Follow Public Consultation Project

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美国大型基于队列研究的基因和环境在健康和疾病中的作用。该项目将利用公共协商试点项目的调查结果、专门知识、基础设施和研究小组，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研究者与参与者关系的性质，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型队列研究的态度。我们会透过一系列与公众人士组成的焦点小组，更详细探讨初步公众谘询计划所提出的问题。将特别关注在初步咨询中发现的具有社会和人口统计学特征的群体，这些群体与大型队列研究的特定观点和参与意愿有关。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信息，以定量评价重点小组的调查结果。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：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，但在后勤上会很复杂，而且费用很高。资助者、研究人员和公众不太可能在没有证据表明该研究能够达到招募目标并成功收集和分析数据的情况下做出这样的努力。该项目收集了为研究设计提供信息所需的额外输入。

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.