Should you read more because a neuroscientist said so?

By Lindsey Grubbs



Lindsey Grubbs is a PhD student in the English Department at Emory University, where she is also working on a certificate in bioethics. She holds a master’s degree in English and gender studies from the University of Wyoming. She is interested in the relationship between literature and science, and works with American literature from the nineteenth century until today to interrogate and complicate the boundaries between health and wellness, normalcy and aberrance, and physical and mental complaints.



As neuroscientists begin to approach topics usually falling under the purview of other specialties, how can they ethically incorporate various forms of knowledge rather than provide simplified metrics that will, in a data hungry society, be easier for most to latch onto?



In 2013, we saw the publication of at least two high profile studies claiming neuroscientific proof for the potential moral benefits of reading fiction. Greg Berns and his associates published “Short- and Long-Term Effects of a Novel on Connectivity in the Brain” in Brain Connectivity (Berns, Blaine, Prietula, & Pye, 2013), and David Comer Kidd and Emanuele Castano published “Reading Literary Fiction Improves Theory of Mind” in Science (Kidd & Castano, 2013). The Berns article makes a relatively modest claim: the day after an evening session reading a novel, test subjects had short-term increased brain connectivity in areas of the brain associated with taking perspectives and understanding narratives, and longer-term connectivity that lasted several days in the bilateral somatosensory cortex, which the authors suggest could help explain the mechanism of “embodied semantics,” the idea that there is somatosensory involvement in the processing of language, as when tactile metaphors like “I had a rough day” activate the somatosensory cortex (Lacey, Stilla, & Sathian, 2012). As suggested by its title, the Kidd and Castano piece makes a more dramatic claim: the authors conducted five experiments and write that reading award-winning literary fiction improves subjects’ theory of mind both alone and in comparison to nonfiction or popular bestselling fiction. The reaction to these studies in the press follows the trend of a mania for neuroscientific evidence and colorful images of the brain¹.  Why is it necessary, though, to grant scientific authority more weight as evidence than other forms of knowledge?

Via The Wire

Our society values information that seems objective over that which seems subjective—at times a value that makes sense, but one that is exaggerated in the case of something like responses to literature, which are inherently subjective. Writing for the New York Times, Alissa Quart writes, “The problem isn’t solely that self-appointed scientists often jump to faulty conclusions about neuroscience. It’s also that they are part of a larger cultural tendency, in which neuroscientific explanations eclipse historical, political, economic, literary and journalistic interpretations of experience” (Quart, 2012). The reading studies and the press reactions to them clarify the need for interdisciplinary work that truly engages with, rather than pays lip service to, multiple sources of knowledge—not just scientific protocol, but also generations of thoughtful work in the humanities.



Kidd and Castano’s study highlights the need for truly engaged interdisciplinary work, as it engages with literary topics without full consideration of the dynamics of reading—they perform what ought to be an interdisciplinary study without the necessary expertise, leading to a weaker study compounding the type of media “neurohype” this one received. While Kidd and Castano acknowledge literary theory by employing literary critic Roland Barthes’ differentiation between “readerly” texts, which encourage passive reading, and “writerly” texts, which engage the reader and require them to produce their own meanings (a move demonstrating that they’ve done some homework in literary theory), they use the terms imprecisely (Barthes likely would have classed all of the books in the study as “readerly”—none were “weird” enough to garner a “writerly” diagnosis, which describes text like James Joyce’s Finnegans Wake) and perhaps to the point of inaccuracy. Anyways, the terms originate over forty years ago, and hardly reflect more contemporary, nuanced understandings of how texts engage the reader.



