Human Genome Policy and Health Care Services

University Of Colorado At Boulder, Boulder CO

Investigators

Abstract

The purpose of the proposed dissertation is to clarify how policy processes directing genomic health care services and ultimately policy outcomes can be improved to better serve consumers of human genome research and products. For this project, consumer is defined as individuals who have a genetic disease or perceived genetic risk-and their families. The primary goal is to better secure the common interest -- maximizing health benefits and minimizing harms of genome research and applications for all -- through improvements in policy. This includes adapting clinical applications of the research that promote human health, nurturing a robust service delivery system, enabling broad access to health benefits, ensuring the safety of genomic technologies, enforcing the ethical use of personal genetic information, and preventing abuses and misuses of genetic information and technologies. It includes balancing the need to nurture scientific discovery with the need to advance and maintain freedom and justice for individuals. It also entails establishing processes that promotes power sharing in research and health care delivery decisions among all participants - particularly consumers who are affected most directly and personally by genomics. Power means participation in decision making. The project is guided by the belief that members of the public most affected by genomics should have power in policy decisions governing its development and use. This standard not only advances important democratic goals but may also establish early feedback mechanisms that expose problems and promote creative problem solving. To accomplish the three tasks, I employ multiple methods and bridge disciplinary boundaries, bringing together data from the realms of genetics, medicine, health care, law, bioethics, psychology, sociology, anthropology, political science, and public policy. The methods utilized for this study include comparative case study, key informant interviews, document analysis, and where possible, direct observation. Data collection is designed to build a comprehensive map of the genome research/technology/service delivery context in order to understand the significance of the details and develop policy alternatives.