive information. Communication barriers can stem from a wide range of
p.000017: factors including, but not limited to, illiteracy, unfamiliarity with the
p.000017: 18 local or official language(s), vision or
p.000017: hearing impairments, social isolation, or lack of access to Internet and other communication services. These barriers
p.000017: make it difficult for individuals to receive necessary public health messages
p.000017: or to participate fully in community engagement activities. To overcome these barriers, messages should be delivered in
p.000017: multiple formats (e.g. radio, text messages, billboards, cartoons) as well as direct oral communication with key
p.000017: stakeholders. Health authorities should not assume that the public will search for information; instead, they should
p.000017: proactively reach out to the concerned population wherever they are.
p.000017:
p.000017: • Impact of stigmatization and discrimination — Members of socially disadvantaged groups often face considerable
p.000017: stigma and discrimination, which can be exacerbated in public health emergencies characterized by fear and distrust.
p.000017: Those responsible for infectious disease outbreak response should ensure that all individuals are treated fairly and
p.000017: equitably regardless of their social status or perceived “worth” to society. They should also take measures to prevent
p.000017: stigmatization and social violence.
p.000017:
p.000017: • Disproportionate burdens of outbreak response measures — Even when public health measures
p.000017: are designed with the best of intentions, they can inadvertently place a disproportionate burden on particular
p.000017: populations. For example, quarantine orders that require individuals to stay
p.000017: in their homes can have devastating consequences for persons who need to leave their homes to obtain basic
p.000017: necessities such as clean water or food. Similarly, social distancing measures such as school closures can place
p.000017: disproportionate burdens on children who depend on going to school to access regular meals, as well as on working
p.000017: parents who may have no one available to provide child care.
p.000017:
p.000017: • Greater need for resources — Accommodating the needs of individuals whose situation makes them particularly
p.000017: vulnerable sometimes requires the use of additional resources.
p.000017: In some cases, additional resources are relatively minimal, such as when an interpreter is hired to make
p.000017: a community engagement forum accessible to members of a linguistic minority group. In other cases, they may be more
p.000017: substantial, such as when mobile health teams are assembled to dispatch vaccines and treatments to hard-to-reach rural
p.000017: areas. It is legitimate to take costs into consideration in determining whether a particular accommodation is
...
p.000020: few resources. However, such
p.000020: an approach may be in tension with the principle of equity if it means that fewer resources will be directed to
p.000020: isolated communities in remote rural areas.
p.000020: There is no single correct way to resolve potential tensions between utility
p.000020: and equity; what is important is that decisions are made through an inclusive and transparent process that takes into
p.000020: account local circumstances.
p.000020: • Defining utility on the basis of health-related considerations —
p.000020: In order to apply the ethical principle of utility, it is first necessary to identify the type of outcomes that will be
p.000020: counted as improvements to welfare. In general, the focus should be on the health-related benefits of allocation
p.000020: mechanisms, whether defined in terms 21
p.000020: of the total number of lives saved, the total number of life years saved, or the total number of quality-adjusted life
p.000020: years saved. For this reason,
p.000020: while it might be ethical to prioritize persons who are essential to manage an outbreak, it is not appropriate to
p.000020: prioritize persons based on social value considerations unrelated to carrying out critical services necessary for
p.000020: society.
p.000020:
p.000020: • Paying attention to the needs of vulnerable populations — In applying the ethical principle of equity, special
p.000020: attention should be given to individuals and groups that are the most vulnerable to discrimination, stigmatization, or
p.000020: isolation, as discussed in Guideline 3.
p.000020: Particular consideration must be given to individuals who are confined in institutional settings, where they are highly
p.000020: dependent on others and
p.000020: potentially exposed to much higher risks of infection than persons living in the community.
p.000020:
p.000020: • Fulfilling reciprocity-based obligations to those who contribute to infectious disease outbreak response efforts
p.000020: — The ethical principle of reciprocity implies that society should support persons who face a disproportionate burden
p.000020: or risk in protecting the public good. This principle justifies giving priority access to scarce resources to persons
p.000020: who
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020: assume risks to their own health or life to contribute to outbreak response efforts.
p.000020:
p.000020: • Providing supportive and palliative care to persons unable to access life- saving resources — Even when it is not
p.000020: possible to provide life-saving medical
p.000020: 22 resources to all who could benefit from
p.000020: them, efforts should be made to ensure that no patients are abandoned. One way to do this is to ensure that adequate
p.000020: resources are directed to providing supportive and palliative care.
p.000020:
p.000020: The application of allocation principles should take into account the following considerations:
p.000020:
p.000020: • Consistent application — Allocation principles should be applied in
...
p.000023: mandatory basis, without
p.000023: the possibility of individual refusal. Collecting surveillance information on a mandatory basis is ethically
p.000023: appropriate on the grounds of public
p.000023: interest if an accountable governmental authority has determined that universal participation is necessary to achieve
p.000023: compelling public health objectives.
p.000023: However, it should not be assumed that surveillance activities must always be carried out on a mandatory basis.
p.000023: Entities responsible for designing and approving surveillance programmes should consider the appropriateness of
p.000023: allowing individuals to opt out of particular surveillance activities, taking into account the nature and degree of
p.000023: individual risks involved and the extent to which allowing opt-outs
p.000023: would undermine the activity’s public health goals.
p.000023:
p.000023: • Disclosing information to individuals and communities — Regardless of whether individuals are given the choice to
p.000023: opt out of surveillance activities, the process of surveillance should be conducted on a transparent basis. At a
p.000023: minimum, individuals and communities should be aware of the type of information
p.000023: that will be gathered about them, the purposes for which this information will be used, and any circumstances under
p.000023: which the information collected may be shared with third parties. In addition, information about the outcome of the
p.000023: surveillance activity should be made available as soon as reasonably possible.
p.000023: Careful attention should be given to the manner in which this information is communicated, in order to minimize
p.000023: the risk that subjects of surveillance may face stigmatization or discrimination.
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023: 6. Restrictions on freedom of movement
p.000023:
p.000023:
p.000023:
p.000025: 25
p.000025: Questions addressed:
p.000025:
p.000025: • Under what circumstances is it legitimate to restrict an individual’s freedom of movement during an infectious
p.000025: disease outbreak?
p.000025: • What living conditions should be assured for individuals whose freedom of movement has been restricted?
p.000025: • What other obligations are owed to individuals whose freedom of movement has been restricted?
p.000025: • What procedural protections must be established to ensure that restrictions on freedom of movement are carried
p.000025: out appropriately?
p.000025: • What are the obligations of policy-makers and public health officials to inform the public about restrictions on
p.000025: freedom of movement?
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: Restrictions on freedom of movement include isolation, quarantine, travel advisories or restrictions, and community-
p.000025: based measures to reduce contact between people (e.g. closing schools or prohibiting large gatherings). These measures
p.000025: can often play an important role in controlling infectious disease outbreaks, and in these circumstances, their use is
p.000025: justified by the ethical value of protecting community well- being. However, the effectiveness of these measures should
p.000025: not be assumed; in fact, under some epidemiological circumstances, they may contribute little or nothing to outbreak
p.000025: control efforts, and may even
p.000025: be counterproductive if they engender a backlash that leads to resistance to
...
p.000025: should be put in place to minimize the risk of violence (including sexual assault) and local disease
p.000025: transmission, especially when individuals are confined in institutional settings
p.000025: or when communities are under mass quarantine. At a minimum, persons who
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: are quarantined because they have been exposed to the pathogen responsible for the outbreak should not be put at
p.000025: heightened risk of infection because of the manner in which they are confined. (Decisions on the circumstances and
p.000025: conditions of confinement should consider the heightened needs of vulnerable populations, as discussed
p.000025: in Guideline 3.)
p.000025:
p.000025: • Addressing financial and social consequences — Even short-term restrictions on freedom of movement can have
p.000025: significant — and possibly devastating —financial and social consequences for individuals, their families, and their
p.000025: communities. Countries should provide assistance to households that suffer financial
p.000025: losses as a result of inability to conduct business, loss of a job, damage to crops, or other consequences of
p.000025: restrictions on freedom of movement. In some cases, this support may need to continue
p.000025: for a period following the end of confinement. In addition, efforts should be made to support the social and
p.000025: professional reintegration of individuals for whom confinement is no longer necessary, including measures to reduce
p.000025: stigmatization and discrimination.
p.000025:
p.000025: • Due process protections — Mechanisms should be in place to allow individuals whose liberty has been restricted to
p.000025: challenge the appropriateness of those restrictions, the way they are enforced, and the conditions under which the
p.000025: restrictions are carried out. If it is not feasible to provide full due process protection before the restrictions are
p.000025: implemented in an emergency scenario, mechanisms for review and appeal should be made
p.000025: available without excessive delay. All persons involved in decisions to restrict individuals’ freedom of movement
p.000025: should be accountable for any abuses of authority.
p.000025:
p.000025: • Equitable application — Restrictions on freedom of movement should be
p.000025: applied in the same manner to all 27
p.000025: persons posing a comparable public health risk. Thus, individuals should not be subject to greater or lesser
p.000025: restrictions for reasons unrelated to the
p.000025: risks they may pose to others, including membership in any disfavoured or favoured social group or class (for example,
p.000025: groups defined by gender, ethnicity, or religion). In addition, policy- makers should seek to ensure that restrictions
p.000025: are not applied in a manner that imposes a disproportionate burden on vulnerable segments of society.
p.000025:
p.000025: • Communication and transparency —
p.000025: Policy-makers and public health officials should engage communities in a dialogue about any restrictions on freedom of
p.000025: movement and solicit community members’ views on how restrictions can be carried out with the least possible burden.
p.000025: They should also provide regular updates on the implementation of such measures,
p.000025: both to the public at large and to those whose movement has been restricted. Communication strategies should be
p.000025: designed to avoid the stigmatization
p.000025: of individuals whose liberty has been restricted and to protect their privacy and confidentiality, particularly in the
p.000025: media.
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: 7. Obligations related to medical interventions for the diagnosis, treatment, and prevention of infectious disease
p.000028: 28
p.000028:
p.000028:
p.000028: Questions addressed:
p.000028:
p.000028: • What quality and safety standards should govern the administration of medical interventions offered during
p.000028: infectious disease outbreaks?
p.000028: • What rights do patients (or their authorized proxy decision-makers) have to receive information about the risks
p.000028: and benefits of, and alternatives to, medical interventions during infectious disease outbreaks?
p.000028: • Under what circumstances, if any, might it be appropriate to override an individual’s refusal of diagnostic,
p.000028: therapeutic, or preventive measures during an infectious disease outbreak?
p.000028: • What procedural safeguards should be provided before overriding an individual’s refusal of diagnostic,
p.000028: therapeutic, or preventive measures during an infectious disease outbreak?
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028: Any medical intervention for the diagnosis, treatment, or prevention of infectious disease should be provided in accord
p.000028: with professional medical standards, under conditions designed to ensure the highest attainable level of patient
p.000028: safety. Countries, with the support of international experts, should establish the minimum standards
...
p.000043: become ill through contact with the worker, should be ensured access to the highest level of care reasonably available.
p.000043: In addition, countries should consider giving frontline workers and their families priority access to vaccines
p.000043: and other treatments as they become available.
p.000043:
p.000043: • Appropriate remuneration — Frontline workers should be given fair remuneration for their work. Governments should
p.000043: ensure that public sector workers are paid in
p.000043: a timely manner, and make efforts to ensure that actors in the private and nongovernmental sectors fulfil their own
p.000043: obligations to pay their employees and contractors. Fair remuneration for frontline workers includes the provision of
p.000043: financial support during periods in which workers are unable to carry out their normal responsibilities because of an
p.000043: infection acquired on the job.
p.000043:
p.000043: • Support for reintegrating into the community — Frontline workers may experience stigma and discrimination,
p.000043: particularly those involved in unpopular measures such as infection control or burials not conducted according to
p.000043: the traditional customs. Governments should make efforts to reduce the risk of stigmatization and discrimination and
p.000043: help such workers to reintegrate into the community, including by providing job placement assistance and relocation to
p.000043: other communities if needed.
p.000043:
p.000043: • Assistance to family members — Assistance should be provided to families of frontline workers who need to remain
p.000043: away from home in order
p.000043: to carry out their responsibilities or to recuperate from illness. Death benefits should be provided to family members
p.000043: of frontline workers who die in the line of duty, including those who were volunteers or “casual workers.”
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: As noted above, some workers may have a duty to work during an infectious
p.000043: disease outbreak. However, even for these individuals, the duty to assume risk is not unlimited. In determining the
p.000043: scope of workers’ duties to assume personal risks, the following factors should be taken into account:
p.000043:
p.000043: • Reciprocal obligations — Any professional or employment-based obligation to assume personal risk is contingent on
p.000043: society’s fulfilment of its reciprocal obligations to workers, as outlined above. If the reciprocal obligations are not
p.000043: met, frontline
...
p.000043: against job-related responsibilities. 45
p.000043:
p.000043: Additional obligations of those working in the health‑care sector:
p.000043:
p.000043: In addition to the issues addressed above, persons working in the health-care sector have obligations to the community
p.000043: during an infectious disease outbreak, including the following:
p.000043:
p.000043: • Participate in public health surveillance and reporting efforts — Persons working in the health sector have an
p.000043: obligation to participate in organized measures to respond to infectious disease outbreaks, including public health
p.000043: surveillance and reporting. Health-care providers should protect the confidentiality of patient information to the
p.000043: maximum extent compatible with legitimate public health interests.
p.000043:
p.000043: • Provide accurate information to the public — During an infectious disease outbreak, public health officials have
p.000043: the primary responsibility to communicate information about the outbreak pathogen, including how
p.000043: it is transmitted, how infection can be prevented, and what treatments or preventive measures may be effective. Those
p.000043: responsible for designing communication strategies should anticipate and respond to misinformation, exaggeration, and
p.000043: mistrust, and should seek (without
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: withholding key information) to minimize the risk that information about risk factors will lead to stigmatization and
p.000043: discrimination. If persons working in the health sector are asked medical questions about the outbreak by patients or
p.000043: the general public, they should not spread
p.000043: 46 unsubstantiated rumours or suspicion
p.000043: and ensure that information they provide comes from reliable sources.
p.000043:
p.000043: • Avoiding exploitation — In the context of a rapidly spreading life- threatening illness with no proven
p.000043: treatment, desperate individuals may be willing to try any intervention offered, regardless of the expected risks or
p.000043: benefits. Health-care workers have a duty not to exploit individuals’ vulnerability by offering treatments or
p.000043: preventive measures for which
p.000043: there is no reasonable basis to believe that the potential benefits outweigh the uncertainties and risks. This duty
p.000043: does not preclude the appropriate use of unproven interventions on an
p.000043: experimental basis, consistent with the guidelines set forth in Guideline 9.
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:
p.000043:
p.000043:
p.000043:
p.000043: Earthquake Haiti 2010
p.000043: Source: Victor Ariscain, PAHO/WHO
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: 14. Ethical issues in deploying foreign humanitarian aid workers
p.000043:
p.000043:
p.000043:
p.000047: 47
p.000047: Questions addressed:
p.000047:
...
Social / Threat of Violence
Searching for indicator violence:
(return to top)
p.000017: factors including, but not limited to, illiteracy, unfamiliarity with the
p.000017: 18 local or official language(s), vision or
p.000017: hearing impairments, social isolation, or lack of access to Internet and other communication services. These barriers
p.000017: make it difficult for individuals to receive necessary public health messages
p.000017: or to participate fully in community engagement activities. To overcome these barriers, messages should be delivered in
p.000017: multiple formats (e.g. radio, text messages, billboards, cartoons) as well as direct oral communication with key
p.000017: stakeholders. Health authorities should not assume that the public will search for information; instead, they should
p.000017: proactively reach out to the concerned population wherever they are.
p.000017:
p.000017: • Impact of stigmatization and discrimination — Members of socially disadvantaged groups often face considerable
p.000017: stigma and discrimination, which can be exacerbated in public health emergencies characterized by fear and distrust.
p.000017: Those responsible for infectious disease outbreak response should ensure that all individuals are treated fairly and
p.000017: equitably regardless of their social status or perceived “worth” to society. They should also take measures to prevent
p.000017: stigmatization and social violence.
p.000017:
p.000017: • Disproportionate burdens of outbreak response measures — Even when public health measures
p.000017: are designed with the best of intentions, they can inadvertently place a disproportionate burden on particular
p.000017: populations. For example, quarantine orders that require individuals to stay
p.000017: in their homes can have devastating consequences for persons who need to leave their homes to obtain basic
p.000017: necessities such as clean water or food. Similarly, social distancing measures such as school closures can place
p.000017: disproportionate burdens on children who depend on going to school to access regular meals, as well as on working
p.000017: parents who may have no one available to provide child care.
p.000017:
p.000017: • Greater need for resources — Accommodating the needs of individuals whose situation makes them particularly
p.000017: vulnerable sometimes requires the use of additional resources.
p.000017: In some cases, additional resources are relatively minimal, such as when an interpreter is hired to make
p.000017: a community engagement forum accessible to members of a linguistic minority group. In other cases, they may be more
p.000017: substantial, such as when mobile health teams are assembled to dispatch vaccines and treatments to hard-to-reach rural
p.000017: areas. It is legitimate to take costs into consideration in determining whether a particular accommodation is
p.000017: warranted; indeed, the goal of maximizing utility demands that such assessments be made.
p.000017: However, despite the importance of conserving limited resources, the ethical principle of equity may sometimes justify
p.000017: providing greater resources to persons who have greater needs.
p.000017:
p.000017: • Heightened risk of violence — Infectious disease outbreaks can
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: exacerbate social unrest, increase criminality, and induce violent behaviour, especially against vulnerable groups such
p.000017: as minority populations
p.000017: or migrants. In addition, public health measures such as home isolation, quarantine, or closure of schools and work
p.000017: facilities can induce violence, particularly against women and children. Officials involved in outbreak planning and
p.000017: response efforts should be prepared for the possibility that
p.000017: specific populations may be targeted as being the cause of the outbreak or provoking transmission; strategies should be
p.000017: proactively designed to
p.000017: protect members of such groups from a heightened risk of violence.
p.000017:
p.000017:
p.000019: 19
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:
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 doctor inspects patients in an MSF supported hospital in Aweil,
p.000019: Northern Bar El Ghazal in South Sudan, 2011
p.000019: Source: Siegfried Modola/IRIN
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019: 4. Allocating scarce resources
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000020: 20
p.000020: Questions addressed:
p.000020:
p.000020: • What type of resource allocation decisions might need to be made during infectious disease outbreaks?
p.000020: • How do the principles of utility and equity apply to decisions about allocating scarce resources during
p.000020: infectious disease outbreaks?
p.000020: • How does the principle of reciprocity apply to decisions about allocating scarce resources during infectious
p.000020: disease outbreaks?
p.000020: • What procedural considerations apply to decisions about resource allocation during infectious disease outbreaks?
p.000020: • What obligations do health-care providers have towards persons who are not able to access life-saving resources
p.000020: during infectious disease outbreaks?
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020: Infectious disease outbreaks can quickly overwhelm the capacities of governments and health-care systems, requiring
p.000020: them to make difficult decisions about the allocation of limited resources. Some of these decisions may arise in the
...
p.000025: public health staff. This is particularly true if the caseload overwhelms facility capacity.
p.000025:
p.000025: • Costs — In some cases, a less restrictive alternative may involve greater costs. This does not, in itself,
p.000025: justify more restrictive approaches. However, costs and other practical constraints (e.g. logistics, distance,
p.000025: available workforce) may legitimately be taken into account to determine whether a less restrictive alternative is
p.000025: feasible under the circumstances, particularly in settings with severe resource constraints.
p.000025:
p.000025: • Ensuring humane conditions — Any restrictions on freedom of movement, particularly those that are not voluntary,
p.000025: should be backed up with sufficient resources to ensure that those subject to the restrictions do not experience undue
p.000025: burdens. For example, individuals whose mobility is restricted (whether through confinement at home or
p.000025: in institutional settings) should be ensured access to food, drinking water, sanitary facilities, shelter, clothing,
p.000025: and medical care. It is also important to ensure that individuals have adequate physical space, opportunities to engage
p.000025: in activities, and the means
p.000025: to communicate with their loved ones and the outside world. Fulfilling these needs is essential to respect individual
p.000025: dignity and address the significant psychosocial burden of confinement on individuals and their loved ones. Mechanisms
p.000025: should be put in place to minimize the risk of violence (including sexual assault) and local disease
p.000025: transmission, especially when individuals are confined in institutional settings
p.000025: or when communities are under mass quarantine. At a minimum, persons who
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: are quarantined because they have been exposed to the pathogen responsible for the outbreak should not be put at
p.000025: heightened risk of infection because of the manner in which they are confined. (Decisions on the circumstances and
p.000025: conditions of confinement should consider the heightened needs of vulnerable populations, as discussed
p.000025: in Guideline 3.)
p.000025:
p.000025: • Addressing financial and social consequences — Even short-term restrictions on freedom of movement can have
p.000025: significant — and possibly devastating —financial and social consequences for individuals, their families, and their
p.000025: communities. Countries should provide assistance to households that suffer financial
p.000025: losses as a result of inability to conduct business, loss of a job, damage to crops, or other consequences of
p.000025: restrictions on freedom of movement. In some cases, this support may need to continue
p.000025: for a period following the end of confinement. In addition, efforts should be made to support the social and
p.000025: professional reintegration of individuals for whom confinement is no longer necessary, including measures to reduce
p.000025: stigmatization and discrimination.
p.000025:
...
p.000041: and have access to safe methods to minimize them, along with reproductive counselling services.
p.000041:
p.000041: • Sex- and gender-inclusive research
p.000041: 42 strategies — Researchers should make efforts to ensure that studies do not disproportionately
p.000041: favour a particular sex or gender, and that women who are or might become pregnant are not inappropriately excluded
p.000041: from research participation. During an outbreak, research on experimental treatments and preventive measures should
p.000041: seek to identify any sex- or gender-related differences in outcomes.
p.000041:
p.000041: • Attention to social and cultural practices — Gender-related roles and practices can affect all aspects of
p.000041: infectious disease outbreaks, including
p.000041: individuals’ risk of becoming infected, the consequences of infection, their use of health services and other
p.000041: health-seeking behaviours, and their vulnerability to interpersonal violence.
p.000041: Policy-makers and outbreak responders should identify and respond to these factors, drawing when possible
p.000041: on relevant anthropological and sociological research.
p.000041:
p.000041: • Sex- and gender-sensitive communication strategies —
p.000041: Entities responsible for developing and implementing communication strategies should be sensitive to sex- and gender-
p.000041: based differences in how individuals have access to and respond to health- related information. Separate messages and
p.000041: communication strategies may be needed to provide relevant information to particular subgroups, such as pregnant women
p.000041: or nursing mothers.
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: Influenza in India
p.000041: Source: Tom Pietrasik, WHO
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: 13. Frontline response workers’ rights and obligations
p.000041:
p.000041:
p.000041:
p.000043: 43
p.000043: Questions addressed:
p.000043:
p.000043: • What obligations exist to protect the health of frontline workers who participate in infectious disease outbreak
p.000043: response efforts?
