The Gene Wars: Science, Politics, and the Human Genome
By Robert Cook-Deegan
Norton. 416 pp. $25
I must confess that I didn't understand genetics in high school biology; I understood it but loathed it in college; and I continued to loathe it in medical school. I found it boring, static, and irrelevant, and in no sense a science.
But that was then and this is now. With the advent of molecular biology (and molecular genetics) in the 1960s it all began to make sense. Genetics was no longer a boring bowl of Gregor Mendel's pea soup but a dynamic and even thrilling science. And with the revelation that written on those strands of DNA inside each cell of our body is a code so ingenious that it took the keenest minds in the biological sciences almost fifty years to decipher it, that science has become arguably the most riveting and the most controversial matter in the lexical ordering of human sapience today.
A quick historical overview. In 1865 the monk Gregor Mendel, working primarily with pea plants, demonstrated the heritable traits and characteristics of living things. Alas, his work languished in the scientific backwaters for forty years. In 1877 chromosomes were first identified in the living cell. In 1902 Walter Sutton first proposed that it is the chromosomes that carry Mendel's heritable traits. In 1909 the Danish biologist Wilhelm Johanssen coined the term "gene" for the heredity unit located on the chromosomes. In 1911 Edmund B. Wilson located for the first time with precision an inherited trait on a specific chromosome: the color blindness trait residing on the X chromosome. In 1941 George W. Beadle and Edward L. Tatum showed rather elegantly that the genes operate to instruct the biochemical machinery of the cell to produce proteins and enzymes, in which order and in what quantity.
The watershed breakthrough in modern genetics occurred in 1953 when Sir Francis Crick and James Watson won the Nobel Prize for anatomizing the chemical structure of DNA (deoxyribonucleic acid) and the configuration of the DNA in the chromosome-the so-called "double helix" configuration. Now, suddenly, the means were at hand to analyze and break the ancient code, and to identify at the molecular level where we came from and where we are going. From there it was a relatively short unquantum-like leap to proposing to map the location of each gene on each chromosome (we have 50,000-100,000 genes on our chromosomal complement, so this would be no weekend venture). The undertaking would be known as the Human Genome Project, comparable in magnitude and expense to the Manhattan Project in World War II and the moon-landing effort in the 1960s. The Human Genome Project was finally launched (and, more important, fully funded by the Congress) in 1991-to be headed by the redoubtable James Watson. It was funded at $100 million a year for fifteen years.
Robert Cook-Deegan, a physician long interested in medical genetics, has now produced a book, The Gene Wars, purporting to document the progress of the Genome Project from its inception to the present. The subtitle grandly announces that this is the story of "Science, Politics, and the Human Genome," and Cook-Deegan carries out that mission with a zeal that would make the most committed zealot envious. In so doing, he has managed to transmute an extraordinary chronicle of scientific endeavor into a dismayingly tendentious, eye-glazing Baedeker for the labyrinthine recesses of the bureaucratic Beltway. His obsession with task forces, commissions, committees, foundations, and institutes-and the arcana of their funding-reduces this tome to the status of an encyclopedia of baseball statistics. The first section is an exegesis of modern genetic technology so detailed and so pickwickian that it leaves one limp with exhaustion. The second and longest section of the book lingers lovingly over strategy and tactics for increasing the public funding of one's own project at the expense of someone else's; and in truth Machiavelli would shrivel with modesty were he to read of the byzantine stratagems and territorial wars over the scientific-political terrain in this book.
One must admit, however, that withal, this is an impressively researched treatise. The author's bibliography is formidable: 1,327 references, plus acknowledgments to 311 people and some 44 organizations to whom he owes some unspecified debt. In short, the cast of characters is of an epic order. But the plot does suffer.
What Cook-Deegan does not take any kind of searching look at are the manifold scientific and ethical questions raised by the Genome Project. Instead, he meticulously documents his own Kafka-esque journeys through the infinitely complex maze of Beltway officialdom. And in doing so, he reveals his own political pedigree in subtle but unmistakable ways. He never, for instance, mentions the landmark work of Dr. Jerome Lejeune, who identified the genetic defect in Down's syndrome (Dr. Lejeune was a towering figure in the pro-life movement until his untimely death this year); and he lists himself as a member of the Board of Directors of Physicians for Human Rights. That Board includes such liberal stalwarts as Aryeh Neier, former Executive director of the New York Civil Liberties Union. He cites the ethicist John C. Fletcher and U.S. Senator Barbara Mikulski as two of his most inspirational sources; drags in the issue of the homeless in the most egregiously gratuitous way; denigrates Edward Teller's role in the development of the H-bomb; and assails the 1988 federal moratorium on the use of fetal tissue to treat adult disease. Signposts in a familiar land.
