Making Every Voice Count: Public Consultation on Genetics, Environment and Health

人类基因组计划的完成，独特的遗传研究资源的创建，以及 强大的基因组分析技术的发展，为揭开基因 对健康和疾病的贡献。然而，许多人类疾病是复杂相互作用的产物。 基因和环境之间的关系。NHGRI和政府顾问已经确定创建一个 美国收集环境暴露、遗传风险因素、生活方式和医疗信息的纵向研究 来自数十万美国人的经验具有独特的价值。在政治上，对这样的研究 其严重性和后果要求公众支持--或者至少不是积极反对--其承诺。 从道德上讲，这样的研究应该与公民合作设计和进行，在希望和 寻求、适当考虑和解决普通公民的关切。 这项提议的目标是获得广泛的社会投入，为设计和实施 可能对基因和环境在健康和健康中的作用进行大型美国纵向队列研究 疾病。该项目有三个具体目标：1)开发和评估描述 大型队列研究的目标和设计考虑因素；2)评估公众对建议的态度 个人层面的队列研究；以及3)让公民和社区领导人评估态度和 开展以社区为基础的社区管理试点办法。 本次试点将采用定性和定量相结合的方法，提供丰富的、具有代表性的 评估公众的态度，并让公众参与关于可能的大型 队列研究。试点将在五个地理和人口统计不同的地点进行，如下 以及在全国范围内使用具有代表性的样本。该项目将探索具体的研究设计元素和 参与者、社区和社会所感受到的好处和风险；让社区领导人参与； 评估促进公民对话和公众咨询的方法；并召开公民咨询会议 为大型队列研究提供指导和评估这些方法的有效性的专家小组。

The completion of the human genome project, the creation of unique genetic research resources, and the development of robust genome analysis technology, have provided powerful tools to unravel the genetic contribution to health and disease. Yet, many human diseases are the product of complex interactions between genes and environment. The NHGRI and government advisors have identified the creation of a U.S. longitudinal study to collect environmental exposures, genetic risk factors, lifestyle, and medical experiences from hundreds of thousands of Americans as uniquely valuable. Politically, a study of such enormity and consequence requires that the public support - or at least not actively oppose - its undertaking. Ethically, such a study should be designed and undertaken in cooperation with citizens, after the hopes and concerns of ordinary citizens are sought, duly considered, and addressed. The goal of this proposal is to obtain wide societal input to inform the design and implementation of a possible large U.S.-based longitudinal cohort study of the role of genes and environment in health and disease. The project has three specific aims: 1) Develop and evaluate informational materials describing the goals and design considerations of the large cohort study; 2) Assess public attitudes about the proposed cohort study at the individual level; and 3) Engage citizens and community leaders to assess attitudes and pilot test methods of initiating community-based dalogue. This pilot project will use qualitative and quantitative methods to provide a rich and representative assessment of the public's attitudes and to engage the public in an initial dialogue about a possible large cohort study. The pilot will be conducted in five geographically and demographically distinct locations, as well as nationally using a representative sample. The project will explore specific study design elements and the perceived benefits and risks to participants, communities, and society; engage community leaders; evaluate methods of stimulating citizen dialogue and public consultation; and convene a citizens' advisory panel to provide guidance and assess the effectiveness of these methods for a large cohort study.