CONCEPTUAL FRAMEWORKS FOR GENETICS POLICY

描述（改编自研究者摘要）：目的 这个项目是分析各种概念框架， 制定有关遗传学研究、咨询 检测、筛选、治疗和使用遗传信息。 的 项目将探索几种理论模型，用于全面监管 医学遗传学：个体健康模式， 权利模式、公共卫生模式和平等机会模式。 该项目将广泛审查有关社会学、 人类学、心理学、经济学和其他实证研究 分析采用一种模式对个人的可能影响， 另 特别是，该项目将分析各种类型的 遗传学研究和服务对个人的身体和情感 幸福感和自我概念，对他们的个人关系， 他们与雇主等社会机构的关系， 保险公司学校和司法系统 它将评估， 根据现有的研究结果，有足够可靠的 对个人有特殊风险的证据，以保证采用 政策来防范这些风险。 它将分析在多大程度上 现有和拟议的政策（包括专业人员的准则） 组织和法院案件，以及州和联邦法规 和法规），要么试图防止风险， 或提供赔偿， 伤害就会变成现实 它将审查在多大程度上， 为了防止已识别的风险，这些政策可能会产生其他风险。 风险 它将审查现有和拟议的 政策，并分析政策在多大程度上适合 四个理论模型，以及可能的影响是什么， 采取一套全面的政策， 替代模型。 通过这些努力，该项目将提供一个 遗传学领域政策发展的基础，使每个新的 不需要在临时基础上处理这些问题。 该项目将在《世界人权宣言》中产生一系列以政策为导向的文章， 医学、法律的和卫生政策文献; 专业和学术团体;以及一本提供分析的书 遗传学研究和服务对个人的影响， 分析拟议和现有的政策， 遗传学研究和服务给个人带来的风险，以及 为制定最适当的方法进行理论分析 遗传学政策。

DESCRIPTION (Adapted from the Investigator's Abstract): The purpose of this project is to analyze various conceptual frameworks for the development of policy with respect to genetics research, counseling, testing, screening, treatment and use of genetic information. The project will explore several theoretical models for overall regulation of medical genetics: the individual health model, the fundamental rights model, the public health model, and the equal opportunity model. The project will undertake an extensive review of relevant sociological, anthropological, psychological, economic, and other empirical studies to analyze the likely impact on individuals of adopting one model versus another. In particular, the project will analyze the impact of various types of genetics research and services on individuals' physical and emotional well-being and self-concept, on their personal relationships, and on their relationships with societal institutions such as employers, insurers, schools, and the justice system. It will assess whether, based on the results of existing studies, there is sufficiently reliable evidence of particular risks to individuals to warrant the adoption of policies to guard those risks. It will analyze the extent to which existing and proposed policies (including guidelines of professional organizations and court cases, as well as state and federal regulations and statutes) either attempt to prevent the risks that have been identified in the empirical literature or to provide reparation when harms materialize. It will examine the extent to which, in attempting to prevent the identified risks, the policies potentially create other risks. It will examine the values implied in the existing and proposed policies and analyze the extent to which the policies fit within the four theoretical models, as well as what the likely impact would be of adopting a comprehensive set of policies based on each of the alternative models. Through these efforts, the project will provide a foundation for policy development in the genetics field so that each new issue will not need to be approached on an ad hoc basis. The project will result in a series of policy-oriented articles in the medical, legal, and health policy literatures; presentations to professional and academic groups; and a book that provides an analysis of the impact of genetics research and services on individuals, an analysis of proposed and existing policies addressed to the potential risks that genetics research and services present for individuals, and a theoretical analysis for developing the most appropriate approaches to genetics policies.