Evaluating the U.s. Human Genome Project: a Scientific Success and Public Interest Failure

This book, Evaluating the U. S. Human Genome Project, presents a comprehensive policy appraisal of a large-scale science program. Sponsored in the United States by the National Institutes of Health and Department of Energy, the Human Genome Project (HGP) endeavored to sequence a reference human genome. A genome is the complete set of DNA comprised of nucleotide bases: adenine, thymine, cytosine, and guanine, in a cell¿s nucleus. The HGP¿s scientific goal was to determine the order of these chemical bases within the 23 pairs of chromosomes. Project promoters justified the public investment, $3.3 billion, with assurances that the HGP would lead to public health benefits. Project leaders also pledged to address harms of genome research and technology by establishing Ethical, Legal, and Social Implications programs. Though a scientific success, the HGP has not lived up to common interest expectations. The HGP¿s technical design facilitated efficient sequencing but isolated the project from its larger social context and excluded non-scientist stakeholders from decision making. The book offers recommendations to help human genome research and technology serve its public purposes.