Here's how doctors experiment on the brains of people too sick to consent
Eva Blue/Flickr under Creative Commons license
The narrative arc of a recent report by Luke Dittrich concerning Henry Molaison (known as patient H.M.) is deeply disturbing. First, says Dittrich in his book “Patient H.M.,” a surgeon recklessly excised a part of Molaison’s brain critical for memory. Molaison, permanently disabled, was subsequently subjected to years of experimentation without proper consent by a scientist at the Massachusetts Institute of Technology (MIT), Dr. Suzanne Corkin, who built her career on Mr. Molaison’s back and ultimately tried to supress data that conflicted with hers.
The attack on Corkin was countered by a letter signed by 203 scientists (including myself), and a detailed rebuttal by MIT. Yet the reader needs to know if they can trust the practice of science with vulnerable people. Molaison was the most prominent volunteer participant in human neuroscience research, but what about the legions of lesser-known volunteers? This speaks to a zeitgeist of mistrust of science and expertise in general, one that undermines society’s engagement with scientists.
Modern ethical guidelines for conduct of research with humans originated at Nuremberg in 1947 in response to horrific abuses by researchers at WWII concentration camps. Present-day research abuses are rare because the basic principles of informed consent, beneficence, and protection from harm are codified into federal law. There is no collusion among academics trying to protect questionable research practices. Indeed, researchers must seek approval from independent Institutional Review Boards (IRBs) that include non-scientists before conducting their studies.
Studying patients is my job, so it is no secret that I benefit from their participation, including their endurance of discomfort with being tested. Yet like Corkin, I consider studying people who have been exposed to brain disease, surgical errors, or other misfortunes to be a scientific, and even a societal, obligation, both to improve diagnosis and treatment and to better understand the workings of the brain. Still, why would someone volunteer for research when they have suffered so much? While curiosity and a challenge may be sufficient justification, the desire to see something positive come from their suffering is greater. They do not do it as a favour to me; they do it for you and your loved ones.
Surgical removal of dysfunctional brain tissue for the relief of severe epilepsy, now strictly controlled relative to the time of Molaison’s surgery, reduces seizures and increases quality of life. This surgery includes placement of electrodes on the brain’s surface to monitor brain activity (no pain is felt as local anesthesia is used). With the help of patients who volunteered their time during monitoring, researchers at University of California at Berkeley discovered that analysis of recordings from the brain’s auditory centres could reconstruct words that the patients heard. That is, they could play back the correct words using the brain recordings alone, giving rise to the future possibility of decoding thoughts in those unable to speak.
When patients cannot consent to research participation, a legally appointed guardian with the patients’ best interests at heart makes the decision. As an extreme example, researchers at University of Western Ontario received permission from guardians of patients who are minimally conscious (i.e., nearly in a coma) to test them in an MRI scanner. This research showed that these patients could produce reliable patterns of brain activity when asked to imagine playing tennis or walking in their house. These brain responses could then be used to answer yes/no questions, establishing communication with patients who were previously not known to understand speech or even have a conscious life.
What happens when data, so painstakingly collected, conflict with researchers’ cherished theories? The most respected scientists push their limits by creating the most difficult tests of their models, much like elite athletes prefer to compete against the best. Eric Kandel, the neurobiologist and Nobel laureate, recounted that in 1946 the electrophysiologist John Eccles was initially despondent when he realized that he was on the losing side of the battle over whether synaptic transmission in the brain—or how brain cells communicate— was electrical, as Eccles thought, or chemical. In the end Eccles was jubilant in losing the battle. How can this be? I imagine Eccles was a gracious man, but that is immaterial. Eccles knew that he had made the strongest possible test of his theory. Although wrong, he helped to discover a fundamental truth about how the brain works that was recognized in a shared 1963 Nobel prize. Scientists who refuse to admit they are wrong are viewed like sore losers in sports. No one wants that reputation.
When my trainees observe a pathognomonic sign of disease, such as a patient being able to write but not able to read their own writing (the syndrome of alexia without agraphia), I tell them that this is like looking into the eyes of God. That is not because I am happy that a patient has suffered, but rather because the accident of their suffering has illuminated something miraculous about the brain as part of nature that we could not have otherwise known. We should ask nothing less from any scientist trying to understand the mechanisms of the brain or any other body part: that they treat us, and Mother Nature, with dignity.
Brian Levine is a neuropsychologist and senior scientist at the Rotman Research Institute at Baycrest Health Sciences Centre and Professor of Psychology and Medicine (Neurology) at the University of Toronto. He conducts applied research on memory and executive functions in patients with brain disease and in healthy adults.