Ethical Issues in Neurosurgery: A Special Issue of Virtual Mentor

This month the American Medical Association's journal Virtual Mentor published a series of articles about the ethical issues pertaining to neurosurgery. Some of the articles include discussions about deep brain stimulation in early-stage Parkinson Disease, simulation and neuro-surgery teaching tools, and integrating ethics into science education. The special issue also featured two members of the American Journal of Bioethics Neuroscience: editor-in-chief Dr. Paul Root Wolpe, and editor Dr. John Banja. The issue was guest edited by a neurosurgical resident at Emory University, Jordan Amadio. Click here to view the special issue.

Emerging Ethical Issues in Neurosurgery: An Interview with Dr. Wolpe by Dr. Jordan Amadio

"The single most important thing to remember is that when we intervene in the brain it is a completely different kind of intervention than when we intervene in any other part of the body. It has the potential of altering those aspects of ourselves that we think of as most human--our personalities, our ability to communicate, and our subjective world. When we begin to think about something like deep brain stimulation, which has been shown to induce personality shifts, or when we talk about adding some sort of information technology to our brain and processes, or when we talk about the potential of chemically altering the brain through psycho-pharmaceuticals, ... it is a different qualitative kind of shift in the patient than if we were for example intervening in the function of their kidney, their heart, or their liver."



Listen to more of the interview here.

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Disclosure of Experience as a Risk Factor in Informed Consent for Neurosurgery: The Case of Johnson v. Kokemoor

By Dr. John Banja



"A problem that has bedeviled both medical law and medical ethics for decades concerns the scope of risk-related information that a health professional should provide to patients, especially when that information involves the health professional’s experience and success rates with a certain procedure. For example, I take a rather perverse delight in provoking medical students with the following line of questioning: “How do you determine what risks you’re going to disclose to a patient?”"



View the rest of the article here.






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Marshall, J. (2015). Ethical Issues in Neurosurgery: A Special Issue of Virtual Mentor. The Neuroethics Blog. Retrieved on

, from http://www.theneuroethicsblog.com/2015/01/ethical-issues-in-neurosurgery-special.html

2013 Neuroethics Scholar, Jen Sarrett: Autism and the Communication of 'Risk'

The Neuroethics Scholar Program

By Jennifer C. Sarrett

This project is done through The

Neuroethics Scholar Program

As defined in the new Diagnostic and Statistical Manual of Mental Disorders (DSM 5), Autism Spectrum Disorder (ASD) is diagnosed in individuals who show differences in social communication—such as a reliance on non-verbal communication techniques or difficulties interpreting social signals—and specific behavioral patterns—such as repetitive vocal or motor behaviors or intense interests in specific items. These characteristics must be evident before the age of 3 in order to quality for an ASD diagnosis¹. While there are diagnostic tools that are able to reliably diagnose ASD by the age of 2, most reports show that, on average, children are not diagnosed until school age. These rates vary by several factors, including race and urbanicity². For many professionals, this delay in diagnosis is concerning because, as the Centers for Disease Control and Prevention³ and most other autism professionals stress, early identification and diagnosis leads to early intervention which leads to better outcomes for many children and families.

Finding innovative ways to identify autism earlier in life is a goal for many researchers, including a group of professionals at the Marcus Autism Center⁴. Marcus is a well-known research and clinical facility in Atlanta that is affiliated with Emory University, Children’s Healthcare of Atlanta, and Autism Speaks. In 2010, renowned autism researcher, Dr. Ami Klin, became the new director of Marcus and brought much of his research and clinical team from the Yale Child Study Center along with him. This team has been working on cutting edge technologies to identify autism-associated traits in infants and toddlers. In particular, they are using eye tracking technologies and vocalization software because, as their previous research has shown, very young children who eventually become diagnosed with autism show differences in their looking and vocalization patterns. 

