When it comes to issues of identity and authenticity in DBS, let patients have a voice

By Ryan Purcell

Reconstruction of DBS electrode placement, image courtesy

of Wikipedia

Deep brain stimulation (DBS) is an extraordinarily popular topic in neuroethics. In fact, you could fill a book with all of the articles written on the subject just in AJOB Neuroscience alone (and the editors have considered doing this!). A special issue on the topic in AJOBN can be found here. Among the most widely discussed neuroethical issues in the DBS arena are concerns over the effects on patient identity and authenticity. But perhaps one perspective that has not been fully represented in the academic literature is that of the patients for whom this is actually their last hope to find a way out of a profound, debilitating and often years-long episode of depression. At February’s Neuroethics and Neuroscience in the News journal club, Dr. Helen Mayberg spoke passionately about the approach that led her team to attempt DBS for major depressive disorder (MDD), the ensuing media response, and how that has affected her ongoing work to improve the technique, better understand the etiology of MDD, and allow patients to get back to their lives.

The DBS for depression story goes back more than a decade and began in Toronto. Dr. Mayberg’s group consistently found cingulate area 25 to be differentially active in mood studies; it was tonically active in depressed patients and became transiently activated when healthy subjects were saddened while in the PET scanner (Mayberg, 1997). The idea was put forward that if the activity of this area could be reduced, perhaps it may lift some patients who had exhausted all other options out of the depths of the most debilitating degrees of depression. By this time, deep brain stimulation of the basal ganglia had become a mainstream treatment to calm tremors resulting from some motor disorders, particularly those resulting from Parkinson’s Disease.

Dr. Helen Mayberg

The initial DBS for depression study (Mayberg et al., 2005) was a major success and quickly made waves in psychiatry and the news media. To quote Dr. Mayberg, “the term ‘going viral’ didn’t exist in 2006 but it definitely went viral.” In an article entitled “A Depression Switch?”, David Dobbs writing for the New York Times Magazine profiled a patient, Deanna Cole-Benjamin, who was added to the initial study after several years of a devastating, profound depressive episode that had proven resistant to psychotherapy, drugs, and upwards of 100 electroconvulsive therapy sessions. Her experience with DBS, however, was extraordinary and she recounted it this way: “It was literally like a switch being turned on that had been held down for years…All of a sudden they hit the spot, and I feel so calm and so peaceful. It was overwhelming to be able to process emotion on somebody's face. I'd been numb to that for so long.” Initially, Dr. Mayberg was dismayed by the article’s title, which indicated that this was a quick, almost miraculous fix rather than a long process that requires ongoing brain stimulation delivered long-term using the implanted device and active psychotherapy and retraining on the part of the patient to recover fully. But she recognized that these were, in fact, the patient’s words. Indeed, patients, Dr. Mayberg added, should have more a voice in the neuroethics literature.

Neuroethicists have written at length about the potential effects of DBS on patient identity (Baylis, 2013), what it means for authenticity, and also ideas such as alienation (Kraemer, 2013). These are important issues as Parkinson’s patients undergoing DBS for motor symptoms, for example, have on occasion had serious negative post-operative side effects including mania and suicidal ideation (Kraemer, 2013). Perhaps the most central questions to neuroethicists are 1) is the device infringing on or altering patient autonomy and 2) is the patient’s identity or authentic self fundamentally changed by the so-called brain pacemaker. However, hearing Dr. Mayberg describe patients who have been completely debilitated by the disease, who can no longer care for themselves or others and think of little other than suicide, ethical concerns about whether a potential treatment might compromise the patient’s authenticity seem absurd. If your authentic self essentially cannot function any longer then is there any other option but to alter it? Still, post-operatively some patients describe an anxiety or fear that the efficacy of the stimulation will erode over time and that at any moment, the disease that, in Deanna’s case, came on without warning, could re-emerge. Dr. Mayberg, though, contends that successful DBS procedures return patients to who they really are, that identity could be better defined as “who are you without depression.” This can be difficult to ascertain for the researchers, however, because their first impression of the patient is always in a profoundly depressed state, and they can only see that pre-depression identity through the eyes of their family and friends.

