It is a growing side effect
of modern medicine: A test for one condition turns up something completely
unrelated. It might be a real danger, or an anxiety-provoking false alarm.
Doctors dub this the dreaded
"incidentaloma" – so-called incidental findings that tell people more
than they bargained for, things they might not need or want to know.
AUS presidential advisory
council said that it's time to be more up-front about that risk with
patients before their next X-ray or gene test reveals a disturbing surprise.
can be life-saving, but they also can lead to uncertainty and distress,"
cautioned Amy Gutmann of the University of Pennsylvania, who chairs the
Presidential Commission for the Study of Bioethical Issues.
It is an issue that
"will likely touch all of us who seek medical care, participate in
research, or send a cheek swab to a company for a peek at our own genetic
makeup," she said.
Managing incidental findings
It may seem obvious that if
the family doctor orders X-rays for a broken rib that also spot signs of
cancer, the patient will be told. But the report notes that not every
medical condition that can be found should be – and there's conflicting advice
about how to disclose and manage incidental findings.
Consider: 10% of brain
scans spot something unrelated that may require more testing, said bioethics
panel member Dr Stephen Hauser, neurology chairman at the University of
California, San Francisco.
Anywhere from 30% to 43% of
abdominal CT scans turn up incidental findings, according to studies cited by
the commission. In fact, the bioethics report said that at trauma centres,
these high-powered scans that aim to find subtle injuries instead are more
likely to make an incidental finding.
And say a doctor maps a
child's genes to help diagnose some puzzling muscle symptoms – but also
discovers genes that may trigger breast cancer after she has grown. That
incidental finding has implications for other relatives, too.
Respecting patients' decisions
findings can be life-saving, for example in the case of an athlete whose brain
is scanned after a concussion, and radiologists spot a tumour, Hauser said.
Other times, nothing can be
done. That same brain scan might show early signs of an incurable condition,
Hauser said, and "this young person now needs to live with the knowledge
that she may someday develop this neurologic disease."
Follow-up testing may do
harm. The panel's worst-case example: Doctors see a suspicious spot on a lung
while testing an elderly patient's risk of a stroke. A biopsy determines the
spot is nothing, a benign scar – but that biopsy makes the lung collapse,
triggering cardiac arrest.
Nor do patients necessarily
want to know everything the doctor learns. A cancer survivor may agree to be
X-rayed for broken bones after a fall. But if she doesn't want to know about
any signs of returning tumours, it's ethical for the doctor to respect that
decision, Gutmann said.
The bioethics panel is
urging better anticipation of and communication about how they handle these
surprises. Among the recommendations:
– Doctors, researchers and
direct-to-consumer companies alike should inform potential patients about the
possibility of incidental findings before they undergo a medical test. They
should clearly explain what will and won't be disclosed, so patients can make
an informed decision about whether and how to proceed.
– Professional groups should
develop guidelines about incidental findings common to different tests, and how
to handle them.
– The government should fund
more research into the costs, benefits and harms of identifying, disclosing and
managing different incidental findings.
–Health workers should
explore the pros and cons of test results with patients ahead of time, in what's
called shared decision-making, to learn what they don't want to be told.
The opt-out provision
differs from guidelines issued earlier this year by the American College of
Medical Genetics. That group says laboratories should automatically notify
doctors if genetic tests turn up any of about 50 genes linked to two dozen
diseases that might be treatable or preventable if discovered early.
"When people go into
these kinds of tests, you never think it's you, that you're the one that's
going to have something found," explained ACMG executive director Michael
Watson. "We didn't think they should opt out of hearing about those
results prior to the test."
People should be educated
about incidental findings in time to consider how they'd want to handle one,
said Dr Sarah Hilgenberg of Stanford University, who told the bioethics panel
about her own experience. As a medical student, Hilgenberg enrolled in a study
of memory that scanned her brain. Researchers weren't obligated to reveal the
suspicious spot they found but did – letting her get treatment for an
abnormality that otherwise might have triggered dangerous bleeding.
"I would imagine it
doesn't ordinarily cross people's minds," said Hilgenberg.