Follow Public Consultation Project

描述(由申请人提供)：这个项目将使用定性和定量的方法来评估公众和科学家对拟议的一项关于基因和环境在健康和疾病中的作用的大型美国队列研究的态度。该项目将建立在试点公众咨询项目下开发的结果、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和研究人员-参与者关系的性质，因为它们与大型队列研究有关。目标2：评估公众对为大型队列研究收集或发现的信息的态度。目的3：评估人类遗传学研究人员对拟议的大规模队列研究的态度。初步公众谘询计划所确定的事项，将透过一系列与市民共同参与的焦点小组，更详细地探讨。将特别注意在初步协商中发现的具有社会和人口特征的群体，这些群体与对大规模队列研究和参与意愿的特定看法有关。重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参考，以定量评估重点小组的调查结果。遗传学研究人员对这项大规模队列研究的看法也将通过一系列采访和调查进行评估。这将允许评估研究人员和公众在关键问题上的一致或分歧，包括研究结果的返回、同意和隐私。 公共卫生相关性：一项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卫生产生巨大的影响，但在后勤方面将是复杂和昂贵的。如果没有证据表明这项研究能够满足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这样的努力。这个项目收集了为研究设计提供信息所需的额外投入。

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.