Genetic medicine promises baby geniuses, and nightmares

At this year's State of the World Forum several sessions were devoted to the human genome and genetic medicine, and they proved just how exciting it can be to bring together people who approach an issue from very different angles. The CEO of Chiron, one of the country's largest biotech companies, went toe-to-toe with the skeptical scientist Amory Lovins. Other panelists included a pediatric neurologist, a Greenpeace scientist, three other biotech CEOs, and an official from the U.S. Department of Agriculture.

Very little was said about the genome, which is the complete sequence of genetic material in the DNA inside every cell of every human being. Amory Lovins dismissed it as "a telephone book," adding, "We know everyone's name and address, but we know nothing about their social or other relationships." (There is so much data in the genome it would actually fill 200 fat phone books.) A series of rungs in the ladder-like DNA molecules operate as a gene, determining some characteristic or aspect of species behavior. Scientists have sequenced the DNA, but only a few of the more than 80,000 human genes have been identified—and, in some cases, patented.

Patenting of genes generated a lot of argument among panelists, but in the end, most agreed that what should be patentable are medically useful inventions that use genetic discoveries. Patenting genes themselves is essentially to patent a description of something that exists. Panelists judged this to be, at best, not helpful and, at worst, playing God for profit.

Judy Gobert, who is spokesperson for two Native American tribes, was one of several who argued against any patenting of DNA, or of life. Government and industry scientists have urged tribes people to provide their own DNA, from their blood, and plant and animal samples from their lands.

So what is the use, medical or otherwise, of all this genetic research?

Robert Lanza, a spiky-looking fellow who runs a biotech company called Advanced Cell Technology, opened one panel by quite casually reporting that we will double our lifespans in the very near future—one got the feeling he meant within his lifespan. He tended to the view that this was more likely to come from replacement organs than from the lengthening of telomeres, or "tails" inside cells, a technique that has succeeded in lengthening the life spans of cows. The new cells to replace damaged ones will be grown by genetically tweaking undifferentiated human (embryo) cells.

This "therapeutic cloning" is already happening with insulin-producing cells for diabetics, for example, and most panelists were comfortable with that. But a clear line has been drawn at germ-line engineering, meaning altering the genes of a human egg or sperm or zygote to change something about the person who grows from that egg. Messing with the germ line could engineer dramatic fix-ups—guaranteeing that a child does not inherit a deadly problem that runs in his or her family, for example. But germ-line engineering could also be done for cosmetic or enhancing reasons—producing a baby with the brains of an Einstein and the looks of Madonna, for example.

Amory Lovins, who describes himself as "a recovering experimental physicist trying to learn some biology," took the broad ecological view. "We know that in larger ecosystems, introducing foreign agents upsets things in unpredictable and often unhappy ways," he said. "I feel the same way about putting bits of xeno-DNA, or even DNA from our species, into our genes."

Lovins objects to human intervention with the evolution of species, on the scale of intervention that bioengineers are now doing or proposing to do very soon. "We're close to being able to add 20 or 30 points to your baby's IQ, or an equivalent boost of their muscle mass," said biotech CEO Lanza, "and who among us wouldn't say, 'Yes'?"

The problem, says Lovins, is that we're changing our species, and expecting the results to be successful, a billion times faster than nature makes changes through evolution. If naturally occurring genetic changes result in failures of any sort, "they're recalled by the manufacturer," Lovins quips. "We are creating new forms of life, which take on a life of their own, without time to deal with any unpleasant surprises." And there's another very different quality to human versus natural evolution: The objective of our genetic fiddling, he points out, "is profitability, not biofitness."

Lovins also maintains that bioengineering is not strictly engineering, "since that suggests that the engineer knows the link between action and effect." His point is that, to date, scientists who insert bits of genetic material into cells even for therapeutic reasons, cannot choose where the inserted genetics will attach, and thus, they cannot be sure of the full range of consequences.

Another medical use of gene therapy involves inserting a normal gene into the DNA of cells that have a nonfunctioning, defective gene. The normal gene gets into the cell by being attached to a "domesticated" retrovirus that infects the cell. While this type of gene therapy is uncontroversial, a man named Jesse Gelsinger recently died when treated this way to repair a defective gene he carried that had not even produced any symptoms of disease. What killed him was the retrovirus used as the delivery vehicle which, apparently, was not as domesticated as it was thought to be. Gelsinger's death led to revelations that six other gene therapy patients had died without public announcement.

Despite all these difficulties, panelist Sean Lance, CEO of Chinron, was impatient with Lovins' assertion that "the jury is still out on medical gene technology." "It isn't," he said bluntly, "Malaria, HIV, tuberculosis, all will be cured or rendered preventable by biotech."

Martha Herbert, a neurologist who has thought long and hard about the ethics of biogenetics, cited several technologies that probably should be prohibited. Her list included germ-line engineering of humans, and genetically engineered food--on the grounds that we cannot track any negative health effects it might have. The man from the USDA, Isi Siddiqui, objected. He repeated, many times through the session, what is essentially the food industry and U.S. government line: that genetically engineered agricultural products developed in the U.S., and regulated by reasonable men and women, will save billions from starvation and eliminate diseases that presently kill millions.

William Tiga Tiga, a CEO who grew up in a village in West Africa, was not impressed. While conceding that people who work in big corporations, Monsanto for example, have personal integrity—"After all, they drink the same water we do, have kids like the rest of us"—he argued that when corporations are mediating their own behavior, they can make bad choices and governments are often powerless to override them. His example was the hot-button case of drugs that can manage HIV and keep patients from dying of AIDS. In this case, he said, the executives priced their product to serve their shareholders, not the 99 percent of African AIDS patients who cannot afford the drugs.

The CEOs held firm that pricing notwithstanding, their industry has integrity, and that, in any event, genetic medicine will proceed with little limitation from ethicists and skeptics.

Lovins demurred. He compared the biotech industry to the nuclear power industry in the 1950s. In one session he reeled off the five stages through which these radical technologies fall out of favor and eventually die "of a terminal attack of market forces." In another session he opined that nuclear power was killed by "the pinstripe alliance, not the Clamshell Alliance." And in another panel, he told a story about a biotech zealot who suffered from increasingly scary nightmares involving various awful consequences that might proceed from bioengineering. "I knew nuclear scientists," Lovins said, "who had dreams like that just before the industry fell apart."

Copyright © 2000 State of the World, Inc.