The primary aim of this investigation is to explore ethical, social, and policy ramifications of the clinical application of human genome research. Our inquiry will focus on the diagnosis, counseling, and treatment of presymptomatic and contingent conditions, especially as related to reproductive decisionmaking, preventive health efforts, insurance coverage and other funding issues, genetic therapy, and the educational needs of both health care professionals and the general public. Assuming that unlimited resources will not be immediately available for smoothly introducing genome research into the clinical arena, we propose to develop on ethically and economically sound set of priorities to guide this process. While the drive to map and sequence the human genome gives hope of earlier diagnosis and eventual control of many disease processes, grasping this fundamental knowledge will force radical revision in basic concepts of disease, health, and medical care. Modern societies, moreover, face increasingly significant financial pressures, which are forcing a reappraisal of traditional medical goals. Will modern genetics serve primarily individuals, or society? Do individuals have unlimited claims on genetic diagnostic and therapeutic innovations, or should these be distributed under some coherent framework for resource allocation? Neither health care professionals nor the general public have been adequately prepared to respond to these dilemmas as they arise in clinical practice. In order to structure the introduction of novel technologies in ways appropriate to individual and societal notions of health and well-being, the Hastings Center will develop, analyze, and assess strategies for responding to these practical concerns. To provide a context for these efforts, the Center will also formulate a theory of the goals of medicine designed to accommodate changing understandings of genetic health and simultaneously point to priorities that can direct rational implementation of clinical services.
