So I am hardly alone in being tested by Stefansson’s labs and computers, though what sets me apart is that I’m the first healthy person with no family predisposition to be tested by deCode and to have my results announced publicly. I’m also not the first person to take tests for specific genetic diseases. More and more, tests are offered that identify genes linked to Alzheimer’s disease, Huntington’s chorea, breast cancer, and other maladies. Except for Huntington’s, which has a 100 percent “penetrance”—the certainty of which people who have a mutation will get the disease—most of these tests offer only the possibility that a person will get the disease. For instance, testing positive for the apo-e4 gene, which is associated with Alzheimer’s, a person has a two-and-a-half times to ten times greater chance of getting the disease than a normal person. So this is not necessarily deterministic information but, rather, offers up probabilities that you or I will get a disease.
These genetic tests fall under the rubric of “personalized medicine”—which offers not only tests for genetic predispositions to disease, but also the possibility of customized treatments. So drugs could be targeted to your specific malady and genetic makeup rather than the one-size-fits-all medications of today. Yet this is only the bare beginning of what scientists are offering up as future possibilities in this nascent age of genetics. You and I and our children may soon be living in a world where damaged hearts and shattered spines are routinely regenerated or spare ones are regrown using stem cells; where a human egg containing a person’s DNA can be engineered by adding and subtracting genes; where genetic fixes or perhaps a pill can be popped to extend life span and keep one young, fit, and lean up to age 150, or 300, or longer. The possibilities are thrilling in some cases and frightening in others, particularly since the collective knowledge of genetics and the impact of mucking with the basic recipes of life remain fantastically complex and largely unknown.
This creative fire in biotechnology is occurring after a half-century of biological discoveries and more recent technological breakthroughs, combined with an unprecedented surge of funding from government and the private sector, and supported by a society that loves the gadgets, the medical miracles, and the standard of living afforded by modern science, even if the pace of change sometimes makes us feel uneasy. The outcome of this explosive moment in genetics is anybody’s guess: a brilliant future or, if something goes terribly wrong, a nightmare. Or both. We will cure cancer; vanquish AIDS, malaria, and tuberculosis; increase life span to three hundred years; eliminate pollution; and feed everyone on the planet. Or we will create a monster, either inadvertently or deliberately. Maybe we’ll do it all. I believe this is the greatest story of our time, perhaps of all time. A species is developing the tools to redesign itself, to self-evolve in a way Charles Darwin never imagined.
Experiments are under way to create new forms of life. The geneticist J. Craig Venter, cosequencer of the human genome, is creating at his nonprofit Institute for Biological Alternatives the first synthetic life-form. Working in Rockville, Maryland, with the Nobel laureate Hamilton O. Smith and funded in part by $12 million in grants from the U.S. Department of Energy, Venter wants to create a simple microbe designed to munch up carbon dioxide pollutants in power plants and to release harmless hydrogen. This sounds wonderful, though this technology could also be used in the wrong hands to create organisms for more nefarious purposes such as bioterrorism. Or one of these critters might be released into the ecosystem for a useful purpose, only to mutate or evolve into something deadly. As a nonscientist enthusiastic about science, I am properly awed by the possibilities. I also wonder, at times, whether I should be afraid. I lean more toward amazement than not, but I am skeptical, too, strongly believing that nonscientists need to do their homework to understand the new science, to be informed enough to be impressed, cautious, or afraid. Most of all we need to stop being mystified, to learn enough to question intelligently and to push our high priests of science to explain what they’re up to.
Lest we forget, periods of explosive scientific achievement and technological breakthroughs have always created the potential for both miracles and horrors. DDT rid the West of malaria-bearing mosquitoes and other pests but poisoned birds and other animals, including humans; electricity lights our cities and powers our factories, but touch a live wire, and zap!; fossil fuels have provided us with fuel to zip about in the air, and on the land and sea, but befoul skies and cause global warming. The list goes on in the pluses and minuses of television that educates and enervates, drugs that cure and cause side effects, cars and airplanes that convey us places but also turn lethal if they crash and burn. The most classic example of all occurred when the physicists of the early twentieth century found their dazzling theories turn into not only the transistor and spaceflight, but also the bomb. The Manhattan Project chief Robert Oppenheimer, for one, spent the rest of his life after Hiroshima and Nagasaki trying to reconcile his conscience for his role as a scientist in creating this awesomely deadly weapon. “It is not possible to be a scientist unless you believe that the knowledge of the world, and the power that this gives, is a thing which is of intrinsic value to humanity, and that you are using it to help in the spread of knowledge,” he said in the autumn of 1945, three months after the bombs erupted over Japan, in what could be considered a classic statement of a modern scientist justifying his work. Yet he added an important caveat: “and are willing to take the consequences.”
The last century contains many other examples of science’s running amok: the sick experiments of Josef Mengele at Auschwitz; the program at Tuskegee, Alabama, in which black sharecroppers who had syphilis were denied treatment for forty years by researchers who were studying the effects of the disease; and the bioengineering of super-virulent smallpox variants by Soviet virologists working for the secret Soviet bioweapons program during the sixties, seventies, and eighties.* Laid alongside the wonders of the last century, the dangers of modern science and technology are accepted by people in an ongoing Faustian bargain that has become a cliché of B movies and science fiction novels. Mary Shelley helped launch the notion of the modern mad scientist in 1810, inventing the character of the young idealist who sets out on a quest to understand the intricacies of nature and life and ends up with Boris Karloff in green makeup with bolts in his neck.
This bargain is tempered by a demand that governments remain vigilant against future Frankensteins and Mengeles, while ensuring safety whenever possible as science moves forward. Watchdog agencies such as the U.S. Food and Drug Administration and ethics committees in universities, hospitals, and businesses have been assembled to oversee experiments and the release of new products and hopefully to head off anything that might prove dangerous. The tension between how safe is safe and the pressure from scientists to test new discoveries is one of the defining aspects of modern science and culture. Most scientists insist on a code of ethical conduct in keeping with current norms of human rights and dignity, keenly aware that despite science’s power and clout, the public has little patience for errors that endanger people or overtly imperil the environment. They have no tolerance at all with scientists who would delve into the territory of a Mengele or a Frankenstein, even inadvertently.
This is reassuring, up to a point. Yet as we plunge into tinkering with the basics of life, can we know for sure what they—and we—are doing, and what its impact will be?
Most scientists tell me not to worry: that we humans have not yet destroyed ourselves or the planet, and that on balance science has been an overwhelming force for the good. Yet others worry that we are entering unchartered territory without really understanding the implications. “We have to decide soon what kind of society we want,” says the Oxford neurogeneticist Susan Greenfield, a baroness and member of the House of Lords, and an author who writes about the brain and the social impact of genetics. “For instance, do we want a world where everyone takes Prozac, uses Botox, and plays with Gameboys? We could be heading into a designer-baby world where we sit passively in front of our screens and live in a virtual world. Do we want that?”
The other day I reread the self-description of Victor Frankenstein in Mary Shelley’s