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New State Laws Target Genetic Discrimination

More states join push to make sure that genetic information remains private.

As the scientific community continues to make huge strides in the field of cloning, a growing number of statehouses around the US are stepping in to make sure that the advances in genetic tinkering don't hurt their citizens.

This year, 68 bills have been introduced in 28 state legislatures to prohibit human cloning or make sure that a person's genetic information remains private. In 1997, 16 states passed genetic-privacy laws, and more than a dozen were introduced in Congress. Seven states have even gone so far as to give people property rights to their genetic information.

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But the raft of legislation has raised ethical and moral questions, the foremost being: Who should have access to a person's genetic information and how it should be used? The decisions that different states come to could have a significant impact, not only on scientists, but on the role that genetic blueprints will have in determining how a person is treated in the future.

"The fear is that our genes provide a lot of very personal information about us, and unless there are ways to protect access to this information, we might be at risk for discrimination for employment," says Jeffrey Botkin, associate professor of medical ethics at the University of Utah in Salt Lake City.

Genes can be used in paternity suits and rape cases, and more and more physicians use genetic testing to determine whether a person is susceptible to certain kinds of illnesses. Through these types of testing, some 290 million biological samples have been taken and are stored around the United States. But many physicians say lawmakers' efforts to regulate the use of this information goes too far.

"The concern within the research community is that these kinds of restrictions are well-intentioned, but excessive," says Dr. Botkin. "There's virtually no good data on actual instances of discrimination."

Here in Utah, for example, the biotech industry is helping rewrite a genetic-protection bill from last year. The Mormon emphasis on genealogical research has helped make the state a global leader in researching genetic disease prediction. Yet the bill would have required that all genetic material used in research be anonymous: Either the individual identifiers would have to be removed from the genetic material, or the material would have to be destroyed. To researchers, that meant they would have no way of verifying their data or tracking familial links.

Elsewhere, other observers have also suggested that these new laws may have an adverse effect on the economy. A new report from the Center for the New West warns that the legislative trend has the potential to shut down the burgeoning biotech industry. Some 85 percent of all new drugs are developed in the United States, and Western states have become headquarters to more biotech companies than any other region in the world.

Lawmakers' biggest target, however, has been the insurance industry. A recent GOP managed-care reform plan includes provisions to keep insurance companies from using genetic information to deny coverage, and New Mexico's new Genetic Information Privacy Act keeps them from using genetic information without written consent. "It was sort of a civil-rights issue that finally focused on discrimination in insurance," says Rep. Danice Picraux of New Mexico. "With genetic information, people can make decisions and discriminate against you and there's nothing you can do about it."

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Yet according to Botkin, the debate points up a larger issue. "If you really want to solve the problem, it goes beyond genetics to how we as a society want to [insure] people with health problems," he says. That's not in the offing, though. And for her part, Representative Picraux just wants to take the first steps. "This is a start, and we were trying to be very careful," she says.

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