Ethical collection of data from children during the COVID-19 pandemic

Our need to understand, quantify, forecast, track and unpack the COVID-19 pandemic fuels an insatiable need for data. While children are not the primary victims, they are significantly impacted in most areas of their lives, and will continue to be well after the pandemic is contained.

Understanding the impact on children is critical. Understanding their circumstances will be necessary for current and future predictions of impacts of the crisis on them. Collecting information that helps us determine how best to respond to similar future outbreaks is essential. There is so much we don’t know, and our children’s futures depend on us knowing.

We need to take care. We need to ensure that our desire to help, to understand, to learn and to do all of this quickly doesn’t overshadow the basic principle of ‘do no harm.’

We need children’s data, and we need it yesterday. We need data about them, and we will need to get data directly from them. This is necessary to secure the rights of children, ensure that they have a voice, are safe and protected and that their basic needs are met. Where physical distancing is in place, we will look to use both old and new tech to gather the data online or by using phones. We will explore pre-existing big data sets and try and create new ones with new tech. When the crisis is over, we may revert whole or in part to face to face interviews. Whether using primary or secondary data we will be collecting information on children because we need to.

© UNICEF/UNI322637/HasenDespite restrictions on movement due to coronavirus containment measures health workers in Al-Hasakeh city, Syria, continue to provide guidance to a refugee mother at the shelters on infant and young child feeding practices.

However, and this is a big however, we need to take care. We need to ensure that our desire to help, to understand, to learn and to do all of this quickly doesn’t overshadow the basic principle of “do no harm.” 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.

Read new Discussion Paper: Ethical Considerations for Evidence Generation Involving Children on the COVID-19 Pandemic

The risk is obvious, if we don’t consider issues like equity, justice, respect, privacy, purpose limitations and data value add, then we are at risk of negatively impacting those that we are looking to support. Without appropriate ethical reflection throughout and beyond the pandemic, a number of negative outcomes for children will likely ensue including:

  1. Significant exposure to risk of traumatization due to inappropriate questions and timing and an inability to determine where they may be within trauma and healing cycles;
  2. Difficulties responding to and ensuring an appropriate duty of care during the emergency and immediately after, if observation or disclosure of abuse occurs and/or if significant psychological/physical needs are evidenced given limited access to services;
  3. Perceived and actual privacy and confidentiality violations and data collection in excess of requirements and without appropriate and truly informed consent impacting the child and eroding the trust of children and their communities;
  4. Data obtained for one purpose, such as contract tracing, being misused for political/social surveillance;
  5. Potential reprisals against child participation or even consequent to attempts at recruitment in evidence generation, heightened during the mitigation stage of the outbreak in contexts where children are in lock-down;
  6. Poorly designed evidence generation that produces unreliable data including: a) poorly designed instruments that make incorrect assumptions relating to impacts, needs, experiences, and homogeneity of children and their experiences and, b) using technologies that may not be accessible to disadvantaged children resulting in poorly informed policies and future risk mitigation in outbreaks that fail to equitably meet children’s needs and long-term development;
  7. Missed opportunities to obtain children’s perspectives and insights – not just those considered ‘children’s issues’ – and/or prioritizing subject matter that fails to take into account children’s priorities in relation to support during COVID-19 and other future outbreaks.
© UNICEF/UNI321592/El-DalilA young girl in Cairo, Egypt, does schoolwork on a tablet while staying at home during the COVID-19 pandemic.

In all the above examples our desire to help and to understand becomes subverted by the benign neglect of the ethical imperative.

So whenever primary or secondary data collection from or about children is undertaken, explicit reflection is required on the timing, approach, necessity and transparency of the process. Consideration also should be given to privacy, representation, consent and importantly the circumstances of children.

As always it will be the most disadvantaged and marginalized children that will suffer the greatest. Whether through exclusion, surveillance or lack of access to resources and cramped conditions these cohorts are at a heightened risk of vulnerability to multiple deprivations, psychological distress and exploitation both before and after the pandemic is contained. In these and all instances our response needs to be continuous vigilance, reflection and development of mitigation strategies. In some instances, the data collection should simply not go ahead in either the short term or indeed ever. We have to be prepared to put aside our ambitions for principles, to swap idealism for the realities of context, and to be ever vigilant.

 

Gabrielle Berman is Senior Advisor, Ethics in Evidence Generation at UNICEF Innocenti. This blog builds on a new Innocenti Discussion Paper highlighting ethical considerations involving children in research on the COVID-19 pandemic. For more visit UNICEF Innocenti’s COVID-19 and children rapid research response  microsite.

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