Building capacity to guide disclosure of genomic research results in CKiD

建设指导 CKiD 基因组研究结果披露的能力

• 批准号: 10366290
• 负责人: Bradley Alan Warady
• 金额: $ 15.52万
• 依托单位: CHILDREN'S MERCY HOSP (KANSAS CITY, MO)
• 依托单位国家: 美国
• 财政年份: 2003
• 资助国家: 美国
• 起止时间: 2003-09-30 至 2023-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10366290
• 关键词: Address; Attitude; Benefits and Risks; Bioethics; Child; Chronic Kidney Failure; Clinical; Clinical Investigator; Communications Media; DNA; DNA Repository; Data; Disclosure; Disease; Ethics Committees; Family; Feedback; Focus Groups; Future; Genetic; Genetic Research; Genomics; Goals; Guidelines; Individual; Kidney Diseases; Learning; Learning Module; Mind; Parents; Participant; Policies; Policy Developments; Procedures; Renal function; Research; Research Ethics; Research Personnel; Research Project Grants; Sampling; Series; Structure; Surveys; Technology; Testing; Time; Uncertainty; Validity of Results; Work; base; clinically relevant; design; epidemiology study; health communication; instrument; member; multidisciplinary; preference; privacy protection; recruit; tool

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.

项目概要 该项目名为“建设指导 CKiD 基因组研究结果披露的能力”，具体内容 儿童慢性肾病 (CKiD) 的生物伦理学研究和能力建设。 研究正在制定政策来披露个体基因组研究结果，但受到不确定性的挑战 我们的提案能够为个体参与者提供准确且有效的结果来解决这一挑战。 通过为家长提供有关 CKiD 基因组研究结果的信息支持并予以致谢 关于这些数据的分析有效性、临床有效性和/或实用性的担忧。 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的成员 将与健康传播媒体专家合作，制作一系列有关健康传播概念的短视频 该提案还将根据经过验证的数据开展和管理调查。 与视频一起使用的工具，以评估家长对基因组研究结果披露的看法 我们将通过现有的结构招募 150 名 CKiD 家长参与视频和调查。 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。