A FEW WEEKS after the Genetic-Testing Task Force's debate on breast cancer tests, the genome project's ethicist-in-residence, Dartmouth bioethicist Ron Green, organizes another ELSI debate on genetic screening. The debate takes place at a conference room in the new Silvio Conte building, which, like many buildings on the NIH campus, is named for a congressmen who doled out millions to the scientists working here. This time, the focus isn't breast cancer but hemochromatosis, which while not exactly a household name happens to be one of the most common inherited disorders in America, affecting up to one million people. In hemochromatosis, the body absorbs too much iron, which eventually can damage the vital organs-causing liver cancer, diabetes, heart disease, and a host of other problems. In the vast majority of cases, the disease is apparently caused by having two copies of the same mutated gene. Once detected, it's treated with a seventeenth-century therapy: bloodletting.
The ELSI debate-winningly titled "Hemochromatosis: Poster Child for Genetic Screening?"-proves to be a lively one. NIH molecular geneticist Dennis Drayna-who is also on the scientific board of Mercator Genetics, the California biotech company that announced the isolation of the hemochromatosis gene in July-argues enthusiastically for some kind of screening program. (Not coincidentally, his company has filed for a patent for the hemochromatosis gene and stands to make millions if the government encourages hemochromatosis screening.) "I'm going to play the capitalist here and say that if there was ever a case for genetic screening, this is it," Drayna enthuses. If the entire population were screened, he says, those who tested positive could come in every year to have their blood tested. If they had too much iron, they could be bled-twice a week to start, then a couple times a year. Simple. Well, sort of, except that Drayna had walked into an ELSI lion's den: Half the audience of fifty or so seems to be philosophers, ethicists, and antiestablishment scientists, many of them fresh from the breast cancer gene debate. Immediately, his presumptions are questioned: What about the loss of health insurance if you test positive for hemochromatosis? Will HMOs pay to draw blood from a healthy person? What about false negatives-the 13 percent of hemochromatosis sufferers who, for some mysterious reason, don't have the gene? Is this newfangled test any better-or cheaper-than existing blood tests for hemochromatosis? Elizabeth Thomson, a senior ELSI official at the genome project, suggests that Drayna and his colleagues have got carried away with the elegance of their science and the desire to recoup their research costs. "Since when do we start diagnosing people not based on their health but based on their genotype?" she asks. "Why should we believe a gene test rather than what we see in front of us?"
After two hours of discussion, Drayna gets in the last word: "About one in ten Americans has at least one copy of the hemochromatosis gene. That means someone in this room is a carrier," he says, striking an ominous note. "And there is some evidence that [having only one gene] can affect your health."
A few ELSI types aren't going to interfere with Mercator Genetics' plan to distribute the gene test, Drayna says later. But the questions raised at this in-house forum will come up again this month when officials from the NIH and the Centers for Disease Control (CDC) meet in Atlanta to discuss hemochromatosis. In this way, the ELSI forum may have an impact on the CDC's proposed screening guidelines, guidelines that practitioners will eventually follow in deciding whether to use Mercator's test. Drayna has no problem with that, he says; the ethicists help companies like Mercator work through problems before their products get to market. Ultimately, however, it's the market that is going to decide their value. If HMOs think the Mercator test will help save them money by identifying hemochromatosis patients who won't have to get liver transplants, then HMOs will pay for the test-they will insist on it, in fact. In other words, "quality control." That may be the biggest impact that ELSI can hope for.
THE HUMAN Genome Project is scheduled to close up shop in 2005. And when it does, ELSI will shut down as well. The program's effort to banish genetic reductionism and limit the spread of high-tech genetic hucksterism will then become the responsibility of other institutions, and of society at large. It's a big challenge, but perhaps not as big as it seems. Celeste Condit, a University of Georgia communications professor who has collected survey data to gauge perceptions of genetic determinism in U.S. society, says such beliefs don't run as deep as many ELSI scholars assume. People don't need ethicists in order to believe in free will; they've been skeptical about the Holy Grail theory of genetics for a long time.
George Annas, the Boston University ethicist, casts the spread of genetic knowledge and entrepreneurialism in a different light. He's equally optimistic, though in his own way.
"To try to educate the American people about genetics is a formidable challenge," Annas says. "The only gene they care about is the fat gene. Can I get an injection of that and eat all I want? My guess is that most people don't believe anything they hear about any of this, and that's one reason they don't run out and get the breast cancer gene test. They've learned news is entertainment. They're entertained, but they don't run out and buy it. And that's mostly a good thing."
Arthur Allen is a writer who lives in Washington, D.C. His article, "Our MBAs in Havana," appeared in the July/August 1996 issue of Lingua Franca.