...
p.000047: comprehensive information about the project’s expectations and risks so they can make informed decisions about whether
p.000047: or not they will be able to make appropriate contributions. In addition, foreign aid workers should be clearly
p.000047: informed of the conditions of their deployment, including the level of health care they can expect if they become ill,
p.000047: the circumstances under
p.000047: which they will be repatriated, available insurance, and whether benefits will
p.000047: be provided to their families in case of illness or death.
p.000047:
p.000047: • Provision of necessary training and resources — Aid workers must be provided with appropriate
p.000047: training, preparation, and equipment to ensure that they can effectively carry out their mission with the lowest risks
p.000047: practicable. Training should include preparation in psychosocial and communication skills, and in understanding and
p.000047: respecting the local culture and traditions. Managers and organizations have an obligation to provide adequate support
p.000047: and guidance to the staff, both during their activity in the field and following
p.000047: their mission. This should include training and resources for managing challenging ethical issues, such as resource
p.000047: allocation decisions, triage, and inequities.
p.000047:
p.000047: • Ensuring the security and safety of aid workers — Organizations that deploy foreign aid workers have an
p.000047: obligation to take all necessary measures to ensure the workers’ security, particularly in situations of crisis; this
p.000047: obligation includes the provision of measures to reduce risks of exposure to infectious agents, contamination and
p.000047: violence. A clear chain of authority must be in place to provide oversight and ongoing advice. Individuals who object
p.000047: to assigned duties should have an opportunity for review and appeal, according to the norms of the organizations for
p.000047: which they work.
p.000047:
p.000047: Aid workers also have their own ethical obligations to patients, affected communities, their sponsoring
p.000047: organizations, and themselves. In addition to the obligations described in other sections of this document, obligations
p.000047: of foreign aid workers include the following:
p.000047:
p.000047: • Adequate preparation — Aid workers should take part in any training that is offered. If they believe that the
p.000047: training they have been given is inadequate, they should bring their concerns to
p.000047: the attention of their organization managers. Foreign aid workers deployed during crises and where resources are scarce
p.000047: should carefully consider whether they are prepared to deal with ethical issues that may lead to moral and
p.000047: psychological distress.
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047: • Adherence to assigned roles and responsibilities — Aid workers should understand the roles and responsibilities
p.000047: they have been asked to assume and should not, except in the most extreme circumstances, undertake tasks they have not
p.000047: been authorized to perform. In addition, they should provide clear and timely information to both their sponsoring
p.000047: organizations and local officials and should understand that,
p.000047: if they go beyond the tasks they have been authorized to perform, they will be accountable not only within their
p.000047: own organizations but also under applicable local standards and laws.
p.000047:
...
Social / Trade Union Membership
Searching for indicator union:
(return to top)
p.000055: people affected by the outbreaks, their cultures and their societies.
p.000055:
p.000055: The guidance document specifically benefited from reviews of the following WHO staff: Juliet Bedford, Carla Saenz
p.000055: Bresciani, Ian Clarke, Rudi J J M Coninx, Pierre Formenty, Gaya Manori Gamhewage, Theo Grace, Paul Gully, Brooke Ronald
p.000055: Johnson JR, Annette Kuesel, Anaïs
p.000055: Legand, Ahmed Mohamed Amin Mandil, Bernadette Murgue, Tim Nguyen, Asiya Ismail Odugleh-Kolev, Martin Matthew Okechukwu
p.000055: Ota, Bruce Jay Plotkin, Annie Portela, Marie-Pierre Preziosi, Manju Rani, Nigel Campbell Rollins, Cathy Roth,
p.000055: Manisha Shridhar, Rajesh Sreedharan, David Wood, and Yousef Elbes.
p.000055:
p.000055: A special thanks to Vânia de la Fuente Núñez, who was responsible for managing the Ethics Working Group; and Michele
p.000055: Loi who coordinated the whole process.
p.000055: Former interns of the Global Health Ethics team Patrick Hummel (University of
p.000055: St Andrews, United Kingdom) and Corinna Klingler (University of Munich, Germany) deserve a special mention for
p.000055: undertaking a scoping review in relation to pregnancy
p.000055: and infectious diseases, which informed the development of guidance in this area.
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055: The guidance document would not have been possible without the generous support of the Wellcome Trust. The kind support
p.000055: of the following partners is also very gratefully acknowledged: 3U Global Health Partnership; Canadian Institutes of
p.000055: Health Research; Dublin City University; European Union Cooperation in Science and Technology; Monash University;
p.000055: University of Miami Miller School of Medicine Institute for Bioethics and Health Policy.
p.000055:
p.000006: 6
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006: Introduction
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006: This guidance grew out of concern at the World Health Organization (WHO) about ethical issues raised by the Ebola
p.000006: outbreak in West Africa in 2014–2016. The WHO Global Health Ethics Unit’s response to Ebola began in August 2014,
p.000006: immediately after it was declared a “public health emergency of international concern” pursuant to the International
p.000006: Health Regulations (2005) (IHR).1 That declaration led to the formation of an Ethics Panel, and later an Ethics
p.000006: Working Group, which was charged with developing ethics guidance on issues and concerns as they arose in
p.000006: the course of the epidemic. It became increasingly apparent that the ethical issues raised by Ebola mirrored concerns
p.000006: that had arisen in other global infectious disease outbreaks, including severe acute respiratory syndrome (SARS),
p.000006: pandemic influenza, and multidrug-resistant tuberculosis. However, while WHO has issued ethical guidance
p.000006: on some of these outbreaks,2,3,4,5 prior guidance has only focused on the specific pathogen in isolation. The purpose
p.000006: of this document is to look beyond issues specific to particular epidemic pathogens and instead focus on the
...
Social / Women
Searching for indicator women:
(return to top)
p.000017: In some cases, additional resources are relatively minimal, such as when an interpreter is hired to make
p.000017: a community engagement forum accessible to members of a linguistic minority group. In other cases, they may be more
p.000017: substantial, such as when mobile health teams are assembled to dispatch vaccines and treatments to hard-to-reach rural
p.000017: areas. It is legitimate to take costs into consideration in determining whether a particular accommodation is
p.000017: warranted; indeed, the goal of maximizing utility demands that such assessments be made.
p.000017: However, despite the importance of conserving limited resources, the ethical principle of equity may sometimes justify
p.000017: providing greater resources to persons who have greater needs.
p.000017:
p.000017: • Heightened risk of violence — Infectious disease outbreaks can
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: exacerbate social unrest, increase criminality, and induce violent behaviour, especially against vulnerable groups such
p.000017: as minority populations
p.000017: or migrants. In addition, public health measures such as home isolation, quarantine, or closure of schools and work
p.000017: facilities can induce violence, particularly against women and children. Officials involved in outbreak planning and
p.000017: response efforts should be prepared for the possibility that
p.000017: specific populations may be targeted as being the cause of the outbreak or provoking transmission; strategies should be
p.000017: proactively designed to
p.000017: protect members of such groups from a heightened risk of violence.
p.000017:
p.000017:
p.000019: 19
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:
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 doctor inspects patients in an MSF supported hospital in Aweil,
p.000019: Northern Bar El Ghazal in South Sudan, 2011
p.000019: Source: Siegfried Modola/IRIN
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000019: 4. Allocating scarce resources
p.000019:
p.000019:
p.000019:
p.000019:
p.000019:
p.000020: 20
p.000020: Questions addressed:
p.000020:
p.000020: • What type of resource allocation decisions might need to be made during infectious disease outbreaks?
p.000020: • How do the principles of utility and equity apply to decisions about allocating scarce resources during
p.000020: infectious disease outbreaks?
p.000020: • How does the principle of reciprocity apply to decisions about allocating scarce resources during infectious
p.000020: disease outbreaks?
...
p.000041: • How should appropriate reproductive health-care services be safely provided during an infectious disease
p.000041: outbreak?
p.000041: • How are sex and gender relevant to communication strategies during outbreaks?
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: Sex (biological and physiological characteristics) and gender (socially constructed roles, behaviours, activities, and
p.000041: attributes)20 can influence the spread, containment, course, and consequences of infectious disease outbreaks. Sex and
p.000041: gender differences have been associated with differences in susceptibility to infection, levels of health care
p.000041: received, and in the course and outcome of illness.21 Addressing sex and gender differences in infectious disease
p.000041: outbreak planning and response efforts requires attention to the following considerations:
p.000041:
p.000041: • Sex- and gender-inclusive surveillance programmes — Public health surveillance should systematically collect
p.000041: disaggregated information on sex, gender, and pregnancy status, both to identify differential risks and
p.000041: modes of transmission, and to monitor any differential impact of an infectious disease outbreak and the interventions
p.000041: used to control it. This information is particularly important for pregnant women and their offspring.
p.000041:
p.000041: • Ensuring the availability of high- quality reproductive health-care services — Whether or not they are currently
p.000041: pregnant, women of childbearing age should have access to the full range of high-quality
p.000041: reproductive health-care services during an infectious disease outbreak. These services should be organized and
p.000041: delivered in a manner that does not stigmatize persons who use them or expose them to a heightened risk of infection
p.000041: with the outbreak pathogen. If there is evidence that an infectious
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: disease creates special risks for pregnant women or their fetus, both men and women should be informed of these risks
p.000041: and have access to safe methods to minimize them, along with reproductive counselling services.
p.000041:
p.000041: • Sex- and gender-inclusive research
p.000041: 42 strategies — Researchers should make efforts to ensure that studies do not disproportionately
p.000041: favour a particular sex or gender, and that women who are or might become pregnant are not inappropriately excluded
p.000041: from research participation. During an outbreak, research on experimental treatments and preventive measures should
p.000041: seek to identify any sex- or gender-related differences in outcomes.
p.000041:
p.000041: • Attention to social and cultural practices — Gender-related roles and practices can affect all aspects of
p.000041: infectious disease outbreaks, including
p.000041: individuals’ risk of becoming infected, the consequences of infection, their use of health services and other
p.000041: health-seeking behaviours, and their vulnerability to interpersonal violence.
p.000041: Policy-makers and outbreak responders should identify and respond to these factors, drawing when possible
p.000041: on relevant anthropological and sociological research.
p.000041:
p.000041: • Sex- and gender-sensitive communication strategies —
p.000041: Entities responsible for developing and implementing communication strategies should be sensitive to sex- and gender-
p.000041: based differences in how individuals have access to and respond to health- related information. Separate messages and
p.000041: communication strategies may be needed to provide relevant information to particular subgroups, such as pregnant women
p.000041: or nursing mothers.
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: Influenza in India
p.000041: Source: Tom Pietrasik, WHO
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: 13. Frontline response workers’ rights and obligations
p.000041:
p.000041:
p.000041:
p.000043: 43
p.000043: Questions addressed:
p.000043:
p.000043: • What obligations exist to protect the health of frontline workers who participate in infectious disease outbreak
p.000043: response efforts?
p.000043: • What obligations exist to provide material support to frontline workers who participate in infectious disease
p.000043: outbreak response efforts?
p.000043: • To what extent do these obligations extend to the workers’ family?
p.000043: • What should be taken into account in determining whether individuals have an obligation to serve as frontline
p.000043: workers during infectious disease outbreaks?
p.000043: • What special obligations do workers in the health-care sector have during infectious disease outbreaks?
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: An effective infectious disease outbreak response depends on the contribution of
p.000043: a diverse range of frontline workers, some of whom may be working on a volunteer basis. These workers often assume
p.000043: considerable personal risk to carry out their jobs. Within the health-care sector, frontline workers range from
...
p.000050: July 2016).
p.000050:
p.000050: 15 Research ethics in international epidemic response. Geneva: World Health Organization; 2009 (WHO/HSE/GIP/ITP/10.1;
p.000050: www.who.int/ethics/gip_research_ethics_.pdf, accessed 23 July 2016).
p.000050:
p.000050: 16 Developing global norms for sharing data and results during public health emergencies. Geneva: World Health
p.000050: Organization; 2015 (www.who.int/medicines/ebola-treatment/ blueprint_phe_data-share-results/en/, accessed 23 July
p.000050: 2016).
p.000050:
p.000050: 17 Overlapping publications. International Committee of Medical Journal Editors (www.
p.000050: icmje.org/recommendations/browse/publishing-and-editorial-issues/overlapping- publications.html, accessed 23 July
p.000050: 2016).
p.000050:
p.000050: 18 Ethical issues related to study design for trials on therapeutics for Ebola Virus Disease.
p.000050: 2014. Report of the WHO Ethics Working Group meeting, 20–21 October 2014. Geneva: World Health Organization; 2014
p.000050: (WHO/HIS/KER/GHE/14.2; http://apps.who.int/iris/ bitstream/10665/137509/1/WHO_HIS_KER_GHE_14.2_eng.pdf, accessed 23
p.000050: July 2016).
p.000050:
p.000050: 19 Dye C, Bartolomeos K, Moorthy V, Kieny MP. Data sharing in public health emergencies: a call to researchers. Bull
p.000050: World Health Organ. 2016;1:94(3):158. doi: 10.2471/ BLT.16.170860
p.000050: (www.who.int/bulletin/volumes/94/3/16-170860.pdf?ua=1).
p.000050:
p.000050: 20 Gender, women and health. In: WHO [website]. Geneva: World Health Organization
p.000050: (http://apps.who.int/gender/whatisgender/en/, accessed 23 July 2016).
p.000050:
p.000050: 21 Addressing sex and gender in epidemic-prone infectious diseases. Geneva: World Health Organization; 2007
p.000050: (www.who.int/csr/resources/publications/SexGenderInfectDis.pdf).
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050: Annex 1. Ethics guidance documents that contributed to the Guidance for managing ethical issues in infectious disease
p.000050: outbreaks
p.000050:
p.000050:
p.000050: WHO guidance documents
p.000050:
p.000050: 52 Addressing ethical issues in pandemic influenza planning: Discussion papers. Geneva: World Health
p.000050: Organization; 2008 (WHO/HSE/EPR/GIP/2008.2, WHO/IER/ETH/2008.1; http://apps.
p.000050: who.int/iris/bitstream/10665/69902/1/WHO_IER_ETH_2008.1_eng.pdf?ua=1).
p.000050:
p.000050: Ethical considerations for use of unregistered interventions for Ebola viral disease. Report of an advisory panel to
p.000050: WHO. Geneva: World Health Organization; 2014 (WHO/HIS/KER/ GHE/14.1;
p.000050: http://apps.who.int/iris/bitstream/10665/130997/1/WHO_HIS_KER_GHE_14.1_ eng.pdf?ua=1).
p.000050:
p.000050: Ethical considerations in developing a public health response to pandemic influenza. Geneva: World Health Organization;
p.000050: 2007 (WHO/CDS/EPR/GIP/2007.2; http://www.who.int/ csr/resources/publications/WHO_CDS_EPR_GIP_2007_2c.pdf?ua=1).
p.000050:
p.000050: Ethical issues related to study design for trials on therapeutics for Ebola virus disease. WHO Ethics Working Group
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Social / education
Searching for indicator education:
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p.000013: obligation to ensure the long-term capacity of the systems necessary to carry out effective epidemic prevention and
p.000013: response efforts.
p.000013:
p.000013: Countries have obligations not only to persons within their own borders but also to the broader international
p.000013: community. As the United Nations Committee on
p.000013:
p.000013: Economic, Social and Cultural Rights has recognized, “given that some diseases are easily transmissible beyond the
p.000013: frontiers of a State, the international community has a collective responsibility to address this problem. The
p.000013: economically developed States Parties have a special responsibility
p.000013: and interest to assist the poorer developing States in this regard.”9
p.000013:
p.000013: These obligations reflect the practical reality that infectious disease outbreaks do not respect national borders, and
p.000013: that an outbreak in one country can put the rest of the world at risk.
p.000013:
p.000013: Countries’ obligations to consider the needs of the international community do not arise solely in times of emergency.
p.000013: Instead, they require ongoing attention to ameliorate the social determinants of poor
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013: health that contribute to infectious disease outbreaks, including poverty, limited access to education, and inadequate
p.000013: systems of water and sanitation.
p.000013:
p.000013: The following are key elements of the obligations of governments and the international community:
p.000014: 14
p.000014: • Ensuring the sufficiency of national public health laws — As discussed later in this document, certain public
p.000014: health interventions that might be necessary during an infectious disease outbreak (e.g. restrictions on freedom of
p.000014: movement) depend on having a clear legal basis for government action, as well as a system in place to provide oversight
p.000014: and review. All countries should review their public health laws to ensure that they give the government sufficient
p.000014: authority to respond effectively to an epidemic while also providing individuals with appropriate human rights
p.000014: protections.
p.000014:
p.000014: • Participating in global surveillance and preparedness efforts —
p.000014: All countries must carry out their responsibilities under the IHR to participate in global surveillance efforts in a
p.000014: truthful and transparent manner. This includes providing prompt notification of events that may constitute a public
p.000014: health emergency of international concern, regardless
p.000014: of any negative consequences that may be associated with notification, such as a possible reduction in trade or
p.000014: tourism. The obligation to provide
p.000014: prompt notification to the international community stems not only from the text of the IHR but also from the ethical
p.000014: principles of solidarity and reciprocity. In addition, countries should develop
p.000014: preparedness plans for infectious disease outbreaks and other potential disasters and provide guidance to relevant
p.000014: health-care facilities to implement the plans.
p.000014:
...
p.000025: media.
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: 7. Obligations related to medical interventions for the diagnosis, treatment, and prevention of infectious disease
p.000028: 28
p.000028:
p.000028:
p.000028: Questions addressed:
p.000028:
p.000028: • What quality and safety standards should govern the administration of medical interventions offered during
p.000028: infectious disease outbreaks?
p.000028: • What rights do patients (or their authorized proxy decision-makers) have to receive information about the risks
p.000028: and benefits of, and alternatives to, medical interventions during infectious disease outbreaks?
p.000028: • Under what circumstances, if any, might it be appropriate to override an individual’s refusal of diagnostic,
p.000028: therapeutic, or preventive measures during an infectious disease outbreak?
p.000028: • What procedural safeguards should be provided before overriding an individual’s refusal of diagnostic,
p.000028: therapeutic, or preventive measures during an infectious disease outbreak?
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028: Any medical intervention for the diagnosis, treatment, or prevention of infectious disease should be provided in accord
p.000028: with professional medical standards, under conditions designed to ensure the highest attainable level of patient
p.000028: safety. Countries, with the support of international experts, should establish the minimum standards
p.000028: to be applied in the care and treatment of patients affected by an outbreak.
p.000028: These standards should apply not only to health-care institutions but also to home-based care, community activities
p.000028: (including health education sessions), and environmental decontamination efforts or the management of dead bodies.
p.000028:
p.000028: Individuals offered medical interventions for the diagnosis, treatment, or prevention of an infectious pathogen should
p.000028: be informed about the risks, benefits, and alternatives, just as they would be for other significant medical
p.000028: interventions. The presumption should be that the final decision about which medical interventions to accept, if any,
p.000028: belongs to the patient. For patients who lack the legal capacity to make health- care decisions for themselves,
p.000028: decisions should generally be made by appropriately authorized proxy decision-makers, with efforts made to solicit the
p.000028: patient’s assent whenever possible.
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028: Health-care providers should recognize that, in some situations, the refusal of diagnostic, therapeutic, or preventive
p.000028: measures might be a choice that is rational from the perspective of a mentally competent individual. If an individual
p.000028: is unwilling to accept an intervention, providers should engage the patient in an open and respectful dialogue, paying
p.000028: careful attention to the patient’s concerns, perceptions, and situational needs.
p.000028:
p.000028: In exceptional situations, there may be legitimate reasons to override an individual’s refusal of a diagnostic,
p.000028: therapeutic, or preventive measure that has proven to
p.000028: be safe and effective and is part of the accepted medical standard of care. Decisions on whether to override a refusal
p.000028: should be grounded in the following considerations:
p.000028:
...
p.000039: drug-resistant bacteria), or research (e.g. during clinical trials of new diagnostics, vaccines or interventions). Such
p.000039: samples are sent to laboratories on site or other laboratories, either domestically or internationally, for analysis.
p.000039:
p.000039: Biospecimens collected during the management of an infectious disease outbreak offer researchers important
p.000039: opportunities to understand the outbreak pathogen better and to develop diagnostic, therapeutic, and preventive
p.000039: measures that
p.000039:
p.000039: may mitigate the harm of similar outbreaks in the future. At the same time, long-term storage of biospecimens involves
p.000039: potential risks to individuals and communities.
p.000039: Risks to individuals primarily relate to the unwanted disclosure of personal information. This can be minimized by
p.000039: protecting the confidentiality of individuals’ identities, but confidentiality may be difficult to protect when only a
p.000039: small number of people are being tested. Moreover, even when individual confidentiality can be adequately protected,
p.000039: some individuals or communities might still be uncomfortable making their biospecimens available for future use,
p.000039: especially if such use is not subject to community control. Particular concerns can arise when specimens are
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039:
p.000039: transferred abroad without the originating country’s prior agreement. Addressing these concerns requires time-consuming
p.000039: but necessary relationship-building, consultation, and education, as well as the establishment of policies, practices,
p.000039: and institutions capable of commanding public confidence and trust.
p.000040: 40
p.000040: In addition to the general principles discussed elsewhere in this document, specific considerations relevant to the
p.000040: long-term storage of biological specimens collected during infectious disease outbreaks include the following:
p.000040:
p.000040: • Provision of information — Before individuals are asked to provide biospecimens during an infectious disease
p.000040: outbreak, they should be given access to information about the
p.000040: purpose of the collection, whether their samples will be stored and, if so, the ways in which their specimens might be
p.000040: used in the future. When feasible and consistent with public health objectives, individuals should be asked to provide
p.000040: informed consent or be given the opportunity to opt out of the long-term storage of their specimens. Seeking informed
p.000040: consent is particularly important if there is any possibility that the specimens may later be used for research
p.000040: purposes.
p.000040:
p.000040: • Community engagement — Individuals and organizations involved in the long-term storage of biospecimens collected
p.000040: during infectious disease outbreaks should engage representatives of the local community in a dialogue about the
p.000040: process. Community representatives should be involved in the development of policies regarding future use of the
p.000040: samples, including measures to ensure that equitable access is provided to any benefits that result from using the
p.000040: samples in research.
p.000040:
...
