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.

Dancing with the Devil

Hysteria usually calls to mind thoughts of the Salem Witch Trials and delirious frenzies from history. However, mass hysteria, or mass psychogenic illness, is not simply an improbable, incomprehensible madness of the past. It has occurred throughout history and into our current generation, taking form as dancing plagues, dissociative possession of nuns, and involuntary twitches of high school girls in New York. Is it something they all ate? Or maybe there is something in the water… How is it that anxiety manifests itself into a dance that spreads among populations?

Fear and distress terrorized populations in Medieval
Europe and made them more prone to psychogenic illness. Certainly it seems there must be more to the story than merely these common denominators, for fear, anguish, stress, and trauma are commonly faced and dealt with sans mass hysteria. But the other factors needed for the exact formula of mass hysteria are difficult to pinpoint. 

Is it the perfect combination of despair, devastation, and distress that manifests itself into a psychosomatic reaction? Does it require a specific threshold of suggestion and susceptibility in our belief and cultural context? The panic and frenzy that overtook groups throughout history is a fascinating and frightening occurrence. Epidemics surged along the Rhine River, taking hundreds as victims to the dancing plague [8].  This affliction of compulsive dancing ran rampant in regions where the population believed dancing to be some sort of sickness or a curse that could be cast upon them. Once they formed the belief that they had caught the dancing disease, or they had been cursed to dance, dance, dance, there was no stopping them. People would dance until muscles were strained; they would even dance to their deaths. In 1374 a plague swept through Germany and France that drove thousands to dance in “agony for days or weeks, screaming of terrible visions and imploring priests and monks to save their souls.” Also, in years to come, people danced for as long as six months, some even dying after breaking “ribs or loins” [7].

Social and Physical Pain on Common Ground

By Guest Contributor Jacob Billings 
Neuroscience Graduate Student 
Emory University

Societal changes, when they occur, coincide with changing outlooks among the populace. Take for example the American Civil Rights movement of the 1960’s. Largely, the motivations corresponding to economic and political enfranchisement for African-Americans and women resulted from changing identities among these groups during the mobilization of all of America’s resources during World War II. Notably, African Americans observed naturally pleasant interactions with European whites during tours of duty in WWII [1]. When returning to the US, it was impossible to allow American racism to continue unchallenged. During that same period, women acquired expertise in a great variety of professions for which they had been refused the opportunity to work [2]. The expectation that women return to a subordinate place in the household was immediately risen against.

In our modern age, the outlooks held by our friends and neighbors are being changed daily by new evidence from neuroscience. Using an arsenal of tools and techniques at colleges and hospitals around the world, including functional magnetic resonance imagers (fMRI) that can peer into our brains as we think and dream [3], the science marshals each facet of lived experience in turn to hold fast to territory mapped onto the physical domains of the central nervous system. The ground acquired during the campaign is that which is lost by ignorance and outmoded tradition.

How should our societies change as a result of new facets of evidence-based understanding, particularly when that evidence grounds lived experience directly to the material and functioning of our nervous systems?

A Social Account of Suffering

50,000 cultured brain cells sit in a petri dish. Through a combination of electronic sensors, software engineering and robotic sculpture, the physiology of the cells interacts with the psychology of some patrons of an art gallery [1]. From this transaction, judgments arise - the audience might report feelings of being watched, of play, or simply of remotely observing an oblivious 'seizure machine.' One particular type of audience member, the Animal Ethicist, might even wonder if we should be worried that the culture of brain cells (as a former animal) might be in pain.

Brain cells, electrodes, and tiny Peter Singer (image from here). 

