Taking on genetic testing abuse

The mother, in her 40s, survived breast cancer and wanted to know whether it was the hereditary kind that could be passed to her daughter.

But the Grand Island, Neb., woman balked at genetic testing out of fear that her daughter’s insurance company could get the results and drop the daughter’s health coverage.

“She was afraid it would put a big ‘X’ on her daughter,’’ said Teresa Castellano, a genetic counselor at St. Elizabeth Regional Medical Center in Lincoln.

Such fears make some patients leery of genetic testing. But Castellano and other experts say a new federal law — the key regulations took effect this month — could ease some of those worries.

The law prohibits health insurance providers from using genetic information to deny health insurance coverage or to set rates.

Experts say the federal law comes as the number of genetic tests available is growing, providing more opportunities to determine a predisposition for cancer and other diseases.

“The timing is critical,” said Elizabeth Kearney of the National Society of Genetic Counselors.

The law also comes as Congress is debating a health care overhaul aimed at curbing cost increases and insuring more people, and as some insurance providers have started charging higher rates to smokers.

A spokesman for a major industry group said it backed the new law’s intention to prohibit insurers from denying coverage or setting rates based on genetic information.

Insurance providers don’t use the information in that way, but the law gives consumers peace of mind, said Robert Zirkelbach of America’s Health Insurance Plans.

He said being genetically predisposed to a certain type of cancer is different from being a smoker, which is a choice.

Still, his group thinks some of the regulations related to the new law go too far. Zirkelbach said those regulations could keep insurance providers from getting any genetic information.

Such information, he said, can help insurance providers create wellness plans and programs that can prevent a person from getting a certain disease to which there is a predisposition.

Keith Mueller, a health insurance expert at the University of Nebraska Medical Center, said the health care overhaul making its way through Congress makes the same distinction: It would allow insurance providers to charge smokers higher premiums but prohibit them from denying coverage or setting premiums based on pre-existing conditions.

Diabetes and other diseases that exhibit symptoms have been a focus of the debate, he said.

Mueller said what’s different about the new federal law is that it’s aimed specifically at the use of genetic information.

Consumers today have more choices for genetic tests. A decade ago, several hundred were available; now, there are more than 1,500, Kearney said.

Even though some patients have been wary of how the results can be used, Kearney said, demand has grown for tests, including those for breast cancer, colon cancer and certain types of heart disease.

The new federal law — which does not apply to life, disability or long-term-care insurance plans — builds on a Nebraska law on genetic testing that took effect in 2001.

Nebraska’s law provides consumers similar health insurance protections on genetic testing, but only for plans sold by an insurance company to an employer or to an individual.

The state law does not cover self-funded plans, which make up about half the health insurance plans in Nebraska, said Ann Frohman, state insurance director. Self-funded plans are common among major employers.

Iowa does not have a law providing health insurance protections for genetic testing but does have provisions in place for enforcing the new federal law.

Another provision in the new federal law prohibits employers from using genetic information or family medical history in hiring and other aspects of employment. That provision went into effect last month.

Nebraska already had a law that provides similar protections to employees. Iowa did not.

Genetic counselors say there is no evidence of insurance companies denying coverage because of test results showing higher risks for a disease.

Blue Cross Blue Shield of Nebraska, one of the state’s largest insurance providers, said it wasn’t a problem, even before the state’s law took effect.

“Blue Cross and Blue Shield of Nebraska does not, and never has, used confidential genetic information for eligibility or underwriting purposes,” said Dr. Bill Minier, vice president and medical director.

But genetic counselors say some patients have serious concerns that the results of testing will affect their insurance or employment. That fear stops some of them from undergoing testing or leads them to pay out of pocket for the testing, in the hope their insurance company or employer will not find out.

Linda Robinson, a genetic counseling supervisor at the University of Texas Southwestern Medical Center at Dallas, said the hiring provisions are important for anyone with a family history of disease.

“We don’t want somebody to say, ‘Oh, you can’t have a job because you might get sick in 20 years,’” Robinson said.

Genetic testing isn’t perfect, said Rebecca Anderson, associate professor of law and ethics at the University of Nebraska Medical Center.

Tests can produce false positives and false negatives. And even if a test is accurate, a predisposition doesn’t guarantee that the disease will develop.

The testing also can be expensive, ranging from $50 to more than $4,000, and it’s not always covered by insurance, she said.

Anderson said it’s essential that people discuss the testing with a genetic counselor and weigh the benefits against the risks.

Kearney said proper testing can identify potential health problems — and save lives.

“It’s empowering for a patient,’’ she said. “They become aware of the risks they face.”

Counselor Castellano said the Grand Island mother has continued to struggle over whether to have genetic testing.

Castellano said it’s unlikely that the daughter’s insurance company would ever find out the results.

But she said the new federal law will provide reassurance to her and other patients that the genetic information will not be misused.

This report includes material from the Fort Worth Star-Telegram.

Contact the writer:

444-1122, michael.oconnor@owh.com

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