Ethical and Legal Studies Relating to the Program to Map and Sequence The Human Genome

This project will first identify and analyze a series of specific ethical concerns or questions that have, or will arise as a consequence of the HGP, including genetic screening and diagnosing genetic disorders or predispositions, privacy, ownership, and security of HGP data, and genetic variations within and between groups. These concerns will be analyzed 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 to control for unintentional biases. The research team will apply a formal set of moral rules in order to establish relevant variables that permit a distinction between morally acceptable and unacceptable policy alternatives, in order to address the ethical concerns and questions that are likely to arise in considering policy alternatives relating to the knowledge and information acquired by the HGP. Finally, a series of mechanisms for informing and involving the various constituencies in a discussion of issues and policy options will be examined. These include research articles, a book, and summer workshops.