Rethinking Policy in a Brave New World

Article excerpt

Your genotype could be a matter of public concern.

David Pelletier, associate professor in the Division of Nutritional Sciences, knows that the brave new world of genomics has those who devise public policy racing to catch up.

Pelletier is a member of the Ethical, Legal, and Social Issues (ELSI) committee, one of the several "thrust areas" of the Cornell Genomics Initiative. He also studies policy and sees that, as people learn more and more about themselves and their individual genetic profiles, policies affecting everything from dietary guidelines to chemical exposure limits will evolve to reflect that.

"When the National Institutes of Health began the Human Genomics Initiative, right from the get go they realized there were going to be these broader societal, ethical implications," Pelletier says. "So they actually set aside 5 percent of the genomics budget for research by ethicists, philosophers, sociologists, and humanists to examine some of the larger implications and the potential consequences. Universities were encouraged to form clusters of scholars and to establish networks, institutes, or programs. Just within this past year, Cornell got ELSI started."

The goal of ELSI, which is chaired by Stephen Hilgartner, associate professor of science and technology studies, is to engage people across many disciplines in research, education, and outreach activities on the social and ethical aspects of the new and developing biology. The ELSI committee is also charged with building research capacity and developing curricula.

Pelletier says he senses a "spirit of good will" among the ELSI members and other members of the Cornell Genomics Initiative. "There is a desire to work constructively with the scientists who are doing genomics research," he explains. "Scientists are as aware as anybody of the potential, unintended consequences, uses, and misuses of genomics research. It seems like the ELSI-CG1 effort could be very constructive."

Pelletier's own work has illustrated how current public and governmental policy can't keep up with the growing body of knowledge of genomics--and the impact of that knowledge.

The Division of Nutritional Sciences is studying various aspects of iron nutrition through a special grant from the U.S. Department of Agriculture, Pelletier says. "The issue I'm singling out in particular is hemochromatosis, which is iron overload. It's a genetic disorder that affects roughly a million and a half Americans. It usually expresses itself around age 50-60, when individuals learn that they have extraordinarily high blood iron stores; they realize that their livers, hearts, joints, and many parts of their bodies are just loaded with iron."

The hemochromatosis gene was discovered five or six years ago. About 10 percent of Americans carry a gene for the disorder, and only those who inherit two copies of the gene develop full symptoms, or about 0.5 percent of the population.

"This is the most common, genetic disease we know of so far in the American population," Pelletier says. While most people typically absorb only about 1 or 2 percent of dietary iron, those with hemochromatosis can absorb 30 to 40 percent. The disorder mainly affects men. "Women, through menstruation, are able to shed excess iron," Pelletier says. "That's why women with normal genotypes have iron deficiency more often than men, but those with the iron overload genotype seem to be somewhat protected from expressing this disease.

"Right now, the only clinical treatment for people, once they are identified, is literally to bleed them-to take a unit or two of blood per week for a couple of years until their iron stores go down. The disorder is fatal otherwise: it's a chronic, debilitating, and eventually fatal disease. So it takes 40 or 60 years to get to the point where you're impaired, and then you have to take drastic measures to get your iron stores down to normal levels. …