Pages

Tuesday, December 27, 2016

Is memory enhancement right around the corner?


By Ryan Purcell




“Everyone has had the experience of struggling to remember long lists of items or complicated directions to get somewhere,” Dr. Justin Sanchez of DARPA said in a recent press release. “Today we are discovering how implantable neurotechnologies can facilitate the brain’s performance of these functions.” The US Department of Defense is interested in how the brain forms memories because hundreds of thousands of soldiers – or “warfighters” as they are now called – have suffered from traumatic brain injury (TBI) and some have severe memory problems. Beyond the military, TBI is a major public health concern that affects millions of Americans as patients and caregivers and is incredibly expensive. A breakthrough treatment is needed and for that, ambitious research is required.





But does this research agenda end at treating disease, or could these findings also be applied to memory enhancement goals?





Beyond helping us to grab all the items on the grocery list and find the car in the parking lot, our memories fundamentally help us to form our sense of identity and personal narrative. It is a common observation in profound dementias and Alzheimer’s disease, that family members feel like their loved one who has lost the ability to recall recent events or names or to form new memories is no longer the same person they once were. While this basic truth about the importance of memory is persuasive as an argument for the significance of this research, it also brings the risks involved sharply into focus: tinkering with an individual’s memories and their ability to form them can have the effect of profoundly altering their identity and sense of self.




In the past, DARPA has been very open about its goals for human enhancement so it is fair to consider the development of memory enhancement as a possible, if not likely, outcome of this research. The umbrella program at DARPA, called RAM for Restoring Active Memory (and invoking the term for computer memory) is what Dr. Sanchez was commenting on in the opening lines of this post. Examples of RAM projects can be found here and here and the stated goal of the project is to develop an implantable (i.e. inside-the-skull) device that can restore an individual’s memory abilities. This is notable because to the public, restoring impaired memory and enhancing memory function are seen as very different aims. In a recent Pew Research survey, 67% of US adults taking part in the study felt that a device that enhances ability far beyond that of any human known to date is taking technology too far and 69% are worried about technology like this.




An improved, sharper, more reliable memory would be a useful improvement, right? If you give me the option between two computers and one has a much better memory, that one will always be my choice. The reality for human beings is probably not so simple. Consider Jill Price, one of only a few people in the world known to have Highly Superior Autobiographical Memory (HSAM). In the original description of her case, Price seems surprisingly ordinary in many ways. She earned mediocre grades in school and worked off and on as an office assistant after college. However, her autobiographical memory is astounding. Name a date after 1974 and she can tell you what day of the week it was, what she did that day, if any notable public events occurred on that date, and what the weather was like. Most of us would struggle to recount what we did on any given day last month, let alone decades ago. It is surprising, then, that her incredible memory did not make her extraordinarily successful in school or her career and, in fact, she described her memory as being rather burdensome, preventing her from letting anything go. After Price’s case became known to researchers, others came forward to be studied as well. After thoroughly vetting the volunteers, and studying the most likely HSAM cases, researchers concluded that these extraordinary autobiographical memory abilities were not paired with a more generalized genius or even improved memory in other areas. These cases highlight the critical balance between remembering and forgetting that probably goes a long way in helping us get through our daily lives.




We also know from nonhuman animal studies that enhanced memory does not always lead to positive outcomes. At brain synapses, NMDA receptors are critical mediators of neuroplasticity. Genetically increasing the expression of a subunit of the NMDA receptor, NR2B, in mice improved the animals’ learning and memory across multiple paradigms. However, further testing demonstrated that these animals were also were more sensitive to some painful stimuli, highlighting the possibility that it may be difficult to selectively augment one neural process in a purely positive way. This, however, is just one example of a memory enhancement study. Additional studies in rodents have found that spatial memory can be enhanced by stimulating the entorhinal cortex and some of the negative effects of TBI on learning and memory can be ameliorated with stimulation of the medial septal nucleus, an input to the hippocampus. Patients suffering from intractable epilepsy have made an enormous contribution to neuroscience for several decades by volunteering for intracranial cortical and deep brain stimulation studies. Evidence from human studies is now emerging to suggest that stimulation of memory structures and pathways in the medial temporal lobe can also enhance certain types of memory.




If an intracranial memory-enhancing device is developed in the near future, who should get it (and who would get to make that call)? To me, the risk benefit calculation is much easier than a similar one on cognitive enhancing pills. Opening up the skull is a rather significant barrier that will likely keep all but those who need it the most from considering such an intervention for enhancement (versus therapeutic purposes). Regarding enhancement, if soldiers were to receive implanted devices aimed at improving their performance in combat, what happens when their tour of duty is completed, or when they retire? Moreover, during initial testing of any devices in healthy subjects, there are significant and unique consent issues in the military due to power imbalances between officers and subordinates. Even in relatively recent history, there have been serious problems in human subjects research in the military, which have come to light as documents are de-classified.





There are other, non-invasive neurotechnologies also in development that have been discussed here and elsewhere before and it’s likely that the technology will only become less invasive, smaller and, like everything else, wireless in the near future. In addition to helping TBI patients recover memory abilities, DARPA’s warfighter enhancement goals probably center around improving memory under combat conditions of extreme stress and fatigue, factors that can obviously impair memory performance. “Military personnel carry a growing responsibility to recount, report and act upon knowledge gleaned from previous experiences, and how well those experiences are recalled can make all the difference in how well these individuals perform in combat and other challenging situations,” Dr. Sanchez explained in a recent press release on the program. Human errors were blamed for the deadly US airstrike on a Doctors Without Borders hospital in Afghanistan last year that claimed 42 lives. Clearly, there are also potential costs for not pursuing enhancement technology.





