Incidental findings can be life changing, for better or for worse.
The Presidential Commission for the Study of Bioethics Issues (Bioethics Commission) recently published a report entitled Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts. Many people might not understand how an incidental finding could affect their lives. “Incidental findings” are results that fall outside the original purpose of the test or procedure and can arise in multiple settings through the use of many different technologies. From research and the clinic to direct-to-consumer settings, the following cases highlighted in the Bioethics Commission’s report illustrate why incidental findings must be dealt with ethically and responsibly.
At the start of medical school, Sarah decided to help out a friend by participating in a study using functional magnetic resonance imaging to scan her brain while performing a memory task. During the study, the researcher noticed an anomaly on one of her scans. Sarah rushed to the hospital, where doctors recommended removal of the mass that had been incidentally detected. She was able to stay in medical school while pursuing treatment. Sarah’s surgery was successful and she describes her experience by saying that “I believe I’ve had the best outcome I probably could have had.”
Shortly after crossing the finish line of a marathon, Carol had a seizure caused by inadvertent overhydration. She had consumed too much water, causing her sodium levels to fall dangerously low. After four days Carol awoke from a coma in an intensive care unit. Six months later, during an annual physical, Carol’s doctor mentioned that she should have a repeat magnetic resonance imaging test (MRI) to monitor her brain tumor. Carol was shocked. She vaguely remembered her doctors informing her of conducting an MRI during her coma and incidentally discovering a small acoustic neuroma, but they had never mentioned a “brain tumor.” Carol chose to “watch and wait” and has undergone nine MRIs since her 2004 annual checkup.
A 34-year-old woman named Jackie and her brother, Alex, submitted saliva samples to a direct-to-consumer genetic testing company to assess their medical risk for multiple disorders. They opted in to an additional service that could link them to close relatives who had also submitted genetic information. From the website, Jackie and Alex found that they did not share enough DNA to be full siblings. Although Jackie and Alex were warned ahead of time that results from the test could surprise them, they were still stunned to by this startling news. They subsequently found out that their mother had an affair that resulted in Jackie’s birth.
In certain cases, such as that of Sarah, an incidental finding can be lifesaving. In other cases, incidentally discovered findings can bring undue anxiety without a subsequent benefit, or even lead to further tests and treatments that could cause harm. Incidental findings are increasingly common and have the potential to change an individual’s life forever, thus the Bioethics Commission recommends that all practitioners anticipate and plan for incidental findings so that patients, research participants, and consumers are informed ahead of time about what to expect and that the plan for their management is aptly communicated.