ETHICAL ISSUES ARISING FROM THE HUMAN GENOME PROJECT

人类基因组计划引发的伦理问题

• 批准号: 3333168
• 负责人: BERNARD GERT
• 金额: $ 16.48万
• 依托单位: DARTMOUTH COLLEGE
• 依托单位国家: 美国
• 财政年份: 1990
• 资助国家: 美国
• 起止时间: 1990-08-01 至 1994-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/3333168
• 关键词: developmental genetics; ethics; genetic mapping; genetic regulatory element; genotype; health related legal; human population genetics

There are three aims of the proposed research. First, we will identify and analyze a series of specific ethical concerns or questions that have, or, likely, will arise as a consequence of the mapping and sequencing of the human genome. These include issues pertaining to: 1. screening and diagnosing genetic disorders or predispositions. 2. privacy, ownership and security of map and sequence data. 3. genetic variation within and between groups. These questions and concerns will be analyzed, systemically, in the context of morally relevant variables that emerge from the application of a formal moral theory. Analyses based on the application of other moral theories will be done in order to control for unintentional biases, and to evaluate the robustness of our approach. Second, we will address the ethical concerns and questions that are likely to arise in considering proposed and probable policy alternatives relating to the knowledge and information acquired by the human genome map and sequence project. Here again the hypothesis is that one can apply a formal set of moral rules in order to establish relevant variables that permit s distinction between morally acceptable and morally unacceptable policy alternatives. This section includes a discussion of the rationale that may be used when there is a choice among several morally acceptable policy alternatives. Third, a series of mechanisms is proposed for informing and involving the various constituencies in s discussion of the issues and policy alternatives. These include original research articles, a book, and summer workshops. Here we focus on informing the scientist, NIH staff, the media, and the public.

拟议的研究有三个目的。首先，我们将识别