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What is the role of ethics in outbreak response?

Research in outbreaks requires careful consideration of ethics. Watch Katherine Littler explain this more.
KATHERINE LITTLER: Firstly, it is important to note that many of the ethical issues that arise in infectious disease outbreaks are not new or necessarily unique to outbreak situations. They will and do occur in other areas of public health and research. However, infectious disease outbreaks present particular complexities and challenges.
There is a real need to make urgent decisions, often without the evidence base you would have in a normal public health or research setting, or necessarily without key facets of an ethical decision-making process. This was clearly evident in the early stages of the 2015 Zika outbreak when decisions on areas as wide-ranging as clinical care, advice around preventing pregnancy, and travel, had to be made with a lack of proven information to hand. Outbreaks often occur in countries with limited resources and undeveloped supporting infrastructure, including the necessary legal and governance structures, and fully functioning health systems.
For example, the West African countries, where the 2014 Ebola epidemic struck, had some of the weakest health systems in the world and were very ill-prepared for such an outbreak. This compounded issues associated with resource allocation, especially to vulnerable populations. The distinction between the public health response, health care, and research interventions, are not always clear-cut in outbreaks. And this creates tensions both in practise and accepted policy. For example, the rules associated with taking consent for treatment are not the same as the rules for taking consent for research, but this may not always be easy to separate out in practice in an outbreak.
During the 2014 Ebola outbreak, some samples were taken for diagnostic purposes, but now those samples are valuable in public health and scientific terms for research purposes. However, the subjects who gave the samples were not asked to give consent for research, and there is an ongoing controversy on how to proceed. There is also the added complexity that many people, in particular international staff involved in research and response, are collaborating for the first time, often in unfamiliar cultural contexts, and potentially in an environment of social unrest and uncertainty. This could mean there is a lack of time to establish trusting, equitable partnerships, and that the response is not necessarily driven by the needs of the local community.
The principles that we draw upon to assist in managing ethical issues in outbreaks are those recognisable across different outbreaks, regardless of the type of the outbreak or the context. We aim to adhere to the same ethical principles in outbreak settings as in more conventional research settings. Here are some examples of key principles. Beneficence - acts that are done for the benefit in others. In terms of public health, this is about considering what are the obligations of governments and the international community to prevent and respond to disease outbreaks. If you put this in the context of something like Zika, then the questions become what is our collective responsibility to stop the spread of vector-borne diseases like Zika.
This also calls on the need for transparency in the way we need to act to stop the spread of diseases across borders and the way we need to share data and information. Respect for persons - a central tenet is autonomy, allowing people to be informed and in a position to make their own decisions. This includes respecting confidentiality, and people’s social, religious, and cultural beliefs. Considering this, we might ask ourselves under what circumstances, if any, might it be appropriate to override an individual’s refusal of diagnostic, therapeutic, or preventative measures during an outbreak. How can vulnerability affect a person’s willingness and ability to share and receive information during an infectious disease outbreak? One example here is around informed consent under outbreak conditions.
During the 2014 Ebola outbreak, some have questioned the very concept of consent due to the fact that communication through moon suits in a local language about complex medical interventions is extremely difficult. And patients are often in a bad state or even unconscious. Liberty - encompasses freedom, including religious and political, and freedom of movement. Under what circumstances is it legitimate to restrict an individual’s freedom of movement during an outbreak? The 2003 SARS outbreak demonstrated the value and need for timely quarantine amongst other measures. Analysis of the response to this outbreak also concluded that the importance of adherence to other ethical principles, namely that the quarantine must be proportionate and done with the least-restrictive methods available.
It cannot be applied in a discriminatory manner. And reciprocity demands that those quarantined receive adequate care. Justice - this is both about fairness and equity, both in terms of distribution of resources and avoiding exploitation. The other aspect of justice is procedural justice and having fair processes for decision-making. For example, what procedural considerations apply to decisions about allocating scarce resources during an outbreak? During a 1918-type influenza pandemic, there would be a global shortage of vaccines. Policymakers should follow fair processes
to allocate vaccines as they become available: including all relevant stakeholders; be based on evidence-based arguments; and be open to revisions. To be clear, applying ethical principles should be informed by the evidence where it exists, for example, about expected harms. The way we apply ethical principles are also subjects to international frameworks, norms, and agreements, including the Siracusa Principles and SIAM’S guidelines.
The Monitored Emergency Use of Unregistered and Experimental Interventions ethical protocol, developed by the World Health Organisation during the 2014 Ebola outbreak, came to the following conclusion. In an outbreak characterised by high mortality, it can be ethically appropriate to offer experimental interventions outside clinical trials
on the following ethical grounds: respect for autonomy; the right of the individual to make their own risk-benefit assessment; beneficence; provide patients with reasonable opportunities to improve their conditions. For example, during both the 2014 and 2018 Ebola outbreaks, patients have been offered different experimental treatments, provided they have given consent, based on the assumption that the interventions would at least provide some benefits to the patients. And, as stated before, ethical decision-making needs to be supported by evidence.
So there are conditions that must be met: No proven treatment exists. It’s not possible to initiate a clinical trial. Some data on efficacy and safety is available, Approval by ethics committee and national authorities. Risks are minimised, Informed consent, and The data is rapidly shared. An excellent starting place for further inquiry into tackling ethical issues in outbreaks is the WHO Guidance for Managing Ethical Issues in an Infectious Disease Outbreak.
One of the most important aspects of any response and one of the most difficult to get right, given all the unknowns surrounding outbreaks, is preparedness. Preparedness will help responders and researchers identify ethical challenges in an outbreak setting, but, more importantly, will help build the frameworks and tools for dealing with these challenges in real time and in context. As an individual, being clear of your role and responsibilities, having a good understanding of what should be guiding your decision-making, being
able to ask yourself and your colleagues: are our decisions transparent; designed to build trust; are they inclusive; evidence-based where possible? Thinking about these types of questions and building these into your everyday activities will help the difficult situation of weighing conflicting values and principles in an outbreak setting.

In the last step, we learned about the role of research in outbreak response. In this step, Katherine Littler (WHO) will discuss the complexities of conducting research in outbreak settings and outline the key ethical principles that can guide researchers in formulating their research methods and managing challenges that arise.

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Disease Outbreaks in Low and Middle Income Countries

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