GENETICS & DISABILITY INSURANCE--ETHICS, LAW & POLICY

遗传学

• 批准号: 6193167
• 负责人: Jeffrey P. Kahn
• 金额: $ 22.12万
• 依托单位: UNIVERSITY OF MINNESOTA
• 依托单位国家: 美国
• 财政年份: 2000
• 资助国家: 美国
• 起止时间: 2000-08-01 至 2002-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6193167
• 关键词: behavioral /social science research tag; data collection methodology /evaluation; employment /unemployment; ethics; genetic disorder diagnosis; genetic screening; genetic susceptibility; health care policy; health insurance; health related legal; human rights; human subject; information dissemination; prejudice; publications

DESCRIPTION (Adapted from the Investigator's Abstract): Issues of genetic testing and the potential for discrimination by insurance providers have received considerable scholarly attention during the past decade. This work has not directly addressed disability insurance, which is an important part of the social safety net and has features that are clearly different from either health or life insurance. Similarly, a small fraction of the states prohibiting genetic discrimination in insurance have included disability insurance. The University of Minnesota Center for Bioethics and the University's Joint Degree Program in Law, Health & the Life Sciences plan to complete a comprehensive investigation of the ethical, legal, and policy issues in the use of genetic information in private and public disability insurance and to recommend policies based on our findings. To achieve the goals of this project, the center and Joint degree Program will convene an interdisciplinary working group comprised of some of the best U.S. scholars and experts working on ethical, legal, and social issues raised by genetics, insurance, and disability. The group will include members from the field of ethics, policy and law, social science, medical science, people who live with disabilities, and the insurance industry. The Working Group will convene four times during a two-year period. In conjunction with the group's third meeting, the Center and Joint Degree Program will host an invitational national conference on the ethical, legal, and policy issues raised by genetic testing and disability insurance. Through these efforts the investigators will clarify the issues; develop a consensus about effective responses; author a consensus paper with their recommendations; and produce the first comprehensive collection of articles on the issues to be published as a journal symposium.

描述（改编自研究者摘要）：遗传问题 测试和潜在的歧视，由保险提供商， 在过去的十年里受到了相当多的学术关注。这项工作 没有直接解决残疾保险，这是一个重要组成部分， 社会安全网，具有明显不同于 健康或人寿保险。同样，一小部分州禁止 保险中的基因歧视包括残疾保险。 明尼苏达大学生物伦理学中心和大学联合 在法律，健康和生命科学学位课程计划完成一个 全面调查使用中的伦理、法律的和政策问题 在私人和公共残疾保险中提供遗传信息， 根据我们的调查结果提出政策建议。为了实现本项目的目标， 该中心和联合学位课程将召集跨学科的工作 一个由美国最优秀的学者和专家组成的小组， 伦理，法律的，和遗传学，保险， 残疾。该小组将包括来自道德、政策和 法律，社会科学，医学，残疾人， 保险业 工作组将在两年期间召开四次会议。在 与该小组的第三次会议，中心和联合学位课程 将举办一个关于道德、法律的和政策的全国邀请会议， 基因检测和残疾保险引起的问题。通过这些 调查人员将努力澄清问题;就以下问题达成共识 有效的应对措施;编写一份载有其建议的共识文件; 制作了第一个全面的关于将要讨论的问题的文章集， 以期刊座谈会的形式发表。