The following documents outline ethical challenges of conducting research in emergencies, including during outbreaks and for disease surveillance. We have also included links for COVID-19 specific guidance. Although the first two tools below are designed with researchers in mind, many of the recommendations are also applicable to monitoring and evaluation approaches used by programme implementers.
The Research Ethics Tool by Elrha has been designed to help researchers think through ethical issues that may arise while undertaking research in crises. It includes recommendations and considerations for each stage of the design, implementation and dissemination of research.
The Research in Global Health Emergencies report by the Nuffield Council on Bioethics aims to identify ways in which research can be undertaken ethically during emergencies. It includes an ‘ethical compass’ to help users think through ethical dilemmas arising during research (see figure 1).
The WHO guidelines on ethical issues in public health surveillance aims to help everyone involved in public health surveillance, including officials in government agencies, health workers, NGOs and the private sector, navigate the ethical issues presented by public health surveillance.
The WHO has also published guidance for COVID-19 research: Ethical standards for research during public health emergencies: Distilling existing guidance to support COVID-19 R&D The document summarizes key universal ethical standards to ensure ethical research during the COVID-19 outbreak.
This document by the UK Collaborative on Development Research (UKCDR) emphasizes the importance of safeguarding in research during the COVID-19 pandemic and outlines specific issues to consider during the current crisis. It also signposts additional useful resources.
Figure 1: Ethical Compass: 3 Core Ethical Values. Source: Nuffield Council on Bioethics 2020. Note that the diagram uses the term “research” but this ethical compass is relevant to all data collection activities.
It is likely that people who participate in COVID-19 research or standard monitoring and evaluation processes may be experiencing economical or social hardships due to the pandemic and in some cases, that they have recently lost a loved one. Data collection processes must be designed with this in mind and data collection teams should have plans in place to manage and support participants who are distressed. “Distress planning” should include identifying support mechanisms or services to which participants can be referred. Note that some Research Ethics Committees (RECs) will ask for a detailed plan of how participants will be engaged in data collection, especially regarding sensitive topics. The Wash’Em project has developed a tool to aid data collection teams with distress planning.
Below is an example of the questions you should consider prior to working with participants. Note that that tool also includes distress planning for data collectors (here termed ‘interviewers’), which is also an important consideration.
This blog by 3ie outlines some specific points that should be considered while collecting data from people during the COVID-19 pandemic. These considerations are designed to minimise the potential unintended consequences of collecting data during the pandemic and include:
Will the data collection benefit the community? Think about how participating in the data collection could benefit participants directly (e.g. being remunerated for their time or indirectly by improving response programming in their area). Let participants know how findings will be used and shared, including with them.
Will you be (falsely) raising expectations as a result of the data collection? For example, your data collection may raise expectations in relation to services that might ensue or perceived increased entitlement to services. Think about how you can mitigate against this and be clear and transparent.
How will you ensure informed consent? Data being collected remotely requires even clearer explanations for why it is being collected and how it will be used.
How will safety concerns related to COVID-19 transmission be monitored to protect participants and data collectors? This is especially important if data is being collected in person in an area with community transmission fo COVID-19.
Can you offer respondents compensation for their time? Many people in low and middle-income countries are losing their jobs and livelihoods at the moment and are having to cope with increased stress within the household. Where possible consider providing compensation for participant’s time. If you are compensating participants, it is important to ensure that it does not become coercive or manipulative, especially if there are any risks associated with the activity. If providing incentives consider where this may create unhelpful precedents for other organisations working in the area and where possible try to collaborate with the government and other organisations to make decisions on this.
How long will the data collection take? If remote phone-based data collection is being done, respondents may need their phones to communicate with others and receive information about the pandemic so surveys should not take too long. It is important to give respondents accurate estimates of how long all aspects of the data collection will take. Respondents also have other urgent priorities in their lives, including income-generating activities or caring responsibilities which should also be taken into consideration. Additionally, respondents may share their phone and may not have access to electricity to charge their phones regularly.
Are questions you ask likely to create tensions within households? Consider the fact that domestic violence is on the rise during the lockdown and that the survey should not create more risks by keeping respondents on the phone too long or asking contentious questions. Note that even the general topic of COVID-19 could be enough to create tensions, regardless of what the questions involved. Think through options to mitigate this risk.
Since COVID-19 is a new disease you may also want to consider whether your data collection team has an ethical duty to provide COVID-19 related information to participants. If so, this can be done after the interview or survey so as not to bias results. Consider whether you may need to provide COVID-19 with the following kinds of information:
Providing information about preventive behaviours - train and instruct your data collection team to give participants information about the precautions they can take to protect themselves against COVID-19. This could include information on handwashing with soap and promoting behaviours related to physical distancing.
Debunking Myths - put systems in place to correct current misunderstandings and direct respondents to accurate sources of information. This is particularly important if, during interviews, it becomes apparent that people are reporting harmful practices (e.g. consuming bleach) or that myths about how COVID-19 are being spread.
Answering FAQs - create a ‘frequently asked questions (FAQ)’ document and share this with your data collection team so that they can accurately answer questions emerging during data collection with participants.
Identifying services - compile a list of services in your local area and share this with the data collection team so that they can refer people to these services as necessary. This may include services providing food aid, mental health care or livelihood support.
Want to learn more about ethics, consent, protection and risk for COVID-19 monitoring and evaluation?