The Marcus Autism Center, Atlanta, GA

Specifically, this research shows that children, adolescents, and adults who prefer to look at objects, rather than people, and at mouths, rather than eyes, in social situations are more likely to be on the autism spectrum than those with the opposite pattern. These patterns in looking are associated with vocalization patterns. Previous research has shown that autistic children prefer to look at items showing physical and acoustic synchronicity. This means that when looking at faces of people who are talking, autistic children prefer to look at the mouth probably because mouths, unlike eyes, move in time with verbal sounds. Mouths, however, provide much less social-communication information than eyes and so may influence a child’s social-communicative development. This different way of learning language—that is, through physical rather than social contingencies—may contribute to the delay in verbal language development often seen in autistic children⁵. The researchers and clinicians at the Marcus center are interested in correlating eye tracking and vocalization techniques over the first few years of life to determine if there is a strong correlation between infant and toddler looking and vocalization patterns with later autism diagnoses. With this information, it is hoped that early screening tools can be developed and widely used to identify as early as possible the likelihood that a child will later be diagnosed with autism. 

As the 2013-2014 Neuroethics Scholar, I will be working closely with both the Marcus Autism Center and Center for Ethics to explore ways to communicate autism ‘risk’ to caretakers if and when this technology becomes widely used. To do so, I will be observing clinical assessments and practices, learning about the eye tracking and vocalization technologies, and meeting regularly with professionals at the Marcus Autism Center. The outcome will be a set of recommendations on how to communicate to caregivers that their child may later be diagnosed with autism in a way that is accurate, realistic, and respectful to families and to the wider autistic community. 

One place I plan on starting is evaluating the usefulness of the word ‘risk,’ a value-ladened identifier of the possibility of a later diagnosis. In the words of Yudell, et al.:

"While value judgments implicit in risk communication may sometimes be uncontroversial (e.g. that developing cancer is a harm), in other cases, they may be both rationally contestable and politically controversial. As regards to ASDs, there is a need for more nuanced discussions in the sciences as to whether “risk” is an appropriate descriptor for all ASD-related phenotypes. Arguably, the most important value judgement presupposed by risk communication for ASDs is that ASDs are harmful outcomes to be avoided" (2012, p 5)⁶.

There is a relatively small subset of individuals who have significant autistic characteristics that make a high quality of life for themselves and their families very difficult. Another, somewhat larger, subset of the autistic population are individuals whose characteristics are less significant and who may find their autistics traits useful and valuable⁷. As of now, there is no reliable way to determine which infants, toddlers, or children will end up in which group. Thus, the word ‘risk’ is an inappropriately fearful term to use when discussing the prognosis of an infant based on early visual or vocalization patterns. Henceforth, I will be recommending the use of the phrase ‘autism possibility’ or ‘likelihood of autism.’ 

The recommendations I will make, including the abandonment of the word ‘risk,’ are somewhat influenced by the concept of neurodiversity. This is the advocacy position which states autism and related conditions are just one of a range of outcomes of human neurological development. Similar to how biodiversity argues that we need to maintain all species for global balance, neurodiversity argues that people with autism and other neurological differences should exist alongside neurotypical individuals. To maintain this balance, autistic individuals should be neither cured nor normalized. I will describe this position in more depth in my next blog post, but it is important to emphasize here that neurodiversity works towards autism acceptance, rather than autism awareness. As such, using a word like ‘risk,’ which is suggestive of highly undesirable outcomes, is inappropriate because many autistic adults greatly value their autistic characteristics and many families find living with autism a rewarding and comfortable experience.

In addition to the larger project of the communication of autism possibility, I will also be in contact with the individuals at Marcus who are responsible for redesigning the resource room. This room is available to parents and professionals and contains a wide variety of information about ASDs. For this smaller project, I will be proposing several materials that provide a neurodiverse perspective to be included in the new resource room. While I do not believe it is appropriate to force people to hear about and rely on this perspective, I do believe it is ethical to provide it as an alternative narrative of what autism is and means. The choice to adhere to it in their daily lives remains a personal decision. 

This project will provide an important base for future projects on the ways we talk about and represent autism to providers and families. It is unproductive to begin communication about autism with a veneer of fear and hopelessness. Instead, providing factual and realistic information in clear and palatable formats is paramount to empowering families to make well-informed decisions about their child’s life and can lead to better family-provider relationships. 

