Evaluating the U.S. Human Genome Project

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.