Distrust, Race/Ethnicity, and Predictive Genetic Testing

描述（由申请人提供）：在过去的几十年里，对信任和不信任的学术兴趣急剧增加。这种多学科的关注强调了信任如何促进和维持人际关系和组织，以及不信任如何破坏这些关系和组织。与此同时，人类基因研究的进展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的健康结果方面发挥重要作用。此外，考虑到历史背景和当前的媒体报道，与预测性基因检测相关的不信任可能已经存在，特别是在种族和少数民族中。

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.