The Missing Subject in Schizophrenia

By Anna K. Swartz

Image drawn by Anna Swartz

Since this is, in many ways, a post about narratives, I have decided I should begin with mine. 

Every morning I take an oblong green and white pill, every night I take another of the same oblong green and white pill. I also take circle and oval pills. This helps in keeping me tethered to reality, functioning with fewer hallucinations and delusions. My official diagnosis is schizoaffective, bipolar type 1. Schizoaffective disorder is closely allied to schizophrenia but is rarer, striking about 0.3 percent of the population. It’s also by many accounts “worse” in that it incorporates the severe depression and psychosis that is characteristic of bipolar disorder, as well as the loss of touch with reality wrought by schizophrenia. I find it easier to admit to being bipolar than I do schizophrenic. I have found a much more positive reception to bipolar disorder. It’s a disease often associated with creative individuals who are highly intelligent and have traits that many see as advantageous, even covetous. That is, there is something romantic about the disease even as it wreaks havoc in a person’s life. It’s also much easier to talk about depression and mania because the chances are overwhelming that during the span of a normal lifetime, we will come face-to-face with some manifestation of mania or depression, either in ourselves or someone close to us. It’s familiar and understandable. That is less the case when it comes to hallucinations and delusions. Everyone has an inner voice that they can talk to sometimes in their thoughts. But hearing voices is not like that. Auditory hallucinations sound like they are coming from outside your head. Have you ever tried to write or read while people are having a loud conversation around you? Now imagine them screaming at you. This is how I feel most days. The voices are almost always caustic and denigrating, telling me that I would be better off dead. Delusions are also hard to explain. With a head fizzing with mad thoughts, I’ve stared up at ceilings with blue and brown swirling irises like cars in the center of a volcano. More often, I will see objects sitting on surfaces and watch them tip over or fall out of the corner of my eye only to blink and have them be static. I also experience paranoid delusions which are commonly manifested as thoughts that others are plotting against me, following me, watching me, or talking about me. 

More often, I am overcome by the so-called “negative” symptoms of schizophrenia where I exist in a numb fugue state that swallows me whole for months, punctuated occasionally by a jump in my mood and a frantic need for overachievement, which becomes even more frantic when I’m manic. During this time, I commit myself to grandiose plans, devour books about philosophy and theory, and generally pass myself off as an ambitious and successful scholar. However, for every seventy-two hours of blissful productivity, there are weeks of unrelenting depression, ruinous impulsivity, and monomania where I am terrified to be around people for fear of scaring them away; I stay in bed, hoping to sleep to quiet the world down. It’s these times when I about occasionally find a spark but not the creative or positive kind, the urge to problem solve, to solve my problems permanently. Not surprisingly, I have been hospitalized several times.  

Image drawn by Anna Swartz

Ultimately, having a sense of “who I am” is a profoundly problematic one. Identity is the structure and detail of a person, what you believe in and where you see yourself in relation to others and the world around you. When someone has a stable sense of self they are able to identify themselves as being the same person in their past, present and future, with of course the expected changes one goes through as time passes and events happen. So, what does it mean when your sense of self is disturbed? My delusions and hallucinations often occur with pained self-awareness, leaving me unable to trust who I am or where I am. For me, psychosis is not a single moment of “conversion” between one state of mind to the next. If there is a boundary between normal and insanity, I’m often in the liminal state of constantly questioning the reality that I had lived contently with for most of my life. The songs I hear playing in the wind and the nonexistent swat teams I see through my window at night are probably not real, but I worry of becoming addicted to the idea that they are. The boundary between fantasy and lived reality is porous, and when this happens, I worry that I have taken some irrevocable step toward willing illness upon myself.

The Disordered Concept of Schizophrenia

 “Schizophrenia” has demonstrated itself to be a slippery entity since the term was first introduced by Bleuler over a century years ago [1]. Disagreements over the definition of schizophrenia relate to some of the most fundamental aspects of the concept, such as whether it should be viewed as a social or medical problem, beliefs about its prognostic outcome, and treatment approaches towards those who are suffering from the disorder [2, 3].

Many now argue that “schizophrenia”—as a single unitary condition—simply does not exist. Instead, there may be a group of loosely related conditions we might consider to be “schizophrenias” (as Bleuler had originally believed), or it may be the case that we have mistakenly combined what are actually independent conditions. More than ever, psychiatrists around the world are pressing for the reconceptualization and rebranding of schizophrenia as a coherent disease entity, given the ambiguity, stigma, and barriers to care associated with the current diagnosis. 

The Limitations of Biological Explanations

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Modern scientific understandings frame schizophrenia as a grim “disorder of the brain”—primarily biological or genetic in nature—whose causes and treatments can be tracked and developed only through continuous “cutting-edge” research in neuroscience [4, 5]. This mainstream “precision medicine” narrative has manifested in an “illness like any other” approach [6] that treats mental disorders including schizophrenia as “brain diseases” or harmful deviations of “normal” bodily function no different in kind from those diseases we have already come to accept as exclusively physical.

Unfortunately, progress has with a dark side. In the case of schizophrenia, where stereotypes and misinformation abide, ascendant neurobiological explanations—widely embraced as the antidote to stigma and harmful misinformation—are themselves attributing to negative perceptions towards those who experience this illness. Unfortunately, the consequences of these perceptions extend beyond stigma and stereotypes; they also vex and complicate treatment, contributing to low recovery rates and a frightening death toll. 

It is a banal but important point that how we conceive of a problem largely determines how we respond to it. There is nothing inherently wrong with arguing schizophrenia in and through the brain. The problem comes when an explanatory model holds to simplistic, totalizing, and often damaging theories of schizophrenia as pathological: an objective and locatable disease of the brain, amputated from the person to whom that brain belongs, that is committed to medical interventions that treat symptoms as meaningless, unrelated to life histories. 