While in most cases it is fairly straightforward to determine that a human is in pain, when one starts to asks if non-humans (or even humans with severe communication problems, such as locked-in patients) are in pain, it is common to turn to neuroscience for help. The idea is that while mental states (such as pain and suffering) can only be deduced from behavior if the behaviors are 'wired up correctly,' mental states are always (or non-contingently, to borrow the language of Dr. Martha Farah [2]) related to brain states. Thus, the tools of neuroscience can give us direct access to the amount of pain an organism is experiencing, bypassing a body that might hide this information from us (which could happen because of injury, or because the body was never equipped with a human face). We are obligated to perform this scientific investigation, as we have an obligation to prevent pain and suffering.

Pain is something the brain does.  Nociception sends information about tissue damage (1) through the spinal cord, where such information can be modulated (2).  However, pain doesn't really become that nasty, unpleasant experience until it weasels its way into your limbic system (4).  Image retrieved from here.  

Appreciating Neurodiversity: Learning from Synesthesia

By Guest Contributor Katherine Bryant
PhD Candidate, Neuroscience
Emory University

Who are synesthetes?

[Describing the experiences of subject MMo] Eights are yellow, for example, a square feels like mashed potatoes, and the name Steve is somehow like poached eggs. (Cytowic p. 26)

“…I [asked the vendor] what kind of ice cream she had.  ‘Fruit ice cream,’ she said.  But she answered in such a tone that a whole pile of coals, of black cinders, came bursting out of her mouth, and I couldn’t bring myself to buy any ice cream after she’d answered that way…” (Record of patient “S”, Luria p. 82)

Colored alphabet,
via Wikipedia Commons

The unexpected sensory pairings described above are the experiences of a minority of people, perhaps 4% of the population (Simner et al., 2006), known as synesthetes. Synesthesia is a perceptual phenomenon in which unusual linkages occur between sensory modalities – sounds may evoke colors, tastes may evoke shapes, or numbers may evoke spatial patterns – in all, over 40 unique pairings have been documented.  Synesthesia creates problems – it defies normal categories of clinical pathology, and yet is clearly different from what we might call “normal” or neurotypical perception. But examining the phenomenon can help us gain a greater understanding of how synesthetes perceive the world, how others perceive them, and in what ways neuroscience can help us better understand unusual neurological phenotypes – what we might call neurodiversity.

Neuroconservationism: A Neural Pathway to Preservation

Wallace J. Nichols, a marine biologist and environmentalist, has proposed an idea that may galvanize conservation movements based on neuroscientific evidence that suggests our brains deeply crave the ocean. In fact, he launched what he calls a mind-ocean initiative named BLUEMiND, with the hopes of merging the fields of cognitive science and oceanography. The group will be holding its third conference this May to facilitate discussions regarding the burgeoning field of neuroconservationism, with a major focus on exploring the biological basis of our emotional connection with the ocean and the environment.

Your brain on ocean

Being Careful About How We Use Evidence for the "Reality" of Social Pain

Images courtesy of the

Social and Affective Neuroscience Laboratory

at UCLA.

Neuroscience is changing the way we view the brain. It is also changing the way we view ourselves. Discoveries announced in journal web pages one day find themselves as fuel for debate on newspaper op-ed pages the next. Some of these discoveries have practical implications and point toward promising new medical therapies. Others suggest new - and often troubling - approaches for dealing with social or legal problems. Many simply shed new light on long-standing questions about human nature.

Like it or not, the evidence that supports these discoveries turns out to be quite persuasive. Wearing the mantle of science, decorated with images that hint at the workings of the human mind, it commands a special, and perhaps not entirely deserved, authority. This evidence is also subject to being appropriated for purposes beyond that supported by conclusions of the research which gave rise to it. Consequently, we must be careful when we enlist neuroscience evidence in the service of even the best of causes, lest we unwittingly find ourselves endorsing the kind of erroneous thinking that we should be trying to correct.

I will offer two examples - one here and another in a blog post to follow - of what I consider to be incorrect applications of neuroscience evidence to well-intentioned efforts to change public attitudes. I will also point out the fallacies that I believe are at play.

Misophonia: Personality Quirk, Symptom, or Neurological Disorder?

