CONCEPTUAL FRAMEWORKS FOR GENETICS POLICY

遗传政策的概念框架

• 批准号: 2209599
• 负责人: Lori B Andrews
• 金额: $ 16.09万
• 依托单位: ILLINOIS INSTITUTE OF TECHNOLOGY
• 依托单位国家: 美国
• 财政年份: 1995
• 资助国家: 美国
• 起止时间: 1995-05-01 至 1997-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/2209599
• 关键词: diagnostic tests; ethics; genetic counseling; genetic models; genetics; health care cost /financing; health care model; health care policy; health care service; health care service availability; health care service planning; health insurance; health related legal; health science research; human rights; public health; quality of life; social psychology

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.

描述（改编自研究者的摘要）：目的 该项目旨在分析各种概念框架 制定有关遗传学研究、咨询、 遗传信息的测试、筛查、治疗和使用。 这 项目将探索多种整体调控的理论模型 医学遗传学：个体健康模型，根本 权利模型、公共卫生模型和平等机会模型。 该项目将对相关的社会学、 人类学、心理学、经济学和其他实证研究 分析采用一种模式与另一种模式对个人可能产生的影响 其他。 特别是，该项目将分析各种类型的影响 针对个体身体和情感的遗传学研究和服务 幸福感和自我概念、个人关系以及 他们与雇主等社会机构的关系， 保险公司、学校和司法系统。 它将评估是否， 根据现有的研究结果，有足够可靠的 有证据表明个人面临特定风险，以保证采用 防范这些风险的政策。 它将分析到何种程度 现有和拟议的政策（包括专业指导方针） 组织和法院案件以及州和联邦法规 和法规）要么试图防止已发生的风险 经验文献中确定的或提供补偿时 危害成为现实。 它将检查在多大程度上尝试 为了预防已识别的风险，这些政策可能会创造其他风险 风险。 它将审查现有的和拟议的中隐含的价值观 政策并分析这些政策在多大程度上适合 四种理论模型，以及可能产生的影响 根据每一项政策采取一整套全面的政策 替代模型。 通过这些努力，该项目将提供 遗传学领域政策制定的基础，以便每个新 无需临时处理该问题。 该项目将在《科学》杂志上发表一系列政策导向的文章。 医学、法律和卫生政策文献；演讲给 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， 分析针对潜力的拟议和现有政策 遗传学研究和服务给个人带来的风险，以及 制定最合适方法的理论分析 遗传政策。