Social / employees
Searching for indicator employees:
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p.000015: revise their decisions based on information they receive. Reaching out to the community early, and allowing for
p.000015: consideration of
p.000015: the interests of all people who will
p.000015: 16 potentially be affected, can play an important role in building trust and empowering communities to
p.000015: be involved in a genuine dialogue.
p.000015:
p.000015: • Transparency — The ethical principle of transparency requires that decision-makers publicly explain the basis for
p.000015: decisions in language that is
p.000015: linguistically and culturally appropriate.
p.000015: When decisions must be made in the face of uncertain information, the uncertainties should be explicitly acknowledged
p.000015: and conveyed to the public.
p.000015:
p.000015: • Accountability — The public should know who is responsible for making
p.000015: and implementing decisions in relation to the outbreak response, and how they can challenge decisions they believe are
p.000015: inappropriate.
p.000015:
p.000015: The media will play an important role in any infectious disease outbreak response effort. It is therefore important to
p.000015: ensure that the media has access to accurate and timely information about the disease and its management. Governments,
p.000015: nongovernmental organizations, and
p.000015: academic institutions should make efforts to support media training in relevant scientific concepts and techniques for
p.000015: communicating risk information without raising unnecessary alarm. Media training is important for public health sector
p.000015: employees who may interact with media covering public health issues.
p.000015: In turn, the media has a responsibility to provide accurate, factual, and balanced reporting. This is an important
p.000015: component of media ethics.
p.000015:
p.000015:
p.000015: Cholera outbreak in Sierra Leone
p.000015: Source: Fid Thompson
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015: 3. Situations of particular vulnerability
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000017: 17
p.000017: Questions addressed:
p.000017:
p.000017: • Why are some individuals and groups considered particularly vulnerable during infectious disease outbreaks?
p.000017: • How can vulnerability affect a person’s ability to access services during infectious disease outbreaks?
p.000017: • How can vulnerability affect a person’s willingness and ability to share and receive information during an
p.000017: infectious disease outbreak?
p.000017: • Why are stigmatization and discrimination particular risks during infectious disease outbreaks?
p.000017: • In what ways might vulnerable persons suffer disproportionate burdens from infectious disease response efforts,
p.000017: or have a greater need for resources?
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
...
p.000043: the training, tools, and resources necessary to minimize the risks to the extent reasonably possible. This includes
p.000043: complete and accurate information known about the nature
p.000043: of the pathogen and infection control measures, updated information on the epidemiological situation at the local
p.000043: level, and the provision of personal protective equipment. Regular screening of frontline workers should be put
p.000043: in place to detect any infection as quickly as possible, in order to initiate immediate care and minimize the risk of
p.000043: transmission to colleagues, patients, families, and community members.
p.000043:
p.000043: • Priority access to health care — Frontline workers who become sick, as well as any immediate family members who
p.000043: become ill through contact with the worker, should be ensured access to the highest level of care reasonably available.
p.000043: In addition, countries should consider giving frontline workers and their families priority access to vaccines
p.000043: and other treatments as they become available.
p.000043:
p.000043: • Appropriate remuneration — Frontline workers should be given fair remuneration for their work. Governments should
p.000043: ensure that public sector workers are paid in
p.000043: a timely manner, and make efforts to ensure that actors in the private and nongovernmental sectors fulfil their own
p.000043: obligations to pay their employees and contractors. Fair remuneration for frontline workers includes the provision of
p.000043: financial support during periods in which workers are unable to carry out their normal responsibilities because of an
p.000043: infection acquired on the job.
p.000043:
p.000043: • Support for reintegrating into the community — Frontline workers may experience stigma and discrimination,
p.000043: particularly those involved in unpopular measures such as infection control or burials not conducted according to
p.000043: the traditional customs. Governments should make efforts to reduce the risk of stigmatization and discrimination and
p.000043: help such workers to reintegrate into the community, including by providing job placement assistance and relocation to
p.000043: other communities if needed.
p.000043:
p.000043: • Assistance to family members — Assistance should be provided to families of frontline workers who need to remain
p.000043: away from home in order
p.000043: to carry out their responsibilities or to recuperate from illness. Death benefits should be provided to family members
p.000043: of frontline workers who die in the line of duty, including those who were volunteers or “casual workers.”
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
...
Social / gender
Searching for indicator gender:
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p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001: Table of Contents
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001: Foreword ............................................................................................................ 3
p.000001: 1
p.000001: Acknowledgements 4
p.000001: Introduction 7
p.000001: Guidelines 12
p.000001: 1. Obligations of governments and the international community 13
p.000001: 2. Involving the local community
p.000015: 15
p.000015: 3. Situations of particular vulnerability
p.000017: 17
p.000017: 4. Allocating scarce resources
p.000020: 20
p.000020: 5. Public health surveillance
p.000023: 23
p.000023: 6. Restrictions on freedom of movement 25
p.000023: 7. Obligations related to medical interventions for the diagnosis, treatment,
p.000023: and prevention of infectious disease
p.000028: 28
p.000028: 8. Research during infectious disease outbreaks 30
p.000028: 9. Emergency use of unproven interventions outside of research 35
p.000028: 10. Rapid data sharing
p.000038: 38
p.000038: 11. Long-term storage of biological specimens collected during infectious
p.000038: disease outbreaks
p.000039: 39
p.000039: 12. Addressing sex- and gender-based differences 41
p.000039: 13. Frontline response workers’ rights and obligations 43
p.000039: 14. Ethical issues in deploying foreign humanitarian aid workers 47
p.000039: References 50
p.000039: Annex 1. Ethics guidance documents consulted in developing Guidance for managing ethical issues in infectious disease
p.000039: outbreaks 52
p.000039: Annex 2. Participants at meetings to formulate Guidance for managing ethical issues in infectious disease outbreaks
p.000055: 55
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055: Foreword
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055: Infectious disease outbreaks are periods of great uncertainty. Events unfold, resources and capacities that are often
p.000055: limited
p.000055: are stretched yet further, and decisions for a public health response must be made quickly, even though the evidence
p.000055: for decision-making may be scant. In such a situation, public health officials, policy-makers, funders, researchers,
p.000055: field epidemiologists, first responders, national
p.000055: ethics boards, health-care workers, and public health practitioners need a moral compass
p.000055: to guide them in their decision-making. Bioethics puts people at the heart of the problem, emphasizes the principles
...
p.000025: for a period following the end of confinement. In addition, efforts should be made to support the social and
p.000025: professional reintegration of individuals for whom confinement is no longer necessary, including measures to reduce
p.000025: stigmatization and discrimination.
p.000025:
p.000025: • Due process protections — Mechanisms should be in place to allow individuals whose liberty has been restricted to
p.000025: challenge the appropriateness of those restrictions, the way they are enforced, and the conditions under which the
p.000025: restrictions are carried out. If it is not feasible to provide full due process protection before the restrictions are
p.000025: implemented in an emergency scenario, mechanisms for review and appeal should be made
p.000025: available without excessive delay. All persons involved in decisions to restrict individuals’ freedom of movement
p.000025: should be accountable for any abuses of authority.
p.000025:
p.000025: • Equitable application — Restrictions on freedom of movement should be
p.000025: applied in the same manner to all 27
p.000025: persons posing a comparable public health risk. Thus, individuals should not be subject to greater or lesser
p.000025: restrictions for reasons unrelated to the
p.000025: risks they may pose to others, including membership in any disfavoured or favoured social group or class (for example,
p.000025: groups defined by gender, ethnicity, or religion). In addition, policy- makers should seek to ensure that restrictions
p.000025: are not applied in a manner that imposes a disproportionate burden on vulnerable segments of society.
p.000025:
p.000025: • Communication and transparency —
p.000025: Policy-makers and public health officials should engage communities in a dialogue about any restrictions on freedom of
p.000025: movement and solicit community members’ views on how restrictions can be carried out with the least possible burden.
p.000025: They should also provide regular updates on the implementation of such measures,
p.000025: both to the public at large and to those whose movement has been restricted. Communication strategies should be
p.000025: designed to avoid the stigmatization
p.000025: of individuals whose liberty has been restricted and to protect their privacy and confidentiality, particularly in the
p.000025: media.
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025:
p.000025: 7. Obligations related to medical interventions for the diagnosis, treatment, and prevention of infectious disease
p.000028: 28
p.000028:
p.000028:
p.000028: Questions addressed:
p.000028:
p.000028: • What quality and safety standards should govern the administration of medical interventions offered during
p.000028: infectious disease outbreaks?
...
p.000040: conduct critical research.
p.000040: If it is necessary to transfer specimens internationally, appropriate governance mechanisms and regulatory systems
p.000040: should be established to ensure that representatives of the country where the specimens were collected are involved in
p.000040: decisions about the specimens’ use. The international community should make efforts to strengthen countries’ capacity
p.000040: to maintain biospecimens within their own borders.
p.000040:
p.000040: • Material transfer agreements — Biospecimens should not be transferred outside of the countries from which they
p.000040: are collected without formal material transfer agreements. Such agreements should specify the purpose of the transfer,
p.000040: certify the specimen donor's consent as appropriate, provide for adequate confidentiality protection, cover the
p.000040: physical security of the specimens, require that the country
p.000040: of origin is acknowledged in future research reporting, and guarantee that the benefits of any subsequent use of the
p.000040: specimens will be shared with the communities from which the samples were obtained. Material transfer agreements should
p.000040: be developed with the involvement of persons responsible for the care of patients and the taking of samples,
p.000040: representatives of affected communities and patients, and relevant government officials and ethics committees.
p.000040:
p.000040:
p.000040:
p.000040:
p.000040:
p.000040:
p.000040:
p.000040:
p.000040: 12. Addressing sex- and gender-based differences
p.000040:
p.000040:
p.000040:
p.000041: 41
p.000041: Questions addressed:
p.000041:
p.000041: • How are sex and gender relevant to infectious disease outbreaks?
p.000041: • How can sex and gender be incorporated into public health and surveillance?
p.000041: • How can social and cultural practices relevant to gender roles affect infectious disease outbreaks?
p.000041: • How should appropriate reproductive health-care services be safely provided during an infectious disease
p.000041: outbreak?
p.000041: • How are sex and gender relevant to communication strategies during outbreaks?
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: Sex (biological and physiological characteristics) and gender (socially constructed roles, behaviours, activities, and
p.000041: attributes)20 can influence the spread, containment, course, and consequences of infectious disease outbreaks. Sex and
p.000041: gender differences have been associated with differences in susceptibility to infection, levels of health care
p.000041: received, and in the course and outcome of illness.21 Addressing sex and gender differences in infectious disease
p.000041: outbreak planning and response efforts requires attention to the following considerations:
p.000041:
p.000041: • Sex- and gender-inclusive surveillance programmes — Public health surveillance should systematically collect
p.000041: disaggregated information on sex, gender, and pregnancy status, both to identify differential risks and
p.000041: modes of transmission, and to monitor any differential impact of an infectious disease outbreak and the interventions
p.000041: used to control it. This information is particularly important for pregnant women and their offspring.
p.000041:
p.000041: • Ensuring the availability of high- quality reproductive health-care services — Whether or not they are currently
p.000041: pregnant, women of childbearing age should have access to the full range of high-quality
p.000041: reproductive health-care services during an infectious disease outbreak. These services should be organized and
p.000041: delivered in a manner that does not stigmatize persons who use them or expose them to a heightened risk of infection
p.000041: with the outbreak pathogen. If there is evidence that an infectious
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: disease creates special risks for pregnant women or their fetus, both men and women should be informed of these risks
p.000041: and have access to safe methods to minimize them, along with reproductive counselling services.
p.000041:
p.000041: • Sex- and gender-inclusive research
p.000041: 42 strategies — Researchers should make efforts to ensure that studies do not disproportionately
p.000041: favour a particular sex or gender, and that women who are or might become pregnant are not inappropriately excluded
p.000041: from research participation. During an outbreak, research on experimental treatments and preventive measures should
p.000041: seek to identify any sex- or gender-related differences in outcomes.
p.000041:
p.000041: • Attention to social and cultural practices — Gender-related roles and practices can affect all aspects of
p.000041: infectious disease outbreaks, including
p.000041: individuals’ risk of becoming infected, the consequences of infection, their use of health services and other
p.000041: health-seeking behaviours, and their vulnerability to interpersonal violence.
p.000041: Policy-makers and outbreak responders should identify and respond to these factors, drawing when possible
p.000041: on relevant anthropological and sociological research.
p.000041:
p.000041: • Sex- and gender-sensitive communication strategies —
p.000041: Entities responsible for developing and implementing communication strategies should be sensitive to sex- and gender-
p.000041: based differences in how individuals have access to and respond to health- related information. Separate messages and
p.000041: communication strategies may be needed to provide relevant information to particular subgroups, such as pregnant women
p.000041: or nursing mothers.
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: Influenza in India
p.000041: Source: Tom Pietrasik, WHO
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041:
p.000041: 13. Frontline response workers’ rights and obligations
p.000041:
p.000041:
p.000041:
p.000043: 43
p.000043: Questions addressed:
p.000043:
p.000043: • What obligations exist to protect the health of frontline workers who participate in infectious disease outbreak
p.000043: response efforts?
p.000043: • What obligations exist to provide material support to frontline workers who participate in infectious disease
p.000043: outbreak response efforts?
p.000043: • To what extent do these obligations extend to the workers’ family?
p.000043: • What should be taken into account in determining whether individuals have an obligation to serve as frontline
p.000043: workers during infectious disease outbreaks?
p.000043: • What special obligations do workers in the health-care sector have during infectious disease outbreaks?
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
...
p.000050: July 2016).
p.000050:
p.000050: 15 Research ethics in international epidemic response. Geneva: World Health Organization; 2009 (WHO/HSE/GIP/ITP/10.1;
p.000050: www.who.int/ethics/gip_research_ethics_.pdf, accessed 23 July 2016).
p.000050:
p.000050: 16 Developing global norms for sharing data and results during public health emergencies. Geneva: World Health
p.000050: Organization; 2015 (www.who.int/medicines/ebola-treatment/ blueprint_phe_data-share-results/en/, accessed 23 July
p.000050: 2016).
p.000050:
p.000050: 17 Overlapping publications. International Committee of Medical Journal Editors (www.
p.000050: icmje.org/recommendations/browse/publishing-and-editorial-issues/overlapping- publications.html, accessed 23 July
p.000050: 2016).
p.000050:
p.000050: 18 Ethical issues related to study design for trials on therapeutics for Ebola Virus Disease.
p.000050: 2014. Report of the WHO Ethics Working Group meeting, 20–21 October 2014. Geneva: World Health Organization; 2014
p.000050: (WHO/HIS/KER/GHE/14.2; http://apps.who.int/iris/ bitstream/10665/137509/1/WHO_HIS_KER_GHE_14.2_eng.pdf, accessed 23
p.000050: July 2016).
p.000050:
p.000050: 19 Dye C, Bartolomeos K, Moorthy V, Kieny MP. Data sharing in public health emergencies: a call to researchers. Bull
p.000050: World Health Organ. 2016;1:94(3):158. doi: 10.2471/ BLT.16.170860
p.000050: (www.who.int/bulletin/volumes/94/3/16-170860.pdf?ua=1).
p.000050:
p.000050: 20 Gender, women and health. In: WHO [website]. Geneva: World Health Organization
p.000050: (http://apps.who.int/gender/whatisgender/en/, accessed 23 July 2016).
p.000050:
p.000050: 21 Addressing sex and gender in epidemic-prone infectious diseases. Geneva: World Health Organization; 2007
p.000050: (www.who.int/csr/resources/publications/SexGenderInfectDis.pdf).
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050: Annex 1. Ethics guidance documents that contributed to the Guidance for managing ethical issues in infectious disease
p.000050: outbreaks
p.000050:
p.000050:
p.000050: WHO guidance documents
p.000050:
p.000050: 52 Addressing ethical issues in pandemic influenza planning: Discussion papers. Geneva: World Health
p.000050: Organization; 2008 (WHO/HSE/EPR/GIP/2008.2, WHO/IER/ETH/2008.1; http://apps.
p.000050: who.int/iris/bitstream/10665/69902/1/WHO_IER_ETH_2008.1_eng.pdf?ua=1).
p.000050:
p.000050: Ethical considerations for use of unregistered interventions for Ebola viral disease. Report of an advisory panel to
p.000050: WHO. Geneva: World Health Organization; 2014 (WHO/HIS/KER/ GHE/14.1;
p.000050: http://apps.who.int/iris/bitstream/10665/130997/1/WHO_HIS_KER_GHE_14.1_ eng.pdf?ua=1).
p.000050:
p.000050: Ethical considerations in developing a public health response to pandemic influenza. Geneva: World Health Organization;
p.000050: 2007 (WHO/CDS/EPR/GIP/2007.2; http://www.who.int/ csr/resources/publications/WHO_CDS_EPR_GIP_2007_2c.pdf?ua=1).
p.000050:
p.000050: Ethical issues related to study design for trials on therapeutics for Ebola virus disease. WHO Ethics Working Group
p.000050: Meeting, 20–21 October 2014. Geneva: World Health Organization; 2014 (WHO/HIS/KER/GHE/14.2;
p.000050: http://apps.who.int/iris/bitstream/10665/137509/1/WHO_ HIS_KER_GHE_14.2_eng.pdf?ua=1).
p.000050:
...
Social / parents
Searching for indicator parents:
(return to top)
p.000017: proactively reach out to the concerned population wherever they are.
p.000017:
p.000017: • Impact of stigmatization and discrimination — Members of socially disadvantaged groups often face considerable
p.000017: stigma and discrimination, which can be exacerbated in public health emergencies characterized by fear and distrust.
p.000017: Those responsible for infectious disease outbreak response should ensure that all individuals are treated fairly and
p.000017: equitably regardless of their social status or perceived “worth” to society. They should also take measures to prevent
p.000017: stigmatization and social violence.
p.000017:
p.000017: • Disproportionate burdens of outbreak response measures — Even when public health measures
p.000017: are designed with the best of intentions, they can inadvertently place a disproportionate burden on particular
p.000017: populations. For example, quarantine orders that require individuals to stay
p.000017: in their homes can have devastating consequences for persons who need to leave their homes to obtain basic
p.000017: necessities such as clean water or food. Similarly, social distancing measures such as school closures can place
p.000017: disproportionate burdens on children who depend on going to school to access regular meals, as well as on working
p.000017: parents who may have no one available to provide child care.
p.000017:
p.000017: • Greater need for resources — Accommodating the needs of individuals whose situation makes them particularly
p.000017: vulnerable sometimes requires the use of additional resources.
p.000017: In some cases, additional resources are relatively minimal, such as when an interpreter is hired to make
p.000017: a community engagement forum accessible to members of a linguistic minority group. In other cases, they may be more
p.000017: substantial, such as when mobile health teams are assembled to dispatch vaccines and treatments to hard-to-reach rural
p.000017: areas. It is legitimate to take costs into consideration in determining whether a particular accommodation is
p.000017: warranted; indeed, the goal of maximizing utility demands that such assessments be made.
p.000017: However, despite the importance of conserving limited resources, the ethical principle of equity may sometimes justify
p.000017: providing greater resources to persons who have greater needs.
p.000017:
p.000017: • Heightened risk of violence — Infectious disease outbreaks can
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: exacerbate social unrest, increase criminality, and induce violent behaviour, especially against vulnerable groups such
p.000017: as minority populations
...
Social / philosophical differences/differences of opinion
Searching for indicator opinion:
(return to top)
p.000001:
p.000001: value
p.000001: public health ethics
p.000001: procedural justice
p.000001:
p.000001: equity
p.000001:
p.000001: principle
p.000001: public good
p.000001: value dignity
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001: Guidance for Managing Ethical Issues
p.000001: in Infectious Disease Outbreaks
p.000001:
p.000001:
p.000001:
p.000001: WHO Library Cataloguing-in-Publication Data
p.000001:
p.000001: Guidance for managing ethical issues in infectious disease outbreaks.
p.000001:
p.000001: 1.Disease Outbreaks. 2.Communicable Diseases. 3.Ethics. I.World Health Organization. ISBN 978 92 4 154983 7
p.000001: (NLM classification: WA 105)
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001: © World Health Organization 2016
p.000001:
p.000001: All rights reserved. Publications of the World Health Organization are available on the WHO website
p.000001: (http://www.who.int) or can be purchased from WHO Press, World Health Organization, 20 Avenue Appia, 1211 Geneva 27,
p.000001: Switzerland (tel.: +41 22 791 3264;
p.000001: fax: +41 22 791 4857; email: bookorders@who.int).
p.000001:
p.000001: Requests for permission to reproduce or translate WHO publications –whether for sale or for non-commercial
p.000001: distribution– should be addressed to WHO Press through the WHO website
p.000001: (http://www.who.int/about/licensing/copyright_form/index.html).
p.000001: The designations employed and the presentation of the material in this publication do not imply the expression of any
p.000001: opinion whatsoever on the part of the World Health Organization concerning the legal status of any country, territory,
p.000001: city or area or of its
p.000001: authorities, or concerning the delimitation of its frontiers or boundaries. Dotted and dashed lines on maps represent
p.000001: approximate border lines for which there may not yet be full agreement.
p.000001: The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or
p.000001: recommended by the World Health Organization in preference to others of a similar nature that are not mentioned. Errors
p.000001: and omissions excepted, the names of proprietary products are distinguished by initial capital letters.
p.000001: All reasonable precautions have been taken by the World Health Organization to verify the information contained in this
p.000001: publication. However, the published material is being
p.000001: distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and
p.000001: use of the material lies with the reader. In no event shall the World Health Organization be liable for damages arising
p.000001: from its use.
p.000001:
p.000001: Printed in Spain
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001: Table of Contents
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001: Foreword ............................................................................................................ 3
p.000001: 1
p.000001: Acknowledgements 4
p.000001: Introduction 7
p.000001: Guidelines 12
...
p.000050:
p.000050: Ethics of using convalescent whole blood and convalescent plasma during the Ebola epidemic: Interim guidance for ethics
p.000050: review committees, researchers, national health authorities and blood transfusion services. Geneva: World Health
p.000050: Organization; 2015 (http://apps.who.int/iris/bitstream/10665/161912/1/WHO_HIS_KER_GHE_15.1_eng. pdf?ua=1&ua=1).
p.000050:
p.000050: Ethics in epidemics, emergencies and disasters: Research, surveillance and patient care: Training manual. Geneva: World
p.000050: Health Organization; 2015 (http://apps.who.int/iris/ bitstream/10665/196326/1/9789241549349_eng.pdf?ua=1).
p.000050:
p.000050: Guidance on ethics of tuberculosis prevention, care and control. Geneva: World Health Organization; 2010
p.000050: (http://apps.who.int/iris/bitstream/10665/44452/1/9789241500531_ eng.pdf?ua=1).
p.000050:
p.000050: Research ethics in international epidemic response: WHO Technical Consultation. Geneva: World Health Organization; 2009
p.000050: (www.who.int/ethics/gip_research_ethics_.pdf).
