Conceptual Frameworks for Genetics Policy

The purpose of this project is to analyze various conceptual frameworks for the development of policy with respect to genetics research, counseling, testing, screening, treatment and use of genetic information. The project will explore several theoretical models for overall regulation of medical genetics: the individual health model, the fundamental rights model, the public health model, and the equal opportunity model. The project will undertake an extensive review of relevant sociological, anthropological, psychological, economic and other empirical studies to analyze the likely impact on individuals of adopting one model versus another. Through these efforts, the project will provide a foundation for policy development in the genetics field so that each new issue will not need to be approached on an ad hoc basis. The project will result in a series of policy-oriented articles in the medical, legal, and health policy literatures; presentations to professional and academic groups; and a book that provides an analysis of the impact of genetics research and services on individuals, an analysis of proposed and existing policies addressed to the potential risks that genetics research and services present for individuals, and a theoretical analysis for developing the most appropriate approaches to genetics policies.