GENOME TECHNOLOGY & REPRODUCTION--VALUES & PUBLIC POLICY

描述（改编自研究者摘要）：本项目 代表了一种努力，让部分公众提前了解 新兴的遗传学技术，向外行和专业人士学习 社区如何看待这项技术，并与这些 社区在制定法律、机构政策、专业 实践标准和临床决策的应用。 虽然将纳入道德操守专家和法律/政策方面的投入， 决策者，关于使用这一新兴的政策建议， 技术将建立在公众广泛而多样的观点基础上 和医疗服务系统。该项目将侧重于 提高预测性状和疾病易感性的能力， 怀孕早期和怀孕前，以及使用 与生育决策有关的新兴技术。 该项目提议制定一个政策制定程序 包括仔细衡量公众的态度和价值观， 亚组（患者、少数民族、妇女、专业人员等）。数据和 分析将利用重点小组的综合阶段完成， 调查，社区对话，以及政策之间的沟通过程- 制造商和社区代表。传播活动将 包括一次决策者和公众会议，以及 出席各种专业团体的会议或与之协调会议 与卫生法和医学伦理学有关;出版物将 针对专业和决策受众， 相关期刊。该项目将以社区对话为基础 已开发并用于俄勒冈州健康决策的模型 在密歇根州和印第安纳州的Just Caring项目。这些 将努力利用以前关于公共和 专业态度和临床应用。

DESCRIPTION (Adapted from the Investigator's Abstract): This project represents an effort to give segments of the public an advance look at the emerging genetics technology, to learn from lay and professional communities how they feel about the technology, and to work with these communities in formulating laws, institutional policies, professional standards of practice, and applications to clinical decision-making. While input will be incorporated from ethics experts and law/policy makers, policy recommendations regarding the use of this emerging technology will be grounded in the wide and diverse views of the public and the health care delivery system. The project will focus on the increasing ability to predict traits and predisposition to disease at ever-earlier stages of pregnancy and prior to conception, and the use of the emerging technology in connection with reproductive decisions. The project proposes to develop a process for policy formulation including careful measurements of attitudes and values of the public and subgroups (patients, minorities, women, professionals, etc.). Data and analysis will be accomplished using integrated phases of focus groups, surveys, community dialogues, and a communication process between policy- makers and community representatives. Dissemination activities will include a conference for policy-makers and the public, as well as presenting at or coordinating meetings with various professional groups associated with health law and medical ethics; publications will be directed to both professional and policy making audiences through relevant journals. This project will build upon community dialogue models that have been developed and used in the Oregon Health Decisions project and the Just Caring projects in Michigan and Indiana. These efforts will utilize findings from previous work regarding public and professional attitudes and clinical applications.