CULTURAL ASPECTS OF PREVENTION TRIALS/GENETIC SCREENING

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DESCRIPTION: (Applicant's Abstract) The primary purpose of the proposed research project, Cultural Aspects: Prevention Trials/Genetic Screening, is to generate baseline data regarding women's health beliefs and values with respect to clinical prevention trials and genetic screening for breast cancer. The proactive acquisition of these data will lead to improved, more adaptable psychosocial and policy initiatives and interventions on behalf of women considered high risk for developing breast cancer. The generation of this knowledge is critical in light of the implementation of clinical prevention trials and the identification of a breast cancer susceptibility gene. Ethical, social and political concerns are embedded in these areas of medicine and science and need further exploration so a diverse subpopulation of women can benefit from these advances. It is important that information and programs offered to people regarding participation in prevention trials and genetic screening be comprehensible and accessible. This necessitates the presentation of information in a context that is culturally meaningful to specific subpopulations by being responsive to self-identified needs and values. The goal of the research project will be accomplished through an ethnographic inquiry designed to provide in-depth social, psychological and cultural knowledge regarding the health and illness beliefs and values of an ethnically, racially and economically diverse population. The research method includes: semi-structured interviews, focus groups and observational experiences. Subjects for the study include: healthy women who are high risk for breast cancer; women with breast cancer and their female relatives; case and ethics conferences and the Committee on Human Subjects Review. It is expected that the results of this project will enhance understanding of cancer intervention strategies - prevention trials and genetic screening - by reframing knowledge for access by diverse subpopulations of women who are at risk for developing breast cancer. The long-term goal of this study is for the research data to be amenable to the future development of several studies, to be followed by the initiation of an intervention grant which would test content, assess various approaches to informed consent procedures, and eventually lead to a randomized trial.