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050: Standards and operational guidance for ethics review of health-related research with human participants. Geneva: World
p.000050: Health Organization; 2011 (http://apps.who.int/iris/ bitstream/10665/44783/1/9789241502948_eng.pdf?ua=1&ua=1).
p.000050:
p.000050: National guidance/opinion papers
p.000050:
p.000050: Allocation of ventilators in an influenza pandemic: Planning document. New York State Task Force on Life and the Law;
p.000050: 2007 (www.cidrap.umn.edu/sites/default/files/public/
p.000050: php/196/196_guidance.pdf).
p.000053: 53
p.000053:
p.000053: Altevogt BM, Stroud C, Hanson S, Hanfling D, Gostin LO, editors. Guidance for establishing crisis standards of care for
p.000053: use in disaster situations: A letter report. Washington: National Academies Press; 2009
p.000053: (www.nap.edu/read/12749/chapter/1).
p.000053:
p.000053: Ethical issues raised by a possible influenza pandemic. Opinion No. 106. Paris: National Consultative Ethics Committee
p.000053: for Health and Life Sciences; 2009 (www.ccne-ethique.fr/ sites/default/files/publications/avis_106_anglais.pdf).
p.000053:
p.000053: Ethics and Ebola: Public health planning and response. Washington DC: Presidential Commission for the Study of
p.000053: Bioethical Issues.; 2015 (http://bioethics.gov/sites/default/files/ Ethics-and-Ebola_PCSBI_508.pdf).
p.000053:
p.000053: Ethical guidelines in Pandemic Influenza - Recommendations of the Ethics Subcommittee of the Advisory Committee to the
p.000053: Director, United States Centers for Disease Control and Prevention. Ethical guidelines in pandemic influenza. Atlanta:
p.000053: Centers for Disease Control and Prevention; 2007 (www.cdc.gov/od/science/integrity/phethics/docs/panflu_ethic_
p.000053: guidelines.pdf).
p.000053:
p.000053: Ethics Subcommittee of the Advisory Committee to the Director, United States Centers for Disease Control and
p.000053: Prevention. Ethical guidance for public health emergency preparedness and response: Highlighting ethics and values in
p.000053: vital public health service. Atlanta: Centers for Disease Control and Prevention; 2008
p.000053: (www.cdc.gov/od/science/integrity/phethics/docs/
p.000053: white_paper_final_for_website_2012_4_6_12_final_for_web_508_compliant.pdf).
p.000053:
p.000053: Ethics Subcommittee of the Advisory Committee to the Director, United States Centers for Disease Control and
...
Searching for indicator philosophy:
(return to top)
p.000059: Dr Rita Helfand, Centers for Disease Control and Prevention, United States of America Dr Simon Jenkins, Research
p.000059: Fellow, University of Birmingham Project on the ethical challenges experienced by British military healthcare
p.000059: professionals in the Ebola region, United Kingdom
p.000059: Dr Pretesh Kiran, Assistant Professor, Community Health; Convener, Disaster Management Unit, St Johns National Academy
p.000059: of Health Sciences, India
p.000059: 60 Dr Markus Kirchner, Department for Infectious Disease Epidemiology, Robert Koch Institute,
p.000059: Germany
p.000059: Dr Katherine Littler, Senior Policy Adviser, Wellcome Trust, United Kingdom
p.000059: Professor Samuel McConkey, Head, International Health and Tropical Medicine, Royal College of Surgeons, Ireland
p.000059: Dr Farhat Moazam, Founding Chairperson, Center of Biomedical Ethics and Culture, Sindh Institute of Urology and
p.000059: Transplantation, Pakistan
p.000059: Dr Robert Nelson, Deputy Director and Senior Pediatric Ethicist, Office of Pediatric Therapeutics, Food and Drug
p.000059: Administration, United States of America
p.000059: Professor Alistair Nichol, Consultant Anaesthetist, School of Medicine and Medical Sciences, and EU projects,
p.000059: University College Dublin, Ireland
p.000059: Professor Lisa Schwartz, Arnold Johnson Chair in Health Care Ethics, Ethics in Health Care, McMaster University, Canada
p.000059: Professor Michael Selgelid, Director, Centre for Human Bioethics, Monash University, Australia Dr Kadri Simm, Associate
p.000059: Professor of Practical Philosophy, University of Tartu, Estonia
p.000059: Dr Aissatou Touré, Head, Immunology Department, Institut Pasteur de Dakar and Member, National Ethics Committee,
p.000059: Senegal
p.000059: Professor Ross Upshur, Canada Research Chair in Primary Care Research; Professor, Department of Family and Community
p.000059: Medicine and Dalla Lana School of Public Health, University of Toronto, Canada
p.000059: Dr Maria Van Kerkhove, Centre for Global Health, Institut Pasteur, France
p.000059: Dr Aminu Yakubu, Department of Health Planning and Research, Federal Ministry of Health, Nigeria
p.000059:
p.000059: Resource person
p.000059: Professor Carl Coleman (Rapporteur), Professor of Law and Academic Director, Division of Online Learning, Seton Hall
p.000059: University, New Jersey, United States of America
p.000059:
p.000059: WHO headquarters Secretariat, Geneva, Switzerland
p.000059: Dr Vânia de la Fuente-Núñez, Technical Officer, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059: Dr Andreas Reis, Technical Officer, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059: Dr Abha Saxena, Coordinator, Global Health Ethics, Department of Knowledge, Ethics and Research
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
p.000059:
...
Economic / Economic/Poverty
Searching for indicator poor:
(return to top)
p.000013: surveillance and prevention activities.
p.000013: Together, these actions can substantially reduce the spread of diseases with epidemic potential. In addition, they help
p.000013: assure that an effective public health response will be possible if an epidemic occurs. Governments have an ethical
p.000013: obligation to ensure the long-term capacity of the systems necessary to carry out effective epidemic prevention and
p.000013: response efforts.
p.000013:
p.000013: Countries have obligations not only to persons within their own borders but also to the broader international
p.000013: community. As the United Nations Committee on
p.000013:
p.000013: Economic, Social and Cultural Rights has recognized, “given that some diseases are easily transmissible beyond the
p.000013: frontiers of a State, the international community has a collective responsibility to address this problem. The
p.000013: economically developed States Parties have a special responsibility
p.000013: and interest to assist the poorer developing States in this regard.”9
p.000013:
p.000013: These obligations reflect the practical reality that infectious disease outbreaks do not respect national borders, and
p.000013: that an outbreak in one country can put the rest of the world at risk.
p.000013:
p.000013: Countries’ obligations to consider the needs of the international community do not arise solely in times of emergency.
p.000013: Instead, they require ongoing attention to ameliorate the social determinants of poor
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013: health that contribute to infectious disease outbreaks, including poverty, limited access to education, and inadequate
p.000013: systems of water and sanitation.
p.000013:
p.000013: The following are key elements of the obligations of governments and the international community:
p.000014: 14
p.000014: • Ensuring the sufficiency of national public health laws — As discussed later in this document, certain public
p.000014: health interventions that might be necessary during an infectious disease outbreak (e.g. restrictions on freedom of
p.000014: movement) depend on having a clear legal basis for government action, as well as a system in place to provide oversight
p.000014: and review. All countries should review their public health laws to ensure that they give the government sufficient
p.000014: authority to respond effectively to an epidemic while also providing individuals with appropriate human rights
p.000014: protections.
p.000014:
p.000014: • Participating in global surveillance and preparedness efforts —
p.000014: All countries must carry out their responsibilities under the IHR to participate in global surveillance efforts in a
p.000014: truthful and transparent manner. This includes providing prompt notification of events that may constitute a public
p.000014: health emergency of international concern, regardless
p.000014: of any negative consequences that may be associated with notification, such as a possible reduction in trade or
...
p.000020: access to general health-care services due to a combination of a greater number of patients and the sickness and death
p.000020: of health-care workers. As
p.000020: a result, deaths from tuberculosis, human immunodeficiency virus (HIV), and malaria increased dramatically during this
p.000020: period.10
p.000020:
p.000020: Governments, health-care facilities, and others involved in response efforts should
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020: prepare for such situations by developing guidelines on the allocation of scarce resources in outbreak situations. Such
p.000020: guidelines should be developed through an open and transparent process involving broad stakeholder input and, to the
p.000020: extent
p.000020: possible, should be incorporated into formal written documents that establish clear priorities and procedures. Those
p.000020: involved
p.000020: in developing these guidelines should be guided by the following considerations:
p.000020:
p.000020: • Balancing considerations of utility and equity — Resource allocation decisions should be guided by the ethical
p.000020: principles of utility and equity. The principle of utility requires allocating resources to maximize benefits and
p.000020: minimize burdens, while the principle of equity requires attention to the fair distribution of benefits
p.000020: and burdens. In some cases, an equal distribution of benefits and burdens may be considered fair, but in others, it may
p.000020: be fairer to give preference to groups that are worse off, such as the poor, the sick, or the vulnerable. It is not
p.000020: always be possible to achieve fully both utility and equity. For example, establishing treatment centres in large urban
p.000020: settings promotes the value of utility because it makes it possible to treat a large number of people with relatively
p.000020: few resources. However, such
p.000020: an approach may be in tension with the principle of equity if it means that fewer resources will be directed to
p.000020: isolated communities in remote rural areas.
p.000020: There is no single correct way to resolve potential tensions between utility
p.000020: and equity; what is important is that decisions are made through an inclusive and transparent process that takes into
p.000020: account local circumstances.
p.000020: • Defining utility on the basis of health-related considerations —
p.000020: In order to apply the ethical principle of utility, it is first necessary to identify the type of outcomes that will be
p.000020: counted as improvements to welfare. In general, the focus should be on the health-related benefits of allocation
p.000020: mechanisms, whether defined in terms 21
p.000020: of the total number of lives saved, the total number of life years saved, or the total number of quality-adjusted life
p.000020: years saved. For this reason,
p.000020: while it might be ethical to prioritize persons who are essential to manage an outbreak, it is not appropriate to
p.000020: prioritize persons based on social value considerations unrelated to carrying out critical services necessary for
p.000020: society.
p.000020:
...
Searching for indicator poverty:
(return to top)
p.000013: obligation to ensure the long-term capacity of the systems necessary to carry out effective epidemic prevention and
p.000013: response efforts.
p.000013:
p.000013: Countries have obligations not only to persons within their own borders but also to the broader international
p.000013: community. As the United Nations Committee on
p.000013:
p.000013: Economic, Social and Cultural Rights has recognized, “given that some diseases are easily transmissible beyond the
p.000013: frontiers of a State, the international community has a collective responsibility to address this problem. The
p.000013: economically developed States Parties have a special responsibility
p.000013: and interest to assist the poorer developing States in this regard.”9
p.000013:
p.000013: These obligations reflect the practical reality that infectious disease outbreaks do not respect national borders, and
p.000013: that an outbreak in one country can put the rest of the world at risk.
p.000013:
p.000013: Countries’ obligations to consider the needs of the international community do not arise solely in times of emergency.
p.000013: Instead, they require ongoing attention to ameliorate the social determinants of poor
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013: health that contribute to infectious disease outbreaks, including poverty, limited access to education, and inadequate
p.000013: systems of water and sanitation.
p.000013:
p.000013: The following are key elements of the obligations of governments and the international community:
p.000014: 14
p.000014: • Ensuring the sufficiency of national public health laws — As discussed later in this document, certain public
p.000014: health interventions that might be necessary during an infectious disease outbreak (e.g. restrictions on freedom of
p.000014: movement) depend on having a clear legal basis for government action, as well as a system in place to provide oversight
p.000014: and review. All countries should review their public health laws to ensure that they give the government sufficient
p.000014: authority to respond effectively to an epidemic while also providing individuals with appropriate human rights
p.000014: protections.
p.000014:
p.000014: • Participating in global surveillance and preparedness efforts —
p.000014: All countries must carry out their responsibilities under the IHR to participate in global surveillance efforts in a
p.000014: truthful and transparent manner. This includes providing prompt notification of events that may constitute a public
p.000014: health emergency of international concern, regardless
p.000014: of any negative consequences that may be associated with notification, such as a possible reduction in trade or
p.000014: tourism. The obligation to provide
p.000014: prompt notification to the international community stems not only from the text of the IHR but also from the ethical
p.000014: principles of solidarity and reciprocity. In addition, countries should develop
...
Searching for indicator social status:
(return to top)
p.000017:
p.000017:
p.000017:
p.000017:
p.000017: • Need for effective alternative communication strategies — Some types of vulnerability can impede
p.000017: an individual’s ability to transmit or receive information. Communication barriers can stem from a wide range of
p.000017: factors including, but not limited to, illiteracy, unfamiliarity with the
p.000017: 18 local or official language(s), vision or
p.000017: hearing impairments, social isolation, or lack of access to Internet and other communication services. These barriers
p.000017: make it difficult for individuals to receive necessary public health messages
p.000017: or to participate fully in community engagement activities. To overcome these barriers, messages should be delivered in
p.000017: multiple formats (e.g. radio, text messages, billboards, cartoons) as well as direct oral communication with key
p.000017: stakeholders. Health authorities should not assume that the public will search for information; instead, they should
p.000017: proactively reach out to the concerned population wherever they are.
p.000017:
p.000017: • Impact of stigmatization and discrimination — Members of socially disadvantaged groups often face considerable
p.000017: stigma and discrimination, which can be exacerbated in public health emergencies characterized by fear and distrust.
p.000017: Those responsible for infectious disease outbreak response should ensure that all individuals are treated fairly and
p.000017: equitably regardless of their social status or perceived “worth” to society. They should also take measures to prevent
p.000017: stigmatization and social violence.
p.000017:
p.000017: • Disproportionate burdens of outbreak response measures — Even when public health measures
p.000017: are designed with the best of intentions, they can inadvertently place a disproportionate burden on particular
p.000017: populations. For example, quarantine orders that require individuals to stay
p.000017: in their homes can have devastating consequences for persons who need to leave their homes to obtain basic
p.000017: necessities such as clean water or food. Similarly, social distancing measures such as school closures can place
p.000017: disproportionate burdens on children who depend on going to school to access regular meals, as well as on working
p.000017: parents who may have no one available to provide child care.
p.000017:
p.000017: • Greater need for resources — Accommodating the needs of individuals whose situation makes them particularly
p.000017: vulnerable sometimes requires the use of additional resources.
p.000017: In some cases, additional resources are relatively minimal, such as when an interpreter is hired to make
p.000017: a community engagement forum accessible to members of a linguistic minority group. In other cases, they may be more
...
p.000020: potentially exposed to much higher risks of infection than persons living in the community.
p.000020:
p.000020: • Fulfilling reciprocity-based obligations to those who contribute to infectious disease outbreak response efforts
p.000020: — The ethical principle of reciprocity implies that society should support persons who face a disproportionate burden
p.000020: or risk in protecting the public good. This principle justifies giving priority access to scarce resources to persons
p.000020: who
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020: assume risks to their own health or life to contribute to outbreak response efforts.
p.000020:
p.000020: • Providing supportive and palliative care to persons unable to access life- saving resources — Even when it is not
p.000020: possible to provide life-saving medical
p.000020: 22 resources to all who could benefit from
p.000020: them, efforts should be made to ensure that no patients are abandoned. One way to do this is to ensure that adequate
p.000020: resources are directed to providing supportive and palliative care.
p.000020:
p.000020: The application of allocation principles should take into account the following considerations:
p.000020:
p.000020: • Consistent application — Allocation principles should be applied in
p.000020: a consistent manner, both within individual institutions and, to the extent possible, across geographic areas.
p.000020: Decision-making tools should be developed to ensure that like cases are treated alike, and that no person receives
p.000020: better or worse treatment due to his or her social status or other factors not explicitly recognized in
p.000020: the allocation plan. Efforts should be made to avoid unintended systemic discrimination in the choice or application of
p.000020: allocation methods.
p.000020:
p.000020: • Resolution of disputes — Mechanisms should be developed to resolve disagreements about the application of
p.000020: allocation principles;
p.000020: these mechanisms should be designed to ensure that anyone who believes that allocation principles have been applied
p.000020: inappropriately has access to impartial and accountable review processes, and has the opportunity to be heard.
p.000020: • Avoiding corruption — Corruption in the health-care sector may be exacerbated during infectious disease
p.000020: outbreaks if large numbers of individuals are competing for access
p.000020: to limited resources. Efforts should be made to ensure that persons involved in the application of allocation systems
p.000020: do not accept or give bribes or engage in other corrupt activities.
p.000020:
p.000020: • Separation of responsibilities — To the extent possible, the interpretation of allocation principles should not
p.000020: be entrusted to clinicians who have pre-existing professional relationships that create an ethical obligation to
p.000020: advocate for the
p.000020: interests of specific patients or groups.
p.000020: Instead, decisions should be made by appropriately qualified clinicians
p.000020: who have no personal or professional reasons to advocate for one patient or group over another.
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020: 5. Public health surveillance
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000023: 23
p.000023: Questions addressed:
p.000023:
...
General/Other / Dependent
Searching for indicator dependent:
(return to top)
p.000020: isolated communities in remote rural areas.
p.000020: There is no single correct way to resolve potential tensions between utility
p.000020: and equity; what is important is that decisions are made through an inclusive and transparent process that takes into
p.000020: account local circumstances.
p.000020: • Defining utility on the basis of health-related considerations —
p.000020: In order to apply the ethical principle of utility, it is first necessary to identify the type of outcomes that will be
p.000020: counted as improvements to welfare. In general, the focus should be on the health-related benefits of allocation
p.000020: mechanisms, whether defined in terms 21
p.000020: of the total number of lives saved, the total number of life years saved, or the total number of quality-adjusted life
p.000020: years saved. For this reason,
p.000020: while it might be ethical to prioritize persons who are essential to manage an outbreak, it is not appropriate to
p.000020: prioritize persons based on social value considerations unrelated to carrying out critical services necessary for
p.000020: society.
p.000020:
p.000020: • Paying attention to the needs of vulnerable populations — In applying the ethical principle of equity, special
p.000020: attention should be given to individuals and groups that are the most vulnerable to discrimination, stigmatization, or
p.000020: isolation, as discussed in Guideline 3.
p.000020: Particular consideration must be given to individuals who are confined in institutional settings, where they are highly
p.000020: dependent on others and
p.000020: potentially exposed to much higher risks of infection than persons living in the community.
p.000020:
p.000020: • Fulfilling reciprocity-based obligations to those who contribute to infectious disease outbreak response efforts
p.000020: — The ethical principle of reciprocity implies that society should support persons who face a disproportionate burden
p.000020: or risk in protecting the public good. This principle justifies giving priority access to scarce resources to persons
p.000020: who
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020: assume risks to their own health or life to contribute to outbreak response efforts.
p.000020:
p.000020: • Providing supportive and palliative care to persons unable to access life- saving resources — Even when it is not
p.000020: possible to provide life-saving medical
p.000020: 22 resources to all who could benefit from
p.000020: them, efforts should be made to ensure that no patients are abandoned. One way to do this is to ensure that adequate
p.000020: resources are directed to providing supportive and palliative care.
p.000020:
p.000020: The application of allocation principles should take into account the following considerations:
p.000020:
p.000020: • Consistent application — Allocation principles should be applied in
p.000020: a consistent manner, both within individual institutions and, to the extent possible, across geographic areas.
p.000020: Decision-making tools should be developed to ensure that like cases are treated alike, and that no person receives
...
General/Other / Developing Country
Searching for indicator underdeveloped:
(return to top)
p.000006: Working Group, which was charged with developing ethics guidance on issues and concerns as they arose in
p.000006: the course of the epidemic. It became increasingly apparent that the ethical issues raised by Ebola mirrored concerns
p.000006: that had arisen in other global infectious disease outbreaks, including severe acute respiratory syndrome (SARS),
p.000006: pandemic influenza, and multidrug-resistant tuberculosis. However, while WHO has issued ethical guidance
p.000006: on some of these outbreaks,2,3,4,5 prior guidance has only focused on the specific pathogen in isolation. The purpose
p.000006: of this document is to look beyond issues specific to particular epidemic pathogens and instead focus on the
p.000006: cross-cutting ethical issues that apply to infectious disease outbreaks generally. In addition to setting forth general
p.000006: principles, it examines how these principles can be adapted to different epidemiological and social circumstances.
p.000006:
p.000006: While many of the ethical issues that arise in infectious disease outbreaks are the same as those that arise in other
p.000006: areas of public health, the context of 7
p.000006: an outbreak has particular complexities. Decisions during an outbreak need to be made on an urgent basis, often in the
p.000006: context of scientific uncertainty, social and institutional disruption, and an overall climate of fear and distrust.
p.000006: Invariably,
p.000006: the countries most affected by outbreaks have limited resources, underdeveloped legal and regulatory structures, and
p.000006: health systems that lack the resilience to deal with crisis situations. Countries that experience natural disasters and
p.000006: armed conflicts are particularly at risk, as these circumstances simultaneously increase the risk of infectious disease
p.000006: outbreaks while
p.000006: decreasing needed resources and access to health care. Moreover, infectious disease outbreaks can generate or
p.000006: exacerbate social crises that can weaken already fragile health systems. Within such contexts, it
p.000006: is not possible to satisfy all urgent needs simultaneously, forcing decision-makers to weigh and prioritize potentially
p.000006: competing ethical values. Time pressures and resource constraints may force action without
p.000006: the thorough deliberation, inclusiveness and transparency that a robust ethical decision-making process demands.
p.000006:
p.000006: This guidance document on ethical issues that arise specifically in the context of infectious disease outbreaks aims to
p.000006: complement existing guidance on ethics in public health. It should therefore be read in conjunction with more general
p.000006: guidance on issues such as public health surveillance,
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006: research with human participants, and addressing the needs of vulnerable populations.
p.000006:
p.000006: Setting up decision-making systems and procedures in advance is the best way to ensure that ethically appropriate
p.000006: decisions will be made if an outbreak
...
