FAMILY DISCLOSURE OF CANCER RISK--AN ETHNOGRAPHIC STUDY

家庭对癌症风险的披露——一项民族志研究

• 批准号: 6422840
• 负责人: Nancy PRESS
• 金额: $ 5.64万
• 依托单位: OREGON HEALTH & SCIENCE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 1998
• 资助国家: 美国
• 起止时间: 1998-07-01 至 2006-09-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6422840
• 关键词: behavioral /social science research tag; breast neoplasms; cancer risk; culture; data collection methodology /evaluation; ethics; family genetics; genetic counseling; genetic disorder diagnosis; genetic susceptibility; health care policy; human population genetics; human rights; human subject; information dissemination; social class

DESCRIPTION: The specific aims are to explore the effects and describe the experience within families of disclosure and non-disclosure of genetic risk information; to describe how information about genetic risk for breast cancer flows through a family network; to explore the significance of cultural and social class variations and other barriers or enhancers of information flow and its effects; and to explore the tensions between individual rights to privacy and moral obligations to disclose to biologic relatives. This last issue will be addressed by a policy group of major thinkers in the area of bioethics and genetic disclosure who will be convened to closely query the data collected and who will work on policy related interpretations.

描述：具体目的是探索效果并描述 家庭内披露和不披露遗传风险的经验 信息;描述有关乳房遗传风险的信息 癌症通过家庭网络传播；来探讨其意义 文化和社会阶层的差异以及其他障碍或促进因素 信息流及其影响；并探讨之间的紧张关系 个人隐私权和向生物披露的道德义务 亲属。 最后一个问题将由一个主要的政策小组来解决 生物伦理学和基因披露领域的思想家将成为 召开会议仔细询问收集到的数据以及谁将负责制定政策 相关解释。