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: 7498495
• 负责人: Joseph Nicholas Cappella
• 金额: $ 41.62万
• 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 2010-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7498495
• 关键词: Address; American; Attitude; Baseline Surveys; Belief; Complex; Data; Decision Making; Disease; Elements; Face; Focus Groups; General Population; Genes; Genetic; Genetic Medicine; Genetic Research; Genetic screening method; Genetics and Medicine; 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; emotional factor; genetic discrimination; 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基因研究？他们如何决定是否参与这样的研究？拟议的研究旨在通过一项为期两年的小组研究来解决这些问题，该研究分三大阶段展开：（1）对有关知识、态度和意见进行初步的一般人口基线调查;（2）一系列有条理的网上小组讨论，在几个月的时间里，一组随机的调查参与者会面三次，以回应和讨论强调基本道德和社会问题的决策情景。参与遗传学研究;（3）一系列总结性的公众舆论调查，从审议小组的参与者以及美国人口的新样本中收集。该项目的主要目标包括：（a）获得高质量和有代表性的公众舆论数据，包括质量和数量方面的数据，这些数据涉及对遗传学研究相关问题的看法和意见;（B）建立以产生多样化、知情和有代表性的意见而闻名的审议论坛;（c）审查公众舆论通过公共讨论和审议形成时不断变化的性质;（d）测试信息框架对有关遗传数据使用、隐私、数据共享的意见以及对参与研究意愿的影响;（e）超越传统的意见调查答复，在与参与遗传学研究有关的真实选择情景背景下审查公共决策。