title: Influences upon willingness to participate in schizophrenia research: an analysis of narrative data from 63 people with schizophrenia.
abstract: Schizophrenia affects more than 1% of the world's population, causing great personal suffering and socioeconomic burden. These costs associated with schizophrenia necessitate inquiry into the causes and treatment of the illness but generate ethical challenges related to the specific nature and deficits of the illness itself. In this article, we present a systematic analysis of narrative data from 63 people living with the illness of schizophrenia collected through semistructured interviews about their attitudes, beliefs, and experiences related to psychiatric research. In the comments of these individuals, half of whom had had prior personal experience in research protocols, we identified factors influencing openness toward research involvement as well as deterrents that appear to lessen interest in participation. Clear response pattern differences emerged between those with prior research experience and those without such experience. In the discussion, we explore the key findings and outline the implications for safeguards in mental illness research.
authors.affiliation: Institute for Ethics, MSCII 6095, 1 University of New Mexico, Albuquerque, NM 87131-0001, USA. akaminisky@salud.unm.edu
authors.forename: Alexis
authors.initials: A
authors.lastname: Kaminsky
authors.forename: Laura Weiss
authors.initials: LW
authors.lastname: Roberts
authors.forename: Janet L
authors.initials: JL
authors.lastname: Brody
mesh_terms: D002985:Clinical Protocols; D032984:Ethics, Research; D007722:Health Knowledge, Attitudes, Practice; D006805:Human Experimentation / Q000941:ethics; D006801:Humans; D007258:Informed Consent; D007407:Interviews as Topic; D028642:Persons with Psychiatric Disorders / Q000523:psychology; D009042:Motivation; D010358:Patient Participation; D035842:Research Subjects / Q000523:psychology*; D018570:Risk Assessment; D012559:Schizophrenia; D035502:Trust