Ethical Considerations for Evidence Generation Involving Children on the COVID-19 Pandemic

"Whether we are considering using apps for contact tracing, or thinking of asking children via social media platforms about their day to day lives in lock-down, we need to do so with a critical lens on our belief that we will do good through the data collection." - Gabrielle Berman

Understanding the impact of COVID-19 on children through tools like studies, surveys, and polls is important to ensure that their rights are secured, that their basic needs are met, and, in general, that they have a voice in the context of this and similar future outbreaks. Yet, ethical issues may arise in relation to the collection, analysis, and communication of evidence. The United Nations Children's Fund (UNICEF) holds that ethical conduct in evidence generation is an imperative to mitigate against potential harms to children, both during and after the pandemic. This paper from the UNICEF Office of Research - Innocenti identifies key ethical considerations when undertaking evidence generation involving children during the mitigation/emergency stage of the COVID-19 pandemic, on subject matter relating to COVID-19 once the pandemic has been contained, and during the post-emergency phase.

As noted here, there are specificities related to COVID-19 that need to be taken into account in unpacking potential ethical issues related to research involving children: (i) The spread of COVID-19 has been a protracted process, with mandatory lockdowns that have potentially isolated families for extended periods of time; and (ii) in a number of countries, these lockdowns occur in contexts of overcrowding and inadequate sanitation and health infrastructure, which are leading, or are likely to lead, to greater social and economic strain in the economically poorest contexts.

In this context, the paper explores the direct and indirect impacts of COVID-19 on children, especially vulnerable children, during and after the COVID-19 pandemic that researchers need to consider. For example, where child safeguarding and other relevant child services and supports are available online, they may not be accessible to certain children, further reinforcing inequities in contexts where children's access to technologies is limited or where privacy is difficult to secure. This would certainly be true of children who are living on the street, who also are likely not to have access to information regarding protective measures or to any communal resources (soap, clean running water, gloves). They are also more likely to be visible within less crowded streets and therefore at greater risk of violence and exploitation.

Though it is crucial to explore these and other impacts, without appropriate ethical reflection throughout and beyond research on the pandemic, negative outcomes for children could ensue. These outcomes include, for example, privacy and confidentiality violations, such as data collection in excess of requirements and without appropriate and truly informed consent, which could harm the child and erode the trust of children and their communities. Also, poorly designed evidence generation might produce unreliable or inaccurate data through use of technologies that may not be accessible to disadvantaged children, resulting in poor representation, further marginalisation of disadvantaged groups, and/or inappropriate or inaccurate findings. Thus, in some instances, UNICEF stresses, data collection should simply not go ahead.

In short, whenever primary or secondary data collection from or about children is undertaken, UNICEF stresses that explicit reflection is required on the timing, approach, necessity, and transparency of the process. Consideration also should be given to privacy, representation, consent, and the circumstances of the specific children involved. Issues to be considered in this context, which are explored in the paper, include:

• Assessing institutional capacity to involve children in research ethically
• Understanding power relations
• Weighing harms and benefits
• Securing informed consent (in appropriate form and language)
• Ensuring privacy and confidentiality
• Thinking through payment, compensation, ancillary services, and reciprocity
• Communicating findings appropriately - here, for example, suggestions include:
  • When collecting information necessary to inform emergency service delivery, consider limiting the sharing of findings to relevant service provider personnel, being mindful of the potential for stigma and discrimination if the information is disseminated more broadly.
  • Where data fail to capture marginalised or hard-to-reach populations explicitly, note this in findings, and be clear on the implications for these cohorts and for programming and policy. Use the findings to advocate for specific resources to ensure that these data are collected as soon as possible.
  • Should evidence be generated using big data sets comprising children's data, consider, for instance, privacy measures such as aggregation of findings and non-inclusion of identifying quotes.
  • In the contexts of delivery of emergency services and critical supports, ensure that the data should be used explicitly and exclusively to support the well-being of children.

Organised along each of the above categories, Table 1 outlines/summarises key ethical considerations for undertaking evidence generation on COVID-19 involving children during the emergency and recovery phase; Table 2 looks at the post-emergency phase.