Listening to the Voices of Others 

Image drawn by Anna Swartz

In biological psychiatry, the experience of schizophrenia, as told by the individual living under the diagnosis, are drowned out by the voices of outside experts (psychiatrists, clinicians, scientists, researchers), who are acknowledged as more reliable and authentic in their capacity as knowers and contributors to the epistemic effort to reach a correct diagnosis and treatment [7, 10]. First-person symptom testimonies are virtually non-existent in academic journals, professional reports, and clinical practice [8]. Patients are simultaneously locked into and out of the research and practices that involve and affect them most directly, based on a prevailing clinical stereotype that undermines their capacity to provide truthful and reliable accounts of their own lives [9, 10]. This is a form of epistemic injustice [11, 10]. 

Kristie Dotson identifies two forms of epistemic injustice that are relevant to patients with schizophrenia. These include “testimonial quieting” which happens when a speaker from a marginalized group is not seen as a “knower” which results in the subsequent dismissal of their testimony by the dominant group; and “testimonial smothering,” which happens when a speaker believes their testimony will be misinterpreted so they self-silence (see [12] page 242). 

This silence also attests to the stigmatized nature of psychotic experiences. Such stigma and stereotypes are problematic for many reasons, beyond their empirical inadequacy. They encourage unwarranted attitudes of suspicion and distrust towards people with schizophrenia, which, in turn, contribute to our social isolation; this is in itself epistemically impairing. Each reinforce the other. 

How clinicians listen—or don’t listen—to patients’ voices has profound implications for patients’ therapeutic recovery. The ability to claim and articulate one’s unique experience is a core feature of being human, and when access to treatment and support are restricted to the narrow, operational, and sometimes dehumanizing “common” language of biological psychiatry, the result is a loss of its healing power. Reducing the rich texture of madness to a series of vaguely understood biogenetic mechanisms becomes a project in self-alienation that is antithetical to recovery and the very goals of psychiatry. 

Recovering Ourselves Through Narrative

Image drawn by Anna Swartz

Researchers have acknowledged that to understand and promote recovery from serious mental illness, we must study the subjective experiences and personal perspectives of individuals who are recovering from and coping with mental health problems [13, 14]. Recovery can be defined in many ways and may hold different meanings for different people. In psychiatric terms, recovery is often defined as the treatment or abolition of symptoms. But many patients do not define the return to a previous “normal” state through cure and treatment in order to pursue their lives in the community alongside everyone else. Instead, they want the capacity to make their own decisions, follow their own dreams, and otherwise have a meaningful, productive, and fulfilling life, as they are [13].

In a qualitative study of more than 100 people with different experiences of schizophrenia, variable in intensity and duration, Larry Davidson observed that these individuals narrated a loss of self and a social abandonment as the most distressing features of their illness [14]. Recovery or the fundamental turning point in their illness that enabled them to experience themselves in the world in meaningful ways was voiced as a need for belonging and acceptance by at least one person who could be counted on to support and stand by them during all parts of their illness [14]. Thus, the rebuilding of broken identities is inextricably linked to an engagement with the social and destigmatization.  

A Way Forward: Understanding Rather Than Etiology

Image drawn by Anna Swartz

What practical lessons can be learned here? What are the ethical and pragmatic conclusions we can draw about the care of people with schizophrenia and disorders alike? The most important point I can make is that schizophrenia involves a fundamental change to not only a person’s interpretation of the world, but also their very sense of self. This fusion of diagnosis with identity is why Sue Estroff calls schizophrenia an “I am” illness, more in the company of conditions like epilepsy and alcoholism, as opposed to an “I have” illness, such as cancer or heart disease (see [15] page 189). In other words, schizophrenia is not an “illness like any other” because the content of delusions and hallucinations are susceptible to sociocultural pressures in ways that arteries and cancer cells are not [16]. What our confused and delusional minds think is not beside the point, because it is the point.

An ethical approach to understanding and treating schizophrenia must be responsible not only to the needs of science but also to the many consistencies, including patients affected by it. It must recognize that all ways of narrativizing an illness from the outside are only ever partial explanations. It is often forgotten that the experience of schizophrenia in the first-person is itself a privileged type of expertise different than any kind one is able to obtain in medical school, the clinic, or the lab. Therefore, any improvement in accuracy with respect to elucidating the precise cause and approach to treating and preventing schizophrenia of necessity demands the participation of patients’ voices and agencies at every step, since these individuals have the unique and individual knowledge of what schizophrenia “is” from the inside. This will ensure a richer and more accurate understanding and will benefit efforts to provide the best support for people living with this diagnosis. I would suggest that good place to start would be for neuroscience and psychiatry to supplement questions such as “where is the pathology” with “how can I help.”

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Anna K. Swartz is currently taking graduate classes and applying to PhD programs. She earned a BA in anthropology from Wellesley College and a MS in Rhetoric, Theory and Culture from Michigan Technological University. The focus of her work in neuroethics has been on the brain disease model of mental disorders and how over-reliance on this paradigm might contribute to the stigmatization and marginalization of people with mental illness. She is especially interested in the development of classification systems for mental disorders, with special attention to schizophrenia.  

References



1. Bleuler, E. (1950). Dementia praecox or the group of schizophrenias (J. Zinkin, Trans). New York: International Universities Press. (Original work published in 1911).



2. Barrett, R. J. (1988). Interpretations of schizophrenia. Culture, Medicine and Psychiatry, 12(3), 357-388.



3. McNally, K. (2016). A critical history of schizophrenia. London: Palgrave Macmillian.



4. Heinrichs, R. W. (2001). In search of madness: schizophrenia and neuroscience. New York: Oxford University Press.



5. Vidal, F. (2009). Brainhood, anthropological figure of modernity. History of the Human Sciences, 22(1), 5-36.



6. Read, J., Haslam, N., Sayce, L., & Davies, E. (2006). Prejudice and schizophrenia: a review of the ‘mental illness is an illness like any other’ approach. Acta Psychiatrica Scandinavica, 114(5), 303-318.



7. Geekie, J. & Read, J. (2009). Making sense of madness: contesting the meaning of schizophrenia. New York: Routledge.



8. Geekie, J. (2016). Client’s understanding of psychotic experiences. In J. Read & J. Dillon (Eds.), Models of madness: psychological, social, and biological approaches to psychosis, 178-190. Oxford: Routledge.



9. Roe, D. & Davidson, L. (2005). Self and narrative in schizophrenia: time to author a new story. Journal of Medical Ethics, 31(2), 89-94.