General/Other / Impaired Autonomy
Searching for indicator autonomy:
(return to top)
p.000006: heard), transparency (providing clear and accurate information about the basis for decisions and the process by which
p.000006: they are made), inclusiveness/community engagement (ensuring all relevant stakeholders are able to participate in
p.000006: decisions), accountability (allocating and enforcing responsibility
p.000006: for decisions), and oversight (ensuring appropriate mechanisms for monitoring and review).
p.000006:
p.000006: Beneficence — Beneficence refers to acts that are done for the benefit of others, such as efforts to relieve
p.000006: individuals’ pain and suffering. In the public health context, the principle of beneficence underlies society’s
p.000006: obligation to meet the basic needs of individuals and communities, particularly humanitarian needs such as nourishment,
p.000006: shelter, good health, and security.
p.000006:
p.000006: Utility — The principle of utility states that actions are right insofar as they promote the well-being of individuals
p.000006: or communities. Efforts to maximize utility require consideration of proportionality (balancing the potential benefits
p.000006: of an activity against any risks of harm) and
p.000006: efficiency (achieving the greatest benefits at the lowest possible cost).
p.000006:
p.000006: Respect for persons — The term “respect for persons” refers to treating individuals in ways that are fitting to and
p.000006: informed by a recognition of our common humanity, dignity and inherent rights. A central
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006: aspect of respect for persons is respect for autonomy, which requires letting individuals make their own choices based
p.000006: on their values and preferences. Informed consent, a process in which a competent individual authorizes a course of
p.000006: action based on sufficient relevant information, without coercion or undue inducement, is one
p.000006: way to operationalize this concept. Where individuals lack decision-making capacity, it may be necessary for others to
p.000006: be charged with protecting their interests. Respect for persons also includes paying attention to values such as
p.000006: privacy and confidentiality, as well as social, religious and cultural beliefs and important relationships, including
p.000006: family bonds. Finally, respect for persons requires transparency and truth-telling in the context of carrying out
p.000006: public health and research activities.
p.000006:
p.000006: Liberty — Liberty includes a broad range of social, religious and political freedoms, such as freedom of movement,
p.000006: freedom of peaceful assembly, and freedom of speech. Many aspects of liberty are protected as fundamental human rights.
p.000006:
p.000006: Reciprocity — Reciprocity consists of making a “fitting and proportional return” for contributions that people have
p.000006: made.6 Policies that encourage reciprocity can
...
p.000035: an emergency basis outside clinical trials, provided:
p.000035:
p.000035: 1) no proven effective treatment exists;
p.000035:
p.000035: 2) it is not possible to initiate clinical studies immediately;
p.000035:
p.000035: 3) data providing preliminary support of the intervention’s efficacy and safety are available, at least from laboratory
p.000035: or animal studies, and use of the intervention outside clinical trials has been suggested by an appropriately qualified
p.000035: scientific advisory committee on the basis of a favourable risk–benefit analysis;
p.000035:
p.000035: 4) the relevant country authorities, as well as an appropriately qualified ethics committee, have approved such use;
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: 5) adequate resources are available to ensure that risks can be minimized;
p.000035:
p.000035: 6) the patient’s informed consent is obtained; and
p.000035:
p.000035: 7) the emergency use of the intervention is monitored and the results are documented
p.000035: 36 and shared in a timely manner with the
p.000035: wider medical and scientific community.
p.000035:
p.000035: As explained in prior WHO guidance, the use of experimental interventions under these circumstances is referred to as
p.000035: “monitored emergency use of unregistered and experimental interventions” (MEURI).18
p.000035:
p.000035: Ethical basis for MEURI — MEURI is justified by the ethical principle of respect for patient autonomy — i.e. the right
p.000035: of individuals to make their own risk–benefit assessments in light of their personal values, goals and health
p.000035: conditions.
p.000035: It is also supported by the principle of beneficence — providing patients with available and reasonable opportunities
p.000035: to improve their condition, including measures that can plausibly mitigate extreme suffering and enhance survival.
p.000035:
p.000035: Scientific basis for MEURI — Countries should not authorize MEURI unless
p.000035: it has first been recommended by an appropriately qualified scientific advisory committee especially established for
p.000035: this purpose. This committee should base its recommendations on a rigorous review of all data available from
p.000035: laboratory, animal and human studies of the intervention to assess the risk–benefit of MEURI in the context of the
p.000035: risks for patients who do not receive MEURI.
p.000035:
p.000035: MEURI should be guided by the same ethical principles that guide use of
p.000035: unproven compounds in clinical trials, including the following:
p.000035:
p.000035: • Importance of ethical oversight — MEURI is intended to be an exceptional measure for situations in which
p.000035: initiating a clinical trial is not feasible, not as a means to circumvent ethical oversight of the use of unproven
p.000035: interventions. Thus, mechanisms should be established to ensure that MEURI is subject to ethical oversight.
p.000035:
p.000035: • Effective resource allocation — MEURI should not preclude or delay the initiation of clinical research into
p.000035: experimental products. In addition, it should not divert attention or resources from the implementation of effective
p.000035: clinical care and/or public health measures that may be crucial to control an outbreak.
...
General/Other / Public Emergency
Searching for indicator emergency:
(return to top)
p.000001: distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and
p.000001: use of the material lies with the reader. In no event shall the World Health Organization be liable for damages arising
p.000001: from its use.
p.000001:
p.000001: Printed in Spain
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001: Table of Contents
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001: Foreword ............................................................................................................ 3
p.000001: 1
p.000001: Acknowledgements 4
p.000001: Introduction 7
p.000001: Guidelines 12
p.000001: 1. Obligations of governments and the international community 13
p.000001: 2. Involving the local community
p.000015: 15
p.000015: 3. Situations of particular vulnerability
p.000017: 17
p.000017: 4. Allocating scarce resources
p.000020: 20
p.000020: 5. Public health surveillance
p.000023: 23
p.000023: 6. Restrictions on freedom of movement 25
p.000023: 7. Obligations related to medical interventions for the diagnosis, treatment,
p.000023: and prevention of infectious disease
p.000028: 28
p.000028: 8. Research during infectious disease outbreaks 30
p.000028: 9. Emergency use of unproven interventions outside of research 35
p.000028: 10. Rapid data sharing
p.000038: 38
p.000038: 11. Long-term storage of biological specimens collected during infectious
p.000038: disease outbreaks
p.000039: 39
p.000039: 12. Addressing sex- and gender-based differences 41
p.000039: 13. Frontline response workers’ rights and obligations 43
p.000039: 14. Ethical issues in deploying foreign humanitarian aid workers 47
p.000039: References 50
p.000039: Annex 1. Ethics guidance documents consulted in developing Guidance for managing ethical issues in infectious disease
p.000039: outbreaks 52
p.000039: Annex 2. Participants at meetings to formulate Guidance for managing ethical issues in infectious disease outbreaks
p.000055: 55
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055: Foreword
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055: Infectious disease outbreaks are periods of great uncertainty. Events unfold, resources and capacities that are often
p.000055: limited
p.000055: are stretched yet further, and decisions for a public health response must be made quickly, even though the evidence
p.000055: for decision-making may be scant. In such a situation, public health officials, policy-makers, funders, researchers,
p.000055: field epidemiologists, first responders, national
p.000055: ethics boards, health-care workers, and public health practitioners need a moral compass
p.000055: to guide them in their decision-making. Bioethics puts people at the heart of the problem, emphasizes the principles
p.000055: that should guide health systems, and provides the moral rationale for making choices, particularly in a crisis.
p.000055:
p.000055: I therefore welcome the development of the Guidance for managing ethical issues in infectious disease outbreaks, which
p.000055: will be key to embedding ethics within the integrated global alert and response system for epidemics and other public
p.000055: health emergencies. The publication will also
p.000055: support and strengthen the implementation and uptake of policies and programmes in this context.
p.000055:
p.000055: Research is an integral part of the public health response – not only to learn about the current epidemic but also to
p.000055: build an evidence base for future epidemics. Research during
p.000055: an epidemic ranges from epidemiological and socio-behavioral to clinical trials and toxicity studies, all of which are
p.000055: crucial. I am pleased
p.000055: to see that the guidance touches upon this 3
p.000055: important area with advice, not only on research and emergency use of unproven interventions, but also on rapid data
p.000055: sharing see: http://www.who.int/ihr/procedures/ SPG_data_sharing.pdf?ua=1.
p.000055:
p.000055: The importance given to communication during an infectious disease outbreak can make or break public health efforts,
p.000055: and WHO takes this very seriously. This
p.000055: document outlines the ethical principles that should guide communication planning and implementation at every level
p.000055: from frontline workers to policy-makers.
p.000055:
p.000055: The guidance represents the work of an international group of stakeholders and experts, including public health
p.000055: practitioners in charge of response management at
p.000055: the local, national and international level; nongovernmental organization representatives; directors of funding
p.000055: agencies; chairs of ethics committees; heads of research laboratories; representatives
p.000055: of national regulatory agencies; patient representatives; and experts in public health ethics, bioethics, human rights,
p.000055: anthropology, and epidemiology. I am grateful for their support and input.
p.000055:
p.000055: Dr Marie‑Paule Kieny Assistant Director-General Health Systems and Innovation
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055: Acknowledgements
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055: 4 The Guidance document was produced under the overall direction of Abha Saxena, Coordinator of the Global
p.000055: Health Ethics team, supported by Andreas Reis and Maria Magdalena Guraiib.
p.000055:
p.000055: WHO is grateful to Carl Coleman for his role as lead writer, his analysis and synthesis of existing guidance documents,
...
p.000055:
p.000055: A special thanks to Vânia de la Fuente Núñez, who was responsible for managing the Ethics Working Group; and Michele
p.000055: Loi who coordinated the whole process.
p.000055: Former interns of the Global Health Ethics team Patrick Hummel (University of
p.000055: St Andrews, United Kingdom) and Corinna Klingler (University of Munich, Germany) deserve a special mention for
p.000055: undertaking a scoping review in relation to pregnancy
p.000055: and infectious diseases, which informed the development of guidance in this area.
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055: The guidance document would not have been possible without the generous support of the Wellcome Trust. The kind support
p.000055: of the following partners is also very gratefully acknowledged: 3U Global Health Partnership; Canadian Institutes of
p.000055: Health Research; Dublin City University; European Union Cooperation in Science and Technology; Monash University;
p.000055: University of Miami Miller School of Medicine Institute for Bioethics and Health Policy.
p.000055:
p.000006: 6
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006: Introduction
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006: This guidance grew out of concern at the World Health Organization (WHO) about ethical issues raised by the Ebola
p.000006: outbreak in West Africa in 2014–2016. The WHO Global Health Ethics Unit’s response to Ebola began in August 2014,
p.000006: immediately after it was declared a “public health emergency of international concern” pursuant to the International
p.000006: Health Regulations (2005) (IHR).1 That declaration led to the formation of an Ethics Panel, and later an Ethics
p.000006: Working Group, which was charged with developing ethics guidance on issues and concerns as they arose in
p.000006: the course of the epidemic. It became increasingly apparent that the ethical issues raised by Ebola mirrored concerns
p.000006: that had arisen in other global infectious disease outbreaks, including severe acute respiratory syndrome (SARS),
p.000006: pandemic influenza, and multidrug-resistant tuberculosis. However, while WHO has issued ethical guidance
p.000006: on some of these outbreaks,2,3,4,5 prior guidance has only focused on the specific pathogen in isolation. The purpose
p.000006: of this document is to look beyond issues specific to particular epidemic pathogens and instead focus on the
p.000006: cross-cutting ethical issues that apply to infectious disease outbreaks generally. In addition to setting forth general
p.000006: principles, it examines how these principles can be adapted to different epidemiological and social circumstances.
p.000006:
p.000006: While many of the ethical issues that arise in infectious disease outbreaks are the same as those that arise in other
p.000006: areas of public health, the context of 7
p.000006: an outbreak has particular complexities. Decisions during an outbreak need to be made on an urgent basis, often in the
p.000006: context of scientific uncertainty, social and institutional disruption, and an overall climate of fear and distrust.
p.000006: Invariably,
...
p.000006: of the benefits and burdens of epidemic response efforts.
p.000006:
p.000006: Solidarity — Solidarity is a social relation in which a group, community, nation
p.000006: or, potentially, global community stands together.7 The principle of solidarity justifies collective action in the
p.000006: face of common threats. It also supports efforts to overcome inequalities that undermine the welfare
p.000006: of minorities and groups that suffer from discrimination.
p.000006:
p.000006:
p.000006: Practical applications
p.000006:
p.000006: The application of ethical principles should be informed by evidence as far as it is
p.000006: available. For example, in determining 9
p.000006: whether a particular action contributes to utility, decision-makers should be guided by any available scientific
p.000006: evidence about the action’s expected benefits and harms.
p.000006: The more intrusive the proposed action, the greater the need for robust evidence that what is being proposed is likely
p.000006: to achieve its desired aim. When specific evidence is not available, decisions should be based
p.000006: on reasoned, substantive arguments and informed by evidence from analogous situations, to the extent possible.
p.000006:
p.000006: In balancing competing principles during infectious disease outbreaks, countries must respect their obligations under
p.000006: international human rights agreements. The Siracusa Principles on the Limitation and Derogation Provisions in the
p.000006: International Covenant on Civil and Political Rights
p.000006: (the “Siracusa Principles”)8 are a widely accepted framework for evaluating
p.000006: the appropriateness of limiting certain fundamental human rights in emergency situations. The Siracusa Principles
p.000006: provide that any restrictions on human rights must be carried out in accordance with the law and in pursuit of a
p.000006: legitimate objective of general interest. In addition, such restrictions must be strictly necessary and there must
p.000006: be no other, less intrusive means available to reach the same objective. Finally, any restrictions must be based on
p.000006: scientific evidence and not imposed in an arbitrary, unreasonable, or discriminatory manner.
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006:
p.000006: For both pragmatic and ethical reasons, maintaining the population’s trust in epidemic response efforts is of
p.000006: fundamental importance. This is possible only if
p.000006: policy-makers and response workers act in a trustworthy manner by applying
p.000006: procedural principles fairly and consistently, being open to review based on new
p.000006: 10 relevant information, and acting with the
p.000006: genuine input of affected communities.
p.000006: In addition, a synchronized approach is indispensable to the success of any
p.000006: response effort. All members of the global community need to act in solidarity, since all countries share a common
p.000006: vulnerability to the threat of infectious disease.
p.000006:
p.000006:
p.000006: How the Guidance was developed
p.000006: Many individuals have helped shape this guidance document, directly or indirectly, starting with the Ethics Panel that
p.000006: was convened by the Director-General on
...
p.000013: Governments can play a critical role in preventing and responding to infectious disease outbreaks by improving social
p.000013: and environmental conditions, ensuring well-functioning and accessible health systems, and engaging in public health
p.000013: surveillance and prevention activities.
p.000013: Together, these actions can substantially reduce the spread of diseases with epidemic potential. In addition, they help
p.000013: assure that an effective public health response will be possible if an epidemic occurs. Governments have an ethical
p.000013: obligation to ensure the long-term capacity of the systems necessary to carry out effective epidemic prevention and
p.000013: response efforts.
p.000013:
p.000013: Countries have obligations not only to persons within their own borders but also to the broader international
p.000013: community. As the United Nations Committee on
p.000013:
p.000013: Economic, Social and Cultural Rights has recognized, “given that some diseases are easily transmissible beyond the
p.000013: frontiers of a State, the international community has a collective responsibility to address this problem. The
p.000013: economically developed States Parties have a special responsibility
p.000013: and interest to assist the poorer developing States in this regard.”9
p.000013:
p.000013: These obligations reflect the practical reality that infectious disease outbreaks do not respect national borders, and
p.000013: that an outbreak in one country can put the rest of the world at risk.
p.000013:
p.000013: Countries’ obligations to consider the needs of the international community do not arise solely in times of emergency.
p.000013: Instead, they require ongoing attention to ameliorate the social determinants of poor
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013: health that contribute to infectious disease outbreaks, including poverty, limited access to education, and inadequate
p.000013: systems of water and sanitation.
p.000013:
p.000013: The following are key elements of the obligations of governments and the international community:
p.000014: 14
p.000014: • Ensuring the sufficiency of national public health laws — As discussed later in this document, certain public
p.000014: health interventions that might be necessary during an infectious disease outbreak (e.g. restrictions on freedom of
p.000014: movement) depend on having a clear legal basis for government action, as well as a system in place to provide oversight
p.000014: and review. All countries should review their public health laws to ensure that they give the government sufficient
p.000014: authority to respond effectively to an epidemic while also providing individuals with appropriate human rights
p.000014: protections.
p.000014:
p.000014: • Participating in global surveillance and preparedness efforts —
p.000014: All countries must carry out their responsibilities under the IHR to participate in global surveillance efforts in a
p.000014: truthful and transparent manner. This includes providing prompt notification of events that may constitute a public
p.000014: health emergency of international concern, regardless
p.000014: of any negative consequences that may be associated with notification, such as a possible reduction in trade or
p.000014: tourism. The obligation to provide
p.000014: prompt notification to the international community stems not only from the text of the IHR but also from the ethical
p.000014: principles of solidarity and reciprocity. In addition, countries should develop
p.000014: preparedness plans for infectious disease outbreaks and other potential disasters and provide guidance to relevant
p.000014: health-care facilities to implement the plans.
p.000014:
p.000014: • Providing financial, technical, and scientific assistance — Countries that have the resources to provide foreign
p.000014: assistance should support global epidemic preparedness and response efforts, including research and development on
p.000014: diagnostics, therapeutics, and vaccines for
p.000014: pathogens with epidemic potential. This support should supplement ongoing efforts to build local public health
p.000014: capacities and strengthen primary health care systems in countries at greatest risk of harm from infectious disease
p.000014: outbreaks.
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014: Avian Influenza in Indonesia
p.000014: Source: Gary Hampton, WHO
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014: 2. Involving the local community
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000015: 15
p.000015: Questions addressed:
p.000015:
...
p.000020: do not accept or give bribes or engage in other corrupt activities.
p.000020:
p.000020: • Separation of responsibilities — To the extent possible, the interpretation of allocation principles should not
p.000020: be entrusted to clinicians who have pre-existing professional relationships that create an ethical obligation to
p.000020: advocate for the
p.000020: interests of specific patients or groups.
p.000020: Instead, decisions should be made by appropriately qualified clinicians
p.000020: who have no personal or professional reasons to advocate for one patient or group over another.
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000020: 5. Public health surveillance
p.000020:
p.000020:
p.000020:
p.000020:
p.000020:
p.000023: 23
p.000023: Questions addressed:
p.000023:
p.000023: • What role does surveillance play in infectious disease outbreak response efforts?
p.000023: • Should surveillance activities be subject to ethical review?
p.000023: • What obligations do entities conducting surveillance activities have to protect the confidentiality of
p.000023: information collected?
p.000023: • Are there any circumstances under which individuals should be asked for consent to, or given the opportunity to
p.000023: opt out of, surveillance activities?
p.000023: • What obligations do those conducting surveillance activities have to disclose information they collect to the
p.000023: affected individuals and communities?
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023: Systematic observation and data collection are essential components of emergency response measures, both to guide the
p.000023: management of the current outbreak and to help prevent and respond to outbreaks in the future. Even if these activities
p.000023: are not characterized as research for regulatory purposes, an ethical analysis should
p.000023: be undertaken to ensure that personal information is protected from physical, legal, psychological, and other harm.
p.000023: Countries should consider organizing systems for ethical oversight of public health activities, commensurate with the
p.000023: activity objectives, methods, risks and benefits, as well as the extent to which the activity involves individuals or
p.000023: groups whose situation may make them vulnerable.
p.000023: Regardless of whether such systems are adopted, ethical analysis of public
p.000023: health activities should be consistent with accepted norms of public health ethics and conducted by individuals or
p.000023: entities that can be held accountable for their decisions.
p.000023:
p.000023: Ensuring high-quality, ethically appropriate surveillance is complicated by at least
p.000023: two factors. First, the law surrounding surveillance across jurisdictions may be unnecessarily complex or inconsistent.
p.000023: Second, surveillance activities will occur across jurisdictions with varying levels of resources, thus placing strains
p.000023: on the quality and reliability of the data. These
p.000023: issues are likely to be exacerbated during an infectious disease outbreak, creating an urgent need for careful planning
p.000023: and international collaboration. Specific issues that should be addressed include the following:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
...
p.000025: conditions of confinement should consider the heightened needs of vulnerable populations, as discussed
p.000025: in Guideline 3.)
p.000025:
p.000025: • Addressing financial and social consequences — Even short-term restrictions on freedom of movement can have
p.000025: significant — and possibly devastating —financial and social consequences for individuals, their families, and their
p.000025: communities. Countries should provide assistance to households that suffer financial
p.000025: losses as a result of inability to conduct business, loss of a job, damage to crops, or other consequences of
p.000025: restrictions on freedom of movement. In some cases, this support may need to continue
p.000025: for a period following the end of confinement. In addition, efforts should be made to support the social and
p.000025: professional reintegration of individuals for whom confinement is no longer necessary, including measures to reduce
p.000025: stigmatization and discrimination.
p.000025:
p.000025: • Due process protections — Mechanisms should be in place to allow individuals whose liberty has been restricted to
p.000025: challenge the appropriateness of those restrictions, the way they are enforced, and the conditions under which the
p.000025: restrictions are carried out. If it is not feasible to provide full due process protection before the restrictions are
p.000025: implemented in an emergency scenario, mechanisms for review and appeal should be made
p.000025: available without excessive delay. All persons involved in decisions to restrict individuals’ freedom of movement
p.000025: should be accountable for any abuses of authority.
p.000025:
p.000025: • Equitable application — Restrictions on freedom of movement should be
p.000025: applied in the same manner to all 27
p.000025: persons posing a comparable public health risk. Thus, individuals should not be subject to greater or lesser
p.000025: restrictions for reasons unrelated to the
p.000025: risks they may pose to others, including membership in any disfavoured or favoured social group or class (for example,
p.000025: groups defined by gender, ethnicity, or religion). In addition, policy- makers should seek to ensure that restrictions
p.000025: are not applied in a manner that imposes a disproportionate burden on vulnerable segments of society.
p.000025:
p.000025: • Communication and transparency —
p.000025: Policy-makers and public health officials should engage communities in a dialogue about any restrictions on freedom of
p.000025: movement and solicit community members’ views on how restrictions can be carried out with the least possible burden.
p.000025: They should also provide regular updates on the implementation of such measures,
p.000025: both to the public at large and to those whose movement has been restricted. Communication strategies should be
...
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030: benefits; that participants are selected fairly and participate voluntarily (in most situations following an explicit
p.000030: process of informed consent); that participants’ rights and well-being are sufficiently protected; and that studies
p.000030: undergo an
p.000030: adequate process of independent review. These internationally accepted norms and standards stem from the basic ethical
p.000030: principles of beneficence, respect for persons, and justice. They apply to all fields of research involving human
p.000030: beings, whether biomedical, epidemiological, public health or social science studies, and are explained in detail in
p.000030: numerous
p.000030: international ethics guidelines,11,12,13,14,15 all of which apply with full force in outbreak situations. All actors
p.000030: in research, including researchers, research institutions, research ethics committees, national regulators,
p.000030: international organizations, and commercial sponsors, have an obligation to ensure that these principles are upheld in
p.000030: outbreak situations. Doing this requires attention to the following considerations:
p.000030:
p.000030: • Role of local research institutions — When local researchers are available, they should be involved in the
p.000030: design, implementation, analysis, reporting
p.000030: and publication of outbreak-related research. Local researchers can help ensure that studies adequately respond to
p.000030: local realities and needs and that they can be implemented effectively without jeopardizing the emergency response.
p.000030: Involving local researchers in international research collaborations also contributes to building long-
p.000030: term research capacity in affected countries and promoting the value of international equity in science.
p.000030:
p.000030: • Addressing limitations in local research ethics review and scientific
p.000030: capacity — Countries’ capacity to engage in local research ethics review may be limited during outbreaks because of
p.000030: time constraints, lack of expertise, diversion of resources to outbreak response efforts, or pressure from public
p.000030: health authorities that undermines reviewers’ independence.
p.000030: International and nongovernmental 31
p.000030: organizations should assist local research ethics committees to overcome these challenges by, for example, sponsoring
p.000030: collaborative reviews involving representatives from multiple countries supplemented by external experts.
p.000030:
p.000030: • Providing ethics review in time- sensitive circumstances — The need for immediate action to contain an infectious
p.000030: disease outbreak may make it impossible to adhere to the usual timeframes for research ethics review. National research
p.000030: governance systems and the international community should anticipate this problem by developing mechanisms to ensure
p.000030: accelerated ethics review in emergency situations, without undermining any of the substantive protections that ethics
p.000030: review is designed to provide. One option is to
p.000030: authorize the advance review of generic protocols for conducting research in outbreak conditions, which can then
p.000030: be rapidly adapted and reviewed for particular contexts. Early discussion and collaboration with local research ethics
p.000030: committees can help ensure the project is viable and can facilitate local committees’ effective and efficient
p.000030: consideration of final protocols when an outbreak actually occurs.