More recent literary theory suggests that the value and substance of a text is not an inherent quality of a work; rather, the meaning of a text is created in the relationship between the reader and the page, both enmeshed in a complex context of race, class, gender, and other factors. By making the claim that “literary fiction” improves theory of mind while “popular fiction” does not—a messy distinction framed as though it were a straightforward one (it seems important to note that the results of Berns’ study—which used a “popular,” not “literary” novel—would suggest that this is wrong, and that reading need not be literary to improve empathy), Kidd and Castano’s study also risks propping up class-based distinctions. Supporting the bias that reading “high-culture” literature, which is undeniably bound up in classed, racialized, and gendered inequalities, is more morally salutary than reading other texts on the basis of one measure is irresponsible, and shows an inadequate engagement with the politics of reading. Despite a brief nod to the class-based distinctions between the two groups, the authors maintain that the notion of “literary value” has “ecological validity” because it can be detected by readers. But it is precisely this ecological validity that changes how the text will be read: we live in a culture that values certain types of writing from certain types of authors (most typically, dead white men), and this value is necessarily historically contingent—not “objective.” Today, we know when we pick up a mystery or sci-fi novel that we are supposed to read it easily, quickly, and probably with a bit of embarrassment. In contrast, when we pick up “serious” literature, we are supposed to engage and work at meaning—which we can easily imagine would impact the neural mechanisms at play.

Via stanford.edu

Incorporating an expert in literary study could have helped the experiment design avoid this problem. Consider the work of Natalie Phillips, an English professor working with neuroscientists and radiologists on a study of the neuroscience of reading and attention. Subjects read Jane Austen in an MRI and alternated between skimming casually and reading closely—revealing that the two types of reading produced very different patterns on the MRI. Her familiarity with literature allowed her to realize that there are not simply different types of texts, but also different types of reading—a key oversight in the Kidd and Castano study. Future research into the relationship between reading and the brain would be more thorough, convincing, and conceptually and ethically sound if it includes humanities scholars, who contribute a different kind of knowledge. Conversely, the growing body of work in the humanities that incorporates a cognitive approach must be vigilant about including science ethically, which is to say scientifically—not “pop-scientifically.”



As neuroscientists become more deeply engaged with social questions, as Berns and Kidd and Castano have done with these recent studies, we will need to begin sorting through a complex series of questions. Julianne Chiaet writes in Scientific American that Kidd and Castano’s study could influence educational programs, prison reform, and the treatment of autism. But how well supported does a scientific claim have to be before we use it to shape policy? Kidd and Castano acknowledge that the research is preliminary, focused on only one of a wide array of possible benefits of reading, and that much research remains—however, that doesn’t stop them from suggesting potential policy implications based on the limited knowledge they propose. They point to the new Common Core State Standards and argue that more fiction ought to be included in the curriculum (at the expense of other subjects of study). Alternatively, what are the implications of “prescribing” reading as a kind of social medication for those deemed pathologically asocial? Writing for Slate, Mark O’Connell expresses concern about looking at reading in a "morally instrumentalist" way. What are the dangers of suggesting that mandated reading programs could “fix” our criminals and children with autism at the expense of broader social reforms that would reduce the incentives to commit crimes or the stigma our culture aims at people with disabilities? Moving forward, tackling these types of questions will require the pooled expertise of those in the sciences and humanities.



¹ Berns uses neuroimaging, while Kidd and Castano use measures of theory of mind like “reading the mind in the eyes” tests.





Bibliography



Berns, G. S., Blaine, K., Prietula, M. J., & Pye, B. E. (2013). Short- and Long-Term Effects of a Novel on Connectivity in the Brain. Brain Connectivity, 3(6), 590–600. doi:10.1089/brain.2013.0166



Chiaet, J. (2013). Novel Finding: Reading Literary Fiction Improves Empathy. Scientific American. Retrieved June 16, 2014, from http://www.scientificamerican.com/article/novel-finding-reading-literary-fiction-improves-empathy/



Kidd, D. C., & Castano, E. (2013). Reading Literary Fiction Improves Theory of Mind. Science, 342(6156), 377–380. doi:10.1126/science.1239918



Lacey, S., Stilla, R., & Sathian, K. (2012). Metaphorically feeling: Comprehending textural metaphors activates somatosensory cortex. Brain and Language, 120(3), 416–421. doi:10.1016/j.bandl.2011.12.016



O’Connell, M. (2013, October 28). 10 Novels to a Better You. Slate. Retrieved from http://www.slate.com/articles/arts/culturebox/2013/10/does_reading_fiction_make_you_a_more_empathic_better_person.2.html



Quart, A. (2012, November 23). Neuroscience: Under Attack. The New York Times. Retrieved from http://www.nytimes.com/2012/11/25/opinion/sunday/neuroscience-under-attack.html



"This is your brain on Jane Austen, and Stanford researchers are taking notes." (2012, September 7). Stanford University. Retrieved June 11, 2014, from http://news.stanford.edu/news/2012/september/austen-reading-fmri-090712.html







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Grubbs, L. (2014). Should you read more because a neuroscientist said so? The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2014/06/should-you-read-more-because.html

Predicting Alzheimer's Disease: Potential Ethical, Legal, and Social Consequences

By Henry T. Greely, J.D.





