In this blog, Research and Development Officer Dr Vanessa Malila, explores the importance and complexity of research ethics during the COVID-19 pandemic.
“Humanities and social science researchers play a crucial role in epidemic preparedness and response. Their studies provide insight into the social context of outbreaks. This knowledge can help us to adapt and improve our response to outbreaks.” (Joao Rangel de Almeida)
The current global crisis caused by the COVID-19 pandemic has highlighted the need for rapid and responsive clinical, scientific and health research. What has taken a back seat in the response to COVID-19 has been development research and research that aims to understand the social context of the current pandemic. As a result, many of the guidelines and standards on ethical preparedness are tailored to clinical research.
This does not mean, however, that social and development research is not being conducted or should not be prioritized during this critical period. Instead, researchers and those working in the humanitarian sectors should work towards ensuring that they continue to conduct essential social and development research using ethical standards and guidelines that are specific to the social aspect of this complex global crisis.
Ethical issues to think about
There are a number of issues related to carrying out social and development research during the COVID—19 pandemic, but some key questions that need to be asked are concerned with what journalists used to call the 5W’s and H – Who, What, Where, When, Why and How? Who can and should be central to social research? What kinds of research are possible and what will the research tell us that is essential to known now? Where can research take place in a safe and responsible manner? When should research be carried out and is it more responsible to wait until the pandemic has been overcome? Why is social research essential to overcoming the crisis? How is data currently being used and where are the gaps in essential social and development research?
Even before researchers are able to think about the ways in which research can realistically, safely and responsibly be carried out, it is important to think about the ethics of carrying out research that aims to dig into the behaviour, attitudes and practices of individuals in a context where accessibility is an issue for both the researcher and the participants.
“The world now presents a case of inaccessible fields, making us think about the field in isolation, the field in lock down. It also reminds us about how borders, barriers and fields that were always inaccessible due to conflicts or remote geographic locations, are now even more so that the researchers themselves are under lockdown and unable to move.” (Zahra Hussain)
Research ethics is a complex issue at any time, but during a pandemic, the issues become more complicated and require not only thinking about psychological and cultural concerns but also serious health concerns. The Nuffield Council on Bioethics has proposed an ethical compass which might be useful as a framework for doing research during the pandemic. The compass is made up of three values: 1) equal respect; 2) helping to reduce suffering; and 3) fairness. “The three values provide a tool for thinking through whether ethical principles routinely applied to certain kinds of research, such as standards for informed consent, requirements for ethical review, and the importance of meaningful community engagement, might legitimately be adapted” for the current crisis.
Some of the ethical issues which are heightened during this period relate to:
- Privacy of data: During a period when data sharing and access to data could be a powerful tool to overcome the pandemic, there is also the need to balance data collection with privacy rights and protection, particularly of vulnerable and marginalized communities/populations. This is particularly true of digital technology and the use of participant data.
- Consent: The challenge with consent is not limited to the inability to physically get verbal and written consent from participants, but also heightened by the need to respect participants; ensure that their involvement is justified; and ensure that a feedback mechanism is built into any research process.
- Balancing benefits and risks: The difficulties in including vulnerable groups in research on COVID-19 means it may be easier to justify their exclusion. However, this may skew results that show only one side of a very multi-sided picture.
Resources for researchers to conduct ethical research
What we also need to remember as researchers is that we don’t need to reinvent the ‘ethics wheel’ – research has been conducted in crisis situations before and we can learn from them. For example, during the Ebola crisis, during major humanitarian and disaster situations research has been conducted under extremely limited and restricted environments and we should learn as much from them as possible. The biggest value that social and development research can play during this pandemic is not to think about how we can do research but what are the most important questions to ask, how can data be used effectively and is there value in using this crisis to pause and consider our positions are researchers rather than jumping into more positions of power?
Here are some useful links to resource documents and websites that address research ethics during the COVID-19 pandemics.
- ALNAP COVID-19 Resource portal
- The Global Health Network Epidemic Ethics resource
- Nuffield Council on Bioethics
- Social Science in Humanitarian Action Platform
- Centre for Education and Research in Humanitarian Action COVID-19 resources
- https://www.who.int/blueprint/priority-diseases/key-action/liverecovery-save-of-ethical-standards-for-research-during-public-health-emergencies.pdf
- Research on Covid-19 and Faith (HAD Blog)
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