RUBIKS

Ethical and clinical aspects of recruiting children with cancer to research

Survival rates for childhood cancer have improved remarkably past decades. This progress is partly due to high participation in clinical trials among children and youths with cancer. However, involving minors in research raises many ethical issues related to recruitment and informed consent. A cancer diagnosis impacts the lives and wellbeing of children and their families and they become dependent on healthcare. Making decisions about research, which might significantly impact the child’s life and health, in the midst of a distressing and sometimes acute life situation can be challenging for families. In recruitment, ethical dilemmas may also arise between adressing children’s vulnerability and needs for protection and their rights to participation in decisions that affect them. Reconciling care and research obligations can also cause ethical value conflicts and role conflicts among nurses and physicians delivering care and conducting research in parallel.

Knowledge about children’s actual role, experiences and needs in decision-making about research is limited, especially in Sweden. Best practices for designing study information and assent for children are yet to be established and a contextually informed understanding of the specific vulnerabilities among children with cancer during recruitment need to be developed. Best practices for recruitment should be supported by well-founded ethical justification, and informed by the perspectives of those concerned. This project therefore incorporates the experiences of healthcare professionals and researchers in childhood cancer care, research ethics committees and children with cancer and their parents. The goal is to develop ethically informed practical guidance for recruitment. The project uses empirical methods (qualitative interviews) in combination with theoretical ethical analysis.