Inflammatory bowel disease and the involvement of children in health research

Similar to the Cystic Fibrosis study, this project also looks at children's experiences of participating in biomedical research. The main focus is on the social and ethical implications of large long-term research studies, in which children are enrolled at an early age. Although there is evident benefit to society from these children's involvement in the research, the ethical implications are not clear, as children are enrolled before they are old enough to meaningfully provide informed consent. Interviews with children who have participated in such research will help us to learn more about their experience as a research participant, their process for deciding whether to participate, their interpretations of the risks and benefits of participating, what participating in research means to them and the role that they and their parents took in the decision process. Our current project, in collaboration with clinicans and researchers at the Children's Hospital of Eastern Ontario in Ottawa, focuses on the experiences of children with Inflammatory Bowel Disease (IBD) who have participated in health research. To read a summary of the study results, click here.

Inflammatory Bowel Disease (IBD): is a debilitating gastrointestinal disorder affecting a wide population of children, adolescents and adults in Canada. IBD describes a group of conditions including Crohn’s disease (CD) and ulcerative colitis (UC), both of which result in an inflammation of one’s gastrointestinal tract. There are almost 201,000 Canadians living with IBD: 112,000 with CD and 88,500 with UC. Canada has among the highest reported prevalence and incidence of IBD in the world. The involvement of children in biomedical research has always been controversial, partly because of difficulties in operationalising rights of autonomy in research ethics protocols. While debates about the involvement of children in biomedical research continue on an abstract level, systematic empirical studies of the lived experience of patients involved in research are required. Most IBD patients are involved in biomedical research from a very early age, with consent provided by parents or guardians. Therefore, many IBD patients may be well aware of the burdens and possible risks of research participation. IBD patients are thus in a unique position of being able to give an account of different and equally important perspectives pertaining to the ethics of children’s research involvement.