Follow Public Consultation Project

描述（由申请人提供）：本项目将使用定性和定量方法来评估公众和科学家对一项拟议的基于美国的关于基因和环境在健康和疾病中的作用的大型队列研究的态度。该项目将以试点公众咨询项目的成果、专业知识、基础设施和研究团队为基础，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。目的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型队列研究的态度。在首次公众谘询计划中所确定的问题，我们会透过一系列与公众人士的焦点小组，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，这些群体与大型队列研究的特定观点和参与意愿有关。焦点小组的调查结果将为设计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。遗传学研究人员对这项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一致或分歧，包括研究结果的回报、同意和隐私。

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.