Community Voices on Health Disparities and Translational Genomics Research

社区对健康差异和转化基因组学研究的声音

• 批准号: 7937843
• 负责人: PATRICIA A. MARSHALL
• 金额: $ 49.18万
• 依托单位: CASE WESTERN RESERVE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-09-25 至 2012-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7937843
• 关键词: Address; African American; Area; Belief; Bioethics; Budgets; Child; Clinical; Communities; Economic Development; Empirical Research; Ethical Issues; Ethnic Origin; Ethnic group; Family; Focus Groups; Foundations; Genetic; Genetic Research; Genetic Variation; Genomics; Goals; Grant; Health; Health Benefit; Hispanics; Incentives; Individual; Institutes; Intervention; Interview; Knowledge; Medical; Methods; Minority Groups; Occupations; Ohio; Outcome; Participant; Policies; Population; Population Group; Population Heterogeneity; Public Health Applications Research; Race; Recommendation; Research; Research Design; Research Methodology; Risk; Role; Shapes; Training and Education; Underrepresented Minority; United States National Institutes of Health; Universities; Voice; base; community organizations; ethnic minority population; experience; health disparity; innovation; minority health

DESCRIPTION (provided by applicant): Community Voices on Health Disparities and Translational Genomics Research Challenge Area and Specific Challenge Topic: The Challenge Area this research addresses is 02: Bioethics and the Specific Challenge Topic is 02- OD9OSP-102* Ethical Issues in Health Disparities and Access to Participation in Research. Summary and Specific Aims The relevance of genomics research for addressing health disparities between population groups is currently being debated. As a practical matter, if genomics hopes to have any role in reducing health disparities, its assumptions and goals will have to make sense to the communities involved. We know very little about what underserved and minority communities that are experiencing health inequities know and think about genomic research and health disparities, and how they might inform research plans if they were invited to discuss it. This project seeks to fill that gap. We are at a critical juncture in developing translational genomic research that results in clinical and public health applications and simultaneously addresses the urgent need to reduce health disparities. Our challenge is to understand the views and concerns of underserved and minority communities in order to both identify potential barriers to translational genomics research for health disparities and develop meaningful approaches for overcoming them. The goals of this study are to examine beliefs and experiences that influence understanding of genomic research and its application to health disparities among underserved and minority populations in Cleveland, Ohio, to identify barriers to genomics research relevant to health disparities, and to develop innovative approaches for addressing these barriers through collaborative community-based partnerships. All of these goals will be accomplished by utilizing existing local, regional, and national collaborative partnerships. People's beliefs about themselves, their families, their community, and ethnic identity shape and reinforce opinions about translational genomic research and lay the foundation for any research risks or possible health benefits that might emerge for underserved and minority groups. The proposed research will help fill important gaps in our understanding of this evolving landscape, enabling us consider the diversity that exists in the meanings people give to genetic variation and genomic research, and the implications of both for reducing health disparities. This project achieves the goals of the NIH Challenge Grants by: 1) Responding to the critical need for empirical research on knowledge, beliefs, and experiences related to translational genomics research and health disparities in underserved and minority communities; 2) Collaborating with local, regional, and national partners in study design and implementation, developing innovative methods for disseminating study results, and identifying approaches that diminish barriers to genomic research and health disparities; 3) Building capacity in local communities through education and training on research methods and community-based studies; 4) Stimulating economic development in local communities; approximately 65% of the budget for this study will be used for job creation, participant incentives, and benefits for community partners. The Specific Aims of this project are listed below: Specific Aim 1: To assess knowledge, beliefs, and experiences related to genetic research and health disparities among underserved and ethnic minorities representing African-American, Hispanic, and White communities in Cleveland, Ohio. Twelve focus groups and 120 interviews will be implemented to address: a) the role of genetics in health outcomes for diverse population groups; b) benefits and harms of genomics research for individuals, families, and communities; c) targeting medical interventions to specific racial or ethnic groups; d) the potential for translational genomic research to reduce health disparities. Specific Aim 2: To engage community organizations in discussing study results, identifying and addressing challenges to the implementation of genomics research for health disparities, and preparing policy recommendation to better address the research concerns of underserved and minority populations. To achieve this aim, we will develop community-based activities with local, state, and national community partners, including: the Cleveland NAACP, the Cleveland Office of Minority Health, the Cleveland Center for Families and Children, Kirwan Institute for the Study of Race and Ethnicity at Ohio State University, the national Genetics Equity Network, and the Case Center for Reducing Health Disparities. The goals of this study are to examine beliefs and experiences that influence understanding of genomic research and its application to health disparities among underserved and minority populations in Cleveland, Ohio. We also hope to identify barriers to such research and to develop innovative approaches to address them through collaborative community-based partnerships. People's beliefs about themselves, their families, their community, and ethnic identity shape and reinforce opinions about genomic research. The proposed project will help fill important gaps in our understanding of these beliefs and their implications for reducing health disparities.

