ETHICAL ISSUES ARISING FROM THE HUMAN GENOME PROJECT

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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.