Jennifer C. Sarrett

References

[1] American Psychological Association, (2013). Diagnostic and Statistical Manual of Mental Disorders (5^th ed.). Arlington, VA: American Psychiatric Publishing.



[2] Daniels, Amy M & Mandell, David S. (2013). Explaining differences in age at autism spectrum disorder diagnosis: A critical review. Autism, doi: 10.1177/1362361313480277.



[3] See the “Learn the Signs. Act Early” campaign by the CDC here: http://www.cdc.gov/ncbddd/actearly/index.html.



[4] See their website here: http://www.marcus.org



[5] Jones, Warren, Carr, Katelin, & Klin, Ami. (2008). Absence of preferential looking to the eyes of approaching adults predicts level of social disability in 2-year-old toddlers. Arch Gen Psychiatry, 65(8): 946; Klin, Ami & Jones, Warren. (2008). Altered face scanning and impaired recognition of biological motion in a 15-month-old infant with autism. Developmental Science, 11(1): 40-46; Klin, Ami, Jones, Warren, Schultz, Volkmar, Fred, & Cohen, Donald. (2002). Visual fixation patterns during viewing of naturalistic social situations as predictors of social competence in individuals with autism. Archives of General Psychiatry, 59: 809-814; Klin, Ami, Lin, David J., Gorrindo, Phillip, Ramsay, Gordon, & Jones, Warren. (2009). Two-year-olds with autism orient to non-social contingencies rather than biological motion. Nature, 459(14): 257-263; Rice, Katherine, Moriuchi, Jennifer M., Jones, Warren, & Klin, Ami. (2012). Parsing heterogeneity in Autism Spectrum Disorders: Visual scanning of dynamic social scenes in school-aged children. Journal of the American Academy of Child & Adolescent Psychiatry, 51(3): 238-248; Shultz, Sarah, Klin, Ami, & Jones, Warren (2011). Inhibition of eye blinking reveals subjective perceptions of stimulus salience. PNAS, 108(52): 21270-21275.



[6] Yudell, Michael, Tabor, Holly K, Dawson, Geraldine, Rossi, John, Newschaffer, Craig, & Working Group in Autism Risk Communication and Ethics. (2012). Priorities for autism spectrum disorders risk communication and ethics. Autism. doi: 10.1177/1362361312453511.



[7] Klein, S.D., and K. Schive (eds.). (2001). You will dream new dreams. Inspiring personal stories by parents of children with disabilities. New York: Kensington.





 

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Sarrett, J. (2013). Autism and the Communication of 'Risk'. The Neuroethics Blog. Retrieved on
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The identification of risk for serious mental illnesses: Clinical and ethical challenges

By Elaine Walker, Ph.D., Sandy Goulding, MPH, MA., Arthur Ryan, MA., Carrie Holtzman, MA., Allison MacDonald, MA.



Elaine Walker is Samuel Candler Dobbs Professor of Psychology and Neuroscience in the Department of Psychology at Emory University.  She leads a research laboratory that is funded by the National Institute of Mental Health  to study risk factors for major mental illness.  Her research is focused on child and adolescent development and the brain changes that are associated with adolescence.



The identification of risk factors for illness is receiving increased attention in all fields of medicine, especially cardiology, oncology, neurology and psychiatry.  There are three potential benefits to identifying risk factors. The first is to reduce morbidity by reducing risk exposure. The second is to enhance opportunities for targeting preventive treatment toward those who are most likely to benefit. Finally, the identification of risk factors can shed light on pathological mechanisms.



There are, of course, costs as well as benefits involved in this endeavor.  The benefits, in terms of reducing morbidity and mortality, are noncontroversial.  The costs, however, can be very controversial and they have generated discussion among ethicists. Foremost among the costs is the potential discomfort and distress that results from the identification of an individual as being at statistical risk for future illness.  There are also significant concerns about whether treatment should be initiated prior to the manifestation of symptoms that reach clinical threshold.  These concerns are especially salient in the field of psychiatry. In this post, we discuss current efforts to identify risk factors for serious mental illness and the ethical considerations they raise.

