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Navigating the challenges of recruiting children with cancer for research

2023-04-27

Each year, more than 40 000 children worldwide are diagnosed with cancer and research is vital to improve treatment, survival and quality of life for these children. But, recruitment of children for research comes with ethical challenges. A recent paper in BMC Medical Ethics points to the need for balancing ethics and empathy, and the roles of children and parents in shared decision-making.

A pediatric cancer diagnosis brings psychological distress for the family. Recruiting to research can add a layer of ethical challenges, for example when there is urgency to start the child’s treatment and the family have difficulties understanding information about research. The study aimed to explore healthcare professionals’ perceptions on ethical values, challenges and research ethics competence when it comes to recruiting children for research. The study was explorative, using semi-structured interviews with physicians and nurses involved in pediatric oncology research. The result provides empirical insights about ethical concerns when children with cancer are recruited. According to the authors, physicians and nurses pointed to ethical challenges around building relationships and trust, fulfilling the families’ needs for information, handling vulnerability, and balancing different roles and interests. In the interviews, healthcare professionals emphasized the importance of ensuring ethical competence, and highlighted the significance of interpersonal communicative skills and ethical aspects related to care.

“Balancing the roles of children and parents in shared decision-making about research can be challenging because of conflicting interests, power asymmetries and dependence” says Kajsa Norberg Wieslander, PhD student from CRB, and lead author. According to her the result shows that an effort to build research ethics, both on an individual and organisational level, is important. In particular if we want to ensure that the rights and interests of children with cancer are protected in research”. 

Read it here: Norbäck, K., Höglund, A.T., Godskesen, T. et al. Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences. BMC Med Ethics 24, 23 (2023). https://doi.org/10.1186/s12910-023-00901-4

By Märta Karlén

Last modified: 2024-03-19