Assessing Risk Communication Educational Practices in Genetic Counseling Programs

评估遗传咨询项目中的风险沟通教育实践

• 批准号: 7841895
• 负责人: ISAAC M LIPKUS
• 金额: $ 27.6万
• 依托单位: DUKE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2008
• 资助国家: 美国
• 起止时间: 2008-08-01 至 2012-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7841895
• 关键词: Address; Adopted; Alleles; Anxiety; Area; Behavior; Behavioral Genetics; Chronic Disease; Communication; Communication Tools; Complex; Consensus; Counseling; Data; Decision Making; Development; Diabetes Mellitus; Disease; Education; Educational Curriculum; Educational Materials; Educational process of instructing; Elements; Environmental Risk Factor; Evaluation; Evidence Based Medicine; Future; Genes; Genetic; Genetic Counseling; Genetic Markers; Genetic Polymorphism; Genetic Predisposition to Disease; Genetic Risk; Genetic screening method; Genome; Genomics; Goals; Health Professional; Heart Diseases; Influentials; Inheritance Patterns; Interview; Knowledge; Lead; Medical; Medical Genetics; Medicine; Mental Depression; Methods; Modeling; Nature; Online Systems; Patients; Perception; Pharmacogenetics; Phase; Prevention; Preventive; Process; Professional counselor; Protocols documentation; Psyche structure; Public Health; Publishing; Research; Risk; Risk Assessment; Role; Screening procedure; Standardization; Students; Surveys; Telephone; Telephone Interviews; Testing; Training; United States; disorder risk; gene function; genetic profiling; graduate student; health care delivery; improved; insight; programs; psychological distress; public health relevance; skill acquisition; skills; tool

DESCRIPTION (provided by applicant): Genetic susceptibility testing for common diseases will become widespread soon and form an integral component of evidence-based medicine and health care delivery. With advances in personalized risk assessments come the added challenges of effectively interpreting and communicating the risk implications of test findings to the public and health care professionals. Genetic counselors are at the forefront of addressing these and forthcoming risk communication challenges. Due to their role as educators to the public and increasingly to medical professionals, it is now imperative that genetic counselors be able to address the emerging risk communication challenges in the new genomics era. Initial acquisition of risk communication skills is obtained in the growing number of genetic counseling programs. Unfortunately, there are no published findings exploring how risk communication is envisioned, taught (e.g., best practices) and evaluated among students in accredited genetic counseling programs. Due to the lack of these data, this study aims to: 1) identify through telephone surveys how directors of 26 accredited genetic counseling programs in the United States envision, teach and assess risk communication, 2) assess through telephone surveys how graduating genetic counseling students understand processes of risk communication and identify knowledge gaps, and 3) create a web-based risk communication curriculum that can be integrated into genetic counseling programs. These aims will be accomplished with the aid of a panel consisting of experts in risk communication, genetic counselors and directors of genetic counseling programs; the panel will identify critical themes that should be taught in risk genetic counseling programs and how to teach them as well as help create the protocol/questions for the telephone surveys with genetic counseling directors and students. Findings and the creation of a risk communication curriculum will provide important advances to better train genetic counselors for the risk communication challenges in the new genomics era. PUBLIC HEALTH RELEVANCE: The main goal of this study is to create a risk communication education curriculum that can be used across genetic counseling programs. The curriculum will be developed through extensive discussions with experts in risk communication and interviews with directors of genetic counseling programs and their students.

描述（由申请人提供）：常见疾病的遗传易感性检测将很快普及，并成为循证医学和医疗保健服务的一个组成部分。随着个性化风险评估的进步，有效地向公众和医疗保健专业人员解释和传达测试结果的风险影响也带来了挑战。遗传咨询师处于解决这些和即将到来的风险沟通挑战的最前沿。由于他们作为教育者的作用，以公众和越来越多的医疗专业人员，它现在是当务之急，遗传咨询师能够解决新的基因组学时代出现的风险沟通的挑战。风险沟通技巧的初步收购是在越来越多的遗传咨询计划获得。不幸的是，目前还没有公开的研究结果探讨如何设想风险沟通，教授（例如，最佳实践），并在经认可的遗传咨询项目中对学生进行评估。由于缺乏这些数据，本研究旨在：1）通过电话调查确定美国26个经认证的遗传咨询项目的负责人如何设想，教授和评估风险沟通，2）通过电话调查评估即将毕业的遗传咨询学生如何理解风险沟通的过程并确定知识差距，以及3）创建一个基于网络的风险沟通课程，可以整合到遗传咨询计划中。这些目标将在由风险沟通专家、遗传咨询师和遗传咨询项目主任组成的小组的帮助下实现;该小组将确定风险遗传咨询项目中应教授的关键主题以及如何教授这些主题，并帮助创建遗传咨询主任和学生电话调查的协议/问题。研究结果和创建一个风险沟通课程将提供重要的进展，以更好地培训遗传咨询师的风险沟通的挑战，在新的基因组学时代。 公共卫生相关性：本研究的主要目标是创建一个风险沟通教育课程，可以在整个遗传咨询计划使用。该课程将通过与风险沟通专家的广泛讨论以及与遗传咨询项目主任及其学生的访谈来开发。