Family linkage studies are ongoing in attempt to identify genes associated with schizophrenia susceptibility. Little is known about what investigators disseminate to families regarding these complex studies and what families understand and expect from participation. It is unknown if and/or how families anticipate that linkage findings will affect them personally or mental health consumers at large. As part of a larger study intended to explore the impact of a potential gene discovery on stigma associated with schizophrenia and the cultural factors that may influence this process, this paper describes participant recall, understanding, and expectations related to the dissemination of linkage study results. This question is addressed through an exploratory, qualitative design. Approximately 30 participants are being recruited from an existing linkage study population at Johns Hopkins University. This population consists of families in which there are more than one member affected with schizophrenia. Family members of affected individuals complete one semi-structured telephone interview consisting of a series of open-ended questions. Data is undergoing thematic analysis in order to generate testable hypotheses. Since the participant population includes both Jewish and non-Jewish families, comparisons are being made between self-identified cultural groups and between parents and siblings of the affected individual. Findings from this study highlight the impact of the informed consent process for complex-disease related linkage research. Moreover, findings from this study improve our understanding of the anticipated impact of genetic findings related to schizophrenia and will shape education and counseling strategies for a population with familial schizophrenia.
Learning Objectives: N/A
Keywords: Mental Health, Genetics
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.