Henry T. (Hank) Greely is the Deane F. and Kate Edelman Johnson Professor of Law and Professor, by courtesy, of Genetics at Stanford University. He directs the Stanford Center for Law and the Biosciences and the new Stanford Program in Neuroscience and Society  SPINS). He is also a member of the AJOB Neuroscience Editorial Board.



Would you want to know the date and time of your death? Life-Line, the first published fiction by Robert A. Heinlein, one of the giants of 20^th century science fiction, explored that question. The story’s protagonist, Hugo Pinero, had invented a machine that could tell precisely when individuals would die, but, as Pinero found to his distress, he could not intervene to change their fates.



Would you want to know whether you would be diagnosed with Alzheimer disease (AD)? This question is rapidly leaving the realm of science fiction; indeed, it already has for some unlucky people. Our ability to predict who will suffer from this evil (and I chose that word carefully) condition is proceeding on several fronts and may already be coming into clinical use.



This post will briefly note the ways in which AD prediction is advancing and what some of the ethical, legal, and social implications of such an ability would be, before asking “should we care?”

Via the BBC

Science



Several different techniques are providing information about an individual’s risk of being diagnosed with AD, including genetics, biomarkers, and neuroimaging.



Genetics can predict AD with great confidence for about one person in a thousand. People who carry a mutated version of the PS1 gene (or, much more rarely, mutated versions of the PS2 or APP genes) are nearly certain to be diagnosed with AD, unless they die earlier from something else, and with an early onset version that typically strikes in one’s 40s or 50s. People with two copies of the APOe4 allele, about one to two percent of the population, have a very high risk (at least 50 percent, perhaps as high as 80 percent) of being diagnosed with AD in their sixties or seventies. People with one APOe4 allele and one APOe2 or APOe3 allele – that’s about 20 percent of the population – have two or three times the AD risk of people without an APOe4 allele. Other alleles of other genes have also been found to confer higher risk of AD, and some single nucleotide polymorphisms have been associated with higher risk of the disease.



Other researchers have identified biomarkers that are associated with risk of AD, both in the cerebral spinal fluid (CSF) and in the blood serum. Thus far, the CSF methods have looked for levels of the protein beta amyloid (42), which forms plaques on dead and dying neurons of those with AD, and the protein named “tau,” which forms tangles in the bodies of those neurons. Some of the blood work has looked at those biomarkers; others have looked at a range of different proteins in the blood. None of these methods is ready for clinical use; some of the published research has claimed nearly 90 percent accuracy in predicting relatively near-term AD diagnosis.



Recently, the FDA approved a radio ligand that attaches to the amyloid plaque in the brain and allows the existence of amyloid plaque to be seen by positron emission tomography (PET). The approved labeling is for use in diagnosing AD, not in predicting it, but the off-label use doctrine allows doctors to prescribe it for any purpose. Other researchers are trying to find ways to image tau tangles, though currently the only method for detecting them is through a brain biopsy (not an easy technique!). It is also known that magnetic resonance imaging (MRI) scans of brains can see changes in grey matter density in certain parts of the brains of people with AD; efforts are under way to use that method to predict AD diagnoses.



These various methods need not be used in isolation. They could be used together, in an effort to provide greater accuracy than any one test would do on its own. We are only at the beginning of efforts to assess those possibilities.



