The Human Genome Project: Deciphering the Blueprint of Heredity.

Cooper, Necia Grant, ed. The Human Genome Project: Deciphering the Blueprint of Heredity. Foreword by Paul Berg. Mill Valley, CA: University Science Books, 1994.

The Human Genome Project: Deciphering the Blueprint of Heredity is a tome of some considerable heft which presents the basic research, the specific research goals and the public policy considerations that are involved in the Human Genome Project (HGP) which it promises will "permanently reshape our understanding of human disease and indeed of human diversity" (x). The book brings together luminaries from the Los Alamos National Laboratory, the Stanford University School of Medicine, Harvard Medical School, etc., including several Nobel Prize winners. It provides the reader with numerous tables, information boxes and illustrations as well as a glossary of unfamiliar terms.

The first chapter of the book "Understanding Inheritance: An Introduction to Classical and Molecular genetics" provides an historical survey which begins with Plato and Aristotle, travels through Thomas Aquinas and Roger Bacon, examines cell theory and Mendelian genetics, Darwin's theory of evolution and arrives at molecular genetics. Detailed descriptions about the history and function of a number of genetic technologies and illustrations of processes like mitosis, protein synthesis and DNA construction are included.

The second chapter, "Mapping the Genome", offers a discussion that "is meant to address scientists, particularly physical scientists, who know very little about the Human Genome Project and may have misconceptions about it" (71). Arguments are made about the usefulness of mapping the genome, especially the relative cost-effectiveness of finding genetic causes for diseases in this way rather than investigating them one at a time. All of the arguments given are ultimately pro-HGP, though they may differ somewhat in their visions of the project.

Several chapters discuss the specific sciences of various facets of the project. One examines the computer technology that has developed, for example, while another looks at DNA libraries and cloning. One of the most interesting chapters is entitled "Ethical, Legal and Social Implications (ELSI)". This chapter describes the ELSI Working Group of the HGP, which argues that "the answer is certainly not to slow down the advancing science, but to try, somehow, to make the social system more accommodating to the new knowledge" (304, my emphasis). Issues around genetic discrimination, privacy, genetic services (especially pre-natal testing) are debated, as is the idea of "public education" which is really no more than a euphemism for lobbying.

The book closes with a discussion by some of the leading participants in the HGP, who also answer some questions from a participating audience, entitled "An Invitation to Genetics in the 21st Century." Although the scientists assembled agree that there are legitimate concerns regarding the outcome of such a massive genetic project in a society as badly divided as this one (i.e. North America) they still argue that "the question is not whether we can afford to do this project but rather whether we can afford not to do this project" (318, emphasis in the original). They extol the virtues of the project for its disease-eradicating potential, but veer into dangerous terrain when they begin to talk about "the genes for life-crippling disorders such as obesity and alcoholism" (318).

The general level of critical evaluation contained in the book can be gauged if we consider that the following sentence was spoken by someone with "the reputation of being a critic of the Genome Project": "we have to study . . . our own DNA if we are ever going to understand our learning processes, our behavioural processes, and ultimately our ability or inability to work together to form a society" (320). Other warning signs include the distinction that a number of the scientists are making between "bad" and "good" eugenics (their words, not mine). The line that this argument follows is that it would be "mad" to not want to eliminate the gene for muscular dystrophy, and it leads to this type of very typically American, civil libertarian ethic: "No one should be allowed to prevent us from improving our own individual lives and the lives of our children" (323)