ENGAGING MINORITY COMMUNITIES IN GENETICS POLICY MAKING

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)组成的联盟实施，建立在最初项目的基础上，该项目开展了一系列公共对话，制定政策建议，以指导与生殖决策有关的基因组技术的使用。更新项目将制定一个进程，促使不同社会经济水平的少数群体参与有关基因组研究及其技术的道德和政治问题的理性民主审议进程，并将制定关于使用和应用基因组研究和技术的法律、专业标准和机构政策的建议。密歇根州和华盛顿/巴尔的摩的15个非洲裔美国人和拉美裔社区组织将确定焦点小组的参与者，并在“家乡”社区举行一系列五次对话会议。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。所有小组参与者参加的区域社区政策会议将把对话小组的成果转化为具体的政策建议。将分析建议及其制定过程，并向公众、政策制定者、健康教育工作者和从业人员传播建议和经验教训。社区咨询委员会将为项目的所有阶段提供投入，由参与该项目的社区组织派代表参加。将使用定性和定量的方法来评估过程和结果，并与最初的项目进行比较。

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.