The FDA has not approved any of these methods (yet) for clinical use in predicting AD and professional groups have recommended against such use. It remains unclear how good any of these methods are alone or in combination, or at what age or ages they are useful. (A genetic cause may be strongly predictive even before birth; amyloid plaque levels may – or may not – be relevant only for people over 60.) Their accuracy might also vary between completely cognitively normal and those showing some minor signs of cognitive problems (which, for many people, would not progress to AD).



Importantly, these methods were not discovered in order to use them for clinical prediction. They are the results of basic research, of efforts to understand the natural history of the disease, in hopes of ultimately finding preventions or treatments. Their first use in humans has been in AD research, stratifying research subjects into high and low risk groups in the hope of making clinical trials faster and cheaper. But nothing prevents a physician from ordering the tests for a worried patient (with money to pay for tests that insurance will not reimburse).

Via Next Avenue 

Effects



Let’s assume that people did begin to get fairly accurate tests for their AD risks. What would follow?



If we had good interventions to prevent or treat the disease, much good might come from such testing, but we don’t (beyond “chicken soup” kinds of recommendations like “exercise”.) So how and why will people use these predictions and what non-medical consequences can we expect?



Some people will use the information for financial planning. A friend of mine is an “elder lawyer,” who spends a good amount of his time in financial planning for the elderly. He says that if we had a test that was 90% accurate, he would urge all of his clients to get such a test so they can plan how to use (and preserve) their assets for their struggle with AD.



On the other hand, some will worry about the effects of getting tested. Being at high risk for AD might lead to all the usual discrimination suspects – employment, health, life, and disability, plus one special one, long term care insurance. The relatively old ages at which AD strikes (except for the roughly 1% of cases that are early onset) mitigate, but do not eliminate, the number of people who would risk employment and health insurance discrimination. Most people will not be employed when they are diagnosed with AD. And, at time of diagnosis (and hence of increased health care costs), most of those affected will be over 65, and thus will have Medicare for health coverage (whatever may happen to Obamacare). Ironically, though, whether GINA, the Genetic Information Non-discrimination Act, protects them will depend on whether their risks were predicted using genetic methods or other methods. (The consequences of the use of mixed methods are not clear.)



A few special cases of possible “employment” discrimination might be noted. Every four years Americans “employ” someone as President. Would the public want to know the AD risks of the candidates? Not too long ago, President Ronald Reagan was diagnosed with AD only a few years after the end of his second term. The public, acting largely through the press, might want AD risk information from future candidates. (Teneille Brown has explored these issues in more depth¹.)



Similarly, sitting presidents may well want that kind of information about candidates for appointment to jobs with life tenure – federal judges, and particularly Supreme Court justices. In 2009, Judge Karen Williams, Chief Judge of the United States Court of Appeals for the Fourth Circuit, retired from the bench at the age of 57 because of early onset AD. All things being equal, presidents want the judges they appoint to sit, and influence the law, for decades after the president’s term is over.



It is not clear that life insurers would care much about AD risk; the disease process is so long that the age at death, though somewhat reduced, may not be change significantly. But private disability insurers should care, as AD patients who are employed at the time of diagnosis may end up claiming on such policies.



And long-term care insurers, should care, a lot. AD patients will often need years of long-term care. The private long-term care market is relatively new and small. It is a policy initiative to try to deal with the upcoming huge cost of long term care for Baby Boomers, care that is not significantly covered by Medicare or private health insurance. If people were able to test for their AD risk and then, if they test positive, buy long-term care insurance on the same terms, the resulting “adverse selection” will cause insurers either to lose money or to raise their rates. Either outcome, in this young and relatively fragile market, could end long-term care insurance. On the other hand, if insurers can take AD risks into account (at least when the customer knows those risks), people at high risk will often find long term care insurance unaffordable, even though – and especially because – they will need it.



But other, less tangible, consequences may follow. Consider the effects on family dynamics. Will the children take away Dad’s car keys sooner if he has been predicted to be at high risk for AD? Will they take away his checkbook, and control over his finances? How will the relationships within the family change when spouses, partners, and children expect an AD diagnosis?



And, of course, what will be the effects on people predicted to be at high risk? They may face depression or other psychological consequences. They might even make plans for suicide.



These issues, of course, are not new – they occur already with an AD diagnosis. But an AD prediction may move the opening point of these concerns forward several years, years that otherwise might not have been clouded by the knowledge, or fear, of AD.



