Medical Test Surprises: What Should You Be Told?
It's 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.
A presidential advisory council said Thursday it's time to be more up-front about that risk with patients before their next X-ray or gene test turns up a disturbing surprise.
"Incidental findings 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's 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.
http://abcnews.go.com/Health/wireStory/medical-test-surprises-told-21197307
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.