Building capacity to guide disclosure of genomic research results in CKiD

项目摘要 该项目名为“建设能力以指导CKiD基因组研究结果的披露”， 生物伦理研究和生物伦理能力建设。儿童慢性肾脏病（CKiD） 研究正在制定政策，以披露个人基因组研究结果，但受到不确定性的挑战， 能够为个人参与者提供准确和有效的结果。我们的建议应对了这一挑战 通过为父母提供有关CKiD基因组研究结果的信息支持， 关于这些数据的分析有效性、临床有效性和/或实用性的问题。一个多学科 团队包括具有基因组研究伦理学专业知识的研究人员和家长咨询小组成员 将与健康传播媒体专家合作，制作一系列关于以下概念的短视频： 泄露基因研究数据该提案还将根据经验证的 工具，与视频一起使用，以评估父母对基因组研究结果披露的看法 在CKiD。我们会透过现有的架构，招募150名CKiD家长参与短片和调查 关于CKiD研究有关知情家长观点的调查数据将指导CKiD的政策制定 向参与者及其家人披露个人研究结果。

PROJECT SUMMARY This project entitled, “Building Capacity to Guide Disclosure of Genomic Research Results in CKiD”, is specific both to bioethics research and capacity building in bioethics. The Chronic Kidney Disease in Children (CKiD) Study is developing policies to disclose individual genomic research results, yet challenged by uncertainties in being able to provide accurate and valid results to individual participants. Our proposal addresses this challenge by developing informational support for parents about genomic research results in CKiD with acknowledgement of the concerns regarding the analytic validity, clinical validity, and/or utility of these data. A multidisciplinary team including researchers with expertise in genomic research ethics and members of a parent advisory group will work with health communication media experts to produce a series of short videos on concepts related to disclosing genetic research data. The proposal will also develop and administer surveys, based on validated tools, to be used with the videos to assess parent perspectives regarding disclosure of genomic research results in CKiD. We will recruit 150 CKiD parents to participate in the videos and surveys through the existing structure of the CKiD study. The survey data on the informed parent perspectives will guide policy development for CKiD to disclose individual research results to participants and their families.