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

制定循证指南，让南方腹地的农村居民参与基因组学研究：利益相关者驱动的视角

• 批准号: 10449207
• 负责人: Faith Elizabeth Fletcher
• 金额: $ 15.52万
• 依托单位: BAYLOR COLLEGE OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-07-12 至 2024-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10449207
• 关键词: Accountability; Alabama; Attention; Behavioral Sciences; Biological Sciences; Caring; Collaborations; Collection; Communities; County; Data; Deep South; Ethics; Focus Groups; Genetic; Genomics; Goals; Grant; Guidelines; Health; Healthcare; Impairment; Individual; Informed Consent; Institutional Review Boards; Knowledge; Medical; Mentored Research Scientist Development Award; Mentors; Methods; Modeling; Participant; Phase; Process; Qualitative Research; Recommendation; Reproducibility; Research; Research Design; Research Institute; Research Personnel; Rural; Rural Community; Rural Population; Sample Size; Scientific Advances and Accomplishments; Social Sciences; Structure; Training; Translations; Underrepresented Populations; United States National Institutes of Health; biobank; cohort; ethical legal social implication; evidence base; evidence based guidelines; experience; genome sciences; health disparity; health inequalities; improved; individualized prevention; marginalized population; member; multidisciplinary; preference; programs; recruit; rural counties; rural dwellers; rural underserved

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.

摘要