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: 8297710
• 负责人: CHARMAINE DAWN MARIE ROYAL
• 金额: $ 47.3万
• 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/8297710
• 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. PUBLIC HEALTH RELEVANCE: Although genetic ancestry testing is typically viewed as "non-health-related" or "recreational", limited data indicate that some consumers seek genetic ancestry information for health reasons. This study will provide individual, community-based, and national data on personal, demographic, cultural, social, and other factors that might influence consumer knowledge, attitudes, behaviors, and experiences concerning genetic ancestry testing and personal genomics as a whole. These findings will inform recommendations for more comprehensive oversight of DTC genetic services, thereby improving accountability in the personal genomics industry.

个人基因和基因组信息(由申请人提供)：个人基因和基因组信息正变得更广泛和更负担得起，这引发了更多关于直接面向消费者(DTC)基因测试的优点和危险以及在各种情况下(如诊所、研究实验室、法庭和教室)使用个人基因信息的适当性的讨论。虽然人们的注意力主要集中在与健康相关的检测上，但有关DTC基因血统检测和信息的对话也在加剧。学者们强调了遗传祖先检测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)遗传祖先检测参与者的看法和经验以及(2)公众对基因祖先检测的认识的实证数据。一些DTC公司将基因血统检测与健康相关的基因检测捆绑在一起，引发了人们对血统与健康之间关系的看法的质疑。此外，基因血统检测加剧了人们对歪曲血统与种族、种族与遗传学以及遗传学、血统、种族和疾病风险之间关系的担忧。这个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。其具体目的是：1)评估基因血统测试对先前血统测试参与者的长期影响；2)在社区环境中研究基因血统测试的概念和影响；3)探讨公众对基因血统测试的看法以及基因血统信息在了解血统、种族、身份和健康方面的价值。我们将使用混合方法，包括(1)对六到八年前在美国四个城市进行过基因祖先测试的先前研究参与者进行深入采访；(2)对俄克拉荷马州自由人和部落社区的领导人和成员进行深入访谈和焦点小组；以及(3)关于公众对基因祖先测试和信息的认识和认知的全国性调查。这项研究的经验数据将有助于更深入地了解公众对基因祖先测试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含义和影响的公众教育；将在制定DTC遗传祖先检测公司的标准方面具有价值；并将为在其他情况下监管和使用遗传祖先检测和信息的政策提供参考。 与公共健康相关：尽管基因血统检测通常被视为“与健康无关”或“娱乐”，但有限的数据表明，一些消费者出于健康原因寻求基因血统信息。这项研究将提供关于个人、人口、文化、社会和其他因素的个人、社区和国家数据，这些因素可能会影响消费者关于基因血统检测和个人基因组学的知识、态度、行为和经验。这些发现将为更全面地监督DTC基因服务提供建议，从而改善个人基因组学行业的问责制。