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030: • Integrating research into broader outbreak response efforts — National authorities and international
p.000030: organizations should seek to coordinate research projects in order to set priorities that are consistent with broader
p.000030: outbreak response efforts, and to avoid unnecessary duplication of research
p.000030: 32 effort or competition among different
p.000030: sites. Researchers have an obligation to share information collected as part of a study if it is important for the
p.000030: ongoing response efforts, such as information about hidden cases and transmission chains or resistance to response
p.000030: measures. Persons who share the information and those who receive it should protect the confidentiality of personal
p.000030: information to the maximum
p.000030: extent possible. As part of the informed consent process, researchers should inform potential participants about
...
p.000030: processes compatible with international research ethics guidelines should be developed
p.000030: in consultation with local communities and implemented by locally recruited personnel. In addition, researchers should
p.000030: be well informed about the medical, psychological and social support systems available locally so that they can guide
p.000030: participants in need towards these services. In some situations, it may be necessary to develop rapid mechanisms for
p.000030: appointing proxy decision-makers, such as during outbreaks of diseases that affect cognitive abilities, or when
p.000030: an outbreak leaves a large number of children as orphans.
p.000030:
p.000030: • Gaining and maintaining trust — Failure to build and maintain community trust during the process of research
p.000030: design and implementation, or when disclosing preliminary results, will not only impede study recruitment and
p.000030: completion but may also undermine
p.000030: the uptake of any interventions proven to be efficacious. Engaging with affected communities before, during, and after
p.000030: a study is essential to build and maintain trust. In environments in which the public’s trust in government is fragile,
p.000030: researchers should remain as independent as possible from official public health activities. If government workers are
p.000030: themselves involved in
p.000030: conducting research, they should inform participants of this fact. Individuals who observe unethical practices carried
p.000030: out in the name of public health or emergency response efforts should promptly report them to ethics committees or
p.000030: other independent bodies.
p.000030: • Selecting an appropriate research 33
p.000030: methodology — Exposing research participants to risk is ethically unacceptable if the study is not designed in a manner
p.000030: capable of providing valid results. It is therefore imperative that all research be designed and conducted in a
p.000030: methodologically rigorous manner. In clinical trials,
p.000030: the appropriateness of features such as randomization, placebo controls, blinding or masking should be determined on a
p.000030: case-by-case basis, with attention to both the scientific
p.000030: validity of the data and the acceptability of the methodology to the community from which participants will be drawn.
p.000030: In studies relying on qualitative methods, the potential benefits of using methodologies such as focus groups (in which
p.000030: individual confidentiality cannot be guaranteed) or of interviewing traumatized victims should be balanced against the
p.000030: risks and burdens to the individuals involved.
p.000030:
p.000030: • Rapid data sharing: As WHO has previously recognized, every researcher who engages in generation of information
p.000030: related to a public health emergency or acute public health event with the potential to progress
p.000030: to an emergency has the fundamental moral obligation to share preliminary results once they are adequately quality
p.000030: controlled for release.16 Such information should be shared with
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030: public health officials, the study participants and affected population, and groups involved in wider international
p.000030: response efforts, without waiting for publication in scientific journals. Journals should facilitate
p.000030: this process by allowing researchers to rapidly disseminate information
p.000030: 34 with immediate implications for public
p.000030: health without losing the opportunity for subsequent consideration for publication in a journal.17
p.000030:
p.000030: • Assuring equitable access to the benefits of research — As
p.000030: recognized in existing international ethics guidelines, individuals and communities that participate in research
p.000030: should, where relevant, have access to any benefits that result from their participation. Research sponsors and host
p.000030: countries should agree in advance on mechanisms to ensure that any interventions found to be safe and effective in
p.000030: research will be made available to the local population without undue delay, including, when feasible, on a
p.000030: compassionate use basis before regulatory approval is finalized.
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:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030: Staff preparing to go into the Isolation Unit at Persahabatan Hospital, East Jakarta.
p.000030: Source: Jonathan Perugia
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030: 9. Emergency use of unproven interventions outside of research
p.000030:
p.000030:
p.000030:
p.000035: 35
p.000035: Questions addressed:
p.000035:
p.000035: • Under what circumstances is it ethically appropriate to offer patients unproven interventions outside clinical
p.000035: trials during infectious disease outbreaks?
p.000035: • How should such interventions be identified?
p.000035: • What type of ethical oversight should be conducted when unproven interventions are offered outside clinical
p.000035: trials during infectious disease outbreaks?
p.000035: • If such interventions are provided, what should individuals be told about them?
p.000035: • What obligations do persons administering unproven interventions outside clinical trials have to communicate with
p.000035: the community?
p.000035: • What obligations do persons administering unproven interventions outside clinical trials have to share the
p.000035: results?
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: There are many pathogens for which no proven effective intervention exists. For some pathogens there may be
p.000035: interventions that have shown promising safety and efficacy in the laboratory and in relevant animal models but that
p.000035: have not yet
p.000035: been evaluated for safety and efficacy in humans. Under normal circumstances, such interventions undergo testing in
p.000035: clinical trials that are capable of generating reliable evidence about safety and efficacy. However, in the context of
p.000035: an outbreak characterized by high mortality, it can be ethically appropriate to offer individual patients experimental
p.000035: interventions on
p.000035: an emergency basis outside clinical trials, provided:
p.000035:
p.000035: 1) no proven effective treatment exists;
p.000035:
p.000035: 2) it is not possible to initiate clinical studies immediately;
p.000035:
p.000035: 3) data providing preliminary support of the intervention’s efficacy and safety are available, at least from laboratory
p.000035: or animal studies, and use of the intervention outside clinical trials has been suggested by an appropriately qualified
p.000035: scientific advisory committee on the basis of a favourable risk–benefit analysis;
p.000035:
p.000035: 4) the relevant country authorities, as well as an appropriately qualified ethics committee, have approved such use;
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: 5) adequate resources are available to ensure that risks can be minimized;
p.000035:
p.000035: 6) the patient’s informed consent is obtained; and
p.000035:
p.000035: 7) the emergency use of the intervention is monitored and the results are documented
p.000035: 36 and shared in a timely manner with the
p.000035: wider medical and scientific community.
p.000035:
p.000035: As explained in prior WHO guidance, the use of experimental interventions under these circumstances is referred to as
p.000035: “monitored emergency use of unregistered and experimental interventions” (MEURI).18
p.000035:
p.000035: Ethical basis for MEURI — MEURI is justified by the ethical principle of respect for patient autonomy — i.e. the right
p.000035: of individuals to make their own risk–benefit assessments in light of their personal values, goals and health
p.000035: conditions.
p.000035: It is also supported by the principle of beneficence — providing patients with available and reasonable opportunities
p.000035: to improve their condition, including measures that can plausibly mitigate extreme suffering and enhance survival.
p.000035:
p.000035: Scientific basis for MEURI — Countries should not authorize MEURI unless
p.000035: it has first been recommended by an appropriately qualified scientific advisory committee especially established for
p.000035: this purpose. This committee should base its recommendations on a rigorous review of all data available from
p.000035: laboratory, animal and human studies of the intervention to assess the risk–benefit of MEURI in the context of the
p.000035: risks for patients who do not receive MEURI.
p.000035:
p.000035: MEURI should be guided by the same ethical principles that guide use of
p.000035: unproven compounds in clinical trials, including the following:
p.000035:
p.000035: • Importance of ethical oversight — MEURI is intended to be an exceptional measure for situations in which
p.000035: initiating a clinical trial is not feasible, not as a means to circumvent ethical oversight of the use of unproven
p.000035: interventions. Thus, mechanisms should be established to ensure that MEURI is subject to ethical oversight.
p.000035:
p.000035: • Effective resource allocation — MEURI should not preclude or delay the initiation of clinical research into
p.000035: experimental products. In addition, it should not divert attention or resources from the implementation of effective
p.000035: clinical care and/or public health measures that may be crucial to control an outbreak.
p.000035:
p.000035: • Minimizing risk — Administering unproven interventions necessarily involves risks, some of which will not be
p.000035: fully understood until further testing is conducted. However, any known risks associated with an intervention should be
p.000035: minimized to the extent reasonably possible (e.g. administration under hygienic conditions; using
p.000035: the same safety precautions that would be used during a clinical trial, with close monitoring and access to emergency
p.000035: medication and equipment; and providing necessary supportive treatment). Only investigational products manufactured
p.000035: according to good manufacturing practices should be used for MEURI.
p.000035:
p.000035: • Collection and sharing of meaningful data — Physicians overseeing MEURI have the same moral
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: obligation to collect all scientifically relevant data on the safety and efficacy of the intervention as researchers
p.000035: overseeing a clinical trial. Knowledge generated through MEURI should be aggregated across patients if possible and
p.000035: shared transparently, completely and rapidly with the MEURI scientific advisory committee, public health authorities,
p.000035: physicians and researchers in the country, and the international medical and scientific community.
p.000035: Information should be described accurately, without overstating benefits or understating uncertainties or risks.
p.000035:
p.000035: • Importance of informed consent — Individuals who are offered MEURI should be made aware that the intervention
p.000035: might not benefit
p.000035: them and might even harm them. The process of obtaining informed consent to MEURI should be carried out in a
p.000035: culturally and linguistically sensitive manner, with an emphasis on the content and understandability of the
p.000035: information conveyed and the voluntariness of the patient’s decision.
p.000035: The ultimate choice of whether to receive the unproven intervention must rest with the patient, if the patient is
...
p.000035: MEURI must be sensitive to local norms and practices. One way to try to ensure such sensitivity is to use rapid
p.000035: “community engagement
p.000035: teams” to promote dialogue about the potential benefits and risks of receiving
p.000035: interventions that have not yet been tested in clinical trials.
p.000035:
p.000035: • Fair distribution in the face of scarcity — Compounds qualifying for MEURI may not be available in large
p.000035: quantities. In this situation, choices will have to be made about who receives
p.000035: each intervention. Countries should 37
p.000035: establish mechanisms for making these allocation decisions, taking into account the assessment of the MEURI Scientific
p.000035: Advisory Committee and the principles discussed in Guideline 4.
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: 10. Rapid data sharing
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000038: 38
p.000038: Questions addressed:
p.000038:
p.000038: • Why is rapid data sharing essential during an infectious disease outbreak?
p.000038: • What are the key ethical issues related to rapid data sharing?
p.000038:
p.000038:
p.000038:
p.000038:
p.000038:
p.000038: The collection and sharing of data are essential parts of ordinary public health practice. During an infectious disease
p.000038: outbreak, data sharing takes on increased urgency because of the uncertain and ever-changing scientific information;
p.000038: the compromised response capacity of local health systems; and the heightened role of cross-border collaboration. For
p.000038: these reasons, “rapid data sharing is critical during an unfolding health emergency.”19
p.000038: The ethically appropriate and rapid sharing of data can help identify etiological factors, predict disease spread,
p.000038: evaluate existing and novel treatment, symptomatic care and preventive measures, and guide the deployment of limited
p.000038: resources.
p.000038:
p.000038: Activities that generate data include public health surveillance, clinical research studies, individual patient
p.000038: encounters (including MEURI), and epidemiological, qualitative, and environmental studies. All individuals and entities
p.000038: involved in these efforts should cooperate by sharing relevant and accurate data in a timely manner. As discussed in
p.000038: Guideline 8, efforts should be made to ensure that rapid sharing of information
p.000038:
p.000038: with immediate implications for public health does not preclude subsequent publication in a scientific journal.
p.000038:
p.000038: As part of ongoing pre-epidemic preparedness efforts, countries should review their laws, policies, and practices
p.000038: regarding data sharing to ensure that they adequately protect the confidentiality of personal information and address
p.000038: other relevant ethical questions like managing incidental findings, and dealing with disputes over the ownership or
p.000038: control of information.
p.000038:
p.000038:
p.000038:
p.000038:
p.000038:
p.000038:
p.000038:
p.000038:
p.000038: 11. Long-term storage of biological specimens collected during infectious disease outbreaks
p.000038:
p.000038:
p.000039: 39
p.000039: Questions addressed:
p.000039:
p.000039: • What are the benefits and risks associated with the long-term storage of biological specimens collected during
p.000039: infectious disease outbreaks?
p.000039: • What obligations do entities involved in the long-term storage of biological specimens collected during
...
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: Earthquake Haiti 2010
p.000043: Source: Victor Ariscain, PAHO/WHO
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: 14. Ethical issues in deploying foreign humanitarian aid workers
p.000043:
p.000043:
p.000043:
p.000047: 47
p.000047: Questions addressed:
p.000047:
p.000047: • What ethical issues arise in assigning foreign workers for deployment during infectious disease outbreaks?
p.000047: • What obligations do sponsoring organizations have to prepare foreign aid workers adequately for their missions?
p.000047: • What obligations do sponsoring organizations have regarding the conditions of deployment?
p.000047: • What obligations do sponsoring organizations have to coordinate with local officials?
p.000047: • What obligations do foreign aid workers have before, during, and after deployment?
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047: Foreign governments and humanitarian aid organizations that deploy workers in infectious disease outbreaks have ethical
p.000047: obligations to both the workers themselves and the affected communities. These obligations include the following:
p.000047:
p.000047: • Coordination with local officials — Foreign governments and external humanitarian aid organizations should deploy
p.000047: workers following discussion and agreement with local officials about their roles and responsibilities or, if
p.000047: this is not possible, with international organizations like WHO. Organizations working in a particular area should
p.000047: register their presence as a foreign Emergency Medical Team (EMT) with
p.000047: the local government, and have ongoing discussions among themselves and with the local government to clarify and
p.000047: coordinate their roles
p.000047: and responsibilities and address any disparities in standards of practice. Efforts should be coordinated with local
p.000047: authorities and care providers to
p.000047: ensure that the foreign agency does not excessively draw resources away from other essential services.
p.000047:
p.000047: • Fairness in assigning foreign workers for deployment — Foreign aid workers should be deployed only if they are
p.000047: capable of providing necessary services not sufficiently available in the local setting. Assignment of foreign
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047: health workers should take into consideration their relevant skills and knowledge, as well as their linguistic and
p.000047: cultural competencies to meet mission objectives and understand and communicate with affected communities. It is
p.000047: inappropriate to deploy unqualified or unnecessary
p.000047: 48 workers solely to satisfy their personal
p.000047: or professional desire to be helpful (so-called “disaster tourism”).
p.000047:
p.000047: • Clarity about conditions of deployment — Prospective foreign aid workers should be given
p.000047: comprehensive information about the project’s expectations and risks so they can make informed decisions about whether
p.000047: or not they will be able to make appropriate contributions. In addition, foreign aid workers should be clearly
...
p.000050: 2007 (www.cidrap.umn.edu/sites/default/files/public/
p.000050: php/196/196_guidance.pdf).
p.000053: 53
p.000053:
p.000053: Altevogt BM, Stroud C, Hanson S, Hanfling D, Gostin LO, editors. Guidance for establishing crisis standards of care for
p.000053: use in disaster situations: A letter report. Washington: National Academies Press; 2009
p.000053: (www.nap.edu/read/12749/chapter/1).
p.000053:
p.000053: Ethical issues raised by a possible influenza pandemic. Opinion No. 106. Paris: National Consultative Ethics Committee
p.000053: for Health and Life Sciences; 2009 (www.ccne-ethique.fr/ sites/default/files/publications/avis_106_anglais.pdf).
p.000053:
p.000053: Ethics and Ebola: Public health planning and response. Washington DC: Presidential Commission for the Study of
p.000053: Bioethical Issues.; 2015 (http://bioethics.gov/sites/default/files/ Ethics-and-Ebola_PCSBI_508.pdf).
p.000053:
p.000053: Ethical guidelines in Pandemic Influenza - Recommendations of the Ethics Subcommittee of the Advisory Committee to the
p.000053: Director, United States Centers for Disease Control and Prevention. Ethical guidelines in pandemic influenza. Atlanta:
p.000053: Centers for Disease Control and Prevention; 2007 (www.cdc.gov/od/science/integrity/phethics/docs/panflu_ethic_
p.000053: guidelines.pdf).
p.000053:
p.000053: Ethics Subcommittee of the Advisory Committee to the Director, United States Centers for Disease Control and
p.000053: Prevention. Ethical guidance for public health emergency preparedness and response: Highlighting ethics and values in
p.000053: vital public health service. Atlanta: Centers for Disease Control and Prevention; 2008
p.000053: (www.cdc.gov/od/science/integrity/phethics/docs/
p.000053: white_paper_final_for_website_2012_4_6_12_final_for_web_508_compliant.pdf).
p.000053:
p.000053: Ethics Subcommittee of the Advisory Committee to the Director, United States Centers for Disease Control and
p.000053: Prevention. Ethical considerations for decision making regarding allocation of mechanical ventilators during a severe
p.000053: influenza pandemic or other public health emergency. Atlanta: Centers for Disease Control and Prevention; 2011
p.000053: (www.cdc. gov/about/pdf/advisory/ventdocument_release.pdf).
p.000053:
p.000053: Integrated national avian and pandemic influenza response plan, 2007–2009. In: Avian Influenza and the Pandemic
p.000053: Threats: Nigeria. Geneva: United Nations System Influenza Coordination Office
p.000053: (http://un-influenza.org/?q=content/Nigeria).
p.000053:
p.000053:
p.000053:
p.000053:
p.000053:
p.000053:
p.000053:
p.000053:
p.000053: National Advisory Board on Health Care Ethics. Ethical considerations related to preparedness for a pandemic. Helsinki:
p.000053: Ministry of Social Affairs and Health; 2005 (http://
p.000053: etene.fi/documents/1429646/1561478/2005+Statement+on+ethical+considerations+relate
p.000053: d+to+preparedness+for+a+pandemic.pdf/fc3f2412-acfc-4685-b427-ca710a43c103).
p.000053:
p.000053: National Ethics Advisory Committee. Getting through together: Ethical values for
p.000053: a pandemic. Wellington: Ministry of Health; 2007 (https://neac.health.govt.nz/system/files/
p.000053: documents/publications/getting-through-together-jul07.pdf).
p.000054: 54
p.000054: Notes on the interim US guidance for monitoring and movement of persons with potential Ebola virus exposure. Atlanta
p.000054: GA: Centers for Disease Control and Prevention; 2016 (www.
p.000054: cdc.gov/vhf/ebola/exposure/monitoring-and-movement-of-persons-with-exposure.html).
p.000054:
p.000054: Pandemic Influenza Ethics Initiative Workgroup. Meeting the challenge of pandemic influenza: Ethical guidance for
p.000054: leaders and health care professionals in the veterans health administration. Washington DC: National Center for Ethics
p.000054: in Health Care, Veterans Health Administration; 2010 (www.ethics.va.gov/docs/pandemicflu/Meeting_the_Challenge_of_
p.000054: Pan_Flu-Ethical_Guidance_VHA_20100701.pdf).
p.000054:
p.000054: Responding to pandemic influenza: The ethical framework for policy and planning. London: Department of Health; 2007
p.000054: (www.gov.scot/Resource/Doc/924/0054555.pdf).
p.000054:
p.000054: Stand on guard for thee: Ethical considerations in preparedness planning for pandemic influenza. Toronto: University of
p.000054: Toronto Joint Centre for Bioethics; 2005 (www.jcb. utoronto.ca/people/documents/upshur_stand_guard.pdf).
p.000054:
p.000054: Swiss Federal Office of Public Health. Swiss Influenza Pandemic Plan. Bern; 2013
p.000054: (www.bag.admin.ch/influenza/01120/01132/10097/10104/index.html?lang=en&download=
p.000054: NHzLpZeg7t,lnp6I0NTU042l2Z6ln1ad1IZn4Z2qZpnO2Yuq2Z6gpJCGenx6gWym162epYb g2c_JjKbNoKSn6A--).
p.000054:
p.000054: Venkat A, Wolf L, Geiderman JM, Asher SL, Marco CA, McGreevy J et al. Ethical issues in the response to Ebola virus
p.000054: disease in US emergency departments: a position paper of the American College of Emergency Physicians, the Emergency
p.000054: Nurses Association and the Society for Academic Emergency Medicine. J Emerg Nurs. 2015; Mar;41(2):e5-e16. doi:
p.000054: 10.1016/j.jen.2015.01.012 (www.ncbi.nlm.nih.gov/pubmed/25770003).
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054: Annex 2. Participants at meetings to formulate Guidance for managing ethical issues in infectious disease outbreaks
p.000054:
p.000054:
p.000054:
p.000054: Panel discussion: Ethical considerations for use of unregistered interventions
p.000054: for Ebola viral disease, World Health Organization, Geneva, 11 August 2014 55
p.000054:
p.000054: Advisors
p.000054: Dr Juan Pablo Beca, Professor, Bioethics Center, Universidad del Desarrollo, Chile
p.000054: Dr Helen Byomire Ndagije, Head, Drug Information Department, Ugandan National Drug Authority, Uganda
p.000054: Dr Philippe Calain (Chair), Senior Researcher, Unit of Research on Humanitarian Stakes and Practices, Médecins Sans
p.000054: Frontières, Switzerland
p.000054: Dr Marion Danis, Head, Ethics and Health Policy and Chief, Bioethics Consultation Service, National Institutes of
p.000054: Health, United States of America
p.000054: Professor Jeremy Farrar, Director, Wellcome Trust, United Kingdom Professor Ryuichi Ida, Chair, National Bioethics
p.000054: Advisory Committee, Japan
p.000054: Professor Tariq Madani, infectious diseases physician and clinical academic researcher, Saudi Arabia
p.000054: Professor Michael Selgelid, Director, Centre for Human Bioethics, Monash University, Australia
p.000054: Professor Peter Smith, Professor of Tropical Epidemiology, London School of Tropical Medicine and Hygiene, United
p.000054: Kingdom
...
General/Other / Relationship to Authority
Searching for indicator authority:
(return to top)
p.000013: and interest to assist the poorer developing States in this regard.”9
p.000013:
p.000013: These obligations reflect the practical reality that infectious disease outbreaks do not respect national borders, and
p.000013: that an outbreak in one country can put the rest of the world at risk.
p.000013:
p.000013: Countries’ obligations to consider the needs of the international community do not arise solely in times of emergency.
p.000013: Instead, they require ongoing attention to ameliorate the social determinants of poor
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013:
p.000013: health that contribute to infectious disease outbreaks, including poverty, limited access to education, and inadequate
p.000013: systems of water and sanitation.
p.000013:
p.000013: The following are key elements of the obligations of governments and the international community:
p.000014: 14
p.000014: • Ensuring the sufficiency of national public health laws — As discussed later in this document, certain public
p.000014: health interventions that might be necessary during an infectious disease outbreak (e.g. restrictions on freedom of
p.000014: movement) depend on having a clear legal basis for government action, as well as a system in place to provide oversight
p.000014: and review. All countries should review their public health laws to ensure that they give the government sufficient
p.000014: authority to respond effectively to an epidemic while also providing individuals with appropriate human rights
p.000014: protections.
p.000014:
p.000014: • Participating in global surveillance and preparedness efforts —
p.000014: All countries must carry out their responsibilities under the IHR to participate in global surveillance efforts in a
p.000014: truthful and transparent manner. This includes providing prompt notification of events that may constitute a public
p.000014: health emergency of international concern, regardless
p.000014: of any negative consequences that may be associated with notification, such as a possible reduction in trade or
p.000014: tourism. The obligation to provide
p.000014: prompt notification to the international community stems not only from the text of the IHR but also from the ethical
p.000014: principles of solidarity and reciprocity. In addition, countries should develop
p.000014: preparedness plans for infectious disease outbreaks and other potential disasters and provide guidance to relevant
p.000014: health-care facilities to implement the plans.
p.000014:
p.000014: • Providing financial, technical, and scientific assistance — Countries that have the resources to provide foreign
p.000014: assistance should support global epidemic preparedness and response efforts, including research and development on
p.000014: diagnostics, therapeutics, and vaccines for
p.000014: pathogens with epidemic potential. This support should supplement ongoing efforts to build local public health
p.000014: capacities and strengthen primary health care systems in countries at greatest risk of harm from infectious disease
p.000014: outbreaks.
