COMMUNITY GENETICS AND ETHICS PROJECTS

描述(申请人摘要)：社区遗传学和社区遗传学的目标 道德项目(CGEP)旨在加强社区参与 审议《公约》的伦理、法律和社会影响 人类基因组计划和“新遗传学”。CGEP检验假说 那就是：a)基于社区的协作将涉及广泛的 农村地区人口参与讨论经济、社会和文化权利问题；以及b) 讨论将影响参与者对这些内容的了解和态度 问题。 CGEP的目标是：向广大的个人提供信息 关于新遗传学的科学方面的一系列背景；提出 在其范围内意识到新的遗传学及其应用可能 影响人们的生活；促进关于ELSI的社区互动对话 问题；鼓励广泛参与关于 使用新的遗传学；提高专业人士对如何 新的遗传学和ELSI问题可能会在他们的工作和生活中发挥作用 他们的工作触及到的那些人；创建以社区为基础的持续区域 个人和机构在处理ELSI时使用的网络 问题；并为有意义的、 以社区为基础讨论ELSI问题。 为了实现这些目标，CGEP将举行10次务虚会(总共至少300次 参与者)、讨论小组(总共至少3200名参与者)和十个 社区论坛(总人数至少750人)，每个论坛都有 来自不同背景的人。CGEP还将：汇编和分发 个人和机构的社区资源目录；发布 通讯，由CGEP参与者提供，覆盖范围超过 该地区1,000名读者；在万维网上建立一个网站， 包括CGEP时事通讯、即将举行的当地感兴趣的活动清单、 更新的遗传学和伦理学的带注释的参考书目，并链接到 适当的网站；准备并分发给社区，政治 领导人、政策委员会和其他有关各方的最终报告，包括 关于CGEP的参与、评价和结果的信息 计划；通过正式演示在全国范围内宣传其活动 与遗传学、伦理学、法律、患者等领域的同事建立非正式的网络联系 倡导团体和以社区为基础的讨论小组；并创建评估 工具、相关材料的概要以及描述和 评估项目组件，供考虑类似项目的其他人使用 程序。

DESCRIPTION (Applicant's Abstract): The goal of the Community Genetics and Ethics Project (CGEP) is to enhance community-based participation in consideration of the ethical, legal and social implications (ELSI) of the Human Genome Project and the "new genetics." CGEP tests the hypotheses that: a) a community-based collaboration will involve a wide range of a rural region's population in discussion of ELSI issues; and b) such discussion will affect participants' knowledge of and attitudes toward these issues. The aims of CGEP are: to inform a large number of individuals from a broad array of backgrounds about scientific aspects of the new genetics; to raise awareness within its region of how the new genetics and its applications may affect people's lives; to foster interactive community dialogue about ELSI issues; to encourage widespread participation in societal decisions about use of the new genetics; to raise awareness among professionals of how the new genetics and ELSI issues may play a role in their work and in the lives of those their work touches; to create ongoing regional community-based networks for use of individuals and institutions in dealing with ELSI issues; and to create a nationally replicable model for meaningful, community-based discussion of ELSI issues. To achieve these aims, CGEP will hold ten Retreats (at least 300 total participants), Discussion Group (at least 3200 total participants ) and ten Community Forums (at least 750 total participants), each involving individuals from varied backgrounds. CGEP will also: compile and circulate a community resource directory of individuals and institutions; publish a newsletter, with contributions from CGEP participants, that reaches over 1,000 readers in the region; establish a site on the World Wide Web that includes the CGEP newsletter, listings of upcoming local events of interest, an updated annotated bibliography in genetics and ethics, and links to appropriate web sites; prepare and circulate to communities, political leaders, policy boards and other interested parties a final report including information regarding participation, evaluation and outcome of CGEP programs; make its activities known nationally, through formal presentations and informal networking to colleagues in genetics, ethics, the law, patient advocacy groups and community-based discussion groups; and create assessment tools, a compendium of relevant materials, and a manual describing and evaluating project component, for use by others considering similar programs.