Jolie, cancer, genetic testing and insurance

By , Posted on 15 May 2013

Angelina JolieWow, I have to say, I never thought I would know as much about Angelina Jolie's breasts as I do now.

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Jolie's op-ed about her decision to have a preventive double mastectomy is generating a lot of discussion, naturally.

Genetic testing showed that Jolie tested positive for a gene mutation that put her at a high risk for breast cancer.

"It sounds like an extreme choice but a woman who has inherited a harmful mutation of either the BRCA1 or BRCA2 gene is about five times more likely than average to develop breast cancer and up to 40 percent more likely to develop ovarian cancer, according to the National Cancer Institute," writes Liz Neporent of ABC News.

For women predisposed for breast cancer, having such surgery can lower their risk of developing the disease by 90 percent, says Dr. Mehra Golshan, director of Breast Surgical Services at the Dana-Farber Cancer Institute and Brigham and Women's Hospital.

But you don't have to be a celebrity to have your DNA tested. Advances in genetic testing are making the procedure more accessible for the average person. Typically, health insurance plans will cover the cost of testing if your doctor recommends it, though insurance providers have different policies about which tests are covered, according to the Genetics Home Reference website, run by the U.S. National Library of Medicine.

Beyond who pays the bill, there are, of course, other insurance implications. Chief among them is whether insurers can use genetic testing information when considering your coverage.

Health insurers are not allowed, under state and federal laws such as the  Genetic Information Nondiscrimination Act (GINA), to discriminate against anyone because of a genetic predisposition to a particular disease. But things get a bit murky when it comes to life, disability and long-term care coverage.

In some states, genetic test results are kept private under the Health Insurance Portability and Accountability Act (HIPAA), according to the National Conference of State Legislators. Other state laws say genetics information may be shared when there is “actuarial justification.” And in some states insurers can use your genetic test information though they can't do the testing themselves, writes Ed Leefeldt at Insure.com.

Meanwhile, if you or someone you know already has cancer or just received a diagnosis, read our five must-know facts about cancer insurance.

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Des Toups

Des Toups

Managing editor

dtoups@quinstreet.com

Des Toups is a writer, editor and expert on insurance, cars and personal finance. He has written extensively about all three for national publications such as MSN and major newspapers such as the Seattle Times. He has been quoted about insurance issues in The New York Times, USA Today and Kiplinger's. Follow him on Twitter @destoups.

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