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• 批准号: 7919369
• 负责人: David J Kaufman
• 金额: $ 78.77万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-08-24 至 2013-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7919369
• 关键词: Accountability; Address; African American; Agreement; American Indians; Attention; Attitude; Back; Belief; Biomedical Research; Characteristics; Clinical; Cohort Studies; Commit; Complex; Confidentiality; Consent; Consultations; Contracts; Data Analyses; Disease; Elements; Environment; Evaluation; Focus Groups; General Population; Genes; Genetic; Genomics; Goals; Growth; Health; Hispanic Americans; Human Genetics; Individual; Interview; Light; Methods; Modeling; Nature; Participant; Privacy; Public Health; Recurrence; Research; Research Design; Research Infrastructure; Research Personnel; Role; Scientist; Series; Social Network; Support Groups; Surveys; Technology; Time; Translations; base; cohort; data sharing; design; expectation; interest; meetings; member; optimism; programs; public health relevance; response; social; tool; willingness

DESCRIPTION (provided by applicant): This project will use qualitative and quantitative approaches to assess the attitudes of the general public and of scientists about a proposed large U.S.-based cohort study on the role of genes and environment in health and disease. The project will build on the findings, expertise, infrastructure, and research team developed under the pilot public consultation project to address key questions raised by that project. The specific aims are: Aim 1: Assess public attitudes about research and the nature of the researcher-participant relationship as they relate to large cohort research. Aim 2: Assess public attitudes about information collected for or discovered as part of large cohort research. Aim 3: Assess human genetics researchers' attitudes about the proposed large cohort study. Issues identified in the initial Public Consultation Project will be explored in more detail through a series of focus groups with members of the public. Specific attention will be given to groups with social and demographic characteristics found in the initial consultation to be associated with particular views about the large cohort study and willingness to participate. Focus group findings will inform the design of a large nationally representative survey to quantitatively evaluate focus groups findings. The views of genetics researchers about the large cohort study also will be assessed through a series of interviews and a survey. This will allow evaluation of where researchers and the public agree or diverge on key issues including return of research results, consent, and privacy. Public Health Relevance: A large cohort study on the role of genes and environment in health could have enormous public health impacts but would be logistically complex and expensive. Funders, researcher, and the public are unlikely to commit to such an endeavor without evidence that the study can meet recruitment goals and successfully collect and analyze data. This project collects additional input needed to inform the design of the study.

描述（由申请人提供）：该项目将使用定性和定量方法来评估公众和科学家对拟议的一项大型美国队列研究的态度，该研究涉及基因和环境在健康和疾病中的作用。该项目将建立在试点公共咨询项目下开发的调查结果、专业知识、基础设施和研究团队的基础上，以解决该项目提出的关键问题。具体目标是： 目标 1：评估公众对研究的态度以及与大型队列研究相关的研究人员与参与者关系的性质。目标 2：评估公众对大型队列研究中收集或发现的信息的态度。目标 3：评估人类遗传学研究人员对拟议的大型队列研究的态度。最初的公众咨询项目中确定的问题将通过一系列公众焦点小组进行更详细的探讨。将特别关注在初步咨询中发现的具有社会和人口特征的群体，这些群体与对大型队列研究的特定观点和参与意愿相关。焦点小组的调查结果将为设计一项具有全国代表性的大型调查提供信息，以定量评估焦点小组的调查结果。遗传学研究人员对大型队列研究的看法也将通过一系列访谈和调查进行评估。这将允许评估研究人员和公众在关键问题上的同意或分歧，包括研究结果的返回、同意和隐私。 公共健康相关性：关于基因和环境在健康中的作用的大型队列研究可能会对公共健康产生巨大影响，但逻辑上复杂且昂贵。如果没有证据表明该研究能够实现招募目标并成功收集和分析数据，资助者、研究人员和公众不太可能致力于此类努力。该项目收集了研究设计所需的额外信息。