'Incidental findings' in DNA testing present ethical quandaries

Researcher
Reserach technicians prepare DNA samples to be sequenced in the production lab of the New York Genome Center on September 19, 2013 in New York City.
Andrew Burton/Getty Images

In biomedicine and genetics, an "incidental finding" is an unintentional discovery about a person's DNA that occurs during screening for unrelated issues.

One example: the discovery during genetic sequencing of a gene that increases the likelihood of a serious illness.

From The Atlantic:

In the past, sequencing an entire genome was a laborious, expensive endeavor that was limited to major research labs. Now, companies have sprung up to offer personal sequencing. Just send a bit of saliva and $99--shipping and handling included!--and you, too, can have the entire contents of your DNA laid out like a take-out menu.

At first glance, this sounds straightforward. But it isn't. What should be done if the test discovers a gene for a serious, heritable illness ? In the clinical setting, there is a trained genetic counselor to work with a patient and the results, but with direct-to-consumer testing, a person is largely on their own. Does the company have an ethical obligation to make a referral for treatment? To inform family members who might also be at risk? What happens if the results show a chromosomal sex that is different than the person's known sex? What happens if testing reveals parental lineage that isn't what was expected? And what happens if the tests are wrong?

Incidental findings present ethical questions for researchers, physicians and patients. What information do doctors owe patients? What if patients don't want the information? These ethical quandaries are increasingly common as direct-to-consumer DNA testing get cheaper.

The Daily Circuit will sort through some of these questions with guests Dr. Danielle Ofri, a physician at the oldest public hospital in the country, and Dr. Susan Wolf, a professor of law and medicine at the University of Minnesota.

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