How to be Opportunistic, Not Manipulative
|Government data is often used to
answer key research questions.
Image courtesy of the U.S. Census Bureau
opportunistic when researchers take advantage of a special situation. Quasi-experiments enabled by government programs, unique or isolated populations, and once-in-a-lifetime events can all trigger opportunistic research where no experiments were initially planned. Opportunistic research is not categorically problematic. If anything, it is categorically efficient. Many a study could not be ethically, financially, or logistically performed in the context of a randomized control trial.
|Image courtesy of Wikimedia Commons.
Those wires are already down there, so why not put them to even more use? Scientists dream of poring over the treasure trove of patients’ data. It’s a precious, and rare, resource. The elephant in the room, especially for practitioners of basic research, is that basic research is not expected to directly benefit the individual patient. Any scientific gain may help people in the years to come, but it will not affect that individual patient’s prognosis. Unlike studies trying to optimize deep brain stimulation (DBS) for treatment of Parkinson’s Disease (Müller and Christen, 2011) or depression (Dunn et al., 2011), basic research exists for the sake of science, not patient welfare. With fewer concrete benefits to the patient, the risk to benefit calculation becomes trickier.
|Image courtesy of SVG Silh.
Non-medical invasive brain research, like that using intracranial recordings and brain stimulation in epilepsy patients, is admittedly a niche area. Since it has no immediate
implications for human health, it receives far less publicity and
public scrutiny than clinical trials or even promising treatments in
animal models (Fang and Casadevall, 2010). Although the purpose of basic
research is distinct, it can still benefit from the lessons learned on
the medical side. Clinical human neuroscience research shows that the ability to consent does not guarantee that the decision to consent is a voluntarily one (Swift, 2011). In the shadow of the physician-patient power dynamic, would-be participants can become situationally incapacitated even while retaining full mental capacity (Labuzetta et al., 2011). In effect, their position as a patient, the physician-patient relationship, and the overlap between medical and research practices can all render the patient incapable of freely giving informed consent. Although the mental state of the patient may be sound, many argue that they must be protected just like those who lack the mental capacity to consent on their own behalf. The fear is that any hint of the research influencing the medical care, or even the absence of addressing that interaction explicitly, can force the patient’s decision.
|Image courtesy of Pixabay user Catkin.
As a patient, you might be coerced to consent to any research protocol put in front of you out of fear that your medical treatment is dependent on it. You don’t even need to be a cynic who expects the worst out of your physician to fear this. After all, your physician will probably take more of an interest in you, and you’ll get more face time with her, if you sign up for her study. Yes, preferential treatment is wrong, but self-defense against improper treatment requires self-empowerment, something that is often degraded in these patients by the stigma following their brain disorder. To minimize potential coercion, physicians should at the very least complete the consent process as part of a team, alongside people not involved in the patient’s care. Of course, the coercion patients feel would be minimized if their physicians were completely absent during the consent process to minimize any implicit coercion, but such requirements are often impractical. Both medical and research personnel should also be required to explicitly state that medical care will not change for the better or worse regardless of research participation. These statements must be unequivocal, and repeated before, during, and after the consent process.
|Image courtesy of Wikipedia.
As a patient, being told your medical care is protected regardless of your research participation is not the same as believing it and trusting it to be true. Doubt may be unavoidable, and it is not preferable, but it should also not prevent the study from happening. Invasive brain research can only happen in specific and intensive situations, but it is absolutely necessary to the progress of neuroscience and medicine. Everything from epilepsy to Alzheimer’s Disease to autism is informed by and better treated because of invasive brain research.
Nathan Ahlgrim is a fifth year Ph.D. candidate in the Neuroscience
Program at Emory. In his research, he studies how different brain
regions interact to make certain memories stronger than others. He strengthens his own brain power by hiking through the north
Georgia mountains and reading highly technical science…fiction.
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Want to cite this post?
Ahlgrim, N. (2018). How to be Opportunistic, Not Manipulative. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/10/how-to-be-opportunistic-not-manipulative.html