Public Opinion Deliberation and Decision Making about Genetics Research

遗传学研究的舆论审议与决策

• 批准号: 7687639
• 负责人: Joseph Nicholas Cappella
• 金额: $ 39.61万
• 依托单位: UNIVERSITY OF PENNSYLVANIA
• 依托单位国家: 美国
• 财政年份: 2007
• 资助国家: 美国
• 起止时间: 2007-09-22 至 2011-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7687639
• 关键词: Address; American; Attitude; Baseline Surveys; Belief; Complex; Data; Decision Making; Disease; Elements; Ethics; Face; Focus Groups; General Population; Genes; Genetic; Genetic Medicine; Genetic Research; Genetic screening method; Goals; Informed Consent; Knowledge; Modeling; Nature; Online Systems; Participant; Patients; Phase; Physicians; Policies; Policy Maker; Population; Predictive Factor; Privacy; Public Opinion; Recruitment Activity; Research; Research Personnel; Resources; Role; Sampling; Series; Shapes; Structure; Subgroup; Surveys; Testing; Time; data sharing; emotional factor; genetic discrimination; meetings; population survey; research study; response; social; willingness; Address; American; Attitude; Baseline Surveys; Belief; Complex; Data; Decision Making; Disease; Elements; Ethics; Face; Focus Groups; General Population; Genes; Genetic; Genetic Medicine; Genetic Research; Genetic screening method; Goals; Informed Consent; Knowledge; Modeling; Nature; Online Systems; Participant; Patients; Phase; Physicians; Policies; Policy Maker; Population; Predictive Factor; Privacy; Public Opinion; Recruitment Activity; Research; Research Personnel; Resources; Role; Sampling; Series; Shapes; Structure; Subgroup; Surveys; Testing; Time; data sharing; emotional factor; genetic discrimination; meetings; population survey; research study; response; social; willingness

DESCRIPTION (provided by applicant): How do ordinary Americans make sense of genetic research? How might they decide whether or not to participate in such research? The proposed study aims to address these questions, in a two-year panel study unfolding in three broad phases: (1) an initial, general-population baseline survey of relevant knowledge, attitudes and opinions; (2) a structured series of web-based group deliberations, whereby a random subset of survey participants meet three times over several months to respond to and discuss decision scenarios highlighting basic ethical and social issues implicated in genetics research; and (3) a series of concluding public opinion surveys, gathered from participants in the deliberative groups as well as from a fresh sample of the U.S. population. Key goals of the project include: (a) obtaining high-quality and representative public opinion data, of both a qualitative and quantitative nature, on beliefs and opinions about issues surrounding genetics research; (b) constituting deliberative forums known to produce diverse, informed, and representative opinion; (c) examining the changing nature of public opinion as it takes shape through public discourse and deliberation; (d) testing the impact of information framing on opinions about uses of genetic data, privacy, data sharing, and on willingness to participate in research; and (e) moving beyond conventional opinion-survey responses, by examining public decision making in the context of authentic choice scenarios related to participation in genetics research.

描述（由申请人提供）：普通美国人如何理解遗传研究？他们如何决定是否参加此类研究？拟议的研究旨在解决这些问题，在一项为期两年的小组研究中，该研究分为三个广泛的阶段：（1）对相关知识，态度和观点的初步，一般人群的基线调查； （2）一系列基于Web的小组审议的结构化系列，其中随机的调查参与者在几个月内会遇到三次，以响应和讨论决策情景，突出了与遗传学研究有关的基本道德和社会问题； （3）从参与者的参与者以及美国人口的新样本中收集的一系列总结舆论调查。该项目的主要目标包括：（a）关于围绕遗传学研究的问题的信念和观点，获得了定性和定量性质的高质量和代表性的公众舆论数据； （b）构成已知的审议论坛，这些论坛会产生多样化，知情和代表性的意见； （c）检查公众舆论的不断变化的性质，因为它通过公共话语和审议来塑造； （d）测试信息框架对遗传数据，隐私，数据共享以及愿意参与研究的意见的影响； （e）通过在与参与遗传学研究有关的真实选择方案的背景下检查公共决策，超越了传统的观点调查。