Cystic fibrosis and the involvement of children in health research

This project 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 understanding of the risks and benefits of participating, and the role that they and their parents took in the decision process. Our current project, in collaboration with researchers at SickKids Hospital in Toronto, focuses on the experiences of children with Cystic Fibrosis who have participated in health research, though future work will examine the experiences of children with other diseases. To read a summary of the study results, click here.

Cystic Fibrosis: Cystic Fibrosis (CF) is the most common fatal genetic disease among individuals of European descent. One out of every 2500 babies are born with the disease, and 1 of 25 individuals carry a recessive CF allele. The most common cause of death for CF patients is due to respiratory problems associated with repeated episodes of bacterial infection of the airways. Our project is part of a collaboration with natural scientists who aim to characterize the composition and dynamics of the microbial communities found in the CF lung with the long-term goal of establishing guidelines to assist clinicians in the design and selection of therapies tailored for individual patients. However, even the beneficial outcomes of this research come with difficult ethical and social challenges. Particular issues that need to be addressed include how informed consent is managed, as it is generally provided by parents on behalf of their children, and how incidental findings are managed (for example, information identified about patients during their participation in research may later lead to them to be denied a lung transplantation). This research project will therefore engage with the CF patient community, in particular children or young adults who were enrolled in research as children, documenting their experiences and providing a conceptual analysis of the social and ethical implications of medical research in this area. It is hoped that this project will lead to improved policies in CF research and child enrollment in medical research.