描述（由申请人提供）：关于健康差异和转化基因组学研究挑战领域和特定挑战主题的社区声音：该研究所述的挑战领域为02：生物伦理学和特定挑战主题是02- OD9OSP-102*健康差异和参与研究参与的伦理问题。摘要和具体目的是基因组学研究目前正在争论解决人群之间的健康差异的相关性。实际上，如果基因组学希望在减少健康差异中发挥任何作用，那么其假设和目标就必须对所涉及的社区有意义。我们对遇到健康不平等的服务不足和少数民族社区了解什么知之甚少，并考虑了基因组研究和健康差异，以及如果邀请他们讨论研究计划，他们将如何为研究计划提供信息。该项目旨在填补这一空白。我们在开发转化基因组研究方面处于关键关键，该研究导致临床和公共卫生应用，同时解决降低健康差异的迫切需求。我们的挑战是了解服务不足和少数民族社区的观点和关注，以确定对健康差异的转化基因组学研究的潜在障碍，并为克服它们而开发有意义的方法。这项研究的目标是检查影响对基因组研究的理解及其在俄亥俄州克利夫兰服务不足和少数群体中的健康差异的理解的信念和经验，以确定与健康差异相关的基因组学研究的障碍，并通过基于社区的社区合作伙伴关系来开发针对这些障碍的创新方法。所有这些目标将通过利用现有的本地，地区和国家合作伙伴关系来实现。人们对自己，家人，社区以及种族认同的信念形成并增强了对转化基因组研究的看法，并为任何研究风险或可能出现的健康益处奠定了基础，这可能会出现对服务不足和少数群体群体的出现。拟议的研究将有助于填补我们对这一不断发展的景观的理解，使我们能够考虑人们对遗传变异和基因组研究的意义中存在的多样性，以及两者对减少健康差异的含义。该项目通过以下方式实现了NIH挑战的目标：1）应对知识，信念和经验的实证研究的批判性需求与不受欢迎和少数民族社区的转化基因组学研究和健康差异有关； 2）与本地，地区和国家合作伙伴在研究设计和实施方面合作，开发创新的方法来传播研究结果，并确定减少基因组研究和健康差异障碍的方法； 3）通过研究和基于社区研究的教育和培训在当地社区建立能力； 4）刺激当地社区的经济发展；这项研究预算的大约65％将用于创造就业机会，参与者激励措施和社区合作伙伴的福利。该项目的具体目的如下：具体目的1：评估代表俄亥俄州克利夫兰市的非裔美国人，西班牙裔和白人社区的知识，信念和经验与遗传研究和健康差异有关的知识，信念和经验。将实施十二个焦点小组和120个访谈以解决：a）遗传学在不同人口群体中的健康成果中的作用； b）基因组学研究对个人，家庭和社区的益处和危害； c）针对特定种族或族裔的医疗干预措施； d）转化基因组研究的潜力减少健康差异。具体目的2：让社区组织讨论研究结果，确定和解决针对健康差异的基因组学研究的挑战，并准备政策建议，以更好地解决服务不足和少数群体人口的研究问题。为了实现这一目标，我们将与地方，州和国家社区合作伙伴开展基于社区的活动，包括：克利夫兰NAACP，克利夫兰少数民族健康办公室，克利夫兰家庭和儿童中心，柯万族校园和种族研究所，俄亥俄州立大学的种族与族裔研究所，国家遗传学公平网络以及案例案例中心的健康差异中心。这项研究的目标是研究影响基因组研究的理解及其在俄亥俄州克利夫兰服务不足和少数群体中的健康差异的理解的信念和经验。我们还希望确定此类研究的障碍，并通过基于社区的合作伙伴关系开发创新的方法来解决这些方法。人们对自己，家人，社区和种族认同的信念形成并增强了对基因组研究的看法。拟议的项目将有助于填补我们对这些信念的理解及其对减少健康差异的影响的重要空白。