10. Crichton, P., Carel, H., & Kidd, I. J. (2017). Epistemic injustice in psychiatry. BJPsych Bulletin, 41(2), 65-70.



11. Fricker, M. (2007). Power & the ethics of knowing. New York: Oxford University Press.



12. Dotson, K. (2011). Tracking epistemic violence, tracking practices of silencing. Hypatia, 26(2), 236-257.



13. Davidson, L. & Roe, D. (2007). Recovery from versus recovery in serious mental illness: one strategy for lessening confusing plaguing recovery. Journal of Mental Health, 16(4), 459-470.



14. Davidson, L. (2003). Living outside mental illness: qualitative studies of recovery in schizophrenia. New York: New York University Press.



15. Estroff, S. E. (1989). Self, identity, and subjective experiences of schizophrenia: in search of the subject. Schizophrenia Bulletin, 15(2), 189-196.



16. Luhrmann, T. M. (2016). Introduction. In T. M. Luhrmann & J. Marrow (Eds.), Our most troubling madness: case studies in schizophrenia across cultures, 1-25. Oakland, CA: University of California Press.

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Swartz, A. (2018). The Missing Subject in Schizophrenia. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/07/the-missing-subject-in-schizophrenia_28.html

Exploring the Risks of Digital Health Research: Towards a Pragmatic Framework

By Dr. John Torous

Image courtesy of Flickr user Integrated Change

We often hear much about the potential of digital health to revolutionize medicine and transform care – but less about the risks and harms associated with the same technology-based monitoring and care. “It’s a smartphone app … how much harm can it really cause?” is a common thought today, but also the starting point for a deeper conversation. That conversation is increasingly happening at Institutional Review Boards (IRBs) as they are faced with an expanding number of research protocols feature digital- and smartphone-based technologies.

In our article, ‘Assessment of Risk Associated with Digital and Smartphone Health Research: a New Challenge for IRBs” published in the Journal of Technology and Behavioral Science [1], we explore the evolving ethical challenges in evaluating digital health risk, and here expand on them. While risk and harm in our 21^st century digital era are themselves evolving topics that change with both technology and societal norms, how do we quantify them to help IRBs in making safe and ethical decisions regarding clinical research?

A first step is to consider what is the baseline risk of any online or connected technology. Take for example privacy. In countries like the United States, internet service providers can now legally collect and sell users’ web browsing history without consent [2]. Popular websites such as Facebook may at times track users even when logged out or sometimes even without them ever having signed up [3]. The uses of this digital data can range the gamut from targeted advertising to police subpoenas of Fitbit and smartphone data for criminal prosecution [4]. With so much personal data already being collected in everyday life as the price of admission for use of today’s online services, what qualifies as high or low risk digital data collection in a clinical study or even everyday life? In Europe, this question has led to the new General Data Protection Regulation (GDPR) that took effect on May 25^th 2018 [4] and set new strict and enforceable standards for online privacy, the right to be forgotten, data portability, data access, and breach notifications. Whether other countries will follow and pass legislation similar to the GDPR remains to be seen, but until then the question of assessing risks around privacy remains challenging for IRBs, researchers, and the public.

Image courtesy of Pixabay

While privacy is the chief risk considered today with online-, sensor-, and smartphone-based research, as these tools develop so does their potential to create new risks. Three other types of risks that are important to consider are physical, psychological, and financial. In the published literature, there are surprisingly few cases of physical harm resulting from smartphone-based research studies which may in part reflect that most studies today focus on monitoring or lowering risk lifestyle interventions. There is also a paucity of data on psychological harms from smartphone-based studies or how people may react to being closely monitored, for example via GPS on their smartphone, etc. Likewise, there has been little reported on financial risks associated with inadvertent disclosure of digital data collected by sensors and smartphones. This is not to say these risks are minimal, but rather that as a field we need to better study and quantify these risks and their magnitude of harm. Without good data, it is challenging for IRBs to make informed decisions about studies - and equally challenging for research participants to make informed decisions about joining that study.

Further considerations that are more unique to digital health studies include assessing technology literacy and bystander risk. While words like ‘GPS,’ ‘anonymized data,’ and ‘hashing’ are frequently used in informed consent documents for smartphone studies, it is important to ensure that those signing informed consent actually understand what these words mean. Do you know the difference between de-identified and anonymized data? There is some research suggesting that those with lower health literacy may also be vulnerable to assuming health technologies like smartphone apps, etc. are safer and more secure than they actually are [6]. This raises the issue of a new digital divide not based on access to technology, but rather on understanding risks and equitable utilization. Yet another risk to consider that does not often occur in classical clinical research but more frequently with digital technology studies is bystander risk. Voice recordings may capture other voices in the nearby vicinity, Bluetooth monitoring will record information about nearby smartphones, and cameras may capture an entire scene with others in it.

Image courtesy of Wikimedia Commons

Putting it all together, the model below seeks to guide IRBs through considering the different types of risk as well as ways to mitigate them. While this model is not designed to be comprehensive or thorough for every type of digital health study for every type of clinical population, hopefully the basic themes and examples provided may help guide informed decision making.

Recognizing risks in digital health studies is not an exercise in hindering research, but rather the pathway to mitigate risk and help ensure safer and better studies. For example, the largest risk factor of privacy is actually often the easiest to mitigate with appropriate encryption and security protocols. Ensuring that informed consent language is appropriate for those who are less technology-literate can help them better understand the study and be more interested in meaningfully participating. Communities like the Connected and Open Research Ethics (CORE) offer free and easy access to support and online forums for researchers, IRBs, and anyone to ask questions and receive answers on digital health ethics. The Neuroethics Blog you are reading right now also offers a wealth of relevant posts to help guide ethical decision making in this digital era. But perhaps the best resources of all remains an open mind willing to explore not only the benefits of digital technology, but also ponder the risks in order to bring both sides together for more informed decision making.

