Beyond Biotechnology: The Barren Promise of Genetic Engineering

7 Reflections on the Human Genome Project

Chapter 7 reflections on the Human genome Project During the 1990s molecular biologists were fully engaged in a race to determine the complete DNA sequence in various organisms.And they succeeded —first in bacteria, then in yeast, and finally in a well-researched roundworm (C. elegans). In early 2000 the DNA sequence of the fruit fly, the genetic workhorse of the twentieth century, was completed. In June 2000, at the White House amid media fanfare, two genome sequencing teams announced that they had completed a “working draft” of the human genome. Their reports were published in February 2001 (International Human Genome Sequencing Consortium 2001;Venter et al. 2001). The mega-project was at an end—or was it actually just the beginning? Another Century of Work In 1991 geneticist Walter Gilbert made a brash statement: “I expect that sequence data for all model organisms and half of the total knowledge of the human organism will be available in five to seven years, and all of it by the end of the decade” (Gilbert 1991). With regard to sequencing, Gilbert was astoundingly close in his conjecture. At that time almost no one believed the feat could be accomplished in only ten years. But technical advances in automated, rapid sequencing, along with more powerful supercomputers and software, helped accelerate the genome work. The competition between the two genome teams, one privately and one publicly funded, was also a major driving factor. But Gilbert saw more in the sequence completion than virtually This chapter was cowritten with Johannes Wirz. Reflections on the Human Genome Project • 73 endless strings of letters on a computer screen, representing nitrogenous bases in DNA. He spoke of gaining “total knowledge of the human organism .” This statement reflects a tendency—one that seemed to accelerate in stride with gene-finding—to make overblown claims about the genome work. We might expect such hyperbole from the media seeking the hottest stories, but the scientists involved in the work were often the worst transgressors of measured assessment. The genome project was, in the words of the publicly funded team’s leader, Francis Collins, “the most important and most significant project that humankind has ever mounted” (quoted in Kolata 1993). Why? Because it meant opening what he, like many others, called “the Book of Life,” a book that reveals the secrets of the human being.“For the first time,”stated biologist Robert Weintute, “we are reducing ourselves down to DNA sequences . . . to rather banal biochemical explanations. . . . We are dealing with the mystery of the human spirit” (quoted in Wade 1998). When in 2000 a New York Times headline announced,“Genetic Code of Human Life Is Cracked by Scientists,”the lead article proclaimed:“In an achievement that represents a pinnacle of human self-knowledge, two rival groups of scientists said today that they had deciphered the hereditary script, the set of instructions that defines the human organism” (Wade 2000).Interestingly,at this pinnacle of fervor concerning the project,some scientists were markedly more circumspect in their comments. Molecular biologist David Baltimore remarked,“We’ve got another century of work to figure out how all these things relate to each other” (quoted in Angier 2000). A year later, Svante Pääbo, another leading genome scientist, remarked on the “insidious tendency to look to our genes for most aspects of our ‘humanness,’ and to forget that the genome is but an internal scaffold for our existence” (Pääbo 2001). And still another geneticist stated, “It’s like a book in a foreign language that you don’t understand. That’s the first job, working out the language” (quoted in Pennisi 2001). These scientists are telling us that the genome project was actually just the beginning of real understanding. It is, after all, one thing to find a scaffold or a book that you haven’t even begun to decipher (and we should remember, in applying the book metaphor, that possessing a physical book with its text does not make us masters of the text). It is a wholly different matter to gain knowledge of the actual workings of the living organism, not to mention self-knowledge and a key to “the mystery of the human spirit.” So, was the genome project just caught up in one big jamboree of 74 • Genes and Context hype? In many ways, yes. In a letter to the editor of Nature, written before the completion of sequencing was...