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The very thought of being able to read the entire genetic message, and perhaps alter it, is alarming to those who fear the knowledge could create many moral and ethical problems. Does genetic testing constitute an invasion of privacy, for example, and could it lead to more abortions and to discrimination against the "genetically unfit"? Should someone destined to be stricken with a deadly genetic disease be told about his fate, especially if no cure is yet available? Does it demean humans to have the very essence of their lives reduced to strings of letters in a computer data bank? Should gene therapy be used only for treating disease, or also for "improving" a person's genetic legacy?
Although scientists share many of these concerns, the concept of deciphering the human genome sends most of them into paroxysms of rapture. "It's the Holy Grail of biology," says Harvard biologist and Nobel laureate Walter Gilbert. "This information will usher in the Golden Age of molecular medicine," says Mark Pearson, Du Pont's director of molecular biology. Predicts George Cahill, a vice president at the Howard Hughes Medical Institute: "It's going to tell us everything. Evolution, disease, everything will be based on what's in that magnificent tape called DNA."
That kind of enthusiasm is infectious. In an era of budgetary restraint, Washington has been unblinkingly generous toward the genome project, especially since last April, when an array of scientists testified on the subject at a congressional committee hearing. There, Nobel laureate Watson of DNA fame, since picked by the NIH to head the effort, mesmerized listeners with his plea for support: "I see an extraordinary potential for human betterment ahead of us. We can have at our disposal the ultimate tool for understanding ourselves at the molecular level . . . The time to act is now."
Congress rose to the challenge. It promptly allocated more than $31 million for genome research to the NIH and to the Department of Energy and the National Library of Medicine, which are also involved in the quest. The combined appropriations rose to $53 million for fiscal 1989.
Even more will be needed when the effort is in full swing, involving hundreds of scientists, dozens of Government, university and private laboratories, and several computer and data centers. With contributions from other Government agencies and private organizations like the Hughes institute, the total annual cost of the project will probably rise to $200 million, which over 15 years will account for the $3 billion price tag.
The staggering expense and sheer size of the genome project were what bothered scientists most when the idea was first broached in 1985 by Sinsheimer, then chancellor of the University of California at Santa Cruz. "I thought Bob Sinsheimer was crazy," recalls Leroy Hood, a biologist at the California Institute of Technology. "It seemed to me to be a very big science project with marginal value to the science community."