This proposed study will examine the significance accorded to disability in judgments about the quality and value of human lives, focusing on two domains in which such judgments are of central importance -- prenatal testing by prospective parents, and the use of disability-adjusted life years (DALYs) to determine the cost-effectiveness of health care interventions. Although these contexts differ in obvious respects, decisions made in both may be informed by the same controversial assumptions about the impact of disabilities on the quality of life, and about the relevance of the quality of a life to its value or priority. In both contexts, moreover, genetic technology is having, or will have, a profound effect, by enabling decision makers to predict diseases and impairments long before their onset. These issues have been given salience by the World Health Organizations' ongoing reclassification of impairment, disability, and handicap -- a comprehensive revision of the way human limitations are defined and understood. To address these issues, the investigators will convene an interdisciplinary working group of researchers with backgrounds in philosophy, law, genetics, counseling, public health, economics, and social science. The group will 1) analyze the extent to which the justifications for actual and proposed uses of prenatal testing and DALYs rest on controversial assumptions about disability and quality of life, and debate the validity of those assumptions; and 2) in response to these concerns, consider proposals to regulate or limit the availability of prenatal testing for the purpose of selective abortion, and the use of DALYs for the allocation of scarce health care resources.
