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 About a quarter of people who ordered direct-to-consumer genetic
testing from companies like 23andMe reported discussing the results
with their primary care doctors. But nearly one in five were not at
all satisfied with the conversations, researchers report.
How doctors react to patients' direct-to-consumer genetic test
results matters, said senior author Dr. Robert Green, director of
the Genomes2People Research Program at Brigham and Women's Hospital
in Boston.
"Even if doctors want to make intellectual points, which is their
prerogative, I think they can do it in ways that A) respects their
patient and B) finds a teachable moment around health issues that
dovetails with the patient’s interests," he told Reuters Health.
Direct-to-consumer genetic testing allows people to order tests from
the comfort of their own homes without a doctor's permission. The
results can provide information about ancestry, non-medical traits
like tongue curling, health risks like diabetes as well as how a
person might respond to certain drugs, write the researchers in the
Annals of Internal Medicine.
In 2013, the U.S. Food and Drug Administration halted health
analyses from the popular direct-to-consumer genetic testing company
23andMe. But those kinds of tests are available in other countries
and will likely be available in the U.S. again, Green said.
In the meantime, companies in the U.S. can still run the tests and
provide consumers with raw genetic data. But it's difficult for
patients to obtain an analysis of that data.
To see how patients felt about discussing their results with their
doctors, the researchers surveyed new 23andMe and Pathway Genomics
customers between March and July 2012. Overall, they had data from
1,026 customers.
Of those, 63 percent said they planned to share their results with
their primary care doctors - and six months later, 27 percent had
done so. Another 8 percent reported sharing the results with other
healthcare providers.
The majority of customers didn't ultimately share their findings
said the results either weren't important enough or they didn't have
time.
Thirty-five percent of those who shared the results with their
primary doctors were very satisfied with the encounter, but 18
percent said they were not at all satisfied.
Those who had satisfying experiences frequently reported that their
doctors understood genetics, willingly discussed the results and
didn't differ in the interpretation of the results.
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On the other hand, people who were not satisfied with their
experience had doctors that were most likely to disagree with the
results.
For example, one customer's doctor said she doesn't believe in
direct-to-consumer genetic testing. "I sent the results from
(23andMe) to her and she never looked," said the customer. "She told
me it wasn't needed and not to believe the results.”
Dr. Wylie Burke, of the Department of Bioethics and Humanities at
the University of Washington in Seattle, said professional societies
for doctors could help the situation by appointing committees to
evaluate evidence related to different kinds of direct-to-consumer
tests.
Burke told Reuters Health by email that there is no evidence the
information from these tests improves health outcomes.
And with common diseases, such as heart disease and diabetes, "even
though genetic risk plays a role, other factors such as diet,
activity level, whether or not one smokes, etc. are simply more
important in determining risk," wrote Burke, who co-authored an
editorial accompanying the new study.
Green said patients should be prepared for a range of reactions from
their doctors when they bring up direct-to-consumer genetic test
results.
"I think it’s a good thing that patients want to bring this to their
doctors," he said. "I think doctors ought to be open to the
conversations that could be stimulated by the information received."
SOURCE: http://bit.ly/1TizpvK and http://bit.ly/1TizoYV Annals of
Internal Medicine, online February 29, 2016.
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