Research Ethics Committees ethical perspectives on medical research involving children


Research ethics committees (RECs) play a crucial role in protecting children’s rights in research. But there is a lack of comprehensive research on how members of research ethics committees perceive and evaluate research involving children with serious physical illnesses, such as cancer. A recent paper published in Research Ethics reporting on research ethics committee members perspectives on pediatric research highlights the importance of recognizing both children’s rights to participation and protection. It also suggests that committee members predominantly focus on formal requirements and legal compliance in ethical review.

Research with children is essential but raises ethical issues, as most children cannot provide legal consent and may have difficulties protecting their rights in research, making them more susceptible to harm. Age-appropriate, clear and concrete study information for children, was seen by committee members as crucial in promoting children’s participation during recruitment. At the same time, the lack of, or inadequately tailored, information for children was identified as a common issue in research applications. The study suggests that efforts may be needed to improve ethical aspects related to information provision to children and obtaining their assent to participate. This is important from both a child rights perspective and a research ethics perspective. Especially since children with chronic or severe physical illnesses can be particularly vulnerable when recruited to research.

The authors found it interesting that there was significant variation among committee members themselves in how they perceived children regarding aspects related to vulnerability, decision-making capacity and the need for protection. A potential challenge, according to Kajsa Norberg Wieslander, PhD student at Uppsala University’s Centre for Research Ethics & Bioethics, and first author of the paper. “Different perspectives on children can cause value conflicts within research ethics committees. It is important that Committee members critically reflect on how they view children and how their perspectives on children can influence their ethical review. It is also important to incorporate the perspectives and experiences of children and families that are approached for research participation” says Kajsa Norberg Wieslander.

Read it here: Norberg Wieslander, K., Höglund, A. T., Frygner-Holm, S., & Godskesen, T. (2023). Research ethics committee members’ perspectives on paediatric research: a qualitative interview study. Research Ethics, 0(0).

By Märta Karlén

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Last modified: 2022-01-10