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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

基本信息

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
项目类别：
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

项目摘要

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(申请人提供)：常见疾病的遗传易感性测试将很快普及，并成为循证医学和卫生保健服务不可或缺的组成部分。随着个性化风险评估的进步，向公众和卫生保健专业人员有效地解释和传达检测结果的风险影响也带来了额外的挑战。遗传咨询师站在解决这些和即将到来的风险沟通挑战的最前线。由于他们作为公众和越来越多的医学专业人员的教育者的角色，现在迫切需要遗传顾问能够解决新基因组时代新出现的风险沟通挑战。风险沟通技能的初步获得是在越来越多的遗传咨询计划中获得的。不幸的是，目前还没有发表的研究结果来探讨如何在经过认可的遗传咨询项目的学生中预见、教授(例如，最佳实践)和评估风险沟通。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主任如何设想、教授和评估风险沟通；2)通过电话调查评估遗传咨询毕业生如何理解风险沟通的过程并确定知识差距；3)创建一个可以整合到遗传咨询项目中的基于网络的风险沟通课程。这些目标将在一个由风险沟通专家、遗传顾问和遗传咨询项目主任组成的小组的帮助下实现；该小组将确定风险基因咨询项目中应该教授的关键主题以及如何教授它们，并帮助制定与遗传咨询主任和学生进行电话调查的方案/问题。这一发现和风险沟通课程的创建将为更好地培训遗传咨询师应对新基因组时代的风险沟通挑战提供重要进展。公共卫生相关性：这项研究的主要目标是创建一种可用于遗传咨询项目的风险沟通教育课程。该课程将通过与风险沟通专家的广泛讨论以及对遗传咨询项目主任及其学生的采访来制定。