Public Perspectives and Experience Regarding Genetic Ancestry Testing

公众对基因血统测试的看法和经验

• 批准号: 8467736
• 负责人: CHARMAINE DAWN MARIE ROYAL
• 金额: $ 53.87万
• 依托单位: DUKE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-05-10 至 2015-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8467736
• 关键词: Accountability; Adult; Advocacy; Affect; Attention; Attitude; Awareness; Belief; Biological; Bundling; Cities; Clinic; Communities; Comprehension; Conceptions; Consumer Preferences; Data; Development; Disputes; Enrollment; Ethnography; Family; Focus Groups; Foundations; Future; General Population; Genetic; Genetic Services; Genetic Variation; Genetic screening method; Genomics; Health; Health Knowledge, Attitudes, Practice; Health Policy; Healthcare; Human Genetics; Immigration; Individual; Industry; Interview; Investigation; Knowledge; Laboratory Research; Leadership; Legal; Link; Literature; Marketing; Medical; Methods; Motivation; Oklahoma; Participant; Perception; Personal Genetic Information; Policies; Positioning Attribute; Race; Recommendation; Regulation; Research; Research Activity; Rights; Role; Series; Services; Shapes; Surveys; Test Result; Testing; Tribes; base; commercialization; disorder risk; ethical legal social implication; expectation; experience; improved; insight; member; non-genetic; programs; public education; response; social; tribal Nation; tribal community

DESCRIPTION (provided by applicant): Personal genetic and genomic information is becoming more widely available and affordable, generating increased discussions on the merits and dangers of direct-to-consumer (DTC) genetic testing and appropriateness of using personal genetic information in various contexts (e.g. clinics, research laboratories, courtrooms, and classrooms). While attention has focused predominately on health-related testing, conversations about DTC genetic ancestry testing and information are intensifying as well. Scholars have highlighted scientific limitations and potential ethical, legal, social, political, and psychologicl implications of genetic ancestry testing and information; however, there is a dearth of empirical data on (1) perceptions and experiences of participants in genetic ancestry testing and (2) public awareness of genetic ancestry tests. The bundling of genetic ancestry testing with health-related genetic testing by some DTC companies raises questions about perceptions of the relationship between ancestry and health. Moreover, genetic ancestry testing exacerbates concerns about misrepresentation of the relationship between ancestry and race; race and genetics; and genetics, ancestry, race, and disease risks. The central objective of this project i to broaden current understanding of the public's comprehension of, attitudes toward, and experiences with genetic ancestry testing and information. The specific aims are to 1) assess the long-term impact of genetic ancestry testing on prior participants in ancestry testing; 2) examine the conceptions and implications of genetic ancestry testing in a community-based setting, and 3) explore perspectives of the general public on genetic ancestry testing and the value of genetic ancestry information in understanding ancestry, race, identity, and health. We will use a mixed methods approach, including (1) in-depth interviews with prior research participants who had genetic ancestry testing six to eight years ago in four US cities; (2) in-depth interviews and focus groups with leaders and members of Freedmen and Tribal communities in Oklahoma; and 3) a national survey on public awareness and perceptions of genetic ancestry testing and information. Empirical data from this study will facilitate a deeper understanding of public perceptions of and responses to genetic ancestry testing and information. The findings will guide development of strategies for enhancing public education about the meaning and implications of different types of genetic information; will be valuable in shaping standards for DTC genetic ancestry testing companies; and will inform policies regarding the regulation and use of genetic ancestry testing and information in other contexts.

描述（由申请人提供）：个人遗传和基因组信息变得越来越容易获得和负担得起，引发了关于直接面向消费者（DTC）基因检测的优点和危险以及在各种情况下（例如诊所，研究实验室，法庭和教室）使用个人遗传信息的适当性的越来越多的讨论。虽然注意力主要集中在与健康有关的测试上，但关于DTC基因血统测试和信息的讨论也在加强。学者们强调了遗传血统测试和信息的科学局限性和潜在的伦理、法律、社会、政治和心理影响；然而，缺乏关于(1)基因祖先测试参与者的看法和经验以及(2)公众对基因祖先测试的认识的经验数据。一些DTC公司将基因祖先检测与健康相关的基因检测捆绑在一起，这引发了人们对祖先与健康之间关系的看法的质疑。此外，基因祖先测试加剧了人们对祖先和种族之间关系的误解的担忧；种族和基因；基因，血统，种族和疾病风险。该项目的中心目标是扩大目前公众对基因血统测试和信息的理解、态度和经验的理解。具体目的是：1)评估基因祖先检测对既往祖先检测参与者的长期影响；2)在以社区为基础的环境中研究遗传祖先检测的概念和含义，3)探索公众对遗传祖先检测的看法，以及遗传祖先信息在理解祖先、种族、身份和健康方面的价值。我们将使用混合方法，包括(1)对6至8年前在美国四个城市进行基因血统测试的先前研究参与者进行深入访谈；(2)对俄克拉何马州自由民和部落社区的领导人和成员进行深入访谈和焦点小组讨论；3)一项关于公众对基因血统检测和信息的认识和认知的全国性调查。本研究的经验数据将有助于更深入地了解公众对遗传血统检测和信息的看法和反应。研究结果将指导制定战略，以加强关于不同类型遗传信息的意义和影响的公众教育；将有助于制定DTC基因血统检测公司的标准；并将在其他情况下为有关基因血统检测和信息的监管和使用的政策提供信息。