Distrust, Race/Ethnicity, and Predictive Genetic Testing

描述(由申请人提供)：在过去的几十年里，学术界对信任和不信任的兴趣急剧增加。这种多学科的关注突出了信任如何促进和维持人际关系和组织，以及不信任如何摧毁这些相同的关系和组织。与此同时，人类基因研究的进步导致了预测未来疾病风险的基因测试的发展。预测性基因检测固有的不确定性、脆弱性和对未来的影响表明，信任和不信任将在决定这项新技术是否成功转化为改善健康结果方面发挥重要作用。此外，鉴于历史背景和目前的媒体报道，可能已经存在与预测性基因测试有关的不信任，特别是在种族和族裔少数群体中。 这个项目的总体目标是增加对与预测性基因测试相关的信任和不信任的性质、分布和相关性的理解，并调查信任/不信任、基因测试及其交付的属性和接受预测性基因测试的意愿之间的关系。在我们的初步概念模型中，与预测性基因测试相关的信任和不信任是多维结构，它包含了关于预测性基因测试是否将用于个人最佳利益的信念。这些结构的组成部分由如何以及由谁使用基因测试来定义。该项目的重点是非洲裔美国人、高加索人和拉丁美洲人，以阐明不信任与族裔/种族之间的关系，并解决历史上处于不利地位的少数群体之间的不信任遗留问题。 我们提出了一个定性和定量相结合的三阶段项目。在第一阶段，我们将通过全面的文献回顾、焦点小组、访谈和咨询专家咨询小组来完善我们的概念模型。在第二阶段，我们将开发一种心理测量学工具来衡量与预测性基因测试相关的信任和不信任。在第三阶段，我们将对非裔美国人、高加索人和拉丁裔成年人进行全国调查，以衡量不信任、不信任的潜在相关性，以及不信任、基因测试及其交付的属性和接受测试的意愿之间的关系。为了实现这些目标，我们组建了一个由生物伦理学、遗传学、心理测量学和调查研究专家组成的研究团队，以及一个包括非裔美国人和拉美裔社区利益相关者在内的多学科咨询小组。

DESCRIPTION (provided by applicant): Scholarly interest in trust and distrust has increased sharply over the last several decades. This multidisciplinary attention has highlighted how trust facilitates and sustains human relationships and organizations and how distrust can destroy these same relationships and organizations. Concurrently, progress in human genetic research has led to the development of genetic tests that predict the risk of future disease. The uncertainty, vulnerability, and implications for the future inherent in predictive genetic testing suggest that trust and distrust will play important roles in determining whether this new technology is successfully translated into improved health outcomes. Furthermore, given the historical context and the current media coverage, distrust related to predictive genetic testing may already exist, particularly among racial and ethnic minorities. The overall goals of this project are to increase understanding of the nature, distribution, and correlates of trust and distrust related to predictive genetic testing and to investigate the relationship among trust/distrust, attributes of a genetic test and its delivery, and willingness to undergo predictive genetic testing. In our preliminary conceptual model, trust and distrust related to predictive genetic testing are multidimensional constructs that encompass beliefs about whether or not a predictive genetic test will be used in one's best interest. The components of these constructs are defined by how and by whom the genetic test may be used. The project focuses on African-American, Caucasian and Latino populations in order to elucidate the relationship between distrust and ethnicity/race and to address the legacy of distrust among historically disadvantaged minorities. We propose a three phase project using qualitative and quantitative methods. In Phase One, we will refine our conceptual model through comprehensive literature review, focus groups, interviews and consultation with an expert advisory panel. In Phase Two, we will develop a psychometrically sound instrument to measure trust and distrust related to predictive genetic testing. In Phase Three, we will conduct a national survey of African-American, Caucasian, and Latino adults to measure distrust, potential correlates of distrust, and the relationship between distrust, attributes of the genetic test and its delivery, and willingness to undergo testing. To accomplish these goals, we have assembled an investigator team of experts in bioethics, genetics, psychometrics, and survey research, as well as a multidisciplinary advisory panel that includes stakeholders from the African-American and Latino communities.