Discovering a serious problem not only causes shock but can have financial implications.
I read your news story “Brain-scan ethics come under spotlight” ( Nature 433, 185; 2005 ) with great interest. As a neuroscientist, and being a bit of a ‘neuro-nerd’, I've always wanted to observe MRI scans of my own brain, so when the opportunity arose I jumped at the chance to help test a new MRI facility at my university.
As it turns out, I should have thought about the consequences of volunteering more thoroughly.
After the test scans, the manager of the facility informed me that something abnormal had been observed during the procedure. With great trepidation, I looked through the scans and, having taught neuroanatomy previously, I instantly recognised a tumour, roughly the size of a golf ball, in a rather sensitive location near the carotid artery to the left of my brainstem. This came as a huge surprise as I had never been diagnosed with any sort of neurological disorder.
Some would call this a fortunate discovery, and I would normally agree with them. Clearly, knowing you have a brain tumour is better than not knowing, right? The manager of the MRI facility offered to refer me to a local neurosurgeon for further investigation. In a state of shock, I agreed without proper consideration. This decision, I later realized, would have unforeseen financial implications.
At the time, my wife and I were expecting our first child, and we were in the process of reviewing our insurance policies. We had decided to apply for additional insurance to support the family should one of us lose our university position though injury or disease. Just before we submitted these documents, along came this ‘diagnosis’.
The neurosurgeon told me that 5% of operations lead to potential complications after which, in order to save my life, they would have to induce a massive stroke of my entire left-brain. This could leave me in the horrible position of being unable to communicate with my wife, my newborn child or my students. Clearly, this surgery could lead to my losing my job. What should I do about the insurance policy? Revise the application and report these ‘non-clinical’ scans? I decided to be honest (others would say naive) and report the scans, which cost me the policy.
Now I sit in the uneasy position of facing surgery that could cost me and my family everything because I wanted to peep at my own brain. I understand that subject recruitment for research studies can be very difficult and every subject is precious. After my experience, however, I feel that informed consent should clearly include recognizing the possibility that something of medical significance could arise and that this could have an impact on future insurance eligibility.
Sadly, this is likely to further reduce subject participation in research critical to our understanding of the healthy and diseased brain.
Name and address withheld by request
About this article
Discovery and informing research participants of incidental findings detected in brain magnetic resonance imaging studies: Review and multi-institutional study
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Journal of Bioethical Inquiry (2007)
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