| This thesis presents results of a comprehensive policy appraisal of the U.S. Human Genome Project (HGP) sponsored by the National Institutes of Health (NIH) and Department of Energy (DOE). Concluded in April 2003, the HGP was an international science endeavor to sequence the human genome. In the U.S. project promoters justified the public investment, {dollar}3.3 billion, with assurances that sequencing the human genome would lead to health benefits for all, specifically with the development of genetic tests, gene therapies, and drugs. Project leaders also pledge to address potential harms of new genetic and genomic technologies by establishing Ethical, Legal, and Social Implications programs.; The thesis finds that the HGP is not now living up to its common interest expectations. Though some people have and are benefiting from genetic products and services, problems exist at every level of the genome research, technology development, and clinical application processes. For example, genetic research participants and genetic test recipients have experienced genetic discrimination and unauthorized use of their personal genetic information. One problem limiting the sharing of benefits and preventing effective mitigation of harm lies in the fragmented nature of the larger network of institutions and policies responsible for overseeing development and dissemination of genetic and genomic products and services, beyond NIH and DOE. Another problem is the nature of the HGP itself. Defined narrowly and technically, a project design that facilitated efficient genome sequencing also isolated the project from its larger social context and excluded people affected by the HGP, especially patients and consumers and their representative, from participation in decision making.; The thesis offers recommendations for improving the likelihood that human genome research and technology will advance the common interest. Specifically it proposes opening human genome policy decision making to patients and consumers who have a direct and personal stake in the research and empowering these individuals and their representatives to be competent participants in policy making. |
