In the late 1960’S, when I was an undergraduate studying psychology at McGill, one of the topics discussed was Dr. Penfield’s work at the Montreal Neurological Institute. Dr. Penfield had discovered that for some forms of epilepsy, small areas of the brain caused the seizures, and if he surgically removed these areas, the patient’s seizures would stop or be greatly reduced. This was a major breakthrough. The surgery was life changing for patients whose seizures were unresponsive to medication, and neurosurgeons still perform it today.
Because Dr. Penfield’s procedure was new, he did considerable work to ensure the surgery, which is not reversible, would help the patient without causing other damage. One step was to stimulate brain areas to determine no critical spots were harmed (speech centers, for example). This led to many discoveries about how the brain is organized. He mapped two brain areas where control of various body parts and muscles is spread out, which we call the sensory and motor homunculi.
Clinical neurological techniques have come a long way since Penfield, and we are developing new tools to help patients with brain disorders. Neurosurgeons are now implanting electrodes (thin, strong insulated wires – except at the tip) into specific brain regions to stimulate neurons, relieving symptoms of Parkinson’s disease and other mental disorders like unresponsive depression. These electrodes must be placed precisely to be effective, and this is sometimes done by recording the brain’s electrical activity, occasionally for extended periods. Many procedures are done while the patient is awake so that the doctors can benefit from the patient’s input while placing the electrodes or interpreting the recordings. (Local anesthetics prevent any pain from this surgery.)
Just like for Dr. Penfield, at the same time that these surgeries bring relief, they also offer unique opportunities to study how the brain works. For obvious ethical reasons, broad studies of the human brain using invasive techniques are not possible. But when patients are preparing for surgery and have their brain waves recorded for an extended period, they provide an opportunity for basic science experiments that cannot be done in any other way. These experiments – unrelated to solving their medical issue – continue to tell us a lot about the functions of different brain areas and how the brain is organized and works in real time.
Such research presents thorny ethical issues. The experiment is entirely independent from the clinical concerns of the patient, and often the people doing the research are also the doctors treating the patient, which means conflicts of interest can arise. First this research will go through a detailed institutional review. But additionally, the scientists and doctors have two key priorities: (1) making sure the clinical needs of the patient are not harmed, and (2) making sure the patient’s research involvement is entirely voluntary.
Any research must not impact the clinical care of the patient. For example, recordings might be made at various points as electrodes are placed in the brain – this may give us new information about how parts of the brain function but extend the time in surgery. Other surgeries may be done either with the patient awake or asleep. If asleep, research may not be possible. In both cases, the patient’s clinical needs are paramount, and the research needs are secondary.
Voluntary consent is also necessary. But patients often want to please their doctors, and if they are asked to participate in a doctor’s research project, they may feel obligated to agree. Researchers have set up detailed consent procedures to ensure patients understand participation is voluntary. They have different people asking for consent, other than the primary doctor, make sure the patient and family are all included, and ask multiple times if the patient wants to continue participating in the research. In addition, all research team members must have clinical patient skills (i.e., appropriate bedside manners).
As a Christian concerned about the dignity of all God’s children, I laud the medical and research community for their efforts to develop detailed ethical principles that respect the needs of people in their care. Patients are often in a vulnerable position, and we all have a duty to protect their interests.
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