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John Torous MD is director of the digital psychiatry division at Beth Israel Deaconess Medical Center at Harvard Medical School. As a board-certified psychiatrist with a background in computer sciences and clinical informatics, his research on smartphone apps and sensors for predicating relapse in serious mental illnesses like schizophrenia bridges engineering and clinical care. In 2017, Dr. Torous was awarded the Carol Davis Ethics Award by the American Psychiatric Association, an annual award for ethics and mental health work. 



References

1. Torous J, Roberts LW. Assessment of Risk Associated with Digital and Smartphone Health Research: a New Challenge for Institutional Review Boards. Journal of Technology in Behavioral Science. 2018:1-5.



2. FCC releases proposed rules to protect broadband consumer privacy (2016). Federal Communications Commission. https://www.fcc.gov/document/fcc-releases-proposed-rules-protect-broadband-consumer-privacy. 




3. https://www.buzzfeed.com/alexkantrowitz/heres-how-facebook-tracks-you-when-youre-not-on-facebook?utm_term=.loGrdzO1g#.eiED5XZR2



4. https://www.washingtonpost.com/local/public-safety/commit-a-crime-your-fitbit-key-fob-or-pacemaker-could-snitch-on-you/2017/10/09/f35a4f30-8f50-11e7-8df5-c2e5cf46c1e2_story.html?noredirect=on&utm_term=.a4acd2fba4ea



5. https://www.eugdpr.org/



6. Mackert M, Mabry-Flynn A, Champlin S, Donovan EE, Pounders K. Health literacy and health information technology adoption: the potential for a new digital divide. Journal of medical Internet research. 2016 Oct;18(10).

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Torous, J. (2018). Exploring the Risks of Digital Health Research: Towards a Pragmatic Framework . The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/07/exploring-risks-of-digital-health.html

The interplay between social and scientific accounts of intergroup difference

By Cliodhna O’Connor

Image courtesy of Wikimedia Commons

The investigation of intergroup difference is a ubiquitous dimension of biological and behavioural research involving human subjects. Understanding almost any aspect of human variation involves the comparison of a group of people, who are defined by some common attribute, with a reference group which does not share that attribute. This is an inescapable corollary of applying the scientific method to study human minds, bodies and societies. However, this scientific practice can have unanticipated – and undesirable – social consequences. As my own research has shown in the contexts of psychiatric diagnosis (O’Connor, Kadianaki, Maunder, & McNicholas, in press), gender (O’Connor & Joffe, 2014) and sexual orientation (O’Connor, 2017), scientific accounts of intergroup differences can often function to reinforce long-established stereotypes, exaggerate the homogeneity of social groups, and impose overly sharp divisions between social categories.

Without disputing the scientific legitimacy of intergroup comparisons in research, it is important to acknowledge that the definitions and distinctions that determine which populations are compared are given by culture, not by nature. For one thing, there are relatively few discrete categories underlying human variability ‘in the wild:’ even for variables seen as the most obvious examples of natural kinds, such as sex, the boundaries between categories are much fuzzier than is typically acknowledged (Fausto-Sterling, 2000). The pragmatic demands of experimental design encourage scientists to carve the social world at joints that it may not naturally possess. Secondly, the choice of intergroup comparison is not value-neutral: the priorities of governments, industries, funding agencies, universities and individual scientists dictate which comparisons are deemed sufficiently interesting or important to investigate. Therefore, even within the scientific sphere, how questions are asked and answered is influenced by a priori understandings of social categories. These understandings are absorbed into all stages of the scientific process, from research design right through the collection, analysis and interpretation of data.

Image courtesy of Wikimedia Commons

Scientific and cultural understandings become even more enmeshed as scientific findings migrate from the laboratory into wider society. As they circulate through the public sphere, scientific accounts of intergroup difference may come to not merely describe, but actively shape the social divisions they seek to explain. This process is perhaps best captured by Hacking’s (1995) notion of a ‘looping effect,’ which characterises the understandings held by individuals, science and society as locked in a perpetual cycle of mutual influence. Hacking’s key insight is that the constitution of a scientific category, which is then applied to human persons, creates a new ‘kind’ or ‘type’ of person. Psychiatric diagnosis is a paradigmatic example. For instance, the emergence of the scientific category of ‘autism’ in the 20th century changed how a large swathe of persons defined themselves and were perceived by others. As a category becomes widely known, the general public begins to observe the behavioural patterns of individuals classified under this label, and this influences the direction of ongoing research on the topic – for example, Silberman (2015) describes the critical role of parental activism in challenging the conventional conflation of autism with low intelligence. The scientific definition may change again, with a corresponding evolution of the attached social realities. The decision to remove the diagnosis of ‘Asperger’s Disorder’ from DSM-5 was a case in point, leaving some feeling robbed of a label with which they had deeply identified (Singh, 2011).

Gender is another example where the interpenetration of scientific and cultural understandings is highly evident. The science of sex has long been plagued by prejudice: throughout modern history, biological explanations of sex differences have been a stock tool for those seeking to justify women’s exclusion from political, occupational and financial realms. This continues today: as Cordelia Fine (2017) demonstrates in her recent book, much contemporary sex difference research is premised on recurrent conceptual and methodological biases. These include the presumption of a simplistic gender binary in research design and interpretation, the tendency to over-emphasise small between-sex differences while ignoring large within-sex variation, and the unwarranted favouring of deterministic genetic explanations for brain differences over the equally plausible proposition that plastic brains are shaped by systematically different social experiences. These problems are heightened when scientific information enters the communication channels that comprise today’s public sphere, as Helene Joffe and I showed in an analysis of social representations of one high-profile study of neurological sex differences (O’Connor & Joffe, 2014). By tracking how the scientific information evolved as it moved from the scientific journal, via a press release, into mass and social media, we demonstrated that irrelevant gender stereotypes were progressively hitched onto the study as it was reported and discussed. The rhetorical authority of ‘science’ was harnessed to justify these stereotypes’ factual truth and normative legitimacy.

