ETHICAL ISSUES ARISING FROM THE HUMAN GENOME PROJECT

拟议中的研究有三个目的。首先，我们将确定 并分析一系列具体的伦理关切或问题， 或者，可能会由于映射和排序的结果而出现 人类基因组。这些问题包括： 1.筛查和诊断遗传性疾病或倾向。 2.地图和序列数据的隐私、所有权和安全。 3.群体内和群体间的遗传变异。 这些问题和关切将在 从应用中出现的道德相关变量的背景 正式的道德理论。基于其他道德运用的分析 理论将被做，以控制无意的偏见，并 评估我们方法的健壮性。 第二，我们将解决可能存在的伦理关切和问题 在考虑建议的和可能的政策备选方案时出现 人类基因组图谱所获取的知识和信息 序列项目。同样，这里的假设是，可以应用 一套正式的道德规则，以建立相关的变量， 允许S区分道德上可接受的和不可接受的 政策选择。这一部分包括对基本原理的讨论。 当有几个道德上可以接受的选择时，可以使用 政策选择。 第三，提出了一系列告知和参与的机制 各界别人士在S讨论的问题和政策 另类选择。其中包括原创研究文章、一本书和 暑期工作坊。在这里，我们重点告诉科学家，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.