Should We Care?



In a different sense, none of these issues is new. They already exist with fatal diseases that can be confidently predicted, like Huntington disease, as well as fatal diseases once they are diagnosed. But AD is, in some ways, distinctive. Instead of striking one person in 20,000, like Huntington disease, it will strike an estimated 10% to 15% of the population. And its memory, and ultimately personality, destroying characteristics lead to special challenges, as well as, for some people, to special horror. What, if anything, should we do about it? For now, I will make only two suggestions: assurance of the accuracy of the predictions and a requirement for counseling.



The accuracy of the tests, alone and in combination, needs to be assessed carefully, and for people of different sexes, ethnicities, and other possibly relevant possibilities. I believe some kind of public assessment of accuracy, akin to (and possibly including) FDA approval, should be required before the testing is allowed.



Then, both before the test is taken as well as after any positive results are returned, we should require skilled counseling. The first session will help make sure that the individual understands the advantages and risks of taking the test. The second will help high risk people deal with the shock of the prediction – and with its longer-term consequences.



Conclusion



Pinero’s “life predictor” never existed and never will. That would have been good for the fictional Pinero: in the short story thugs paid by life insurance companies murdered him, on the very date his machine had predicted



Widespread, accurate (or even inaccurate) AD prediction is not yet here. It will be soon. As a common, expensive, and severe disease, its predictability will bring some foreseeable challenges, as well, no doubt, as some unforeseeable ones. We need to work to understand, and cope with, those challenges. And we need to start yesterday.





Reference



1) Teneille Brown, Double Helix Double Standards: Private Matters and Public People, J. Hlth Care L. & Pol. 11:295-376 (2008).

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Greely, H. (2014). Predicting Alzheimer Disease: Potential Ethical, Legal, and Social Consequences. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2014/06/predicting-alzheimer-disease-potential.html

June 9th and 10th: President's Commission for the Study of Bioethical Issues at Emory University

The Presidential Commission for the Study of Bioethical Issues is an advisory panel that counsels the President on bioethical issues in light of scientific and medical advances. Most recently, the panel published Gray Matters: Integrative Approaches for Neuroscience, Ethics, and Society as a part of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative. This document touched on relevant ethical issues related to neuroscience and made recommendations for integrating ethics into various facets of neuroscience research, education, and policy making.



On June 9–10, 2014, a public meeting of the President’s Commission for the Study of Bioethical Issues will be taking place at Emory University in the Rollins School of Public Health Building. The complete agenda is listed here, but the Commission will discuss the BRAIN Initiative and current work taking place in the field of neuroscience. Watch the live webcast and follow AJOB Neuroscience on Twitter if you are unable to attend!

http://bioethics.gov/meetings

Brain Imaging and Neurofeedback: Has Fiction Become Reality?

By Carolyn C. Meltzer, MD



Dr. Carolyn C. Meltzer is a professor at the Emory University School of Medicine Departments of Radiology and Imaging Sciences, Psychiatry and Behavioral Sciences, and Neurology. She is also a member of the AJOB Neuroscience Editorial Board.



“Power is in tearing human minds to pieces and putting them together again in new shapes of your own choosing.”

―George Orwell, 1984





In the iconic geopolitical thriller “The Manchurian Candidate,” advanced mind control techniques are used on a Korean War prisoner to turn him into an assassin. As we move into an era in which functional neuroimaging may be applied in ways akin to “mind reading,” such as applied to lie detection and economic choices, this fictional work more closely mimics reality.



Functional neuroimaging tools have helped us to tease out neuronal networks and to better understand how we think and act in health and disease. With the exception of few specific instances of validated clinical use (such as mapping of exquisite cerebral cortex prior to resecting a nearby tumor), most behavioral functional imaging studies require group, rather than individual data.



