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CULTURAL ASPECTS OF PREVENTION TRIALS/GENETIC SCREENING

预防试验/基因筛查的文化方面

基本信息

批准号：
2114453
负责人：
TOVIA G FREEDMAN
金额：
$ 7.95万
依托单位：
UNIVERSITY OF PENNSYLVANIA
依托单位国家：
美国
项目类别：
财政年份：
1995
资助国家：
美国
起止时间：
1995-09-30 至 1998-09-29
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/2114453
关键词：
cancer prevention cancer risk human subject interview mass screening neoplasm /cancer genetics

项目摘要

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.

描述：（申请人的摘要）所提出的实施例的主要目的是为了实现本发明。研究项目，文化方面：预防试验/遗传筛查，是生成关于女性健康信念和价值观的基线数据，在临床预防试验和遗传筛查方面，乳腺癌主动获取这些数据将导致改进的、适应性更强的社会心理和政策举措，为被认为是发展中国家高风险妇女采取的干预措施乳腺癌鉴于以下情况，这一知识的产生至关重要临床预防试验的实施和鉴定一个乳腺癌易感基因。道德、社会和政治这些医学和科学领域都存在问题，进一步探索，使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遗传筛选是可理解的和可访问的。这需要在具有文化意义的背景下提供信息对自我确定的需求作出反应，和价值观该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，关于健康和疾病信仰的文化知识，民族、种族和经济多元化人口的价值观。研究方法包括：半结构式访谈、焦点小组和观察经验。研究对象包括：健康乳腺癌高危女性;乳腺癌女性，案件和伦理会议以及委员会关于人体实验的评论预计，这一结果项目将提高对癌症干预策略的认识- 预防试验和遗传筛查-通过重新构建知识，有发展风险的各种妇女亚群获得乳腺癌本研究的长期目标是研究数据将服从于未来几项研究的发展，随后启动了一项干预赠款，内容，评估知情同意程序的各种方法，最终导致随机试验。