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
p.000014:
...
p.000023: issues are likely to be exacerbated during an infectious disease outbreak, creating an urgent need for careful planning
p.000023: and international collaboration. Specific issues that should be addressed include the following:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023: • Protecting the confidentiality of personal information — The
p.000023: unauthorized disclosure of personal information collected during an infectious disease outbreak (including name,
p.000023: address, diagnosis, family history, etc.) can expose individuals to significant risk. Countries should
p.000023: 24 ensure that adequate protection exists
p.000023: against these risks, including laws that safeguard the confidentiality of information generated through
p.000023: surveillance activities, and that strictly limit the circumstances in which such information may be used or disclosed
p.000023: for purposes different from those for which it was initially collected. Use and sharing of non-aggregated surveillance
p.000023: data for research purposes must have the approval of a properly constituted and trained research ethics committee.
p.000023:
p.000023: • Assessing the importance of universal participation — Public health surveillance is typically conducted on a
p.000023: mandatory basis, without
p.000023: the possibility of individual refusal. Collecting surveillance information on a mandatory basis is ethically
p.000023: appropriate on the grounds of public
p.000023: interest if an accountable governmental authority has determined that universal participation is necessary to achieve
p.000023: compelling public health objectives.
p.000023: However, it should not be assumed that surveillance activities must always be carried out on a mandatory basis.
p.000023: Entities responsible for designing and approving surveillance programmes should consider the appropriateness of
p.000023: allowing individuals to opt out of particular surveillance activities, taking into account the nature and degree of
p.000023: individual risks involved and the extent to which allowing opt-outs
p.000023: would undermine the activity’s public health goals.
p.000023:
p.000023: • Disclosing information to individuals and communities — Regardless of whether individuals are given the choice to
p.000023: opt out of surveillance activities, the process of surveillance should be conducted on a transparent basis. At a
p.000023: minimum, individuals and communities should be aware of the type of information
p.000023: that will be gathered about them, the purposes for which this information will be used, and any circumstances under
p.000023: which the information collected may be shared with third parties. In addition, information about the outcome of the
p.000023: surveillance activity should be made available as soon as reasonably possible.
p.000023: Careful attention should be given to the manner in which this information is communicated, in order to minimize
p.000023: the risk that subjects of surveillance may face stigmatization or discrimination.
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023:
p.000023: 6. Restrictions on freedom of movement
p.000023:
p.000023:
p.000023:
p.000025: 25
p.000025: Questions addressed:
p.000025:
...
p.000025:
p.000025: • Addressing financial and social consequences — Even short-term restrictions on freedom of movement can have
p.000025: significant — and possibly devastating —financial and social consequences for individuals, their families, and their
p.000025: communities. Countries should provide assistance to households that suffer financial
p.000025: losses as a result of inability to conduct business, loss of a job, damage to crops, or other consequences of
p.000025: restrictions on freedom of movement. In some cases, this support may need to continue
p.000025: for a period following the end of confinement. In addition, efforts should be made to support the social and
p.000025: professional reintegration of individuals for whom confinement is no longer necessary, including measures to reduce
p.000025: stigmatization and discrimination.
p.000025:
p.000025: • Due process protections — Mechanisms should be in place to allow individuals whose liberty has been restricted to
p.000025: challenge the appropriateness of those restrictions, the way they are enforced, and the conditions under which the
p.000025: restrictions are carried out. If it is not feasible to provide full due process protection before the restrictions are
p.000025: implemented in an emergency scenario, mechanisms for review and appeal should be made
p.000025: available without excessive delay. All persons involved in decisions to restrict individuals’ freedom of movement
p.000025: should be accountable for any abuses of authority.
p.000025:
p.000025: • Equitable application — Restrictions on freedom of movement should be
p.000025: applied in the same manner to all 27
p.000025: persons posing a comparable public health risk. Thus, individuals should not be subject to greater or lesser
p.000025: restrictions for reasons unrelated to the
p.000025: risks they may pose to others, including membership in any disfavoured or favoured social group or class (for example,
p.000025: groups defined by gender, ethnicity, or religion). In addition, policy- makers should seek to ensure that restrictions
p.000025: are not applied in a manner that imposes a disproportionate burden on vulnerable segments of society.
p.000025:
p.000025: • Communication and transparency —
p.000025: Policy-makers and public health officials should engage communities in a dialogue about any restrictions on freedom of
p.000025: movement and solicit community members’ views on how restrictions can be carried out with the least possible burden.
p.000025: They should also provide regular updates on the implementation of such measures,
p.000025: both to the public at large and to those whose movement has been restricted. Communication strategies should be
p.000025: designed to avoid the stigmatization
...
p.000047: or not they will be able to make appropriate contributions. In addition, foreign aid workers should be clearly
p.000047: informed of the conditions of their deployment, including the level of health care they can expect if they become ill,
p.000047: the circumstances under
p.000047: which they will be repatriated, available insurance, and whether benefits will
p.000047: be provided to their families in case of illness or death.
p.000047:
p.000047: • Provision of necessary training and resources — Aid workers must be provided with appropriate
p.000047: training, preparation, and equipment to ensure that they can effectively carry out their mission with the lowest risks
p.000047: practicable. Training should include preparation in psychosocial and communication skills, and in understanding and
p.000047: respecting the local culture and traditions. Managers and organizations have an obligation to provide adequate support
p.000047: and guidance to the staff, both during their activity in the field and following
p.000047: their mission. This should include training and resources for managing challenging ethical issues, such as resource
p.000047: allocation decisions, triage, and inequities.
p.000047:
p.000047: • Ensuring the security and safety of aid workers — Organizations that deploy foreign aid workers have an
p.000047: obligation to take all necessary measures to ensure the workers’ security, particularly in situations of crisis; this
p.000047: obligation includes the provision of measures to reduce risks of exposure to infectious agents, contamination and
p.000047: violence. A clear chain of authority must be in place to provide oversight and ongoing advice. Individuals who object
p.000047: to assigned duties should have an opportunity for review and appeal, according to the norms of the organizations for
p.000047: which they work.
p.000047:
p.000047: Aid workers also have their own ethical obligations to patients, affected communities, their sponsoring
p.000047: organizations, and themselves. In addition to the obligations described in other sections of this document, obligations
p.000047: of foreign aid workers include the following:
p.000047:
p.000047: • Adequate preparation — Aid workers should take part in any training that is offered. If they believe that the
p.000047: training they have been given is inadequate, they should bring their concerns to
p.000047: the attention of their organization managers. Foreign aid workers deployed during crises and where resources are scarce
p.000047: should carefully consider whether they are prepared to deal with ethical issues that may lead to moral and
p.000047: psychological distress.
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047: • Adherence to assigned roles and responsibilities — Aid workers should understand the roles and responsibilities
p.000047: they have been asked to assume and should not, except in the most extreme circumstances, undertake tasks they have not
p.000047: been authorized to perform. In addition, they should provide clear and timely information to both their sponsoring
p.000047: organizations and local officials and should understand that,
p.000047: if they go beyond the tasks they have been authorized to perform, they will be accountable not only within their
p.000047: own organizations but also under applicable local standards and laws.
p.000047:
...
p.000054: Toronto Joint Centre for Bioethics; 2005 (www.jcb. utoronto.ca/people/documents/upshur_stand_guard.pdf).
p.000054:
p.000054: Swiss Federal Office of Public Health. Swiss Influenza Pandemic Plan. Bern; 2013
p.000054: (www.bag.admin.ch/influenza/01120/01132/10097/10104/index.html?lang=en&download=
p.000054: NHzLpZeg7t,lnp6I0NTU042l2Z6ln1ad1IZn4Z2qZpnO2Yuq2Z6gpJCGenx6gWym162epYb g2c_JjKbNoKSn6A--).
p.000054:
p.000054: Venkat A, Wolf L, Geiderman JM, Asher SL, Marco CA, McGreevy J et al. Ethical issues in the response to Ebola virus
p.000054: disease in US emergency departments: a position paper of the American College of Emergency Physicians, the Emergency
p.000054: Nurses Association and the Society for Academic Emergency Medicine. J Emerg Nurs. 2015; Mar;41(2):e5-e16. doi:
p.000054: 10.1016/j.jen.2015.01.012 (www.ncbi.nlm.nih.gov/pubmed/25770003).
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054:
p.000054: Annex 2. Participants at meetings to formulate Guidance for managing ethical issues in infectious disease outbreaks
p.000054:
p.000054:
p.000054:
p.000054: Panel discussion: Ethical considerations for use of unregistered interventions
p.000054: for Ebola viral disease, World Health Organization, Geneva, 11 August 2014 55
p.000054:
p.000054: Advisors
p.000054: Dr Juan Pablo Beca, Professor, Bioethics Center, Universidad del Desarrollo, Chile
p.000054: Dr Helen Byomire Ndagije, Head, Drug Information Department, Ugandan National Drug Authority, Uganda
p.000054: Dr Philippe Calain (Chair), Senior Researcher, Unit of Research on Humanitarian Stakes and Practices, Médecins Sans
p.000054: Frontières, Switzerland
p.000054: Dr Marion Danis, Head, Ethics and Health Policy and Chief, Bioethics Consultation Service, National Institutes of
p.000054: Health, United States of America
p.000054: Professor Jeremy Farrar, Director, Wellcome Trust, United Kingdom Professor Ryuichi Ida, Chair, National Bioethics
p.000054: Advisory Committee, Japan
p.000054: Professor Tariq Madani, infectious diseases physician and clinical academic researcher, Saudi Arabia
p.000054: Professor Michael Selgelid, Director, Centre for Human Bioethics, Monash University, Australia
p.000054: Professor Peter Smith, Professor of Tropical Epidemiology, London School of Tropical Medicine and Hygiene, United
p.000054: Kingdom
p.000054: Ms Jeanine Thomas, Patient Safety Champion, United States of America
p.000054: Professor Aisssatou Touré, Head, Immunology Department, Institut Pasteurde Dakar,,Senegal Professor Ross Upshur, Chair
p.000054: in Primary Care Research; Professor, Department of Family and Community Medicine and Dalla Lana School of Public
p.000054: Health, University of Toronto; Canada
p.000054:
p.000054: Resource persons
p.000054: Dr Daniel Bausch, Head, Virology and Emerging Infections Department, US Naval Medical Research Unit No. 6, Peru
p.000054: Professor Luciana Borio, Assistant Commissioner for Counterterrorism Policy; Director, Office of Counterterrorism and
p.000054: Emerging Threats, Food and Drug Administration, United States of America
p.000054: Dr Frederick Hayden, Professor of Clinical Virology and Professor of Medicine, University of Virginia School of
p.000054: Medicine, United States of America
...
General/Other / cioms guidelines
Searching for indicator cioms:
(return to top)
p.000050: Political Rights. Geneva: American Association for the International Commission of Jurists; 1985
p.000050: (http://icj.wpengine.netdna-cdn.com/wp-content/uploads/1984/07/Siracusa-
p.000050: principles-ICCPR-legal-submission-1985-eng.pdf, accessed 23 July 2016).
p.000050:
p.000050: 9 United Nations Economic and Social Council. General Comment No. 14: The right to Highest Attainable Standard of
p.000050: Health (Art. 12 of the International Covenant on Economic, Social and Cultural Rights). New York: United Nations
p.000050: Committee on Economic, Social and Cultural Rights (E/C. 12/2000/4 – 2000; www1.umn.edu/
p.000050: humanrts/gencomm/escgencom14.htm, accessed 23 July 2016).
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050: 10 Parpia AS, Ndeffo-Mbah ML, Wenzel NS, Galvani AP. Effects of response to the 2014–2015 Ebola outbreak on deaths
p.000050: from malaria, HIV/AIDS, and tuberculosis, West Africa. Emerg Infect Dis. 2016;22(3)
p.000050: (http://dx.doi.org/10.3201/eid2203.150977, accessed 23 July 2016).
p.000050:
p.000050: 11 Declaration of Helsinki – Ethical principles for medical research involving human subjects, revised October 2013
p.000050: Ferney-Voltaire: World Medical Association; 2013 (www.wma.net/ en/30publications/10policies/b3/index.html, accessed 23
p.000050: July 2016).
p.000050:
p.000050: 12 International ethical guidelines for biomedical research involving human subjects.
p.000050: Geneva: Council for International Organizations of Medical Sciences; 2002 (www.cioms. 51
p.000050: ch/publications/guidelines/guidelines_nov_2002_blurb.htm, accessed 23 July 2016).
p.000050:
p.000050: 13 Standards and operational guidance for ethics review of health-related research with human participants. Geneva:
p.000050: World Health Organization; 2011 (www.who.int/ethics/ publications/9789241502948/en/, accessed 23 July 2016).
p.000050:
p.000050: 14 Ethics in epidemics, emergencies and disasters: Research, surveillance and patient care.
p.000050: Geneva: World Health Organization; 2015 (who.int/ethics/publications/epidemics- emergencies-research/en/, accessed 23
p.000050: July 2016).
p.000050:
p.000050: 15 Research ethics in international epidemic response. Geneva: World Health Organization; 2009 (WHO/HSE/GIP/ITP/10.1;
p.000050: www.who.int/ethics/gip_research_ethics_.pdf, accessed 23 July 2016).
p.000050:
p.000050: 16 Developing global norms for sharing data and results during public health emergencies. Geneva: World Health
p.000050: Organization; 2015 (www.who.int/medicines/ebola-treatment/ blueprint_phe_data-share-results/en/, accessed 23 July
p.000050: 2016).
p.000050:
p.000050: 17 Overlapping publications. International Committee of Medical Journal Editors (www.
p.000050: icmje.org/recommendations/browse/publishing-and-editorial-issues/overlapping- publications.html, accessed 23 July
p.000050: 2016).
p.000050:
...
General/Other / cultural difference
Searching for indicator culturally:
(return to top)
p.000015:
p.000015: public communication with health authorities.
p.000015:
p.000015: • Situations of particular vulnerability — As discussed further in Guideline 3, special attention should be given
p.000015: to ensuring that persons who face heightened susceptibility to harm or injustice during infectious disease outbreaks
p.000015: are able to contribute to decisions about infectious disease outbreak planning and response. Public health officials
p.000015: should recognize that such persons might be distrustful of government and other institutions, and make special efforts
p.000015: to include them in community engagement plans.
p.000015:
p.000015: • Openness to diverse perspectives — Communication efforts should be designed to facilitate a genuine
p.000015: two-way dialogue, rather than as merely a means to announce decisions
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015: that have already been made. Decision-makers should be prepared to recognize and debate alternative approaches and
p.000015: revise their decisions based on information they receive. Reaching out to the community early, and allowing for
p.000015: consideration of
p.000015: the interests of all people who will
p.000015: 16 potentially be affected, can play an important role in building trust and empowering communities to
p.000015: be involved in a genuine dialogue.
p.000015:
p.000015: • Transparency — The ethical principle of transparency requires that decision-makers publicly explain the basis for
p.000015: decisions in language that is
p.000015: linguistically and culturally appropriate.
p.000015: When decisions must be made in the face of uncertain information, the uncertainties should be explicitly acknowledged
p.000015: and conveyed to the public.
p.000015:
p.000015: • Accountability — The public should know who is responsible for making
p.000015: and implementing decisions in relation to the outbreak response, and how they can challenge decisions they believe are
p.000015: inappropriate.
p.000015:
p.000015: The media will play an important role in any infectious disease outbreak response effort. It is therefore important to
p.000015: ensure that the media has access to accurate and timely information about the disease and its management. Governments,
p.000015: nongovernmental organizations, and
p.000015: academic institutions should make efforts to support media training in relevant scientific concepts and techniques for
p.000015: communicating risk information without raising unnecessary alarm. Media training is important for public health sector
p.000015: employees who may interact with media covering public health issues.
p.000015: In turn, the media has a responsibility to provide accurate, factual, and balanced reporting. This is an important
p.000015: component of media ethics.
p.000015:
p.000015:
p.000015: Cholera outbreak in Sierra Leone
p.000015: Source: Fid Thompson
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000015: 3. Situations of particular vulnerability
p.000015:
p.000015:
p.000015:
p.000015:
p.000015:
p.000017: 17
p.000017: Questions addressed:
p.000017:
...
p.000035: minimized to the extent reasonably possible (e.g. administration under hygienic conditions; using
p.000035: the same safety precautions that would be used during a clinical trial, with close monitoring and access to emergency
p.000035: medication and equipment; and providing necessary supportive treatment). Only investigational products manufactured
p.000035: according to good manufacturing practices should be used for MEURI.
p.000035:
p.000035: • Collection and sharing of meaningful data — Physicians overseeing MEURI have the same moral
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: obligation to collect all scientifically relevant data on the safety and efficacy of the intervention as researchers
p.000035: overseeing a clinical trial. Knowledge generated through MEURI should be aggregated across patients if possible and
p.000035: shared transparently, completely and rapidly with the MEURI scientific advisory committee, public health authorities,
p.000035: physicians and researchers in the country, and the international medical and scientific community.
p.000035: Information should be described accurately, without overstating benefits or understating uncertainties or risks.
p.000035:
p.000035: • Importance of informed consent — Individuals who are offered MEURI should be made aware that the intervention
p.000035: might not benefit
p.000035: them and might even harm them. The process of obtaining informed consent to MEURI should be carried out in a
p.000035: culturally and linguistically sensitive manner, with an emphasis on the content and understandability of the
p.000035: information conveyed and the voluntariness of the patient’s decision.
p.000035: The ultimate choice of whether to receive the unproven intervention must rest with the patient, if the patient is
p.000035: in a condition to make the choice. If the patient is unconscious, cognitively impaired, or too sick to understand the
p.000035: information, proxy consent should be obtained from a family member or other authorized decision-maker.
p.000035:
p.000035: • Need for community engagement —
p.000035: MEURI must be sensitive to local norms and practices. One way to try to ensure such sensitivity is to use rapid
p.000035: “community engagement
p.000035: teams” to promote dialogue about the potential benefits and risks of receiving
p.000035: interventions that have not yet been tested in clinical trials.
p.000035:
p.000035: • Fair distribution in the face of scarcity — Compounds qualifying for MEURI may not be available in large
p.000035: quantities. In this situation, choices will have to be made about who receives
p.000035: each intervention. Countries should 37
p.000035: establish mechanisms for making these allocation decisions, taking into account the assessment of the MEURI Scientific
p.000035: Advisory Committee and the principles discussed in Guideline 4.
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035:
p.000035: 10. Rapid data sharing
p.000035:
...
General/Other / declaration of helsinki
Searching for indicator helsinki:
(return to top)
p.000050:
p.000050: 7 Dawson A, Jennings B. The place of solidarity in public health ethics. Public Health Reviews. 2012;34(1):65–79.
p.000050:
p.000050: 8 Siracusa Principles on the Limitation and Derogation Provision in the International Covenant on Civil and
p.000050: Political Rights. Geneva: American Association for the International Commission of Jurists; 1985
p.000050: (http://icj.wpengine.netdna-cdn.com/wp-content/uploads/1984/07/Siracusa-
p.000050: principles-ICCPR-legal-submission-1985-eng.pdf, accessed 23 July 2016).
p.000050:
p.000050: 9 United Nations Economic and Social Council. General Comment No. 14: The right to Highest Attainable Standard of
p.000050: Health (Art. 12 of the International Covenant on Economic, Social and Cultural Rights). New York: United Nations
p.000050: Committee on Economic, Social and Cultural Rights (E/C. 12/2000/4 – 2000; www1.umn.edu/
p.000050: humanrts/gencomm/escgencom14.htm, accessed 23 July 2016).
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050:
p.000050: 10 Parpia AS, Ndeffo-Mbah ML, Wenzel NS, Galvani AP. Effects of response to the 2014–2015 Ebola outbreak on deaths
p.000050: from malaria, HIV/AIDS, and tuberculosis, West Africa. Emerg Infect Dis. 2016;22(3)
p.000050: (http://dx.doi.org/10.3201/eid2203.150977, accessed 23 July 2016).
p.000050:
p.000050: 11 Declaration of Helsinki – Ethical principles for medical research involving human subjects, revised October 2013
p.000050: Ferney-Voltaire: World Medical Association; 2013 (www.wma.net/ en/30publications/10policies/b3/index.html, accessed 23
p.000050: July 2016).
p.000050:
p.000050: 12 International ethical guidelines for biomedical research involving human subjects.
p.000050: Geneva: Council for International Organizations of Medical Sciences; 2002 (www.cioms. 51
p.000050: ch/publications/guidelines/guidelines_nov_2002_blurb.htm, accessed 23 July 2016).
p.000050:
p.000050: 13 Standards and operational guidance for ethics review of health-related research with human participants. Geneva:
p.000050: World Health Organization; 2011 (www.who.int/ethics/ publications/9789241502948/en/, accessed 23 July 2016).
p.000050:
p.000050: 14 Ethics in epidemics, emergencies and disasters: Research, surveillance and patient care.
p.000050: Geneva: World Health Organization; 2015 (who.int/ethics/publications/epidemics- emergencies-research/en/, accessed 23
p.000050: July 2016).
p.000050:
p.000050: 15 Research ethics in international epidemic response. Geneva: World Health Organization; 2009 (WHO/HSE/GIP/ITP/10.1;
p.000050: www.who.int/ethics/gip_research_ethics_.pdf, accessed 23 July 2016).
p.000050:
...
p.000053: guidelines.pdf).
p.000053:
p.000053: Ethics Subcommittee of the Advisory Committee to the Director, United States Centers for Disease Control and
p.000053: Prevention. Ethical guidance for public health emergency preparedness and response: Highlighting ethics and values in
p.000053: vital public health service. Atlanta: Centers for Disease Control and Prevention; 2008
p.000053: (www.cdc.gov/od/science/integrity/phethics/docs/
p.000053: white_paper_final_for_website_2012_4_6_12_final_for_web_508_compliant.pdf).
p.000053:
p.000053: Ethics Subcommittee of the Advisory Committee to the Director, United States Centers for Disease Control and
p.000053: Prevention. Ethical considerations for decision making regarding allocation of mechanical ventilators during a severe
p.000053: influenza pandemic or other public health emergency. Atlanta: Centers for Disease Control and Prevention; 2011
p.000053: (www.cdc. gov/about/pdf/advisory/ventdocument_release.pdf).
p.000053:
p.000053: Integrated national avian and pandemic influenza response plan, 2007–2009. In: Avian Influenza and the Pandemic
p.000053: Threats: Nigeria. Geneva: United Nations System Influenza Coordination Office
p.000053: (http://un-influenza.org/?q=content/Nigeria).
p.000053:
p.000053:
p.000053:
p.000053:
p.000053:
p.000053:
p.000053:
p.000053:
p.000053: National Advisory Board on Health Care Ethics. Ethical considerations related to preparedness for a pandemic. Helsinki:
p.000053: Ministry of Social Affairs and Health; 2005 (http://
p.000053: etene.fi/documents/1429646/1561478/2005+Statement+on+ethical+considerations+relate
p.000053: d+to+preparedness+for+a+pandemic.pdf/fc3f2412-acfc-4685-b427-ca710a43c103).
p.000053:
p.000053: National Ethics Advisory Committee. Getting through together: Ethical values for
p.000053: a pandemic. Wellington: Ministry of Health; 2007 (https://neac.health.govt.nz/system/files/
p.000053: documents/publications/getting-through-together-jul07.pdf).
p.000054: 54
p.000054: Notes on the interim US guidance for monitoring and movement of persons with potential Ebola virus exposure. Atlanta
p.000054: GA: Centers for Disease Control and Prevention; 2016 (www.
p.000054: cdc.gov/vhf/ebola/exposure/monitoring-and-movement-of-persons-with-exposure.html).
p.000054:
p.000054: Pandemic Influenza Ethics Initiative Workgroup. Meeting the challenge of pandemic influenza: Ethical guidance for
p.000054: leaders and health care professionals in the veterans health administration. Washington DC: National Center for Ethics
p.000054: in Health Care, Veterans Health Administration; 2010 (www.ethics.va.gov/docs/pandemicflu/Meeting_the_Challenge_of_
p.000054: Pan_Flu-Ethical_Guidance_VHA_20100701.pdf).
p.000054:
p.000054: Responding to pandemic influenza: The ethical framework for policy and planning. London: Department of Health; 2007
p.000054: (www.gov.scot/Resource/Doc/924/0054555.pdf).
p.000054:
p.000054: Stand on guard for thee: Ethical considerations in preparedness planning for pandemic influenza. Toronto: University of
p.000054: Toronto Joint Centre for Bioethics; 2005 (www.jcb. utoronto.ca/people/documents/upshur_stand_guard.pdf).
p.000054:
...