New research has focused on exploiting brain-computer interfaces that address therapeutic approaches to neurological and psychiatric conditions in individualized care settings. Recording brain activity and using it to modulate behavior or motor activity - or to seek a specific therapeutic outcome - has spawned the field of neurofeedback. Initial applications have used invasive approaches, such as deep brain stimulation in movement disorders and medically intractable depression. More recently, emphasis has turned to non-invasive approaches. Florin and colleagues (2014) demonstrate how real-time magnetoencephalography (MEG) source imaging may modulate the activity of targeted specific brain regions reinforced by visual subject feedback.



There are many ethical issues to explore in the therapeutic setting of neurofeedback, including whether informed consent (autonomy) may be biased by patient desperation and/or unrealistic expectations (Hamani and Moro, 2012). An unanticipated alteration in mood or behavior (and potential alteration of identity) post-treatment may further alter the patient’s decision-making capabilities.



The ethical concerns further escalate as one contemplates current and potential future uses of neurofeedback in which the patient may not consciously consent or even be aware of its use. In a fascinating study by Monti and colleagues (2010), five of 54 brain injury patients in presumed vegetative states were shown to modulate their brain activity (using fMRI) in response to mental imagery tasks. Neurofeedback techniques using imaging signal modulation have already been attempted in conditions with law enforcement implications, such as pedophilia (Renaud et al. 2011) and drug addiction (Carter et al. 2011). Stopczynski, et al present a vision of a world in which a Smartphone Brain Scanner could track (and eventually modulate) a consumer’s emotional responses to product presentation.

Demonstration of a Smartphone Brain Scanner (Stopczynski et al 2014) 

Another avenue of use for neurofeedback is in national security and warfare. The Defense Advanced Research Projects Agency (DARPA) and the Department of Defense have funded neuroscience projects with relevance to deception detection, and enhanced endurance and attention capabilities of soldiers (Tennison and Moreno, 2012).



While most neurofeedback is performed for treatment of a condition, the potential exists for its use to target enhancement of mental function (2007 ethics). While some might argue that this is no different from many accepted therapies such as a cochlear implant or contact lenses, cognitive enhancement may introduce additional concerns of informed consent and the potential for undue social or economic motivators.



The BRAIN Initiative (Brain Research through Advancing Innovative Neurotechnologies), launched by President Obama on April 1, 2013 and developed by the National Institutes of Health, is a multi-decade effort to “revolutionize our understanding of the human brain.” Given the promise of further acceleration of innovation in neurofeedback tools, scientists, physicians, and policy makers need to be ready to ensure their ethical use.





References



Florin E, Bock E, Bailet S. Targeted reinforcement of neural oscillatory activity with real-time neuroimaging feedback. Neuroimage 2014;88:54-60.



Hamani C, Moro E. Emerging Horizons in Neuromodulation: New Frontiers in Brain and Spine Stimulation. International Review of Neurobiology. Academic Press 2012.



Monti M, Vanhaudenhuyse A, Coleman MR, Boly M, Pickard JD, Tshibanda L, Owen AM, Laureys S. Willful Modulation of Brain Activity in Disorders of Consciousness. N Engl J Med 2010; 362:579-589.



Renaud P, Joyal C, Stoleru S, Goyette M, Weiskopf N, Birbaumer N. Real-time functional magnetic imaging-brain-computer interface and virtual reality promising tools for the treatment of pedophilia. Progress in Brain Research 2011; 192:263-272.



Ethical and Legal Aspects of Neuromodulation: on the Road to Guidelines. Neuromodulation: Technology at the Neural Interface, 2007;10: 177–186.



Tennison M, Moreno JD. Neuroscience, Ethics, and National Security: The State of the Art. PLoS Biol. Mar 2012;10(3): e1001289.



Carter A, Bell E, Racine E, Hall W. Ethical Issues Raised by Proposals to Treat Addiction Using Deep Brain Stimulation. Neuroethics 2011;4:129-142.



Stopczynski A, Stahlhut C, Petersen MK, Larsen JE, Jensen CF, Ivanova MG, Andersen TS, Hansen LK. Smartphones as pocketable labs: Visions for mobile brain imaging and neurofeedback. International Journal of Psychophysiology 2014;91:54-66.





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Meltzer, C. (2014). Brain Imaging and Neurofeedback: Has Fiction Become Reality? The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2014/05/brain-imaging-and-neurofeedback-has.html