St. Michael’s Cystic Fibrosis Study: Experiences of Research Participation of Adults who have Cystic Fibrosis

The purpose of the current study is to understand the ethical and psychosocial aspects of long term involvement in biomedical research. Although ethics protocols have been developed to protect the rights of individuals participating in biomedical research, the changing landscape of this research (i.e., biobanks and long-term cohort studies) has raised new challenges with respect to the adequacy of these practices. Faced with these new advances, it is essential to conduct systematic studies into the lived experiences of populations participating in biomedical research in order for Research Ethics Boards to make informed decisions about the research involvement of such populations.

A key aspect of the proposed study is to gain an understanding of the perspectives towards research participation across the lifespan. This project will specifically focus on the remembered experiences of adults with Cystic Fibrosis (CF) regarding their participation in research related to their illness when they were children. Individuals with CF are in a unique position of being able to give an account of different and equally important perspectives pertaining to the ethics of research involvement. Most patients with CF are involved in biomedical research from a very early age. Therefore, many patients with CF may be well aware of the burdens and possible risks of research participation. On the other hand, patients with CF may also be aware of the tremendous advances achieved through biomedical research because of the important impact the results of this research have had in extending their lives.