Anyone seriously interested in the Human Genome Project and its innumerable ramifications-real and potential-might rather consult Genome (Norton, 1990), written by Jerry Bishop and Michael Waldholz, two Wall Street Journal reporters who wrote a prize- winning series on the subject and subsequently turned out a book (now unfortunately out of print) remarkable not only for its comprehensibility in dealing with this complex issue, but also for its prescience.
After an admittedly superficial but sufficient explication of the science of genetics Waldholz and Bishop take on fearlessly the very knotty questions that Cook-Deegan dismisses all too superciliously. They grapple with the core issue of genetic determinism; with the issue of confidentiality (who should be privy to the genetic map of a given individual?); with the issue of genetic screening for people requiring special skills (e.g., airline pilots, truckers, the police and the military, etc.) Further, they recognize and attempt to work through the chilling concept of a genetically influenced "biological underclass," as they do the question of IQ and the genes that regulate intelligence- which has become a politically combustible issue with the work of Murray, Hernnstein, Eysenck, Jensen and even earlier the claims of the Nobel Prize-winning scientist William Shockley-along with the role of genetics in character disorders such as criminal behavior, alcoholism, drug addiction, and mental aberration.
The core question lying coiled like a viper at the heart of the genome issue is the matter of gene manipulation, also known as gene therapy: the question is, what will (ought) we do with this technology? Now that we know where the gene for a particular heritable trait is located, now that we have the tools to eliminate or splice or add to that gene locus (restriction enzymes and viral vectors), should we alter our genetic complement? This is of course relatively easy to answer in the case of diseases such as sickle cell anemia, cystic fibrosis, muscular dys- trophy, and so on.
However, other more difficult questions assert themselves. The costs of screening programs are immense, and the costs of gene therapy are staggering. For example, in the case of ADA deficiency (the so-called "bubble baby" who lacks a vital enzyme in the working of the immune system so that he cannot be exposed to another human for fear of acquiring even the most minor infection which will surely kill him), supplying the necessary gene therapy runs to approximately $25
0,000 annually. In this era of heightened sensitivity to cost allocations and the rationing of medical care, such matters demand the most careful analysis.
The more difficult questions truly test our moral fiber. Should we tinker with intelligence genes? Do we create a super race? A subhuman class designed to do the menial work of our society? Should we be patenting new animals (the U.S. Supreme Court has said this is permissible)? How about grafting animal genes into humans to produce physical juggernauts-or grafting human genes into animals, to produce smart beasts of burden? Might not some bacterial mutant, created in the laboratory, escape and launch an uncontrollable plague? Is there a gene for homosexuality? Ought we or ought we not look for it? If it should be found, what do we do about it?
I have not even touched on the sensitive matter of enhancement. When we locate the gene that controls the need for sleep, might we not reduce its potency by, say, 50 percent-thus saving four hours a night for more productive work? Should we tinker with the genes that control memory, so that we can store more in the memory banks-but may never be able to suppress the horrid memories so mercifully dealt with by our memory systems now? And what of the genes regulating the entire immune system? If we could re-order them expertly, might we not be able to establish the normal life span of the human at two hundred years? Two thousand years?
Does this all seem impossibly chiliastic? The late physician-novelist Walker Percy remarked: "Here is the prophecy. The behavioral scientist of the future will be able to make sense of the following sort of sentence which presently makes no sense to him whatever: There is a difference between the being-in-the-world of the scientist, and the being-in-the-world of the layman." The San Andreas Fault in the modern mind, widening imperceptibly-but relentlessly.
In all or any of this Robert Cook-Deegan seems to have little interest, lost as he apparently is in the winding corridors of power and politics.
Bernard N. Nathanson, M.D., is currently Visiting Scholar at the Center for Research and Clinical Ethics at Vanderbilt University.