The Meanings of Helping: An Analysis of Cystic Fibrosis Patients’ Reasons for Participating in Biomedical Research

Abstract

Research participants often report wanting to help as a reason for participation, but who they want to help and why is rarely explored. We examined meanings associated with helping among 21 adults with cystic fibrosis (CF)—a group with high participation in research. Meanings included helping to advance research, helping others with CF, helping as their job, helping themselves, helping because they are special, and helping to give back. While some meanings were primarily oriented toward helping others, some also involved hoping for benefits for oneself, and some included feelings of responsibility. Despite indicating that they understood that research is not designed to help them directly, participants nevertheless hoped that it might. We discuss implications for research ethics oversight.