The blog of the 2009 – 2017 Presidential Commission for the Study of Bioethical Issues

When an Incidental Finding Saves a Life

Sarah Hilgenberg, M.D., tells her story.

During today’s meeting of the Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission), a panel of experts discussed the ethical considerations associated with incidental findings that arise during research.

Alex John London, M.A., Ph.D., Professor of Philosophy at Carnegie Mellon began by noting “The researcher may have a duty to act in the best interest of the participant, and this may involve revealing findings to the patient that were outside the scope of the study and linking them up with clinicians, as well as keeping information confidential.”

In this case, the incidental finding may have saved a life. Peter Bendettini, Ph.D., chief of the section on functional imaging methods at the Laboratory of Brain and Cognition at the National Institute of Mental Health, noted that only 2% of brain scans have an incidental finding of clinical significance, but to those 2%, the incidental findings may have life-changing consequences.

For example, eleven years ago, Sarah Hilgenberg, now an M.D. in pediatrics, was just beginning a promising career in medicine. “I was high on life, feeling physically, emotionally and intellectually fulfilled,” she said. As she completed her orientation camping trip for the Stanford University School of Medicine, a friend asked her to participate in some research he was conducting on learning and memory. The research involved a functional magnetic resonance imaging (fMRI) scan.

Immediately after the test, her friend who was conducting the research appeared concerned. After consulting a neurologist, he revealed to Hilgenberg that she had an abnormality in her brain scan. She immediately received a diagnostic neurological evaluation, as well as a large dose of worry. While the doctors initially feared that she had a brain tumor, the final results revealed an arterio-venous malformation (AVM), a malformed connection between the arteries and veins which usually goes undetected, until it is found as an incidental finding. An AVM can be very dangerous, as increased blood pressure can cause them to bleed, with potentially fatal complications.

Hilgenberg underwent a long series of tests and surgeries, attending medical school at the same time. She said that the combination of medical school and her own medical condition was a powerful experience. “I was learning firsthand the material taught in class: the vulnerability of the body and, in particular, my brain”. However, due to the early intervention as a result of the incidental finding, Hilgenberg was cured of her AVM. She is now a successful physician, married, and the mother of a little girl.

Hilgenberg is grateful that she received information about the incidental finding. “A part of me thinks that he [the researcher] had no obligation to do this,” she told the Bioethics Commission. “But I am not sure that I would be here today to speak to you if he had not acted.” The chair of the Bioethics Commission, Amy Gutmann, Ph.D. agreed. “There is a kind of minimal standard for what human beings with a basic ethical sensibility will say to themselves ‘If I don’t do this, I won’t be able to sleep at night,’” Gutmann said.

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This is a space for the members and staff of the 2009 -2017 Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

As of January 15th, 2017 this blog will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues

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