New law bans use of genetic testing for health insurance

FORT WORTH, Texas - Janet Cunningham has a strong family history of ovarian and breast cancer, and her sister has already tested positive for the genetic marker that puts her at heightened risk for the disease.

Now Cunningham wants to know whether she, too, has the marker. But if she tests positive, does that mean she and her three daughters could not get health insurance?

Not anymore.

A federal law, the Genetic Information Nondiscrimination Act of 2008, or GINA, goes into effect Dec. 7, prohibiting insurance companies from using family medical histories or genetic testing to deny medical insurance or set rates.

The federal law will expand on a Texas law that prohibits use of genetic test results in determining large group medical insurance coverage and in hiring. The federal law further prohibits the use of family medical histories and expands protection to those who have individual insurance and smaller group plans.

For Cunningham, 48, of Fort Worth, that means her mother's death from ovarian cancer and her sister's fight with ovarian, breast and now uterine cancer cannot be used against her or her children.

"I want to know now - I've got three girls," Cunningham said recently, as she had blood drawn at the JPS Health Center for Women in Fort Worth. JPS provides the testing with support from the Susan B. Komen for the Cure Foundation, Moncrief Cancer Resources and UT Southwestern.

"I knew right away I would do it."

Another provision in the federal law, which prohibits employers from using genetic information or family medical history in hiring, went into effect Saturday. The new law does not apply to life, disability or long-term care insurance plans.

Cunningham is being tested for the BRCA1 gene, a marker that would put her at risk for ovarian, breast and some other cancers. Her blood samples were collected at JPS and then sent to Utah, to the only company in the country that performs the genetic test.

If she is positive, then her three daughters will also be tested. If she is negative, they, too, will be negative.

Linda Robinson, a genetic counselor supervisor with the University of Texas Southwestern Medical Center at Dallas, said the new law could encourage people to be tested for known markers that put them at increased risk for certain cancers. Although there have been no documented cases where insurance has been denied because of a genetic test, many people are worried that the information will be used against them, she said.

"We're not seeing patients denied because they've had a genetic test," Robinson said. "It's definitely been a concern, though, over the last nine to10 years."

The hiring provisions are also important for those with a family history of disease, she said.

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

The test generally costs about $3,000, and about $500 for subsequent tests of family members, Robinson said.

Robinson believes that the new law will grow in importance as genetic testing advances.

"This is a very forward-thinking law," she said. "Everybody is at risk to some disease based on your genes, and as the technology is moving forward, it's not just a predisposition to cancer anymore. It's a predisposition to diabetes, heart disease.

"I think this law will really ease concerns about discrimination that is keeping people from getting these genetic tests."

For some local businesses, the new provision for health insurance will mean a shift in how they set up their group medical plans.

Some North Texas companies now use health risk assessment forms, including family histories, in determining whether employees are eligible for group insurance, particularly top-tier plans. Those companies are now working to revise their programs to exclude that information, said Dallas attorney Robert Gully, who works with employers and group health plans.

That doesn't mean someone who already has the illness won't face problems - the law does not prohibit use of the individual's own medical history. But it does mean that a grandfather's heart disease or aunt's cancer will not be used against a person in obtaining insurance or in hiring.

"If someone has a disease or disorder, they can take that into account," Gully said. "For individuals that may have hereditary issues, this will make it easier for them to get health insurance."

Some companies are now rewriting their health assessments to remove questions about family history; others are simply notifying workers that the responses are voluntary.

"It would be best if the assessment didn't have anything to do with family," Gully said.

ON THE WEB

For information about genetic testing:

- National Society of Genetic Counselors, www.nsgc.org.

- Genetic Alliance, www.geneticalliance.org.

(c) 2009, Fort Worth Star-Telegram.

Distributed by McClatchy-Tribune Information Services.