CULTURAL ASPECTS OF PREVENTION TRIALS/GENETIC SCREENING

描述：(申请人摘要)建议的主要目的 研究项目，文化方面：预防试验/基因筛查， 是生成关于女性健康信念和价值观的基线数据 关于临床预防试验和基因筛查 乳腺癌。积极主动地获取这些数据将导致 改进的、更具适应性的社会心理和政策倡议以及 为被认为对发展具有高风险的妇女进行干预 乳腺癌。从以下方面来看，这种知识的产生是至关重要的 临床预防试验的实施与鉴定 一种乳腺癌易感基因。伦理、社会和政治 在这些医学、科学和需求领域，人们的担忧根深蒂固 进一步探索，以便不同的妇女亚群可以受益于 这些进步。重要的是，提供的信息和计划 关于参与预防试验和基因工程的人 筛查是可理解和可获得的。这就需要 在具有文化意义的背景下展示信息 通过响应自我确定的需求来满足特定的人群 和价值观。 研究项目的目标将通过一个 民族志调查旨在提供深入的社会、心理 以及关于健康和疾病的信仰和文化知识 不同族裔、不同种族和不同经济群体的价值观。 研究方法包括：半结构化访谈、焦点小组 和观察体验。这项研究的对象包括：健康 患乳腺癌的高危妇女；患有乳腺癌的妇女和 她们的女性亲属；案件和道德问题会议以及委员会 《人体受试者综述》。预计这一结果将是 该项目将加强对癌症干预策略的了解- 预防试验和基因筛查--通过重新构建知识 面临发展风险的不同妇女群体获得的机会 乳腺癌。这项研究的长期目标是为了研究 数据将服从未来几项研究的发展，有待于 随后启动了一项干预拨款，这将测试 内容，评估知情同意程序的各种方法，以及 最终导致一项随机试验。

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.