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The attempt to map all of the genes in the human body and to read the master blueprint of the human genome is one of the great stories of our time. New maps emerging from the Human Genome Project have already transformed so many of our beliefs and so much of our lives that our modern era is often referred to as "The Age of the Gene" (323ff). In fact, this development has been so rapid that many believe we have already entered a period of "postgenomics"!
As the details of the genomic map emerge, so does the remarkable potential for controlling our genetic fate. The most detailed map of this 'brave new world' may one day offer parents prenatal selection for mental and behavioral traits as well as for physical health. However, a recent nationwide survey, "Public Awareness in the Age of Genomics," conducted by the American Museum of Natural History in New York, suggests that few Americans are familiar with either the genetic story or its implications. Despite the cascade of recent genetic discoveries, the survey revealed that only 29 percent of Americans were aware of the Human Genome Project and only 36 percent had read, seen, or heard something about genetic research in the past three months (1). Coming to understand the story of this map making expedition - actually stories - and to evaluate the implications of the development of the Human Genome Project needs to be an important part of the education of all citizens.
In Genome: Updated Edition, two award-winning Wall Street Journal writers, Jerry E. Bishop and Michael Waldholz, provide the basic scientific information and sketch the social and ethical implications we need to gain such understanding. Making good use of case study methods, the authors introduce us to the many faces of genetic research - individual genius, evolving research communities, and venture pharmaceutical capitalists. Providing an elementary sketch of the background and development of what emerged as the Human Genome Project, the authors bring the story alive through an examination of the often mixed motives of patients, families, physicians, and researchers. We see how a scientific revolution begins "when the right remark is made at the right moment midst the right combination of people" (51). By linking technical science to "real life", Bishop and Waldholz transform an otherwise technical biological mapping expedition into a concrete and vivid voyage of discovery that impacts greatly on our life and culture.
"Undaunted Courage" could well be the subtitle of Bishop and Waldholz's text had not the historian Stephen E. Ambrose already used this phrase as the title for his best-selling book on the Merriwether Lewis and William Clark Expedition. In his wonderful book, Ambrose describes Merriwether Lewis's preparations for the journey to the Pacific, a journey that would help open the West. In their book, Bishop and Waldholz offer an historical perspective on the preparations made by biologists, chemists, computer scientists, mathematicians, and other scientists to map the innermost reaches of the human cell. As if in response to the criticism of Paul Davies that too often "science is presented as a body of accepted fact, missing out on the anguish, the feuding, the doubt, the exhilaration, and the eccentricity" (1993,68), the authors examine key personal episodes that lead to the development of the first maps. For example, they discuss the personal tragedies and serendipity of events that "stretch back in many directions in time and space, to a crippled child in Spokane, to an impromptu lecture in a Utah ski resort, to a young woman with heart disease in Detroit, and to a simple question about cancer asked by a pediatrician in Texas" (27). In each case, the authors put a human face on the genetic problem and tell the personal story of its scientific or medical resolution.
In his study, Ambrose reminds us that President Thomas Jefferson first sent Lewis off to Philadelphia to learn what was necessary for traveling in country that was then unknown. Facing what he believed to be unexplored territory and with no maps for location, Lewis set about learning the technology necessary to calculate his position from celestial bodies. Early genetic researchers confronted a similar problem of calculation. Bishop and Waldholz select a 1978 meeting at a ski resort in Alta, Utah, and the 1980 paper, "Construction of a Genetic Linkage Map in Man Using Restriction Fragment Polymorphisms," by David Botstein, Raymond L. White, Mark Skolnick, and Ronald W. Davis as the key breakthroughs in genetic mapping. Then, in the remaining chapters, they show how the discovery and use of "restriction-fragment-length polymorhisms" ("riflips") have given scientists remarkable opportunities to map their way through the human genome. By the time we reach the final chapter and "Epilogue,"written ten years later in 1999, we have witnessed the growth of a new field of genomics from fledgling laboratory "guess-work" in the mid-1970s into a virtual scientific-industrial complex.
In their closing chapters and their "Epilogue," Bishop and Waldholz begin to explore more fully the quagmire of ethical issues revealed by the emerging human genome map. While developments in genetics profoundly revolutionize medicine for the better, they also lead to ethical dilemmas for patients, health-care providers, and insurance companies among others. As medicine moves from an emphasis on diagnosis and treatment to prediction and prevention, new social and ethical concerns emerge about such issues as the patenting of gene discoveries, genetic engineering, and genetic privacy.
For the Greeks, especially the more celebrated Socrates and Plato, there was virtue in knowledge. But is genetic knowledge necessarily something good in and of itself? As the Greek myth of Icarus and Daedalus reveals, even the Greeks realized that knowledge can be double-edged. For example, one of the more troublesome ethical issues to emerge from the map of the human genome concerns diagnostic tests for diseases that have no cure. Thus patients confront not only the emotional impact of such knowledge, but they may face as well discrimination on the basis of genetic information from insurance companies and employers. For example, Bishop and Waldholz discuss the agony of Nancy Wexler, the child of a Huntington's disease victim and at 50-50 genetic risk for a disease that may not betray its presence through symptoms until after its victim's age of forty. Nancy and her family's foundation relentlessly pursued knowledge about the cause of Huntington's disease. However, once the gene was discovered for Huntington's disease, she and others faced the dilemma of whether or not to submit to a diagnosis for a genetic disease for which there is no treatment. The knowledge that ends genetic roulette may be the beginning of uncertainty not its conclusion. "Instead of worrying if they have the disease, people who are told they have the gene now worry when they will get," she says, "The test still provides some people with great freedom, but it can also be very destructive" (269).
In several ways, the epic voyage of Lewis and Clark serves as a metaphor for the scientific exploration of the Human Genome. Lewis, Clark and the rest of their "corps of discovery" depended on knowledge, know-how, and ethical sensitivity - individual and collective -to confront the unknown and fill in many of the voids in a map of the West. In Genome: Updated Edition, the extraordinary story of the attempt to map all of the genes in the human body is told, often through appropriate quotes from participants in the genetic "corps of discovery." In a genetic journey that seems to span the Western world, we see almost first-hand the development of new strategies and techniques as well as the faces of patients and researchers whose discoveries have opened for further exploration a breathtaking new world of genomics.
(1) "Public Struggles with Genetics 101," HealthScout, May 28, 2001.
Davies, Paul. 1993. "A Window into Science." Natural History 102 (July):68-71.
© 2001 Larry D. Hultgren
Larry Hultgren describes himself as follows:
A.B. Grinnell College majoring in Philosophy and Religion; Ph.D. Vanderbilt University in Philosophy. Currently Professor of Philosophy at Virginia Wesleyan College, Norfolk, VA. Since I am at a liberal arts college, my teaching runs the gamut of philosophy offerings. I am especially interested in interdisciplinary pursuits, and I direct the college's Social Ecology Program and our innovative PORTfolio Project which attempts to bring the liberal arts to life for our students by connecting the classroom with real world experiences. I also serve on the Bioethics Committee of the Children's Hospital of the King's Daughters in Norfolk, VA, and serve on the Board of Directors of the Bioethics Network of Southeast Virginia.