Perspectives of patients with schizophrenia and psychiatrists regarding ethically important aspects of research participation

Objective: Significant controversy surrounds the ethics of psychiatric rese arch. Nevertheless, few data have been gathered to improve our understandin g of how individuals with serious mental illness and psychiatrists view eth ically important aspects of biomedical research participation. Method: The authors assessed views of clinically diagnosed patients with schizophrenia from three sites by means of structured interviews and views of psychiatris ts at two sites with written surveys regarding attitudes affecting motivati on to participate in biomedical research, attitudes related to autonomy and influences on participation decisions, and attitudes toward the inclusion of vulnerable populations in research. The schizophrenia patients were aske d to indicate their personal views; the psychiatrists were asked to provide their personal views and to predict schizophrenia patients' views. Respons es were compared by using repeated measures multivariate analysis of varian ce. Results: Sixty-three patients with schizophrenia and 73 psychiatry facu lty and residents participated. Overall, responses to 23 rated attitudes re vealed remarkably similar rank orders and several areas of agreement betwee n patients and psychiatrists. Both groups strongly supported schizophrenia research and autonomous decision making by participants, They saw helping o thers and helping science as important reasons for protocol participation, Patients endorsed the feeling of hope associated with research involvement, a perspective underestimated by psychiatrists. Psychiatrists also underest imated the patients' acceptance of physician, investigator, and family infl uences on participation decisions. Psychiatrists agreed more strongly than patients that vulnerable populations should be included in research. Conclu sions: This study helps to characterize previously neglected attitudes of p sychiatric patients and clinicians toward ethically important aspects of bi omedical research participation. Schizophrenia patients offered highly disc erning views, and interesting similarities and differences emerged in compa ring responses of patients and psychiatrists.