By Samuel Asiedu Owusu and Claudia Passos-Ferreira

Pediatric research is often designed for children but reviewed without them. When research involves children, adults make the ethical calls. They design the studies, write the consent forms, and sit on the ethics committees that approve them. They don’t always get it right. Listening to children can make studies safer and more respectful, and improve recruitment and retention because families and children will trust the process.

In our article “Licensing competent children to assist institutional review boards”, published in the Journal of Medical Ethics, we argue that licensed teenager consultants should be invited to advise ethics committees (IRBs) on pediatric protocols. Teens can see risks, burdens, and communication gaps that adults routinely miss: for example, whether a “minor inconvenience” will feel humiliating at school, or whether a data clause really protects sensitive information about sexuality, mental health, or social media use.

Are teens ready for this? Many are. By early adolescence, most young people can weigh reasons, understand personal and social benefits, and explain their choices in appropriate settings. Youth advisory models have already been adopted in research—see the International Children’s Advisory Network and EYPAGnet. Bringing selected, trained teens into IRB deliberations is a realistic next step.

In some instances, children have been invited to actively participate in adult decision-making deliberations that have a direct impact on them. For instance, in Ghana, it is common to recognize capable young people who can participate in adult-level discussion platforms, as expressed in the proverb “if a child learns how to wash his hands well, he eats with adults.” Privileged children can take advantage of the rare opportunity to articulate what concerns them most and how adults can partner with them and other stakeholders to address those concerns. Similarly, enabling and equipping competent children with the space, training, and resources to contribute to the ethical decision-making processes of proposed research will add value by enhancing the conduct of ethical paediatric research, nurturing future research ethicists, and developing research ethics training resources without corresponding harms.

Children already play important roles in every phase of the research cycle. Apart from being the focus of framing research topics and designs, they also serve as co-investigators or research participants. Performing these varied roles comes with enormous responsibilities and obligations for adult researchers and IRB members to safeguard the rights and dignity of child research actors.

For researchers, obtaining valid assent from children and providing them with the necessary resources to discharge their roles in the research requires careful consideration and multiple decision-making hurdles. For ethics committees (IRBs), approving pediatric research protocols without input from children raises ethical concerns that research stakeholders often overlook.

We sometimes reflect on the impact of global issues, like climate change and armed violence on children, that are often perpetuated by adults. Why are children rarely involved in the causes of these challenges, but appear to bear the harshest brunt of these challenges? If given the opportunity, could children make decisions that would improve their well-being, yet they are not provided with the space to participate in such decision-making? Our reflections on these and related questions led us to think deeply about the lack of children’s involvement in research ethics review processes and the potential benefits for the research community if they are allowed to serve as consultants to ethics review committees.

Our paper provides detailed insight into how we have framed these arguments and offers a framework that would help interested researchers test the feasibility of identifying and training children to participate in ethics review processes. Our model aligns with foundational principles that guide research ethics (see the Belmont Report) and with the idea that children have a right to be heard in matters that affect them (see the UN Convention on the Rights of the Child). We’re not redefining consent principle or IRB membership; we’re adding a consultative voice that improves deliberation.

Similarly, our pilot research project in Ghana has shown that trained teen consultants can engage respectfully with adult decision-makers and improve the clarity of materials aimed at young participants. The same basic template can work elsewhere with appropriate local adjustments.

This demonstrates the relevance and urgent need to include children’s perspectives in IRB processes. Embracing this approach creates an inclusive and representative model that empowers both adults and children to make accurate ethical decisions about the implementation of proposed pediatric research. It will also serve as a reference source of support for informal research gatekeepers such as school authorities, community leaders, and health administrators as they navigate the complex decision on which research will yield the maximum benefit for children.

It may be worth implementing our model or an adapted version of it in your setting. We will be extremely happy to receive your feedback and collaborate with you and other partners to refine and extend it to other jurisdictions.

Article: Licensing competent children to assist institutional review boards

Authors: Samuel Asiedu Owusu and Claudia Passos-Ferreira

Affiliation: University of Cape Coast, Ghana; New York University

Conflicts of Interest: None declared

Social media:

X: @sakowusu and @cpassosf