(Investigators' Abstract): This project will utilize a method of ethical analysis described as """"""""paradigm analysis"""""""" in order to develop a comprehensive and systematic framework for ethical issues raised by genomic information in clinical genetics. Paradigm analysis selects a finite range of examples (in this project, the examples are disease entities each of which serves as a master example for a large subset of other disease entities. All disease entities subsumed under the paradigm may be different genetically, pathophysiologically and clinically distinct, but will be similar in their ethical features. Thus, in an oversimplified example, all disease entities in which confidentiality is the major ethical problem will appear under one paradigm. The objective of this exercise is to identify with exactness and efficiency the nature of ethical problems associated with particular kinds of disease entities and, as a result of this identification, begin to develop approaches at the professional and policy levels toward resolution. The exactness is achieved by associating ethical problems with precise features of disease entities. Efficiency is achieved by collecting the vast number of actual and potential disease entities under a finite set of examples. In this application, one disease entity, neurofibromatosis is used as a hypothetical paradigm. The project will have three phases, each taking one year. 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. 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 computerized data base will be explored.
| Jonsen, A R; Durfy, S J; Burke, W et al. (1996) The advent of the ""unpatients'. Nat Med 2:622-4 |
| Callahan, T C; Durfy, S J; Jonsen, A R (1995) Ethical reasoning in clinical genetics: a survey of cases and methods. J Clin Ethics 6:248-53 |