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The theories and techniques of social psychology are crucial resources in understanding the processes and outcomes of these interactions between science and society. For instance, there is a rich literature enlightening how group identity commitments drive interpretations of scientific information: people selectively attend to and elaborate information in ways that support their own group’s worldview (Joffe, 1999; Kahan, Jenkins-Smith, & Braman, 2011; Morton, Haslam, Postmes, & Ryan, 2006). Research on psychological essentialism specifically investigates the effects of attributing group differences to biology: for example, while genetic explanations of mental illness may reduce blame, they simultaneously increase fear, social distance, perceived dangerousness, and patronising treatment (Dar-Nimrod & Heine, 2011). Theories of stereotype formation can illuminate the networks of beliefs into which scientific accounts of intergroup difference may be drawn: for instance, media accounts of sex difference research often comply with a form of ‘complementary stereotyping,’ where the derogation of women’s intellectual abilities is made more palatable by emphasising their superior performance in other, less valued domains (e.g. ‘emotional intelligence’). Packaging stereotypes in a way that makes them sound reasoned and reasonable increases their effectiveness at inculcating acceptance of inequalities (Jost & Kay, 2005). Scientific information about group difference can therefore be used to make social inequalities seem justified and inevitable.

For scientists engaged in public communication of their research, familiarity with these social psychological dynamics is invaluable in anticipating the likely societal effects their research may have. Understanding these processes can help scientists predict how their work might be interpreted by others in undesirable ways, as well as inform critical reflection on how their own biases may affect the research questions they select and pursue. A socially responsible scientist should be aware of the feedback-loops between science and society and unafraid to scrutinise the ways their research influences, and is influenced by, the cultural, political and ideological environments in which it is situated.

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Dr. Cliodhna O'Connor is a social psychologist and Assistant Professor in Psychology in University College Dublin, Ireland. Her research investigates how people engage with scientific information and the implications this has for social attitudes, self-concept and common-sense beliefs. She currently holds a Marie Skłodowska-Curie Individual Fellowship, which supports a mixed-methods research programme exploring the phenomenon of diagnostic transitions in youth mental healthcare. 

References

Dar-Nimrod, I., & Heine, S. J. (2011). Genetic essentialism: On the deceptive determinism of DNA. Psychological Bulletin, 137(5), 800–818.

Fausto-Sterling, A. (2000). Sexing the Body: Gender Politics and the Construction of Sexuality. New York, NY: Basic Books.

Fine, C. (2017). Testosterone Rex: Unmasking the Myths of our Gendered Minds. New York, NY: W. W. Norton & Company.

Hacking, I. (1995). The looping effects of human kinds. In D. Sperber, D. Premack, & A. J. Premack (Eds.), Causal Cognition: A Multidisciplinary Debate (pp. 351–383). Oxford: Oxford University Press.
Joffe, H. (1999). Risk and ‘the Other.’ Cambridge: Cambridge University Press.

Jost, J. T., & Kay, A. C. (2005). Exposure to benevolent sexism and complementary gender stereotypes: consequences for specific and diffuse forms of system justification. Journal of Personality & Social Psychology, 88(3), 498–509.

Kahan, D. M., Jenkins-Smith, H., & Braman, D. (2011). Cultural cognition of scientific consensus. Journal of Risk Research, 14(2), 147–174.

Morton, T. A., Haslam, S. A., Postmes, T., & Ryan, M. K. (2006). We value what values us: The appeal of identity-affirming science. Political Psychology, 27(6), 823–838.

O’Connor, C. (2017). ‘Appeals to nature’ in marriage equality debates: A content analysis of newspaper and social media discourse. British Journal of Social Psychology, 56(3), 493–514.

O’Connor, C., & Joffe, H. (2014). Gender on the brain: A case study of science communication in the new media environment. PLoS ONE, 9(10), e110830.

O’Connor, C., Kadianaki, I., Maunder, K., & McNicholas, F. (in press). How does psychiatric diagnosis affect young people’s self-concept and social identity? A systematic review and synthesis of the qualitative literature. Social Science & Medicine.

Silberman, S. (2015). Neurotribes: The Legacy of Autism and the Future of Neurodiversity. New York, NY: Avery.

Singh, J. S. (2011). The vanishing diagnosis of Asperger’s Disorder. In P. J. McGann & D. J. Hutson (eds.), Sociology of Diagnosis (pp. 235–257) Bingley: Emerald.

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O’Connor, C. (2018). The interplay between social and scientific accounts of intergroup difference. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/07/the-interplay-between-social-and.html

Solitary Confinement: Isolating the Neuroethical Dilemma

By Kristie Garza

 

Eastern State Penitentiary

Image courtesy of Wikimedia Commons

In 1842, Charles Dickens visited the Eastern Penitentiary in Philadelphia to examine what was being called a revolutionary form of rehabilitation. After his visit, he summarized his observations into an essay in which he stated, “I am only the more convinced that there is a depth of terrible endurance in it which none but the sufferers themselves can fathom, and which no man has a right to inflict upon his fellow-creature. I hold this slow and daily tampering with the mysteries of the brain, to be immeasurably worse than any torture of the body” (1).  Dickens’ words describe solitary confinement. While there is no one standard for solitary confinement conditions, it usually involves an individual being placed in complete sensory and social isolation for 23 hours a day. What Dickens observed in 1842 is not unlike current solitary confinement conditions.

At its start, the justice system was meant to be rehabilitative, a place for individuals to learn from their mistakes and return to the community as productive members of society (2). This was an ideal model, but was not executed as well as described (3,4). In the 1970s it appeared that the current techniques were not working (rising crime rate and disenchantment with current state), and the system took a turn toward more punitive goals (2). Still, some scholars argue that the ideas behind rehabilitative treatment are embedded and possibly still growing within our current justice system (3).

Recent mainstream media articles are highlighting the need to push toward more rehabilitative measures. Solitary confinement does not align with the idea of rehabilitative treatment in prisons, as prisoners released directly from supermax prisons (which are comprised entirely of restrictive housing) committed crimes about 1 year sooner than individuals released from the general prison population (5).

