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The following is an archived video story. The text content of that video story is available below for reference. The original video has been deleted and is no longer available.

Loophole in genetic testing law

by Rachel Glaser

Rochester, N.Y. -- People who undergo increasingly popular genetic testing could be penalized, forced to pay higher premiums or denied coverage for certain policies.

"Before the genetic testing became so commonplace, it's something that wouldn't have been a factor in consideration for insurance policies, so I definitely think it's a problem with the law the way it's written," said Cindy Dykes, a cancer survivor.

Authored by Rep. Louise Slaughter, the Genetic Information Nondiscrimination Act, known as GINA, bans employers and health insurers from seeking the results of genetic tests.

But the 2008 federal law has a loophole. It does not apply to life, long-term care or disability insurance. So for those policies, insurers can raise premiums or deny coverage based a person's genetics.

"It kind of skews what they are seeing about me," said Dykes, a healthy, active 54-year-old who has been living cancer free for eight years now.

Well aware of the cost of health care and thinking about their family's future, Dykes and her husband applied for life and long-term care insurance in October, 2013. Dykes filled out the application and completed the physical but then the insurance company called with concerns.

"The last question was about a request or recommendation that I receive genetic testing that they saw in my medical records, and I mentioned at that time that I was tested and that was the last I heard from them," she said.

Diagnosed with breast cancer in 2008, Dykes underwent genetic testing to see if she carries a gene that increases the risk of breast and ovarian cancer. With a strong family history, Dykes said a doctor recommended she get the test to determine if she inherited that gene. Already battling the disease, Dykes decided to do the testing so her relatives would know if they were also at risk.

The same year, GINA was signed into law. Dykes thought her results would be confidential, and a lot of people don't know about the omission until they're denied coverage.

"So it might make a difference to whether or not they seek genetic testing, although getting the genetic testing could make a difference to them or their family," Dykes said.

In here case, the genetic testing didn't make a difference. Results show Dykes doesn't carry the genetic mutations that increase the risk of breast and ovarian cancer but she believes just the mention of the test raised a red flag for the insurance company.

"They wanted the information about when I was tested, where I was tested, presumably to get those results, which I provided and but again, that was the last I heard from them," she said.

It took the insurance company a few weeks to approve her husband's policy but almost eight months later, Dykes still doesn't have coverage but hasn't been officially denied either.

"It is a little scary," she said. "We are going to see if we can pursue other options if there are other carriers that might take us but at what cost differential, I don't know."

Slaughter declined to comment for our report but has said it took 14 years to get GINA passed into a law. Sponsors of the act were aware of the loophole, but argue the protection it does offer is better than nothing. There are no current plans to revise the law.

 
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