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Researching chronic childhood illness: the example of childhood cancer

By Mary Dixon-Woods, Bridget Young and Emma Ross


Objectives: To provide an overview of issues raised by conducting research in the area of chronic childhood illness, using the example of childhood cancer.\ud Methods: This literature review used informal methods.\ud 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\ud 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\ud 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.\ud Discussion: It is important that debates about the involvement of children in research are informed by high-quality\ud social science research and by interdisciplinary dialogue

Publisher: W.S. Maney & Son Ltd
Year: 2006
OAI identifier:

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  1. (1997). A review of psychosocial interventions for children with chronic health conditions. Pediatrics doi
  2. (1999). Association. Code of ethics and policies and procedures of the ASA Committee on professional ethics.
  3. (2006). Association. Statement of ethical practice for the British Sociological Association. Available at: [ doc /Statement%20of %20Ethical%20Practice. pdf (accessed
  4. (2001). Attitudes and impressions of participants in a study of the causes of childhood cancer. doi
  5. (2000). Can’t talk, won’t talk? Methodological issues in researching children. Sociol Res Online doi
  6. (2002). Cancer registries: should informed consent be required? doi
  7. (2000). Children as researchers: the effects of participation rights on research methodology.
  8. (1994). Children’s childhoods: observed and experienced. doi
  9. (2003). Clinical trials in pediatric cancer: parental perspectives on informed consent. J Pediatr Hematol Oncol doi
  10. (2002). Commission. Inside information. London: Human Genetics Commission,
  11. (2002). Commodifying bodies. doi
  12. (2004). Communication of randomization in childhood cancer trials. JAMA doi
  13. (1997). Constructing and reconstructing childhood. doi
  14. (2000). disclosure, and informed consent: learning from parents of children with cancer. J Pediatr Haematol Oncol doi
  15. (2002). Does research into sensitive areas do harm? Experiences of research participation after a child’s diagnosis with Ewing’s sarcoma.
  16. (1999). Doing research with children. doi
  17. (2005). Effect of media portrayals of removal of children’s tissue on UK tumour bank. BMJ doi
  18. (1998). Effects of pediatric chronic physical disorders on child and family adjustment. doi
  19. (1998). Ethical aspects of respiratory research in infancy and early childhood. Pediatr Pulmonol doi
  20. (2004). Ethical conduct of clinical research involving children. doi
  21. (2004). Ethics guide: medical research involving children. London: Medical Research Council, doi
  22. (1996). families: research and policy. doi
  23. (2003). Fatigue in adolescents with and following a cancer diagnosis: developing and evidence base for practice. doi
  24. (1999). French DNA: trouble in purgatory. Chicago: doi
  25. (2002). Gift relationships in genetics research. doi
  26. (2003). Groups potentially at risk for making poorly informed decisions about entry into clinical trials for childhood cancer. doi
  27. (2001). Health-related worries, self-image and life outlooks of long-term survivors of childhood cancer. Health Soc Work doi
  28. (1997). Human subjects protection and parental permission in adolescent health research. doi
  29. (2001). Human tissue and biological samples for use in research-operational and ethical guidelines.
  30. (1987). Impression management in kindergarten classrooms: an analysis of children’s face to face work in peer interactions. Anthropol Educ Q doi
  31. (1999). Interviewing children. Res Nurs Health doi
  32. (2003). Issues surrounding the participation of adolescents with cancer in clinical trials in the UK. doi
  33. (1988). Knowing children, participant observation with minors. doi
  34. (1997). Methodological aspects of collecting data from children: lessons from three research projects. Children Soc doi
  35. (2004). Office of National Statistics. Childhood cancer. London: Office of National Statistics,
  36. (1999). Parents’ perceptions of randomization in pediatric clinical trials. Cancer Pract doi
  37. (1998). Practitioner review: long-term consequences of childhood cancer. doi
  38. (2004). property and gift: exploring languages of tissue donation to biomedical research.
  39. (2002). Psychological outcomes in long-term survivors of childhood leukaemia, Hodgkin’s disease, and non-Hodgkin’s lymphoma: a report from the childhood cancer survivor study. Pediatrics doi
  40. (2003). Recruiting children into cancer trials, role of the United Kingdom Children’s Cancer Study Group (UKCCSG). doi
  41. (2000). Regulating human body parts and products. Health Care Analysis
  42. (2000). Relation between agendas of the research community and the research consumer. Lancet doi
  43. Research with children: perspectives and practices. doi
  44. (1998). Research with children.
  45. (2005). Rethinking childhood cancer: a multidisciplinary approach to chronic childhood illness. doi
  46. (2000). Royal College of Paediatrics and Child Health. Guidelines for the ethical conduct of medical research involving children. Arch Dis Child
  47. (1999). Social, emotional and behavioural functioning of children with cancer. Pediatrics
  48. (2001). The adolescent with cancer. doi
  49. (2001). The alienation of body tissue and the biopolitics of immortalized cell lines. Body Society doi
  50. (1996). The ethics of social research with children: an overview. Children Soc doi
  51. (1970). The gift relationship: from human blood to social policy. London: Allen and Unwin, doi
  52. The private worlds of dying children. doi
  53. (2001). The Royal Liverpool children’s inquiry report. London: Stationery Office, doi
  54. (1997). The US Pediatric Cancer Clinical Trials Programmes: the international implications and the way forward. doi
  55. (2006). The World Medical Association Policy. Available at: (accessed
  56. (1998). Theorizing childhood. doi
  57. (2002). Thrombolysis for acute ischaemic stroke: consumer involvement in design of new randomised controlled trial. BMJ doi
  58. (2002). tissue transfer and intercorporeality. Feminist Theory doi
  59. (2002). Towards a sociology for childhood: thinking from children’s lives. doi
  60. (1996). Transitions in early childhood: the promise of comparative, longitudinal ethnography. In:
  61. (2003). Tumour banks: well-guarded treasures in the interest of patients. Nat Rev Cancer doi
  62. (1996). Unbroken voices: children, young people and qualitative methods. In: Butler I, Shaw I, eds. A case of neglect? Children’s experiences and the sociology of childhood.
  63. (2002). What can the social sciences contribute to the study of ethics? Theoretical, empirical and substantive considerations. Bioethics doi
  64. (2003). What did you think about that? Researching children’s perceptions of participation in a longitudinal genetic epidemiology study. Children Soc doi
  65. (2004). Why won’t they listen to us? On giving power and voice to children participating in research. Childhood doi
  66. (2002). Working with ethical symmetry in social research with children. Childhood doi
  67. (1994). Young people, health and family life. doi

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