Location of area 25, image courtesy of Wikipedia

In a way, if the hypothesis that over-activity of area 25 is underlying MDD holds up to further testing then, in a simplistic sense, it fits nicely with the “back to your old self” notion. Conceptually speaking, this is not a method intended to overcome a negative with an overabundance of positives in other areas. Instead, the idea is to normalize the activity of a particularly powerful area where the activity somehow went a bit haywire. Researchers have in fact found that DBS of the nucleus accumbens, a key node of the so-called reward circuit, can elicit euphoric feelings (Synofzik, Schlaepfer, & Fins, 2012). Dr. Mayberg stressed that in her view, DBS of area 25 for MDD is different; that it restores more normal function and enables patients to get back to their lives (and rather than activating an area, she likens DBS in area 25 to taking off the brake). For this reason, Dr. Mayberg considers area 25 stimulation as more of a removal of inhibition that does not really create or activate a new identity, but circumvents the barrier to enable one to be their authentic self whoever that may be. But what is also missing from this explanation is how patients view who they are before and after stimulation and ultimately this is an empirical question, which is where Dr. Mayberg’s recent study on intraoperative self-assessment from patients come into play (Choi, Riva-Posse, Gross, & Mayberg, 2015).

The neuroethical discussions over how to understand the many applications of DBS and its consequences for patients will continue and, it now seems, so will the medical and scientific debates over the effectiveness of the procedure. The multi-site BROADEN clinical trial was halted and there has been some degree of blowback on other blogs criticizing the early enthusiasm surrounding DBS for MDD. The potential physical and nonphysical harms of such an intervention, the critics argue, are not worth the risks given the absence of a consistent benefit. But perhaps now is the best time, as researchers continue to push forward in the pursuit of understanding MDD’s underlying mechanisms and how DBS might help patients with MDD, to also reconsider the approaches to evaluating patients’ perspectives and views on the value and risks of the intervention.

References

Baylis, F. (2013). “I am who i am”: On the perceived threats to personal identity from deep brain stimulation. Neuroethics, 6(3), 513–526. http://doi.org/10.1007/s12152-011-9137-1

Choi, K. S., Riva-Posse, P., Gross, R. E., & Mayberg, H. S. (2015). Mapping the “Depression Switch” During Intraoperative Testing of Subcallosal Cingulate Deep Brain Stimulation. JAMA Neurology, 72(11), 1–9. http://doi.org/10.1001/jamaneurol.2015.2564

Kraemer, F. (2013). Authenticity or autonomy? When deep brain stimulation causes a dilemma. Journal of Medical Ethics, 39(12), 757–60. http://doi.org/10.1136/medethics-2011-100427

Mayberg, H. S. (1997). Limbic-cortical dysregulation: a proposed model of depression. The Journal of Neuropsychiatry and Clinical Neurosciences, 9(3), 471–81. http://doi.org/10.1176/jnp.9.3.471

Mayberg, H. S., Lozano, A. M., Voon, V., McNeely, H. E., Seminowicz, D., Hamani, C., … Kennedy, S. H. (2005). Deep Brain Stimulation for Treatment-Resistant Depression. Neuron, 45(5), 651–660. http://doi.org/10.1016/j.neuron.2005.02.014

Synofzik, M., Schlaepfer, T. E., & Fins, J. J. (2012). How Happy Is Too Happy? Euphoria, Neuroethics, and Deep Brain Stimulation of the Nucleus Accumbens. AJOB Neuroscience, 3(May 2012), 30–36. http://doi.org/10.1080/21507740.2011.635633

Want to cite this post?

Purcell, R. (2016). When it comes to issues of identity and authenticity in DBS, let patients have a voice. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/03/when-it-comes-to-issues-of-identity-and.html

International Neuroethics Society: Summary of what you (may have) missed!

Greetings from DC!  The Neuroethics Program is busy hobnobbing with some of world's most cutting-edge, interdisciplinary group of innovative thinkers at the International Neuroethics Society (INS)!

In case you didn't get the chance to attend this year, here is a brief summary of what you missed. The full list of events can be seen here and featured events from Day 1 of this year's meeting can be seen here.



This year INS hosted its annual meeting at the Carnegie Institution for Science. Day 2 of the annual INS meeting was an exciting and inspiring day featuring outstanding sessions. Each session highlighted some of the most pressing topics in the field of neuroethics.

The day opened with a panel on Neuroscience, National Security, and Society. The panel featured Jonathan Moreno, University of Pennsylania; William Casebeer, DARPA; and James Giordano, Potomac Institute for Policy Studies. Dr. Moreno is the author of the book Mind Wars. Moreno outlined the past, current, and potential uses of current neuroscience research in National Defense weaving a narrative from ingestion of cognitive-enhancing drugs, to external brain imaging, to more invasive brain-machine interface and beyond. Moreno noted that some experts had testified the science is not "ready" for such applications. However, those whose primary goal was National Defense might be more compelled by the reality that the technology is currently something a 20-year old soldier could learn to use in 20 minutes. Dr. Giordano suggested that conversations about neuroscience and defense have moved beyond whether or not we ought to weaponize neurotechnologies, but what what we should do when neurotechnologies do become weaponized. Giordano suggested that we should limit transparency about efforts to weaponize neurotechnologies to the general public and move forward with prudent communications in order to avoid inducing unwarranted mass public panic. Dr. Casebeer ended on a more optimistic front, stating that while there is peril associated with the use of neurotechnologies for national defense, by taking careful measures to protect human flourishing and autonomy, neurotechnologies hold the promise to help create a new generation of effective modes of neuro-defense.

