Pharmacogenomic approaches to drug metabolism in American Indian/Alaska Native People

项目摘要/摘要 随着许多大型生物库和联合体的建立，并呼吁增加生物多样性 与会者认为，当务之急是制定强有力的循证办法，以支持 不同的参与者，并制定一个适当的生物伦理知情框架。家长奖助金，名为 《美洲印第安人/阿拉斯加土著(AIAN)药物代谢的药物基因组学方法》，力争 通过开发一个让所有人都参与的研究通用模型来增加基因组研究的多样性 社区。在本附录中，我们通过招募以下组织的成员来增强实现这一目标的能力 历史上代表性不足的社区分享与以下相关的重要生物伦理问题的观点 参与者参与度、结果返回和数据共享。我们将通过重新联系来确认这些人的身份 参与者参加了科罗拉多州个性化医学中心(CCPM)生物库研究，研究地点为 科罗拉多大学安舒茨医学院，他们已经同意参与基因组学 研究。使用混合方法和基于社区的参与式研究框架，我们的目标是：1) 从历史角度了解参与者参与度、结果返回和数据共享 CCPM生物库中代表不足的参与者(例如，AIAN、非裔美国人和西班牙裔/拉丁裔) 重点小组和调查；以及2)制定评估生物库参与者的跨站点框架 与生物医学研究中的生物伦理问题有关的观点和参与。将非洲人包括在内 除了AIAN社区外，美国和西班牙裔/拉丁裔参与者与父母的赠款目标保持一致 公平地参与和建设不同社区的能力。CCPM生物库提供理想的种群 对于这些活动，鉴于其多样化和不断增长的人口，独特的基础设施允许快速 参与者重新联系，并在最近几年成功地与参与者重新参与研究。最终， 这些建立证据的努力对于更广泛的科学界在文化上的发展是至关重要的 围绕参与者参与、基因组研究回报的知情生物伦理政策和框架 结果和数据共享。

Project Summary/Abstract With the establishment of many large biobanks and consortia, and calls for increasing the diversity in participants, it is imperative to develop robust evidence-based approaches to support the engagement of diverse participants and to develop a proper bioethics-informed framework. The parent grant, entitled “Pharmacogenomic approaches to drug metabolism in American Indian/Alaska Native (AIAN) People”, strives to increase diversity in genomics research by developing a general model for research that engages all communities. In this supplement, we enhance the ability to achieve this goal by recruiting members of historically underrepresented communities to share perspectives on important bioethical issues related to participant engagement, return of results, and data sharing. We will identify these individuals by recontacting participants enrolled in the Colorado Center for Personalized Medicine (CCPM) Biobank research study at the University of Colorado Anschutz Medical Campus, who have already consented to participate in genomics research. Using mixed-methods and community-based participatory research frameworks, we aim to: 1) Understand perspectives on participant engagement, return of results, and data sharing from historically underrepresented participants (e.g., AIAN, African American, and Hispanic/Latino) in the CCPM Biobank with focus groups and surveys; and 2) Develop a cross-site framework for assessing biobank participants perspectives and engagement related to bioethical issues in biomedical research. The inclusion of African American and Hispanic/Latino participants, in addition to AIAN communities, aligns with the parent grant goal to equitably engage and build capacity for diverse communities. The CCPM Biobank offers an ideal population for these activities, given its diverse and growing population, unique infrastructure that allows for quick participant recontact, and successful reengagement with participants for research in recent years. Ultimately, these evidence-building efforts are essential for the broader scientific community to develop culturally informed, bioethical policies and frameworks around participant engagement, return of genomics research results, and data sharing.