When I first learned about misophonia, it was described as a severe annoyance by certain specific sounds, most commonly bodily sounds such as chewing, breathing and slurping, or repetitive sounds such as ceiling fans, beeping, etc.  A quick Wikipedia search described it as, “a form of decreased sound tolerance… believed to be a neurological disorder characterized by negative experiences resulting only from specific sounds, whether loud or soft.”

Immediately, I had a number of questions: if misophonia is just a hatred of certain sounds that leads to annoyance or anger, how is this classified as a neurological disorder?  Wouldn’t everyone have this disorder to some degree?  Everyone has their pet peeves as far as sound goes; I cannot stand the sound of people chewing, and while it is sometimes very irritating, I would by no means say that I have a neurological disorder.

The Wikipedia entry stated, “Intense anxiety and avoidant behavior may develop, which can lead to decreased socialization. Some people may feel the compulsion to mimic what they hear.”  If everyone has sounds that they hate, but some people get uncontrollably angry or anxious when they hear their hated sounds, then isn’t this disorder a behavioral issue?  I initially had two hypotheses about misophonia: 1) someone who cannot control their behavior in response to certain sounds probably has trouble controlling their behavior in response to other stimuli as well, and therefore misophonia is the side-effect of another neurological or psychiatric disease, not its own one.  And 2) misophonia is one of those “disorders” that just seems like a scheme to sell more drugs to hypochondriacs.  But this was Wikipedia, so I first looked to the DSM-IV to learn more about misophonia.

Hubris and Hope for Engineering Brains

"Living organisms are nothing more than complex biochemical machines." [1]

The above statement, or at least the thought, is something that gets thrown around in biology and especially bioengineering. And it's a very empowering thought: the living thing in front of me is governed by the same physical laws that govern the rest of the universe, including the machines we build.  It doesn't have some sort of supernatural vital force flowing through it, just fats and proteins and DNA and small molecules.  We can use this.  We can fix ourselves when we are sick, we can design new life forms to do our bidding.  It's all very exciting.

We might even go as far as to engineering a brain.  The task would be difficult, but the reward tremendous.  Brains are very good at performing difficult computations that top of the line AI is struggling with, and biological neurons tend to use less resources than their artificial cousins. Building a wet, squishy, thinking machine, designed to perform one specific task and to perform that task very well, would be a great boon to autonomous robots, power grid management, and thousands of other applications. Hey, we've already engineered neural tissue to be part of an art project.

Ionat Zurr and Oron Catts of Symbiotica

However, Ionat Zurr and Oron Catts of the SymbioticA biological art center in Perth, Australia, are quick to bring up the fact that thinking of living systems as machines brings with it a lot of additional baggage. [2] Machines don't get a lot of respect. They are 'tools', 'playthings', to be used without reverence or regard to their own desires or wants.  What could a hammer possibly want?  If somehow it did want something, why should we care?  What could we do to an electrical circuit that could make us feel guilty?  By extension, why should we care about the wants of individual cells, or organs, or even living organisms?

Dare to be different: Defense of the research of sex differences

By Guest Contributor, Emory Neuroscience and Animal Behavior Graduate Student Katy Renfro

In a recent article published in the journal Neuroethics, Dr. Rebecca Jordan-Young and Dr. Raffaella Rumiati argue that current research on sex differences is “both unscientific and far from politically neutral,” and should be abandoned. [6] This article reflects many of the current conversations on the ethical implications of researching sex differences, which have largely focused on how results of these studies can be misappropriated to support sexist agendas. I cannot argue against the legitimacy of these concerns, and as researchers, we must always be careful to present our findings in a balanced and accurate manner so as to better combat misinterpretations and misrepresentations of data. However, we must also keep in mind that just as science has the potential to influence social and political conversations, this is a bidirectional relationship, and politics also have the power to misinform science.

In their paper, Jordan-Young and Rumiati argue that current research on
sex differences is "both unscientific and far from politically neutral." [6]