CONCEPTUAL FRAMEWORKS FOR GENETICS POLICY

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DESCRIPTION (Adapted from the Investigator's Abstract): 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. In particular, the project will analyze the impact of various types of genetics research and services on individuals' physical and emotional well-being and self-concept, on their personal relationships, and on their relationships with societal institutions such as employers, insurers, schools, and the justice system. It will assess whether, based on the results of existing studies, there is sufficiently reliable evidence of particular risks to individuals to warrant the adoption of policies to guard those risks. It will analyze the extent to which existing and proposed policies (including guidelines of professional organizations and court cases, as well as state and federal regulations and statutes) either attempt to prevent the risks that have been identified in the empirical literature or to provide reparation when harms materialize. It will examine the extent to which, in attempting to prevent the identified risks, the policies potentially create other risks. It will examine the values implied in the existing and proposed policies and analyze the extent to which the policies fit within the four theoretical models, as well as what the likely impact would be of adopting a comprehensive set of policies based on each of the alternative models. 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.