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

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，分三个阶段解决这些问题：(1)对相关知识、态度和意见进行初步的一般人口基线调查；(2)一系列结构化的基于网络的小组讨论，其中随机抽取一部分调查参与者在几个月内会面三次，以回应和讨论强调遗传学研究中涉及的基本伦理和社会问题的决策情景；(3)从审议小组的参与者以及美国人口的新样本中收集的一系列结论民意调查。该项目的主要目标包括：(a)获得关于遗传学研究相关问题的信念和观点的高质量和具有代表性的定性和定量民意数据；(b)组成能够提出不同、知情和具有代表性的意见的审议论坛；(c)研究公众舆论在公众讨论和审议中形成的变化性质；(d)测试信息框架对基因数据使用、隐私、数据共享和参与研究意愿的影响；(e)通过在与参与遗传学研究相关的真实选择情景的背景下检查公共决策，超越传统的意见调查回应。