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Genomic Sector Split on Need for Tough Genetic-Privacy Legislation

WASHINGTON, DC, Oct. 11 - Congress should move to enact comprehensive and strong legislation guaranteeing patients privacy rights over their genetic information and prohibiting employment discrimination based on genetic profiles, the president of Affymetrix told legislative aides here on Wednesday.

Speaking with other representatives from the genomics industry at a briefing with Senate staffers, Susan Siegel, president of the microarray giant, said that the public’s acceptance of genome-based technology and its willingness to participate in clinical research hinge on the perception that the information will remain private and will not be used by insurers or employers to discriminate. 

Currently 23 states have some form of genetic-privacy or non-discrimination law on the books. However, those laws do not go far enough, Siegel said. “Most of us view these as fundamental rules of fair play that should apply regardless of where someone’s zip code might be,” she said. “We actually need a standard of privacy and non-discrimination that protects all Americans.”

To be sure, federal law already prohibits insurers from using genetic information as a means for denying coverage or classifying an illness as pre-existing. Those provisions came with passage of the Health Insurance Portability and Accountability Act in 1996.

But at issue these days is how employers should handle the results of genetic tests made possible by microarray technology. And while many policy makers and consumer groups seek tight controls, some biotech companies and researchers worry that laws that are too strict could hurt scientists’ access to aggregate genetic information.

At her appearance on Capitol Hill, Siegel voiced these concerns by saying that any new legislation Congress comes up with should include language addressing scientific research so that new statutes don’t stifle innovation.

Others urged greater caution. Hugh Reinhoff, former chairman and CEO of DNA Sciences, urged policy makers to move slowly before enacting a broad genetic-privacy or non-discrimination law. He also reminded policy makers that few of the genetic tests expected to come to market in the coming years will be able to definitively predict disease, which may limit the ability to use genetic information to discriminate.

Since most common diseases are not passed along through Mendelian genetics the way, say, Huntington’s disease is, most tests will only be able to assign a patient’s probability  of developing an illness.

“That’s no different than identifying that this patient has a cholesterol of 350,” Reinhoff said. 

Instead he suggested Capitol Hill should take a “population approach” to genetic testing and recognize that epidemiologists will need access to vast amounts of aggregate genetic data in order to make sense of complex interactions between genes, the environment, and disease.

Still, the public may never have faith in the value of genetic testing until its validity is improved, said Neil Holtzman, director of Genetics and Policy Studies at Johns Hopkins University, in Baltimore. Holtzman said that the Food and Drug Administration should oversee genetic testing more strictly, lest consumers begin taking tests that yield little valuable information yet expose them to potential discrimination.

“If we’re really going to protect the public … then a major concern is ensuring the quality and validity of these tests,” he said. 

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