Developing Evidence-Based Guidance for Engaging Rural Residents in the Deep South in Genomics Research: A Stakeholder-Driven Perspective

摘要 基因组学研究群体的多样化是国家的一项优先事项， 研究和改进个性化的预防、治疗和护理。定制混凝土 需要制定战略，在道德上吸引各种代表性不足的人群， 公平获得基因组发现和翻译。美国的一个地区， 战略可能特别重要的是南方农村。美国农村居民 南方经历了持续的健康差距;对遗传学的知识有限， 基因组科学;在基因组学研究中代表性不足;并且可能会受益 从基因组学的科学进步中获益。重要的是， 阻碍农村社区成员获得先进保健服务的因素， 最终延续健康不平等-可能同样损害广泛的，知情的， 参与基因组学。然而，道德，法律的，和社会影响（ELSI）的 与南方农村居民一起进行基因组学研究的方法还没有得到很好的理解。作为 因此，迫切需要让农村人口参与全方位的基因组学研究 研究建立反映其独特价值观的道德框架和准则， 偏好和优先级。拟议的研究采用了非营利组织参与的方法， 考虑到与生活经验有关的伦理、法律的、社会和文化背景 生活在南方农村的个人提供以证据为基础的指导方针， 基因组学研究和发现的翻译。本研究分为三个阶段，采用 一个连续的定性研究设计，涉及多个利益相关者，包括当地 社区成员、潜在研究参与者和内容专家 整合不同观点的过程。从社会、行为和生物学角度 科学，这项研究有可能作为一个模型，以指导其他基因组学研究 医学上代表性不足的人群，最终确定社区的最佳做法， 基因组发现的翻译。

Abstract The diversification of genomics research cohorts is a national priority intended to accelerate research and improve individualized prevention, treatment and care. Concrete, tailored strategies are needed to ethically engage various underrepresented populations to promote equitable access to genomic discovery and translation. One region of the U.S. in which such strategies are likely to be of particular importance is the rural South. U.S. residents in the rural South experience persistent health disparities; have limited knowledge about genetics and genomic science; are underrepresented in genomics research; and would likely benefit substantially from scientific advances in genomics. Importantly, the structurally embedded factors that hinder members of rural communities from accessing advances in health care—and ultimately perpetuate health inequities—might similarly impair widespread, informed, participation in genomics. However, the ethical, legal, and social implications (ELSI) of conducting genomics research with residents in the rural South are not well-understood. As such, there is a critical need to engage rural populations in the full spectrum of genomics research to establish ethical frameworks and guidelines that reflect their unique values, preferences and priorities. The proposed study employs stakeholder-engagement methods with consideration to the ethical, legal, social and cultural contexts relevant to the lived experiences of individuals living in the rural South to inform evidence-based guidelines that facilitate effective translation of genomics research and discovery. This study consists of three phases, employing a sequential qualitative research design engaging multiple stakeholders, including local community members, potential study participants, and content experts throughout the research process to integrate diverse perspectives. Drawing from the social, behavioral, and biological sciences, this study has the potential to serve as a model to guide genomics research for other medically underrepresented populations to ultimately identify best practices for community translation of genomic discoveries.