Researching chronic childhood illness: the example of childhood cancer

Abstract

Objectives: To provide an overview of issues raised by conducting research in the area of chronic childhood illness, using the example of childhood cancer. Methods: This literature review used informal methods. Results: Children with cancer and their families may participate in a wide variety of studies in different research traditions, including social science studies, epidemiological, biological and genetic research, and clinical trials. Different concerns about research participation have been raised in these different contexts. Sociological debate has tended to characterize exclusion from research as a manifestation of assumptions of poor competence on the part of children, and to see inclusion in research as a means of restoring proper balance in power relations and giving children a voice. The ethical imperative within clinical research, on the other hand, has been in favour of protection of individuals from risk or direct harm. Lack of consensus on issues such as the status of children's consent for research participation persists, in part because debates have taken place within rather than across disciplinary boundaries, and in part because of a tendency to debate issues as ethical principles in an empirical vacuum. The lack of research on the experiences and views of those asked to take part in childhood cancer research is striking. Discussion: It is important that debates about the involvement of children in research are informed by high-quality social science research and by interdisciplinary dialogue.