Research ethics and clinical trials: Fostering collaboration with research participants

Abstract

Accountability in research is a concept that applies to researchers and study participants alike. Human subjects play an active part in the success or failure of a clinical trial by virtue of their understanding of a study's goals expectations of personal gain, and adherence to study design. Trials must be designed to address patient concerns, offer an improved consent process, and move beyond our narrow conception of "patient rights." Problems with protocol adherence may be reduced by conceptualizing clinical research as an endeavor with mutual accountability within a relational ethic.

Investigation of Ethnic Differences in Willingness to Enroll in a Rehabilitation Research Registry

“…The role of personal benefit to participation in research has become more apparent in the past decade as patients take on a more active role as consumers and advocates. 20 Expectation of benefit has been positively associated with participation in other research studies and has been found to distinguish consenters from refusers in clinical trials. 21,22 The notion of personal gain (or gain for the patient from the family's perspective) is an important dynamic in the recruitment and one that is often used to encourage enrollment in research.…”