You may be more like Angelina Jolie than you think.
No, you’re not a movie star and you probably don’t have six children and you’re certainly not married to Brad Pitt, but given the pace of scientific advances, you may, like Jolie, be getting a genetic test at some point in your life.
Such testing is available for many more diseases than the two Jolie tested for: breast and ovarian cancer. There’s genetic testing for a host of other cancers, such as colon, endometrial, and pancreatic, as well as for autism and some forms of heart disease, even Alzheimer’s and Parkinson’s diseases.
In all, there are 26,000 genetic tests available for 5,400 conditions, according to the NIH Genetic Testing Registry.
“And that list is growing fast. Like rocket ship fast,” says Art Caplan, a medical ethicist at New York University.
But it’s important to do genetic testing right, because it’s easy to goof. You can easily get the wrong test, or miss the right one, or misinterpret the results.
Since there’s a reasonably good chance genetic testing is in your future, here’s what you need to know.
1. Don’t go online. Don’t go to your family doctor. Go to a genetic counselor.
Dr. Otis Brawley, the chief medical officer of the American Cancer Society, tells the story of a patient with a family history of breast cancer who went to her family doctor specifically asking for testing for breast cancer, or BRCA genes.
The doctor complied, and the BRCA test was negative. The woman went on about her life. Then ten years later, she was diagnosed with cancer.
She was then sent her to a genetic counselor, who told the woman that her family doctor had goofed. In addition to BRCA testing, she should have been tested for other genes linked to breast cancer. The woman had that testing, and it turned out she had a mutation in a gene called PTEN. If she’d known ten years earlier, she might have been able to prevent her cancer.
Your family doctor simply doesn’t know as much about genetic testing as a genetic counselor does. Plus, a counselor will spend an hour or even more with you on the initial consultation to get it right. Family doctors typically don’t have that kind of time.
The National Society of Genetic Counselors has an online search tool to find a counselor near you. If none are convenient, you can get help online and by phone from a counselor at Informed DNA.
2. Make sure you really need genetic testing
Don’t get tested just because you’re curious about your genes. That can lead you down a rabbit hole, because sometimes these tests come up with results that are inconclusive or meaningless and you’ll spend the rest of your life worrying about them.
Experts recommend only getting testing when you have a family history of a certain disease. Jolie’s mother, sister, and aunt had ovarian cancer, for example, so it was prudent of her test for it.
The American Cancer Society has guidelines for who should receive genetic testing.
3. If you need it, genetic testing may not be as expensive as you think
When Jolie published her op-ed Tuesday in the New York Times, some scoffed that being a wealthy woman, she had access to testing that the rest of us might not have.
But that’s just not true.
The first step, talking to a genetic counselor, is not terribly expensive. A consultation costs about $150 to $300.
If you can’t afford that, genetic counselors will often work with you to bring the price down, according to Joy Larsen Haidley, the president of the National Society of Genetic Counselors.
If you’re specifically concerned about breast or ovarian cancer, call a group called FORCE at 1-866-288-7475 and they’ll get you on the phone with a genetic counselor for free.
The price for the testing itself has come down recently, especially for breast and ovarian cancer, since two years ago the Supreme Court broke up a monopoly on such testing. Obamacare requires insurance plans that began on or after August 1, 2012, to cover genetic testing when it’s recommended by a provider, according to the Susan G. Komen foundation.
The Myriad Financial Assistance Program and the Cancer Resource Foundation both offer financial assistance for certain cancer genetic testing.
4. Don’t panic about meaningless results
Chances are, your testing will come back with something not quite “right.”
“Everybody fails a genetic test,” Caplan says. “There’s always something wrong. You’re mortal. You won’t pass.”
But there’s a good chance that the “something wrong” will be inconsequential.
“I’ve seen people panic because the testing showed instead of having a one in five million chance of getting some disease, they have a one in a million chance. But really, does it matter?” he says.
Again, a genetic counselor can help you interpret your results. If you go to your family doctor, she might be unfamiliar with them and not know what to advice. If you do online testing, you may be on your own.
5. Think through your responses to testing very carefully
Remember that not all genetic abnormalities are created equal.
Jolie, for example, had a particularly bad mutation on her BRCA gene that gave her about an 87% chance of getting breast cancer in her lifetime. Other mutations might give a woman a 15% chance of getting breast cancer, which is not that much higher than the 12% chance a woman has without any mutations at all.
“To get surgery in their situation is really overkill,” Brawley says.
Even if you do have a serious genetic abnormality, it’s not written in stone what you should do.
