IRB: Ethics & Human Research
Speaking about Silence: The Need to Hear from Research Subjects
In Silent Partners: Human Subjects and Research Ethics, Rebecca Dresser extends her work on research ethics and the experience of illness into fruitful new territory, arguing that experienced research subjects can make significant contributions to the design, conduct, and oversight of clinical trials. Silent Partners covers a vast territory of literature, encompassing conceptual and empirical scholarship and even looking at depictions of research subjects in literary fiction. The book examines the experiences of patient-subjects and professional guinea pigs and addresses domestic and global research. Dresser’s fundamental message—that investigators and the research oversight enterprise should listen more closely, speak more carefully, and attend to the collaborative contributions that subjects can make—is in one sense obvious, but in another, increasingly difficult to act on, as investigators struggle to enroll subjects, data validity is challenged, and the oversight system becomes more entangled in regulatory complexities.
Key words: human research subjects, research ethics, investigators in human research