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 The main reason, researchers found, is that the women’s doctors
didn’t recommend seeing a genetic counselor.
"There are very clear and consistent guidelines that people should
receive genetic counseling before genetic testing for cancer
susceptibility," said Dr. Rebecca Sutphen, the study's senior author
from the University of South Florida Morsani College of Medicine in
Tampa.
Although women who received counseling before gene testing were more
knowledgeable about the test and the meaning of its results, as well
as more satisfied overall, some experts say traditional genetic
counseling may no longer be the only or best option – especially as
gene tests become cheaper and more accessible.
BRCA 1 and BRCA 2 gene mutations are linked to about 5 to 10 percent
of all breast cancers, and about 15 percent of ovarian cancers,
according to the U.S. National Cancer Institute (NCI).
Genetic counselors typically explain the test's appropriateness,
medical implications, psychological risks and the possibility the
results won't be informative. They may also discuss the risk of
passing on the gene mutation to children.
The new study involved Aetna-insured women whose doctors ordered
BRCA testing in 2012. Several Aetna employees were on the research
team.
The insurer sent questionnaires to 11,159 women, but just 35 percent
returned them. The final analysis focused on 3,628 women.
Only about 37 percent said they'd received counseling from a trained
genetics professional in person or on the phone before the gene
test, the researchers report in JAMA Oncology.
Sutphen told Reuters Health that doesn't mean the vast majority of
women didn't receive some level of counseling, but it wasn't from
someone trained to counsel people about genetics.
Women most commonly said they didn't see a genetic counselor because
their doctors didn't recommend the service.
Those who did receive counseling were more knowledgeable about BRCA
and reported better understanding and satisfaction, compared to
women who didn't receive counseling.
The study shows patients and providers that there are benefits to
counseling by trained genetic counselors, Sutphen said.
"Many progressive providers like Aetna provide those services by
telephone," she said. "And, under the Affordable Care Act, genetic
counseling is a preventive service that is to be covered without out
of pocket cost to the patient."
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In an editorial, Dr. Steven Narod of the Women's College Research
Institute in Toronto writes that more women will likely be tested
for BRCA mutations with the cost of genetic testing now ranging from
$200 to $300. Whether traditional one-on-one genetic counseling
would benefit all of them, or is even feasible, is unclear, he
writes.
In the current study, one woman with genetic mutations was
identified for every 20 women counseled, but if testing becomes more
common, "we cannot expect to counsel 100 women for the sake of one
positive test result, so other forms of knowledge transfer (e.g.,
print or electronic media) need to be explored," Narod said.
Those sentiments were echoed by Robert Green, a medical geneticist
and physician-scientist at Brigham and Women’s Hospital in Boston.
Green, who was not involved in the new study, said his research
among people being tested for gene mutations tied to Alzheimer's
disease found no greater distress or depression in those receiving a
condensed genetic counseling session that included mailed brochures,
compared to those who met with counselors.
"I think as we imagine a world in which genomics is a daily practice
of medicine, traditional models of genetic counseling are probably
not feasible," he said. "We need to understand where genetic
counseling would be maintained and where new models of counseling
and testing should be incorporated."
SOURCE: http://bit.ly/1KPGGg4 and http://bit.ly/1KPGKMK JAMA
Oncology, online October 1, 2015.
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