Among researchers and practitioners in the field, the term “serious” mental illness is typically used to refer to psychotic and chronic mood disorders.  Such disorders include schizophrenia, schizoaffective disorder, bipolar disorder, and major depression.  By definition, schizophrenia and schizoaffective disorders always entail psychotic symptoms; hallucinations, delusions and/or thought disorder.  Bipolar disorder and depression can occur with or without psychotic symptoms. Currently, the general consensus in the field is that these disorders stem from brain dysfunction that is caused by both biological and environmental factors. These illnesses also have substantial adverse social and personal consequences. In fact, this is particularly true of schizophrenia and other psychotic disorders, as they affect 1-2% of the population, typically begin in late adolescence/early adulthood, and are often chronic.



Consistent with other fields of medicine, research aimed at identifying risk factors for serious mental illnesses has burgeoned in the past few decades.  The first ‘generation’ of these investigations, referred to as “genetic” high-risk research, focused on the biological offspring of parents who suffered from serious mental illnesses such as schizophrenia. While this work yielded some useful findings, it was limited by the fact that the psychosis risk-rate for children of parents with schizophrenia is about 12% to 15%. In other words, the overwhelming majority do not develop the illness.  Further, the majority of schizophrenia patients do not have a biological relative with the illness, meaning that this approach failed to include a substantial portion of individuals with schizophrenia.



As a result of these limitations, researchers shifted their attention to individuals who manifest clinical signs of risk. This line of investigation draws on the results of prospective and retrospective studies of the behavioral signs that precede the onset of clinical psychosis. These signs include, but are not limited to, mood disturbances, unusual ideations and perceptual experiences, and declines in occupational, academic and social functioning.  The period when these signs emerge can vary from months to years, and is referred to as the “prodrome”.



Assessment instruments have been developed to measure prodromal signs, and criteria have been established to designate those at greatest statistical risk. Most of those who meet these criteria are in subjective distress and have previously sought or received mental health services.  In the context of research, the term “clinical high risk” is typically used to refer to these help-seeking individuals.   Further, based on the results of prospective studies, it is estimated that the risk rate for subsequent psychosis ranges from 25% to 40% - - - far higher than the risk rate for individuals with an affected family member.  The other 60% to 75% manifest a range of outcomes, with some remaining stably symptomatic and others showing a decline in symptoms and no subsequent psychiatric disorder.

There are numerous ongoing research projects in many countries that are aimed at enhancing our ability to predict psychosis risk beyond the 25-40% level.  Our research group is pursuing this goal as part of a multi-site project funded by the NIMH.  This project, the North American Prodrome Longitudinal study (NAPLS), is also concerned with elucidating the neural mechanisms that are associated with the development of psychotic disorders. We are now in the 5th year of this project, and just beginning the stage of data-analysis that will test alternative prediction algorithms.



In the interim, clinical researchers are confronted with questions concerning the potential stigma and psychological distress associated with psychosis-risk identification, as well as the provision of treatment for these individuals. The issues of stigma and subjective distress have some unique aspects when it comes to disorders of brain function, as opposed to disorders involving other organ systems. The brain is generally assumed to be the organ that subserves our mind and personal identity, and the behavioral problems that can result from its dysfunction are sometimes viewed as being under volitional control.  The latter view is one source of the stigma associated with mental disorders: patients are assumed to be responsible for their symptoms.  At the same time, there is a tendency for many to view individuals with mental illnesses as being dangerous because they are unable to control their behavior.   Together, these factors reduce sympathy for individuals with mental illness.  They also place additional burdens on those who are already experiencing the mood, perceptual and ideational abnormalities that are associated with the prodrome to psychosis.

With regard to the stigma associated with clinical risk for psychosis, the issues vary among individuals.   Among those who participate in our collaborative NIMH project clinical risk, some self-identify as being “at-risk”, through statements such as “I am afraid something is wrong with my mind,” or “I feel like I am going crazy.”  In contrast, others report nonspecific concerns with recurring, distressing ideas, and are seeking help to reduce their distress.   Finally, some individuals who are manifesting signs of risk for psychosis do not perceive a problem. This is especially likely to be true of adolescents whose behavior raises concerns in parents and teachers, although the child views him or herself as being “misunderstood.”



