A Paradigm Approach to Ethical Problems in Genetics

This project utilizes a method of ethical analysis described as 'paradigm analysis' to develop a comprehensive and systematic framework for ethical issues raised by genomic information in clinical genetics. Several diseases with genetic bases will be used to group specific sets of ethical issues and a method for ethical analysis will be devised. The project will have three phases: 1) a working group from ethics, clinical genetics, and scientific genetics, drawing from the literature on genetic ethics, clinical experience, and prospective scientific developments, will meet on a regular basis to select and describe the paradigms; 2) the chosen paradigms will be tested for adequacy and accuracy against the records of patients in the genetics clinics of the University of Washington; and 3) the paradigms will be refashioned in response to record derived data and a report explaining the paradigmatic method will be prepared and distributed throughout the genetics and ethics community. Utility of the method for a computerized data base will be explored.