General/Other / participants in a control group
Searching for indicator placebo:
(return to top)
p.000030: an outbreak leaves a large number of children as orphans.
p.000030:
p.000030: • Gaining and maintaining trust — Failure to build and maintain community trust during the process of research
p.000030: design and implementation, or when disclosing preliminary results, will not only impede study recruitment and
p.000030: completion but may also undermine
p.000030: the uptake of any interventions proven to be efficacious. Engaging with affected communities before, during, and after
p.000030: a study is essential to build and maintain trust. In environments in which the public’s trust in government is fragile,
p.000030: researchers should remain as independent as possible from official public health activities. If government workers are
p.000030: themselves involved in
p.000030: conducting research, they should inform participants of this fact. Individuals who observe unethical practices carried
p.000030: out in the name of public health or emergency response efforts should promptly report them to ethics committees or
p.000030: other independent bodies.
p.000030: • Selecting an appropriate research 33
p.000030: methodology — Exposing research participants to risk is ethically unacceptable if the study is not designed in a manner
p.000030: capable of providing valid results. It is therefore imperative that all research be designed and conducted in a
p.000030: methodologically rigorous manner. In clinical trials,
p.000030: the appropriateness of features such as randomization, placebo controls, blinding or masking should be determined on a
p.000030: case-by-case basis, with attention to both the scientific
p.000030: validity of the data and the acceptability of the methodology to the community from which participants will be drawn.
p.000030: In studies relying on qualitative methods, the potential benefits of using methodologies such as focus groups (in which
p.000030: individual confidentiality cannot be guaranteed) or of interviewing traumatized victims should be balanced against the
p.000030: risks and burdens to the individuals involved.
p.000030:
p.000030: • Rapid data sharing: As WHO has previously recognized, every researcher who engages in generation of information
p.000030: related to a public health emergency or acute public health event with the potential to progress
p.000030: to an emergency has the fundamental moral obligation to share preliminary results once they are adequately quality
p.000030: controlled for release.16 Such information should be shared with
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030: public health officials, the study participants and affected population, and groups involved in wider international
p.000030: response efforts, without waiting for publication in scientific journals. Journals should facilitate
p.000030: this process by allowing researchers to rapidly disseminate information
p.000030: 34 with immediate implications for public
p.000030: health without losing the opportunity for subsequent consideration for publication in a journal.17
p.000030:
p.000030: • Assuring equitable access to the benefits of research — As
...
Orphaned Trigger Words
p.000055: Health Ethics team, supported by Andreas Reis and Maria Magdalena Guraiib.
p.000055:
p.000055: WHO is grateful to Carl Coleman for his role as lead writer, his analysis and synthesis of existing guidance documents,
p.000055: and his incorporation of comments generated during preparatory meetings and the broader peer review process.
p.000055:
p.000055: Appreciation is extended to the many individuals and organizations who provided comments on drafts of the guidance
p.000055: document, including: Alice Desclaux, Institut de Recherche pour le Développement, France; Aminu Yakubu, Federal
p.000055: Ministry of Health, Nigeria; Annick Antierens, Médecins Sans Frontières,
p.000055: Belgium; Bagher Larijani, Endocrinology and Metabolism Research Center, Iran (Islamic Republic of); Brad Freeman,
p.000055: Washington University School of Medicine, USA;
p.000055: Catherine Hankins, Amsterdam Institute for Global Health and Development, Netherlands; Cheryl Macpherson, Bioethics
p.000055: Department, St. George’s University School of Medicine, Grenada; Claude Vergès, Universidad de Panamá, Panama; Drue
p.000055: H Barrett, Nicole J Cohen, and Rita F Helfand, Centers for Disease Control and Prevention, USA; Dirceu Greco, Federal
p.000055: University of Minas Gerais, Brazil; Edward Foday, Ministry of Health and Sanitation, Sierra Leone; Emilie Alirol,
p.000055: Geneva
p.000055: University Hospitals, Switzerland; Heather Draper, University of Birmingham, United Kingdom; Kenneth Goodman, Miller
p.000055: School of Medicine, University of Miami, USA; Morenike Oluwatoyin Ukpong, Obafemi Awolowo University, Nigeria; Paul
p.000055: Bouvier, International Committee of the Red Cross, Switzerland; Ruth Macklin, Albert Einstein College of Medicine, USA;
p.000055: Voo Tech Chuan, Centre for Biomedical Ethics, National University of Singapore, Singapore.
p.000055:
p.000055: The advice, comments and guidance of the following entities are also gratefully acknowledged: COST Action IS 1201:
p.000055: Disaster Bioethics (in particular Dónal O'Mathúna, Dublin City University, Ireland; the staff of the Nuffield Council
p.000055: on Bioethics, United Kingdom (in particular Hugh Whittall); Johns Hopkins Berman Institute of Bioethics, USA (in
p.000055: particular Nancy Kass and Jeffrey Kahn); the International Severe Acute Respiratory and Emerging Infection Consortium,
p.000055: United Kingdom and its members (in particular Alistair Nichol, Irish Critical Care–Clinical Research Core, University
p.000055: College Dublin, Ireland, and Raul Pardinaz-Solis, Centre for Tropical Medicine and Global Health,
p.000055: University of Oxford, United Kingdom); and the Secretariat of the National Committee of Bioethics, King Abdulaziz City
p.000055: for Science and Technology, Kingdom of Saudi Arabia.
p.000055:
p.000055: WHO appreciates the collaboration of the Chairperson (Christiane Woopen, then
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055: Chair of the German Ethics Council) and members of the Steering Committee of the Global Summit of National
p.000055: Ethics/Bioethics Committees, who provided the opportunity to present an earlier draft of the Guidance to
p.000055: representatives of 83 national ethics committees at the Summit in Berlin in March 2016. Their review and comments have
p.000055: been incorporated into this document.
p.000055:
p.000055: The document also benefited from the review of the Global Network of WHO Collaborating Centers on Bioethics. Special
p.000055: thanks go to Ronald Bayer, the outgoing Chair of this network, and Amy Fairchild, Chair of the Guideline Development
p.000055: Group for the ethics of public health surveillance (both from Mailman School of Public Health, Columbia University,
p.000055: USA), and to the incoming Chair of the network, Michael Selgelid, Center for Human Bioethics, Monash University,
p.000055: Australia. The critical review by these individuals ensured that the guidance document was consistent with other
p.000055: ongoing projects.
p.000055:
p.000055: Many frontline responders and WHO staff members who are routinely challenged during epidemic outbreaks provided
p.000055: valuable contributions based on their personal experiences; the document is much richer in its content as a result. The
p.000055: WHO Research Ethics Committee and the Public Health Ethics Consultative Group provided valuable inputs, drawing
p.000055: especially on their review of research and public health projects undertaken during the Ebola and Zika outbreaks.
p.000055:
p.000055: WHO gratefully acknowledges the input of Ross Upshur, University of Toronto, Canada (first chair of the Ethics Working
p.000055: Group), and the subsequent co-chairs Lisa Schwartz, McMaster University, Canada, and Aissatou Touré, Institut Pasteur
p.000055: de Dakar, Senegal.
p.000055: Both co-chairs spent countless hours with the Secretariat and the lead writer to review thoughtfully the many comments
p.000055: received and to give final shape to the document.
p.000055: Philippe Calain, Médecins Sans Frontières,
p.000055: Switzerland, Chair of the Ethics Panel and a member of various ethics working
p.000055: groups, continuously challenged the WHO Secretariat to look beyond science to the 5
p.000055: people affected by the outbreaks, their cultures and their societies.
p.000055:
p.000055: The guidance document specifically benefited from reviews of the following WHO staff: Juliet Bedford, Carla Saenz
p.000055: Bresciani, Ian Clarke, Rudi J J M Coninx, Pierre Formenty, Gaya Manori Gamhewage, Theo Grace, Paul Gully, Brooke Ronald
p.000055: Johnson JR, Annette Kuesel, Anaïs
p.000055: Legand, Ahmed Mohamed Amin Mandil, Bernadette Murgue, Tim Nguyen, Asiya Ismail Odugleh-Kolev, Martin Matthew Okechukwu
p.000055: Ota, Bruce Jay Plotkin, Annie Portela, Marie-Pierre Preziosi, Manju Rani, Nigel Campbell Rollins, Cathy Roth,
p.000055: Manisha Shridhar, Rajesh Sreedharan, David Wood, and Yousef Elbes.
p.000055:
p.000055: A special thanks to Vânia de la Fuente Núñez, who was responsible for managing the Ethics Working Group; and Michele
p.000055: Loi who coordinated the whole process.
p.000055: Former interns of the Global Health Ethics team Patrick Hummel (University of
p.000055: St Andrews, United Kingdom) and Corinna Klingler (University of Munich, Germany) deserve a special mention for
p.000055: undertaking a scoping review in relation to pregnancy
p.000055: and infectious diseases, which informed the development of guidance in this area.
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055:
p.000055: The guidance document would not have been possible without the generous support of the Wellcome Trust. The kind support
p.000055: of the following partners is also very gratefully acknowledged: 3U Global Health Partnership; Canadian Institutes of
...
p.000028: isolate the patient until he or she is no longer infectious, assuming it is feasible to do so in a humane manner.
p.000028:
p.000028: • Impact on community trust — Overriding individuals’ refusal of diagnostic, therapeutic, or preventive measures
p.000028: can backfire if it leads members of the community to become distrustful of health-care providers
p.000028: or the public health system. Benefits from imposing unwanted interventions should be balanced against possible harms
p.000028: caused by undermining trust in the health-care system.
p.000028:
p.000028: Objections to diagnostic, therapeutic, or preventive measures should not be overridden without giving the individual
p.000028: notice and an opportunity to raise his or her objections before an impartial decision- maker, such as a court,
p.000028: interdisciplinary review panel, or other entity not involved in the initial decision. The burden should be on the
p.000028: proposer of the intervention to show that the expected public health benefits justify overriding the individual’s
p.000028: choice.
p.000028: The process for resolving objections should be conducted in an open and transparent manner, consistent with the
p.000028: principles discussed in Guideline 2.
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028:
p.000028: 8. Research during infectious disease outbreaks
p.000028:
p.000028:
p.000028:
p.000030: 30
p.000030: Questions addressed:
p.000030:
p.000030: • What is the appropriate role of research during an infectious disease outbreak?
p.000030: • How might the circumstances surrounding infectious disease outbreaks affect the ethical review of research
p.000030: proposals?
p.000030: • How might the circumstances surrounding infectious disease outbreaks affect the process of informed consent to
p.000030: research?
p.000030: • What methodological designs are appropriate for research conducted during infectious disease outbreaks?
p.000030: • How should research be integrated into broader outbreak response efforts?
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030: During an infectious disease outbreak there is a moral obligation to learn as much as possible as quickly as possible,
p.000030: in order to inform the ongoing public health response, and to allow for proper scientific evaluation of new
p.000030: interventions being tested. Such an approach will also improve preparedness for similar future outbreaks. Carrying out
p.000030: this obligation requires carefully designed and ethically conducted scientific research. In addition to clinical trials
p.000030: evaluating diagnostics, treatments or preventive measures such as vaccines, other types
p.000030: of research — including epidemiological, social science, and implementation
p.000030: studies — can play a critical role in reducing morbidity and mortality and addressing the
p.000030: social and economic consequences caused by the outbreak.
p.000030:
p.000030: Research conducted during an infectious disease outbreak should be designed and implemented in conjunction with other
p.000030: public health interventions. Under no circumstances should research compromise the public health response to an
p.000030: outbreak or the provision of appropriate clinical care. All clinical trials must be prospectively registered in an
p.000030: appropriate clinical trial registry.
p.000030:
p.000030: As in non-outbreak situations, it is essential to ensure that studies are scientifically
p.000030: valid and add social value; that risks are reasonable in relation to anticipated
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
p.000030:
...
p.000043: workers during infectious disease outbreaks?
p.000043: • What special obligations do workers in the health-care sector have during infectious disease outbreaks?
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: An effective infectious disease outbreak response depends on the contribution of
p.000043: a diverse range of frontline workers, some of whom may be working on a volunteer basis. These workers often assume
p.000043: considerable personal risk to carry out their jobs. Within the health-care sector, frontline workers range from
p.000043: health-care professionals
p.000043: with direct patient care responsibilities to traditional healers, ambulance drivers,
p.000043: laboratory workers, and hospital ancillary staff. Outside the health sector, individuals such as sanitation workers,
p.000043: burial teams, domestic humanitarian aid workers, and persons who carry out contact-tracing also play critical roles.
p.000043: Some of these workers may be among the least advantaged members of society, and have little control over the type of
p.000043: duties they are asked to
p.000043: perform. It is essential that frontline workers’ rights and obligations be clearly established during the pre-outbreak
p.000043: planning period,
p.000043: in order to ensure that all actors are aware of what can reasonably be expected if an outbreak occurs.
p.000043:
p.000043: Workers with certain professional qualifications, such as physicians, nurses, and funeral directors, may have a duty to
p.000043: assume a certain level of personal risk as part of their professional or employment commitments. Many frontline workers
p.000043: are not subject to any such obligations, and their assumption of risk must therefore be regarded as beyond the call of
p.000043: duty (i.e. “supererogatory”). This is particularly true for sanitation workers, burial teams, and community health
p.000043: workers, many of whom
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043:
p.000043: may have precarious employment contracts with no social protection, or work on
p.000043: a volunteer basis.
p.000043:
p.000043: Regardless of whether a particular individual has a pre-existing duty to assume
p.000043: heightened risks during an infectious disease outbreak, once a worker has taken on these
p.000043: 44 risks, society has a reciprocal obligation to
p.000043: provide necessary support. At a minimum, fulfilment of society’s reciprocal obligations to frontline workers requires
p.000043: the following actions:
p.000043:
p.000043: • Minimizing the risk of infection —
p.000043: Individuals should not be expected to take on risky work assignments
p.000043: during an infectious disease outbreak unless they are provided with
p.000043: the training, tools, and resources necessary to minimize the risks to the extent reasonably possible. This includes
p.000043: complete and accurate information known about the nature
p.000043: of the pathogen and infection control measures, updated information on the epidemiological situation at the local
p.000043: level, and the provision of personal protective equipment. Regular screening of frontline workers should be put
p.000043: in place to detect any infection as quickly as possible, in order to initiate immediate care and minimize the risk of
...
p.000047: to assigned duties should have an opportunity for review and appeal, according to the norms of the organizations for
p.000047: which they work.
p.000047:
p.000047: Aid workers also have their own ethical obligations to patients, affected communities, their sponsoring
p.000047: organizations, and themselves. In addition to the obligations described in other sections of this document, obligations
p.000047: of foreign aid workers include the following:
p.000047:
p.000047: • Adequate preparation — Aid workers should take part in any training that is offered. If they believe that the
p.000047: training they have been given is inadequate, they should bring their concerns to
p.000047: the attention of their organization managers. Foreign aid workers deployed during crises and where resources are scarce
p.000047: should carefully consider whether they are prepared to deal with ethical issues that may lead to moral and
p.000047: psychological distress.
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047: • Adherence to assigned roles and responsibilities — Aid workers should understand the roles and responsibilities
p.000047: they have been asked to assume and should not, except in the most extreme circumstances, undertake tasks they have not
p.000047: been authorized to perform. In addition, they should provide clear and timely information to both their sponsoring
p.000047: organizations and local officials and should understand that,
p.000047: if they go beyond the tasks they have been authorized to perform, they will be accountable not only within their
p.000047: own organizations but also under applicable local standards and laws.
p.000047:
p.000047: • Attention to appropriate infection control practices — Aid workers should be vigilant in adhering to infection
p.000047: control practices, both for their own protection and to prevent
p.000047: further transmission of disease. Aid 49
p.000047: workers should follow recommended protocols for monitoring symptoms and reporting their health status (including
p.000047: possible pregnancy), before, during and after their service.
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047: Influenza patient, Nepal
p.000047: Source: Tom Pietrasik, WHO
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047:
p.000047: References
p.000047:
p.000047:
p.000047: 1 Resolution WHA58.3. Revision of the International Health Regulations. In: Fifty-eighth World Health Assembly,
p.000047: Geneva, 16–25 May 2005. Resolutions and decisions, annex. Geneva: World Health Organization; 2005 (WHA58/2005/REC/1;
p.000047: http://apps.who.int/gb/ ebwha/pdf_files/WHA58-REC1/english/A58_2005_REC1-en.pdf, accessed 23 July 2016).
p.000050: 50
p.000050: 2 Addressing ethical issues in pandemic influenza planning: Discussion papers. Geneva: World Health Organization;
p.000050: 2008 (WHO/HSE/EPR/GIP/2008.2, WHO/IER/ETH/2008.1;
p.000050: http://apps.who.int/iris/bitstream/10665/69902/1/WHO_IER_ETH_2008.1_eng.pdf?ua=1, accessed 23 July 2016).
p.000050:
p.000050: 3 Guidance on ethics of tuberculosis prevention, care and control. Geneva: World Health Organization; 2010
p.000050: (WHO/HTM/TB/2010.16, http://apps.who.int/iris/ bitstream/10665/44452/1/9789241500531_eng.pdf?ua=1, accessed 23 July
p.000050: 2016).
p.000050:
...
Appendix
Indicator List
| Indicator | Vulnerability |
|---|
| HIV | HIV/AIDS |
| access | Access to Social Goods |
| access to information | Access to information |
| authority | Relationship to Authority |
| autonomy | Impaired Autonomy |
| child | Child |
| childbearing age | of childbearing age/fertile |
| children | Child |
| cioms | cioms guidelines |
| cognitive | Cognitive Impairment |
| culturally | cultural difference |
| dependent | Dependent |
| disability | Mentally Disabled |
| drug | Drug Usage |
| education | education |
| emergencies | patients in emergency situations |
| emergency | Public Emergency |
| employees | employees |
| ethnicity | Ethnicity |
| family | Motherhood/Family |
| fetus | Fetus/Neonate |
| gender | gender |
| helsinki | declaration of helsinki |
| hiv/aids | HIV/AIDS |
| home | Property Ownership |
| ill | ill |
| illness | Physically Disabled |
| impaired | Cognitive Impairment |
| influence | Drug Usage |
| job | Occupation |
| language | Linguistic Proficiency |
| liberty | Incarcerated |
| linguistic | Linguistic Proficiency |
| mentally | Mentally Disabled |
| military | Soldier |
| minority | Racial Minority |
| mothers | Mothers |
| officer | Police Officer |
| opinion | philosophical differences/differences of opinion |
| parents | parents |
| philosophy | philosophical differences/differences of opinion |
| placebo | participants in a control group |
| political | political affiliation |
| poor | Economic/Poverty |
| poverty | Economic/Poverty |
| pregnant | Pregnant |
| property | Property Ownership |
| religion | Religion |
| religious | Religion |
| restricted | Incarcerated |
| sick | Physically Ill |
| single | Marital Status |
| social status | Economic/Poverty |
| stigma | Threat of Stigma |
| stigmatization | Threat of Stigma |
| threat | Threat of Stigma |
| unconscious | Unconscious People |
| underdeveloped | Developing Country |
| union | Trade Union Membership |
| violence | Threat of Violence |
| volunteers | Healthy People |
| vulnerability | vulnerable |
| vulnerable | vulnerable |
| women | Women |
Indicator Peers (Indicators in Same Vulnerability)
| Indicator | Peers |
|---|
| HIV | ['hiv/aids'] |
| child | ['children'] |
| children | ['child'] |
| cognitive | ['impaired'] |
| disability | ['mentally'] |
| drug | ['influence'] |
| hiv/aids | ['HIV'] |
| home | ['property'] |
| impaired | ['cognitive'] |
| influence | ['drug'] |
| language | ['linguistic'] |
| liberty | ['restricted'] |
| linguistic | ['language'] |
| mentally | ['disability'] |
| opinion | ['philosophy'] |
| philosophy | ['opinion'] |
| poor | ['poverty', 'socialXstatus'] |
| poverty | ['poor', 'socialXstatus'] |
| property | ['home'] |
| religion | ['religious'] |
| religious | ['religion'] |
| restricted | ['liberty'] |
| social status | ['poor', 'poverty'] |
| stigma | ['threat', 'stigmatization'] |
| stigmatization | ['stigma', 'threat'] |
| threat | ['stigma', 'stigmatization'] |
| vulnerability | ['vulnerable'] |
| vulnerable | ['vulnerability'] |
Trigger Words
capacity
coercion
consent
cultural
developing
ethics
exploit
harm
justice
protect
protection
risk
sensitive
volunteer
welfare
Applicable Type / Vulnerability / Indicator Overlay for this Input