Solitary confinement cell block at Alcatraz

Image courtesy of Flickr user Justin Ennis

The inefficiency of solitary confinement is not surprising considering the damaging effects of this treatment (6,7). For example, researchers have been able to observationally examine the psychological effects of solitary confinement in inmates, an effect referred to as “SHU syndrome” (6,7). SHU Syndrome includes difficulties with thinking, concentration, and memory, and affective disturbances, such as extreme anxiety and panic (6). It can lead to psychiatric disorders such as generalized anxiety or panic disorder. The effects of solitary can even manifest as symptoms of post-traumatic stress disorder (PTSD), such as developing hypervigilance and amnesia for the events that occur to them while in solitary (these symptoms are classified in the DSM5 Criterion D and E for PTSD) (6, 8).  Another symptom of SHU syndrome is difficulty with impulse control, which prisoners reported to lead to impulsive self-mutilation (6). Correspondingly, there is positive correlation between time spent in solitary and self-harm behavior (9). We must question the utility of a treatment with the potential to lead to psychological disturbances and self-harm.

Image Courtesy of Wikimedia Commons

While researchers have documented these symptoms of solitary, it is difficult to scientifically study inmates due to ethical issues with research involving prisoners, such as ensuring adequate informed consent (10). (For an example of why we need to study the neuroscientific effects of prison on an individual, see this 2014 blog post on the effect of prison sentences on oxytocin levels.) Previous studies have attempted to specifically study the effects of isolation in nonhuman animal models. Harry Harlow studied isolation in monkeys by placing them in a “pit of despair,” an inescapable steel vertical chamber which was “designed to facilitate production of psychopathological disturbances.” Upon release from this chamber, the isolated monkeys were more likely to “contact cling” to their peers, a behavior representing “maturational or psychological regression” (11). A separate study attempted to study similar effects in humans, where researchers placed male graduate students in complete sensory and social isolation for 24 hours. These conditions were found to impair thinking, induce visual disturbances, and cause childish emotional responses, such as high irritability interspersed with periods of easy amusement (12). If these types of effects are observed in graduate students due to 24 hours in isolation, the effects on inmates being subjected to worse conditions for longer durations is likely detrimental.

The ethical issues surrounding the use of solitary confinement have manifested in legal manners. Court cases have argued that solitary confinement violates an American citizen’s 8th amendment right to not be subjected to cruel and unusual punishment. Justification to counter this argument usually revolves around the rehabilitative nature of the treatment, as solitary confinement is thought to encourage reflection on self-actions. Author Lindley Bassett argues the impracticality of this type of claim by describing the damaging mental effects of solitary, such as those described above (13). Bassett reasons that if the mind is consumed with anxiety and panic, there is no space for an individual to reflect on his or her actions (13).

Image courtesy of Flickr user wp paarz

In a 2016 article, neuroscientist, Cara Altimus, stressed the need for a bridge in the knowledge gap between neuroscience and criminal justice policies (14). In her argument, she discusses that neuroscientists know genetics, trauma, and stress affect decision making, just as it is known that solitary confinement does affect mental health. While these facts are known, they do not necessarily mean that convicted individuals are making bad decisions because they have different brains than those not in prison. These facts simply highlight the need to incorporate these types of scientific findings on individual variability when examining the prison population and appropriate rehabilitative treatment.  Altimus argues that while we keep expanding on research findings in the lab, neuroscientists need to ensure these findings are being translated into the criminal justice field. Scientists should be involved in the criminal justice systems by ensuring their scientific findings, which could potentially impact policy, are heard and translated appropriately. Specifically, burgeoning neuroscientists have a responsibility to inform themselves on societal justice issues too, as they will eventually be the drivers of research questions influencing these issues. Scientists and ethicists should be brought into a conversation with criminal justice officials to discuss the implications of neuroscientific findings to the real-world justice system.

Due to various court cases, ethical discussions, and research studies, solitary confinement in its current state is not advised for individuals with preexisting mental illnesses (15). Because individuals with preexisting mental health conditions are already in a mentally vulnerable state, solitary confinement has been suggested to worsen current illnesses and disregard medical needs (15). While acknowledging these effects is a step in the positive direction, this creates a new set of ethical issues for physicians and psychologists, who are frequently called upon to deem someone mentally fit for solitary. In diagnosing one prisoner as being mentally unstable for solitary confinement, a clinician (most often a doctor or qualified nurse) would consequentially have to make the choice to subject another prisoner to the mentally damaging effects of solitary confinement.

World Health Organization logo

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The United Nations wants to eliminate the use of any isolation treatment because it “has been shown to be injurious to health.” Therefore,  The World Health Organization (WHO) recommends that physicians do not involve themselves in the process for clearing adult inmates as mentally fit for a duration in solitary confinement (16). While the recommendations seem strong, they present new ethical challenges. Complete removal of the clinician’s involvement from the solitary confinement process poses a danger to those inmates inevitably bound to solitary confinement. Should physicians follow the WHO recommendations, there would be no advocates for the mental and physical well-beings of the inmates in these conditions. However, allowing physicians to involve themselves and carefully monitor inmates would help encourage the practice (17). These issues leave clinicians, who swear by the Hippocratic Oath to do no harm, in an ethical dilemma.

While there are various recommendations that have come from researching the effects of solitary conditions, solitary confinement still very much resembles the 1842 version Dickens observed. However, there have been advances in restrictions to the treatment. In 2015, The United Nations Standard Minimum Rules for the Treatment of Prisoners revised their rules to prohibit prolonged solitary isolation for anyone and to completely prohibit isolation for children and individuals with mental disabilities. After becoming the first sitting president to visit a federal prison, President Barack Obama asked for a review of the overuse of solitary confinement in America. In 2016, after completion of this review, President Obama adopted the Justice Department’s recommendations, creating new guiding principles for the correctional system, such as expanding treatment for the mentally ill and increasing time spent outside. While these advances reflect positive changes, there is no guarantee that they are being followed; this fails to ameliorate the core issue at hand, leaving the ethical, psychological, and legal implications of solitary confinement unresolved.

 

 References

1. Dickens, C. (2004). Philadelphia, and its solitary prison. The American Poetry Review, 33(6), 15-19.

2. Garland, D. The Culture of Control: Crime and Social Order in Contemporary Society.

3. Phelps, M. S. (2011). Rehabilitation in the punitive era: The gap between rhetoric and reality in US prison programs. Law & society review, 45(1), 33-68.

