Communicating Genetic Test Results to the Family

向家人传达基因检测结果

• 批准号: 6917214
• 负责人: MARY Beryl DALY
• 金额: $ 30.42万
• 依托单位: FOX CHASE CANCER CENTER
• 依托单位国家: 美国
• 财政年份: 1999
• 资助国家: 美国
• 起止时间: 1999-07-15 至 2009-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6917214
• 关键词: age difference; behavioral /social science research tag; belief; brca gene; cancer risk; clinical research; communication; comprehension; coping; decision making; education evaluation /planning; family genetics; family structure /dynamics; gender difference; genetic counseling; genetic disorder diagnosis; genetic susceptibility; health behavior; human subject; interview; neoplasm /cancer diagnosis; neoplasm /cancer education; neoplasm /cancer genetics; social perception

DESCRIPTION: (provided by applicant) The recent isolation of hereditary cancer genes will provide precise biomarkers of cancer susceptibility for clinical use in determining an individual's risk for cancer. These biomarkers are unique because they not only define risk for an individual, but for their family members as well. We have found that relatives with whom genetic test information is shared often do not understand the meaning of the test result and are not able to formulate appropriate risk management strategies for themselves. The current study is targeted directly to the at-risk relatives of individuals receiving informative BRCA results, i.e., true positive or true negative test results, to help prepare the relatives to receive and understand the significance of the genetic information for their own health. The main goal is to create, deliver and evaluate a set of support materials that will complement the information received directly from the proband to enhance the communication of genetic risk information. Based on the Common Sense Model of Health Behavior, this complementary intervention will be compared to the standard of care, in which test results are communicated by the proband undergoing testing. Primary outcome measures will include understanding and interpretation, confidence in coping with, and behavioral response to the genetic risk information shared. We have chosen to focus on those families with true positive or negative test results because this information may have immediate clinical management consequences for the relatives, and because it is in keeping with the mission of the cancer genetic counselor to extend their reach to additional family members at risk for an inherited condition. In addition this work will provide an opportunity to explore a set of variables which may mediate the comprehension and response to the information shared within the family. Our immediate goal is to test a theory-driven intervention in a well characterized setting. Our long-term goal is both to advance the field of cancer communication science and to create a bridge to the development of practice guidelines and the diffusion of best practice to the genetic counseling community.

描述：（由申请人提供）最近分离遗传性癌症基因将为确定个人患癌症风险的癌症易感性提供精确的生物标志物。这些生物标志物是独一无二的，因为它们不仅为个人定义了风险，还为其家人定义了风险。我们发现，与之共享基因测试信息的亲戚通常不了解测试结果的含义，并且无法为自己制定适当的风险管理策略。当前的研究直接针对获得信息丰富的BRCA结果的个体的处于危险的亲属，即真正的正面或真实的测试结果，以帮助准备亲戚接收并理解遗传信息对自己的健康的重要性。主要目标是创建，交付和评估一系列支持材料，这些支持材料将直接从概率收到的信息进行补充，以增强遗传风险信息的通信。基于健康行为的常识模型，将将这种互补干预措施与护理标准进行比较，在该标准中，该检验结果进行了测试。主要的结果指标将包括理解和解释，对应对的信心以及对共享遗传风险信息的行为反应。我们选择专注于那些具有真正正面或负面测试结果的家庭，因为此信息可能会对亲戚产生立即的临床管理后果，并且因为它符合癌症遗传顾问的使命，以将其覆盖范围扩展到其他家庭成员有继承状况的风险。此外，这项工作将为探索一组变量提供机会，这些变量可以调解对家庭中共享的信息的理解和响应。我们的直接目标是在特征良好的环境中测试理论驱动的干预措施。我们的长期目标既是推进癌症传播科学领域，又是为实践指南的制定以及将最佳实践扩散到遗传咨询社区的桥梁。