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Genetic testing for breast cancer: When should it be done?

Angelina Jolie’s dramatic decision in 2013 to have a preventative double mastectomy raised awareness around the world of the importance of genetic testing for cancer. She reached the decision after tests revealed the presence of a mutated gene that predisposed her to breast cancer.

Researchers responded by trying to understand the influence that Jolie’s bold decision had on other women in getting tested for breast cancer, especially women with high hereditary risk. There was also research on whether having both breasts removed really is beneficial for women after a tumor is discovered in one.

The “Jolie effect” (as researchers call it) has made more women aware of genetic testing. But when should such testing be done? And are insurance companies dragging their feet in paying for it?

Disagreements between doctors and insurers

Doctors say that genetic testing is useful in predicting the chances that someone will develop cancer. This is particularly true it comes to cancers of women’s reproductive organs, including the breasts, uterus and ovaries.

Insurance companies, however, do not always agree with doctors about when genetic testing should be done. As a result, some insurers now require that patients meet with a genetic counselor before having genetic testing for cancer. This extra step can add weeks to the process, which may lead a patient to not go ahead with testing.

Doctors contend that this practice delays and prevents effective early cancer treatment. Insurers say that many genetic tests are not necessary, depending on the patient’s family history, but get ordered anyway.

Who should pay?

Many health insurance plans do pay for genetic testing. But different plans have different types of coverage.

There are also people who choose to pay for genetic testing out of their own pockets. This method of paying helps patients keep their information more private.

But let’s be clear about what the federal health care law (the Affordable Care Act) requires. If you are a woman with a family history of certain types of cancer (including breast and ovarian), your insurance company is required to pay for genetic testing and counseling – as long as it is done by providers within your network.

Making good decisions

Even when it is paid for, however, there is still a lot to do to make genetic testing as effective as possible.

In part, this is because there are a lot of complexities involved in deciding what to test for. Having a genetic counselor involved can help to make sense of these complexities.

But doctors sometimes make it more difficult for genetic counselors to do their jobs. Doctors may do this by failing to gather enough information about a patient’s family history in order to facilitate an informed decision about genetic testing.

Getting the help you need

The stakes are high in cancer screening. Failure to catch cancer in time can be a virtual death sentence or condemn someone to painful, intrusive treatment.

If this has happened in your family, you are dealing with a profound, bewildering loss. And if you believe that the loss may have occurred because doctors didn’t act with due care, it makes sense to talk with a knowledgeable attorney to get your questions answered.