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Industry Hails Genetic Nondiscrimination Bill

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Insurance industry groups are hailing genetic nondiscrimination legislation that the Senate passed April 24 by a 95 to 0 vote.

The legislation, known as the Genetic Information Nondiscrimination Act, or H.R. 493, bars discrimination by employers and health insurers on the basis of genetic testing.

The legislation had already been passed in the House, but had run into a roadblock when Sen. Tom Coburn, R-Okla., stopped it from being debated on the Senate floor over concerns that employers would be subject to litigation over medical coverage disputes.

That concern was assuaged by the adding of a “firewall” between the portions of the bill relating to employers and those governing insurers.

The bill will now be sent to the White House.

John Greene, vice president of congressional affairs for the National Association of Health Underwriters, said the “firewall” between the two provided an important protection that improved the overall bill. Overall, Greene said HR 493 “is a good compromise that isn’t going to impact the costs of insurance,” while allowing for better access to genetic testing and the potential benefits it can provide.

Mohit Ghose, a spokesman for America’s Health Insurance Plans, said the process of getting a bill passed “has been going on for several years” and that AHIP has been working with lawmakers to ensure the bill would not impede the ability of its members or clinicians to use genetic information when appropriate.

The issue for insurance and genetic testing, Greene said, “has always been about definitions.” As an example, he said that if a patient tested positive for high cholesterol, that test would be diagnostic and the patients insurance would cover treatment and drugs. However, he said, if the test was a genetic one, the insurer might not cover the costs for drugs and treatment.

“You have to be careful how you define what makes a genetic test,” he said.

Additionally, Greene noted that in only a few cases does the presence of a genetic marker mean that an individual will definitely be stricken with a particular disease. “In most cases, a genetic test doesn’t mean you’re necessarily going to manifest” the disease in question, he said, noting that other factors such as environment play an equally important role. “Most of us,” he added, “have something.”

AHIP, Ghose said, is “supportive” of the bill and wants consumers to “rest assured that their genetic information will not be used against them.” Instead, he said, the focus for AHIP has been to ensure that health plans and clinicians can have access to genetic testing and information for “appropriate uses” in providing better quality and access to care. As an example, he said that a treatment for breast cancer may be developed that works better for individuals with a certain gene, and that therefore patients would be best served by being tested for that gene.

AHIP, he said, “absolutely recognizes” that genetic information should be kept private and not used in any discriminatory way, but the group also wants to ensure that such information will be kept among the tools for treatment.


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