4. Martinson, R. (1974). What works?-Questions and answers about prison reform. The public interest, (35), 22.

5. Lovell, D., Johnson, L. C., & Cain, K. C. (2007). Recidivism of supermax prisoners in Washington State. Crime & Delinquency, 53(4), 633-656.

6. Grassian, S. (1983). Psychopathological effects of solitary confinement. American Journal of Psychiatry, 140(11), 1450-1454.

7. Arrigo, B. A., & Bullock, J. L. (2008). The psychological effects of solitary confinement on prisoners in supermax units: Reviewing what we know and recommending what should change. International Journal of Offender Therapy and Comparative Criminology, 52(6), 622-640

8. Pai, A., Suris, A. M., & North, C. S. (2017). Posttraumatic stress disorder in the DSM-5: Controversy, change, and conceptual considerations. Behavioral Sciences, 7(1), 7.

9. Kaba, F., Lewis, A., Glowa-Kollisch, S., Hadler, J., Lee, D., Alper, H., ... & Venters, H. (2014). Solitary confinement and risk of self-harm among jail inmates. American Journal of Public Health, 104(3), 442-447.

10. Pope, A., Vanchieri, C., & Gostin, L. O. (Eds.). (2007). Ethical considerations for research involving prisoners. National Academies Press.

11. McKinney, W. T., Suomi, S. J., & Harlow, H. F. (1972). Vertical-Chamber Confinement of Juvenile-Age Rhesus Monkeys: A Study in Experimental Psychopathology. Archives of general psychiatry, 26(3), 223-228.

12. Heron, W. (1957). The pathology of boredom. Scientific American, 196(1), 52-57.

13. Bassett, L. A. (2016). The Constitutionality of Solitary Confinement: Insights from Maslow's Hierarchy of Needs. Health Matrix, 26, 403.

14. Altimus, C. M. (2017). Neuroscience Has the Power to Change the Criminal Justice System. eNeuro, 4(1), ENEURO-0362.

15. American Psychiatric Association. (2012). Position statement on segregation of prisoners with mental illness.

16. Møller, L., Gatherer, A., Jürgens, R., Stöver, H., & Nikogosian, H. (2007). Health in prisons: a WHO guide to the essentials in prison health. WHO Regional Office Europe.

17. Clark, A. B. (2017). Juvenile solitary confinement as a form of child abuse. The journal of the American Academy of Psychiatry and the Law, 45(3), 350-357.

18. Beck, A. J. (2015). Use of restrictive housing in US prisons and jails, 2011–12. US Department of Justice, Bureau of Justice Statistics. 43

19. Hafemeister, T. L., & George, J. (2012). The ninth circle of hell: An eighth amendment analysis of imposing prolonged supermax solitary confinement on inmates with a mental illness. Denv. UL Rev., 90, 1.





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Garza, K. (2018). Solitary Confinement: Isolating the Neuroethical Dilemma. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/07/solitary-confinement-isolating.html

Neuroethics: the importance of a conceptual approach

By Arleen Salles, Kathinka Evers, and Michele Farisco

Image courtesy of Wikimedia Commons.

What is neuroethics? While there is by now a considerable bibliography devoted to examining the philosophical, scientific, ethical, social, and regulatory issues raised by neuroscientific research and related technological applications (and a growing number of people in the world claim to take part in the neuroethical debate), less has been said about how to interpret the field that carries out such examination. And yet, this calls for discussion, particularly considering that the default understanding of neuroethics is one that sees the field as just another type of applied ethics, and, in particular, one dominated by a Western bioethical paradigm. The now-classic interpretation of neuroethics as the “neuroscience of ethics” and the “ethics of neuroscience” covers more ground, but still fails to exhaust the field (1).

As we have argued elsewhere, neuroethics is a complex field characterized by three main methodological approaches (2-4). “Neurobioethics” is a normative approach that applies ethical theory and reasoning to the ethical and social issues raised by neuroscience. This version of neuroethics, which generally mirrors bioethical methodology and goals, is predominant in healthcare, in regulatory contexts, and in the neuroscientific research setting.

“Empirical neuroethics” overlaps with social neuroscience and with what has been called “the neuroscience of ethics” (1). It uses neuroscientific data, specifically the relationship of the structures and different cognitive and affective processes in the brain, to inform theoretical issues (e.g.: how to understand moral reasoning, or how to understand informed consent and moral judgment) and practical issues (e.g.: who can give truly informed consent, or which beings can be considered moral agents). Neither of these approaches addresses a major challenge raised by neuroscience; namely: how neuroscientific knowledge can be relevant to philosophical, social, and ethical concerns. Answering to this challenge, we have identified a third, “conceptual” neuroethical approach that attempts to address scientific and philosophical interpretations.

The question arises: do we really need a conceptual approach? After all, doesn’t neuroscience include a conceptual component? Indeed, it does - although insufficiently. There are a number of ways in which we consider a specific conceptual approach key for addressing the issues raised by neuroscience; however, the conceptual apparatus of the neurosciences is somewhat limited by intrinsic and extrinsic factors. Consider, for example, an issue at the root of an epistemic insufficiency of neuroscience: the distinction between third-person and first-person accounts of notions like mind, consciousness, and normativity. Even if a material correspondence between cerebral (the object of neuroscientific investigation) and mental (1st person) levels exist, the mental (1st person) cannot be totally explained by 3rd person scientific accounts. And here, a conceptual neuroethics approach informed by philosophical reflection offers a more integral way to interpret the data. The same need for conceptual complementarity is found if we focus on mathematical models and computer simulation, highly sophisticated tools used by neuroscience that function as epistemic mediations between "the world" and "us." Particularly, models are not isomorphic with the target object: what features will be modeled depends on a selection process that is shaped by scientists' scientific and extra-scientific interests/purposes. The conceptual complementation offered by conceptual neuroethics can play a crucial role in helping neuroscience to build conceptual models that are not arbitrary and not inappropriate for explaining the target object.

Image courtesy of Flickr.

