ETHICAL ISSUES ARISING FROM THE HUMAN GENOME PROJECT

提出的研究有三个目的。 首先，我们将确定 并分析一系列具体的伦理问题， 或者，很可能，会出现的映射和排序的结果， 人类基因组 这些问题包括： 1. 筛查和诊断遗传疾病或倾向。 2. 图谱和序列数据的隐私、所有权和安全性。 3. 群体内和群体间的遗传变异。 这些问题和关切将在本报告中进行系统分析。 道德相关变量的背景下出现的应用 正式的道德理论 基于其他道德应用的分析 为了控制无意的偏见， 评估我们方法的稳健性。 第二，我们将解决可能出现的道德问题。 在考虑拟议的和可能的政策选择时， 人类基因组图谱所获得的知识和信息， 序列项目。 这里的假设是，人们可以应用一个 一套正式的道德规则，以建立相关的变量， 允许道德上可接受和道德上不可接受的区别 政策选择。 本节讨论了 当有几个道德上可接受的选择时， 政策选择。 第三，建议建立一系列机制，向公众通报情况，让公众参与， 在讨论问题和政策时， 替代品. 其中包括原创研究文章，一本书， 暑期工作坊 在这里，我们专注于告知科学家，NIH的工作人员， 媒体和公众。

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.