care providers and insurers agree that itís in everyoneís
best interest to refer women for genetic testing if their
family history of breast or ovarian cancer puts them at higher
risk. What they donít agree on is what should happen before
testing, specifically whether women need to be advised by a
certified genetic counselor or someone with similar training
before the test is ordered.
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, they are considered
competent to provide this type of care.
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."
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.
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.
statement released last December, the physicians group said it
opposed such a restriction and warned that it limits patientsí
access to care.
sometimes take a different view, although their rules vary.
Two national insurers, UnitedHealthcare and Cigna, 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 mutations in two
genes, BRCA1 and BRCA2, that increase the risk for breast,
ovarian and other cancers.
began requiring genetic counseling for BRCA tests in January.
The insurer allows physicians to do the counseling themselves
if they attest theyíre qualified to do so, said Dr. Lee
Newcomer, senior vice president for oncology and genetics.
made counseling a requirement in 2013 for BRCA and colorectal
hereditary cancers and a heart condition called Long-QT. In
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, Cignaís medical
officer for clinical performance and quality.
mutations increase a womanís risk of developing breast
cancer by age 70 by between 45 and 65 percent. They account
for 5 to 10 percent of all breast cancers. BRCA mutations
raise womenís risk of ovarian and other cancers as well.
There are other known genetic mutations that also increase a
womanís risk for breast and ovarian cancers, but they are
less commonly tested for.
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 theyíre at increased risk for BRCA
mutations and referred for genetic counseling and testing, if
the health law, women with insurance arenít responsible for
paying anything out of pocket for the testing and counseling
recommended by the task force if itís performed by
health law coverage requirement didnít drive Cignaís BRCA
genetic counseling decision, said Hankoff.
had concerns that people were having testing ordered that didnít
appear to need it and probably didnít understand it,"
Hankoff said. In addition, "Too often the wrong tests
were being ordered."
example, a woman whose sister has been diagnosed with breast
cancer and tested positive for a specific mutation doesnít
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.
counselors, meanwhile, try to walk a middle line in the
debate. To become certified, people complete a masterís
degree program that encompasses both classroom study and
clinical training in genetics, ethics and the psychosocial
aspects of helping families through diagnosis and the
decision-making process, among other things. Certification by
the American Board of Genetic Counseling is typically required
in order to practice.
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] donít have the time or interest to do this
number of genetic tests growing by leaps and bounds, meeting
the demand for counseling can be a challenge, experts agree.
donít necessarily get it right. For one thing, they often
arenít great at taking family histories, neglecting to
gather information about the men in a family, for example, or
factoring in close relatives who died at a young age, said
Robert Smith, a cancer epidemiologist who is vice president
for cancer screening at the American Cancer Society.
everybody has a set of family members that allow for the
elevated risk to be obvious," Smith said. "Thereís
a lot to be said for having a specialist do it."