The next session was led by self-described real life cyborg and author of World Wide Mind, Michael Chorost. Dr. Chorost has cochlear implants that allow him to hear, and in his talk he challenged us to explore how neurotechnology could improve humanity. Chorost noted that there are approximately 2 billion computers being used by 2 billion internet users, but this is no where close to the 100 billion neurons and all their synaptic connections in the human brain. Chorost envisions a future where brain transplants in otherwise healthy people might be used to make more sufficient and meaningful connections between people thereby creating a deeper awareness of those around us. Chorost views the internet as humanity's evolutionary assistant.

Image from http://www.thesocializers.com

The third session was a panel on Neuroethics and Novel Treatment in Neuropsychiatry moderated by Barbara Sahakian, Cambridge University. The panel featured Husseini Manji, Johnson and Johnson Pharmaceutical; Helen Mayberg, Emory University; and Jorge Moll, D'Or Institute for Research and Education. Dr. Manji pointed out that, according to studies by the World Health Organization, 30% of the Burden of Disease by 2015 will be attributed to neuropsychiatric disorders, an ominous figure which translates into an enormous loss of society's most important capital, its cognitive and mental capital. This outlook highlights the importance of refining our techniques for defining and diagnosing prodromal periods for psychiatric disorders such as schizophrenia, and neurodegenerative diseases such as Alzheimer's disease, as well as developing novel interventions for the the prodromal period. Helen Mayberg discussed her work using deep brain stimulation (DBS), an experimental intervention involving the surgical implantation of an electrode into the brain and battery pack in the pectoral muscle of patients, to treat intractable major depression. She describes the ethical problem of how physicians are to help patients who continue to need DBS after the pilot stages of experimentation. She also expressed ethical concerns about the evolving responsibility of the patient as their symptoms resolve. Patients may be miraculously improved while on DBS, but will need to continue having their DBS hardware maintained (i.e. battery replacement) to preserve these beneficial effects over time. Or on the flip side, how will patients disengage from the stimulator should they not want the treatment anymore? Grants for this research may cover costs to implant devices, but not to remove them. Finally, Jorge Moll discussed the implications of inferring cognitive and psychological states from neuroimaging such as for diagnosing psychopathy.

Illustration by Jeffrey Decoster

The afternoon closed with a discussion of Real Cases in Law and Neuroscience moderated by Hank Greely, Stanford University.  The panel included two attorneys Steve Greenberg and Houston Gordon, along with Russell Swerdlow, a neurologist at the University of Kansas Medical Center. Greenberg is a criminal defense lawyer who attempted to use brain images to prevent his client, an individual who has repeatedly raped and murdered young girls, from receiving the death penalty. Greenberg argues that brain imaging evidence suggests that psychopaths have brain defects, or birth defects (since they might have been born with these" brain defects") and asks how we should hold people who engage in criminal behavior accountable for their crimes, especially if they suffer essentially a birth defect. Attorney Houston Gordon has also tried to submit neuroimaging data in criminal cases, but the judge handling his case stated that the science wasn't ready. Gordon believes, however, that the science is ready, stating that neuroimaging data are the products of an unbiased computer algorithm and multiple, rigorous peer-reviewed studies. Finally, Dr. Swerdlow shared his story of a patient who had acquired pedophilia, which was due to an enormous tumor growing from the base of his skull. When the tumor was removed, the patient's tendencies toward pedophilia subsided, and his tendency for pedophilia returned when the tumor grew back. Swerdlow posed a number of questions based on this work: How hard wired is decision-making and how free is free will? And given this case as an example, are the current legal standards adequate?



If you missed this year's annual INS conference, don't despair.  INS is already planning its next conference so stay tuned and check back at neuroethicssociety.org for updates.



For those of you that attend the Society for Neuroscience meeting, please let us know if you'd like to share any work that struck a neuroethics chord in you by commenting below (We are especially interested in events we may have missed from Nov 14-16, but we welcome your notes from previous days at SFN).




Want to cite this post?


Rommelfanger, K. (2011). International Neuroethics Society: Summary of what you (may have) missed! The Neuroethics Blog. Retrieved on
, from http://www.theneuroethicsblog.com/2011/11/international-neuroethics-society_13.html