“No, that is incidental.”
- Dr. Hannibal Lecter, Silence of the Lambs
Language matters. The medical literature oozes with terms of scientific specificity but devoid of compassion, if not humanity. I would argue “incidental finding” (INF) falls within this realm.
According to a medical dictionary, an INF is: a per chance discovery in a patient which may warrant further investigation. (1) Clinicians struggle to find the optimal term for such situations. Besides INF, other proposed terms include secondary variants, unexpected or off-target results, unanticipated, unsought, or unrelated findings, and abnormalities – existing, potential, or suspicious. (2) Moreover, clinicians continually wrestle as to whether, how, and when to disclose an INF. Sometimes an INF is literally incidental and indisputably requires no further action. Sometimes an INF is unquestionably a good discovery and leads to important action. For example, years ago my mother had a routine blood test done as part of an annual physical, and an undiagnosed blood cancer was discovered.
Yet in many instances the best course of action – including whether to disclose the INF to the patient – may not be readily apparent. For example, imagine you crash on your bike and hit your head. At a hospital your skull is scanned to determine if bones are broken. The scan shows that your bones are fine, but you have an unusual bulge in one of your head’s blood vessels. This bulge may have existed for years, even decades, without causing any problems; nobody knows for sure since you never had a previous scan. However, the bulge might have developed recently and perhaps is a sign of a more serious problem. Should additional, invasive, painful, costly tests be done, even though their results may not be conclusive? Or is a wait-and-see approach best?
What to do, what to do?
Unexpectedly discovering that presumably genetically related people are NOT genetically related, for example during genetic testing to identify if someone is at risk for a specific disease, often falls within the definition of an INF.
Is a clinician disclosing someone’s NPE INF the best and moral action? In my opinion, yes! Yet for many clinicians, their opinion is no!
How is a clinician keeping you the dupe of false information incidental? For you or anyone else? For now and, evidently, forever? What is “incidental” about your self-identity, heritage, trust in your parents’ (and other relatives’) honesty, and the essence of who you are being thrown into disarray? I would argue nothing incidental exists in such a scenario. I am not alone: to quote one medical article:
there have been concerns raised with the descriptor ‘incidental’. This could be seen as minimizing the significance of the finding and is certainly less than appropriate in depicting certain potentially life-changing findings, such as the presence of……misattributed paternity. (2)
Clearly, an opportunity exists to:
1. improve antiquated, arguably belittling terms utilized by many clinicians, and
2. improve consistent disclosure of INFs.
Until the medical profession, and society at-large, can reach agreed-upon terminology (who knows when, or if, this will happen), what can you do? Consider familiarizing yourself with various NPE terms: a good place to start is the Right to Know’s website: Terms – Right To Know Whenever discussing NPE issues, recognize the strengths and limitations of the terms you express: can you practice more terminology consistency? Encourage others to use preferred terms? Or avoid confusing terms?
Finally, and importantly, whenever interacting with health care professionals, be alter for INFs that arise in conversations as well as in documents. Strive to comprehend the ramifications of such language. For example, if you or your child is having a medical test performed, such as a genetic test, you will sign a consent form. Review the form for INF clauses. Does the consent form state how INFs will be managed? Some forms state that INFs will NOT be disclosed under any circumstances. Other forms state that INF disclosure will be managed on a case-by-case basis. Whatever the form states, ask yourself if the form is consistent with your choices? Obviously, signing a form with language inconsistent with your choices could ultimately be problematic: consider further communications with your clinician to find an agreeable resolution before you sign. If you cannot reach a resolution, consider seeking a different provider that offers services and consent forms consistent with your choices.