ENGAGING MINORITY COMMUNITIES IN GENETICS POLICY MAKING

让少数群体参与遗传学政策制定

• 批准号: 6662391
• 负责人: Toby Citrin Citrin
• 金额: $ 14.25万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 1995
• 资助国家: 美国
• 起止时间: 1995-08-18 至 2004-09-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6662391
• 关键词: African American; Hispanic Americans; attitude; behavioral /social science research tag; community; decision making; ethics; fertility; genetic counseling; genetic disorder diagnosis; genetic screening; health care policy; health care professional practice; human subject; prenatal diagnosis; psychological values; public opinion; socioeconomics

This renewal project, conducted by a consortium of three universities (University of Michigan, Michigan State University and Howard University) builds upon the initial project which conducted a series of public dialogues developing policy recommendations to guide the use of genome technology related to reproductive decision-making. The renewal project will develop a process for engaging minority populations of diverse socioeconomic levels in the process of rational democratic deliberation on moral and political issues relating to genome research and its resulting technology, and will develop recommendations for laws, professional standards and institutional policies regarding the use and application of genome research and technology. 15 African American and Latino community-based organizations in Michigan and Washington/Baltimore will identify participants for focus groups and for a series of five dialogue sessions held in the "home" communities. Focus groups will identify a menu of issues of concern, and dialogue sessions will discuss the issues and develop recommendations. Regional community policy meetings attended by all group participants will convert dialogue group output into specific policy recommendations. Both the recommendations and the process used in their development will be analyzed, with dissemination of recommendations and lessons learned to the public, policy-makers, health educators and practitioners. A Community Advisory Board, with representation from community-based organizations participating in the project, will provide input to all project phases. Qualitative and quantitative methods will be used to evaluate both process and outcome, with comparisons to the initial project.

这一更新项目由三所大学（密歇根大学、密歇根州立大学和霍华德大学）组成的财团进行，以最初的项目为基础，该项目进行了一系列公共对话，制定政策建议，以指导使用与生殖决策有关的基因组技术。更新项目将制定一个程序，让不同社会经济水平的少数民族参与到与基因组研究及其产生的技术有关的道德和政治问题的理性民主审议过程中，并将制定有关基因组研究和技术使用和应用的法律、专业标准和制度政策的建议。密歇根州和华盛顿/巴尔的摩的15个非裔美国人和拉丁裔社区组织将确定焦点小组和在“家乡”社区举行的一系列五次对话会议的参加者。焦点小组将确定一系列令人关切的问题，对话会议将讨论这些问题并提出建议。所有小组成员参加的区域社区政策会议将把对话小组的产出转化为具体的政策建议。将对建议及其制定过程进行分析，并向公众、决策者、卫生教育工作者和从业人员传播建议和经验教训。由参与该项目的社区组织代表组成的社区咨询委员会将为项目的所有阶段提供投入。定性和定量方法将用于评估过程和结果，并与初始项目进行比较。