In previous works, we defended a particular version of the conceptual approach: fundamental neuroethics (FN) (4-6). FN is intended to be a reflection on the foundational elements (concepts and methods) of neuroscience. From this perspective, the challenges generally posed by scientific and neuroscientific findings arise not just at the scientific and socio-cultural levels but also at a more generally philosophical level, where the focus is on analyzing the meaning of neuroscientific terms, theories and interpretations, and their relations to how the same or similar terms are used in other disciplines and in ordinary, non-scientific discourse (7). Methodologically, fundamental neuroethics uses conceptual analysis to better understand neuroscience and its possible impact on our understanding of traditional notions such as identity, consciousness, and normative judgment (including moral judgment), among others. Notably, fundamental neuroethics’ main concern is the ontological and epistemic dimension of brain research. Indeed, the ethical and social issues raised by neuroscience cannot be adequately dealt with without acknowledging and addressing the epistemic and ontological aspects that play a major role in the quality of the research process and the legitimacy of the various interpretations of the relevant scientific findings. In short, the ethical, ontological, and epistemological aspects are not independent from each other but rather interwoven; effective reflection needs to address them all.

However, we are aware that one should be careful not to make too drastic a distinction between different neuroethical approaches. In fact, the distinction makes good analytic sense but it should not obscure the fact that the different approaches are complementary dimensions of one and the same field. An integral approach is necessary in order to properly address the issues involved.

To illustrate consider, for example, the following: 

Image courtesy of Flickr.

Empirical neuroethics takes neuroscientific findings as key in a) describing and eventually explaining a number of phenomena and experiences – including moral phenomena such as moral agency; b) potentially giving us important insights into fundamental philosophical notions and questions – such as how to understand autonomy and personhood (8); and c) refining and enhancing the moral tools ethicists use. The fact is, however, that taken by themselves these claims raise translational and conceptual issues. They raise translational issues because unless one supposes that brain facts and normative concepts correspond one to one (and there is no reason to take this for granted), it is not self-evident that brain facts have such explanatory power. But this is related to the conceptual issue: empirical neuroethics would greatly benefit from a conceptual clarification of key scientific and philosophical notions. How does it understand the brain and the mind and the relation between them (if indeed they can at all be separated)? What are the assumptions underlying some of the main conclusions, and can they be reasonably grounded? Indeed, a particular understanding of “brain facts,” their correlation with mental events, their value, and their normative weight underlie the claim that neuroscience has such explanatory power and can even lead us to revise particular metaphysical and ethical notions (9) (10). Conceptual approaches, including fundamental neuroethics, can nicely complement empirical neuroethics by providing the necessary conceptual investigations to satisfy a key requirement: explaining how biological data can have either explanatory or normative relevance. 

Making progress in addressing ethical issues and in uncovering the impact of neuroscientific findings on key human issues to a great extent depends on the concepts we use and how we understand them. Thus, a partnership between the three dominant forms of contemporary neuroethics is actually key. The conceptual approach we favor, fundamental neuroethics, provides at least two important things: an attitude of constructive critical alertness and a thought-out methodology that is intended to achieve both substantial scientific ground and conceptual clarity.

_______________

Arleen Salles, PhD. M.A. is a Senior Researcher in the Neuroethics and Philosophy Group at the Centre for Research and Bioethics (CRB) of Uppsala University. Task leader and research collaborator in the Ethics and Society subproject (SP12) of the European Human Brain Project,  and Director of the Neuroethics Program at CIF (Centro de Investigaciones Filosoficas) in Buenos Aires, Argentina. She is currently working on a conceptual analysis of human identity and the self, and the impact that some neuroscientific findings could have on what being human is.

Professor Kathinka Evers, PhD, is member of the Scientific Board Science of the European Human Brain Project (HBP) and leader of HBP's research in Philosophy and Neuroethics. She is senior researcher and professor of philosophy at the Centre for Research Ethics & Bioethics (CRB) at Uppsala University and Professor ad honoram at the Universidad Central de Chile since 2013. She has been Invited Professor on the Chair Condorcet at École Normale Supérieure, Paris (2002); at Collège de France, Paris (2006 -7); and at Centro de Investigaciones Filosoficas, Buenos Aires (2012).

Michele Farisco PhD, Associate Professor of Moral Philosophy, is part of Centre for Research Ethics and Bioethics neuroethics research team. He is the head of the "Science and society" research unit of Biogem Genetic Research Centre in Ariano Irpino (Italy). He is currently working on his second PhD about the neuroscientific and conceptual issues of consciousness and its disorders, and he is a member of the Neuroethics and Philosophy work-package of the HBP's Subproject 12.

References




1. Roskies A. Neuroethics for the new millenium. Neuron. 2002;35(1):21-3.




2. Farisco M, Evers K., Salles, A. Big Science, Brain Simulation, and Neuroethics. AJOB Neurosci. 2016;7(1):28-9.




3. Salles A, Evers, K. Social neuroscience and Neuroethics: A Fruitful Synergy
. In: Ibanez A, Sedeno, L., Garcia, A., editor. Social Neuroscience and Social Science: The Missing Link: Springer; 2017.




4. Evers K, Salles, A., Farisco, M. Theoretical Framing for Neuroethics: The Need for a Conceptual Aproach. In: Racine E, Aspler, J., editor. Debates About Neuroethics: Springer; 2017.




5. Evers K. Quand la matière s'éveille Paris: Éditions Odile Jacob; 2009.




6. Farisco M, Evers K., Salles, A. Fundamental neuroethics ten years later: an overview of the field
. Cambridge Quarterly of Healthcare Ethics. Forthcoming.




7. Evers K. Towards a philosophy for neuroethics. An informed materialist view of the brain might help to develop theoretical frameworks for applied neuroethics. EMBO Rep. 2007;8 Spec No:S48-51.

 


8. Farah MJ, Heberlein AS. Personhood and neuroscience: naturalizing or nihilating? Am J Bioeth. 2007;7(1):37-48.




9. Shook JR, Giordano J. A principled and cosmopolitan neuroethics: considerations for international relevance. Philos Ethics Humanit Med. 2014;9:1.




10.Northoff G. What is neuroethics? Empirical and theoretical neuroethics. Curr Opin Psychiatry. 2009;22(6):565-9.

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Salles, A., K. Evers, and M. Farisco. (2018). Neuroethics: the importance of a conceptual approach. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/07/neuroethics-importance-of-conceptual.html