Why Patients Continue to Participate in Clinical Research

Abstract

A growing body of data suggests that patients enroll in clinical research for multiple reasons^1-10: they hope to benefit personally, often hope to help others, and trust those who conduct the research. In contrast, there are few data on why patients continue to participate in clinical research.^11,12 Why do patient participants, especially those randomized to a control group, continue to accept the added risks and burdens, eg, additional clinic visits and extra research procedures, that clinical research places on them? Answering this question is especially important given the view that clinical research inappropriately exploits patient participants by exposing them to added risks and burdens for the benefit of others.^13,14 This process, it is claimed, fails to respect patient participants as persons. Instead, clinical research treats patient participants as if they were things, objects, or even guinea pigs, used for the benefit of others, without concern for the participants' own goals and interests. For example, in a widely cited article, Jonas¹⁵ argues that clinical research turns patients into “a thing—a passive thing merely to be acted on.”