Health care providers and insurers agree that it’s in everyone’s best interest to refer women for genetic testing if their family history of breast or ovarian cancer puts them at higher risk. What they don’t agree on is what should happen before testing — whether women need to be advised by a certified genetic counselor or someone with similar training before the test is ordered.
On the one hand, obstetrician-gynecologists say that counseling patients about hereditary cancers of the breast, ovaries, uterus and other reproductive organs is part of their normal routine, as is counseling pregnant patients about prenatal genetic testing. As licensed physicians, OB-GYNs are considered competent to provide this type of care.
“This is what we do,” said Dr. Mark DeFrancesco, the immediate past president of the American Congress of Obstetricians and Gynecologists, noting that most physicians have been taking family histories since medical school. “There are simple-to-understand criteria for who should be considered for genetic testing, and it usually has to do with whether you or someone in your family has had cancer.”
DeFrancesco recalled a patient whose mother, grandmother and maternal aunt all had breast cancer — but the insurer required she see a genetic counselor before testing would be approved.
In such cases, “it will take a few extra weeks to get tested, and she might decide not to bother,” he said.
DeFrancesco said genetic counselors have an important role to play after testing has been done to help patients who test positive for a genetic mutation understand the results.
In a statement released last December, the physicians group said it opposed such restrictions by insurers, and warned that the requirement limits some patients’ access to care.
But insurers sometimes take a different view, although their rules vary. Two national insurers, UnitedHealthcare and Cigna, for example, require women to receive counseling by a certified genetic counselor or other professional trained in cancer genetics before they will approve coverage for tests that look for harmful irregularities in BRCA1 and BRCA2, the two genes most commonly linked to an increased risk for cancers of the breast, ovaries and some other organs.
UnitedHealthcare began requiring genetic counseling for BRCA tests in January. The insurer allows physicians to do the counseling themselves if they attest to being qualified to do so, said Dr. Lee Newcomer, senior vice president for oncology and genetics.
In 2013, Cigna made independent counseling by counselors unaffiliated with the testing lab a requirement for any patient getting a genetic test for BRCA mutations or for inherited mutations linked to colorectal cancers or a heart condition called Long-QT. Last July, the company expanded the list to include all hereditary cancers.
Cigna generally requires physicians to get additional training in cancer genetics in order to meet its counseling requirement, said Dr. Jeffrey Hankoff, Cigna’s medical officer for clinical performance and quality.
BRCA mutations increase a woman’s risk of developing breast cancer by age 70 by between 45 and 65 percent, the evidence suggests. Mutations in these two genes are thought to account for about 5 to 10 percent of all breast cancers, and raise a woman’s risk of develping ovarian and other cancers, as well.
There are other particular genetic mutations known to increase the risk for breast and ovarian cancers, but they are less commonly tested for.
The U.S. Preventive Services Task Force, an independent panel of medical experts, recommends that women with a family history of breast, ovarian, fallopian tube or peritoneal cancer be screened to determine if they’re at increased risk for BRCA mutations, and be referred for genetic counseling and testing, if that’s indicated.
Under the Affordable Care Act, women with insurance aren’t responsible for paying anything out-of-pocket for the testing and counseling recommended by the task force if it is performed by in-network providers.
The health law coverage requirement didn’t drive Cigna’s BRCA genetic counseling decision, said Hankoff.
“We had concerns that people were having testing ordered that didn’t appear to need it and probably didn’t understand it,” Hankoff said. In addition, “Too often the wrong tests were being ordered.”
For example, a woman whose sister has been diagnosed with breast cancer and tested positive for a specific mutation doesn’t need a genetic test that looks for all hereditary breast cancer mutations, Hankoff said. She only needs to be tested for the specific mutation that her sister has.
Genetic counselors, meanwhile, try to walk a middle line in the debate. To become certified, people complete a master’s degree program that encompasses both classroom study and clinical training in, among other things, genetics, ethics and the psychosocial aspects of helping families through diagnosis and the decision-making process. Certification by the American Board of Genetic Counseling is typically required in order to practice.
“There are a lot of complexities with genetic testing,” said Mary Freivogel, president-elect of the National Society of Genetic Counselors, who practices in the Denver area. “A lot of [OB-GYNs] don’t have the time or interest to do this well.”
With the number of genetic tests growing by leaps and bounds, meeting the demand for counseling can be a challenge, many in the cancer field agree.
And physicians don’t necessarily get it right. For one thing, said Robert Smith, a cancer epidemiologist who is vice president for cancer screening at the American Cancer Society, they often aren’t great at taking family histories, neglecting to gather information about male relatives, for example. Or they don’t factor in close relatives who died at a young age.
“Not everybody has a set of family members that allow for the elevated risk to be obvious,” Smith said. “There’s a lot to be said for having a specialist do it.”
Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Michelle Andrews is on Twitter:@mandrews110.