At the present time, there is no standard practice for informing individuals about risk signs for psychosis, and the principle of doing no harm guides practitioners and clinical researchers. Furthermore, clinical researchers emphasize that we cannot predict the onset or course of any illness with precision, and that many who manifest risk signs, especially during adolescence, subsequently experience remission and show no signs by the time they enter young adulthood.



There are also challenging issues when it comes to the provision of treatment for those manifesting signs of psychosis risk.  While there is a consensus that psychotherapy/counseling should be available to any individual in significant distress, the issue of medication for individuals at clinical risk for psychosis is controversial.  At the present time there is no cure for psychotic disorders, and the antipsychotic medications that are used to treat psychosis only partially reduce symptoms, and they are ineffective for a substantial proportion of patients.   These medications also have a variety of side effects (e g., metabolic, neurological) and can be highly sedating.  Finally, there is no consistent evidence that antipsychotic medications can prevent psychosis, although some studies suggest that they reduce the severity of preclinical symptoms.



Based on the currently available data, most researchers in the field of psychosis risk do not advocate the preventive use of antipsychotic medication.  Yet, many individuals who manifest preclinical signs of risk for psychosis do receive antipsychotics from mental health practitioners.  There are several reasons for this, including the practitioner’s desire to reduce the severity of the subclinical symptoms, the broad marketing of antipsychotics (e g., Abilify) to the general public for the treatment of depression, and the desire of patients and their families to intervene in any way possible to prevent the a first episode of psychosis.  The latter concern is especially salient for families who already have an adult child affected by a psychotic illness.



In summary, it is clear that we have a long way to go before we are able to predict serious mental illness at a level of positive predictive power that would justify targeted preventive intervention, especially with agents that can have adverse side effects.  Moreover, we do not yet have consistent evidence of any effective preventive treatment.  But, as indicated in the references listed below, clinical studies are underway around the world. Findings from these studies are yielding important information about prediction, as well as the brain changes that accompany the emergence of psychosis.   As we await more scientific progress in these key areas, we should also continue to carefully consider the ethical issues that surround the identification of individuals who are at risk for serious illnesses.  This is especially the case for illnesses that entail brain dysfunction.

References



Addington, J., Cadenhead, K. S., Cornblatt, B. A., Mathalon, D. H., McGlashan, T. H., Perkins, D. O., Walker, E. F. & Cannon, T. D. (2012). North American Prodrome Longitudinal Study (NAPLS 2): Overview and recruitment. Schizophrenia research.



Addington, J., Cornblatt, B. A., Cadenhead, K. S., Cannon, T. D., McGlashan, T. H., Perkins, D. O., ... & Heinssen, R. (2011). At clinical high risk for psychosis: outcome for nonconverters. The American journal of psychiatry, 168(8), 800.



Cornblatt, B. A., Carrión, R. E., Addington, J., Seidman, L., Walker, E. F., Cannon, T. D., ... & Lencz, T. (2012). Risk factors for psychosis: impaired social and role functioning. Schizophrenia bulletin, 38(6), 1247-1257.



Walker, E. F., Trotman, H. D., Pearce, B. D., Addington, J., Cadenhead, K. S., Cornblatt, B. A., ... & Woods, S. W. (2013). Cortisol Levels and Risk for Psychosis: Initial Findings from the North American Prodrome Longitudinal Study. Biological psychiatry.



Weiser, M. (2011). Early intervention for schizophrenia: the risk-benefit ratio of antipsychotic treatment in the prodromal phase. American Journal of Psychiatry, 168(8), 761-763.





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Walker, E., Goulding, S., Ryan, A., Holtzman, C., MacDonald, A. (2013). The identification of risk for serious mental illnesses: Clinical and ethical challenges. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2013/05/the-identification-of-risk-for-serious.html