Military personnel are not the only professionals who need to perform at a high level under difficult conditions. Could surgeons and airline pilots also benefit from memory enhancing technology? These examples are often invoked in enhancement discussions because this type of work impacts other people’s lives and mistakes can be fatal. Therefore, technology that the military finds to be useful will likely have applications elsewhere in society. Consider another DARPA project, the Internet. Also as the technologies are improved (smaller, less invasive, more affordable), it’s likely that there will be a nontrivial consumer market.





Other DARPA-funded neuroscience research has also been discussed previously on this Blog. That time, the researcher was studying the way the brain interprets narrative storytelling and seemed genuinely uneasy about the possibilities for advanced (neuro)propaganda coming from his work. Here, there is a clear potential medical benefit to a group of people who currently have a dearth of treatment options. Nonetheless, the synopsis from DARPA’s own PR team is as follows:





“The study aims to give researchers the ability to “read” the neural processes involved in memory formation and retrieval, and even predict when a volunteer is about to make an error in recall. The implanted electrodes also provide a means of sending signals to specific groups of neurons, with the goal of influencing the accuracy of recall.”





I, for one, am not overly thrilled about the idea of government scientists “influencing the accuracy of [my] recall” but maybe I just went a bit overboard with Stranger Things. To be clear, understanding the neural signatures of memory encoding, and how that process goes awry after brain injury, is fundamentally important work for basic and clinical neuroscience. Yet as memory enhancement research moves forward, it will be important to continue to keep neuroethics in mind which, surprisingly, is not the norm. A recent review article of the field never once even gives a nod to current or future ethical concerns. Given the fundamental link between memory and identity, research in this area should proceed with consideration of potential nonphysical harms of memory interventions. Finally, as noted above, the Internet as we know it today is in large part thanks to DARPA research, which is a bit ironic because now, with the Internet at our fingertips, who needs to remember anything anymore?




Want to cite this post?



Purcell, R. (2016). Is memory enhancement right around the corner? The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/12/is-memory-enhancement-right-around.html


Tuesday, December 13, 2016

Meet Tomorrow's World: A Meeting on the Ethics of Emerging Technologies



By Marcello Ienca





Marcello Ienca, M.Sc., M.A., is a PhD candidate and research assistant at the Institute for Biomedical Ethics, University of Basel, Switzerland. His current projects include the assessment of intelligent assistive technologies for people with dementia and other neurocognitive disabilities, the regulation of pervasive neurotechnology, and the neurosecurity of human-machine interfaces. He is the chair of the Student/Postdoc Committee of the International Neuroethics Society and the current coordinator of the Swiss Network for Neuroscience, Ethics and Law.






Technology is rapidly reshaping the world we live in. In the past few decades, mankind has not significantly changed biologically, but human societies have undergone continuous and unprecedented developments through technological innovation. Today, most human activities—from messaging to geolocation, from financial transactions to medical therapies— are computer-mediated. In the next decades, the quantity and variety of activities mediated by digital technology is bound to increase exponentially. In parallel, with advancements in artificial intelligence (AI), robotics and microcomputing, the friction between man and machine is set to vanish and the boundaries at the human-machine interface are bound to blur. In an attempt to anticipate our technological futures as well as their impact on our societies and our systems of values, the International Neuroethics Society (jointly with the Temporal Dynamics of Learning Center, the Science Collaboratory of the University of California, San Diego, and the National Science Foundation) sponsored a public event on the Ethics of Emerging Technologies as part of the 2016 annual INS meeting in San Diego, California. The event was organized by INS President Judy Illes, INS Executive Director Karen Graham, Dr. Rachel Wurzman of the INS Public Session Program Committee and Prof. Andrea Chiba, Dr. Roger Bingham and Prof. Deborah Forster of UCSD. A panel of international experts in various areas of science and ethics gathered in San Diego on November 9 to discuss various critical issues emerging at the human-machine interface with possible disruptive implications for ethics and society. The first perspective was provided by Dr. William D. Casebeer, career intelligence analyst and Lieutenant Colonel in the US Air Force. His short talk proposed an interesting analogy between pervasive technology and the art of storytelling to show how technology could be actually used, in the near future, to raise empathy, deliver personalized experiences and facilitate human interaction.







Image courtesy of Wikimedia Commons

The second talk, delivered by Dr. Kate Darling, research specialist at the MIT Media Lab, focused on the near-term effects of robotic technology, with a particular interest in their legal, social, and ethical issues. Her analysis took a first step from the common observation that people often treat robots like they are alive, despite consciously knowing that they are not living beings in any significant sense. A paradigmatic example is the confirmed report of soldiers having held funerals for fallen robots. The reason for that, Darling argued, presumably stems from the fact that robots embody physicality and movement, two qualities that are essential to animated beings. This phenomenon shows that robots can also be effectively used for supporting empathic activities such as therapy, assistance and social interaction. However, Dr. Darling also anticipated possible risks associated with robotics-assisted activities, in particular the risk that such engaging technologies may become manipulative technologies. This risk appears particularly relevant in the context of using anthropomorphic, or at least animalomorphic, assistive robotics for people with neurocognitive disabilities, including Paro and iCat. Due to their cognitive impairments, users of these technologies may lack the capacity to discern the robotic nature of these devices, and hence fail to draw the line between the biophysical and in-silico world.





Similar risks of physical-digital conflation were addressed at a deeper neurobiological level by Prof. Mayank Mehta, lab head at the W. M. Keck Center for Neurophysics at University of California, Los Angeles. His research results showed that a brain region involved in spatial learning produces a pattern of activity when it processes virtual reality (VR) that is completely different than the pattern of activity produced when it processes activity in the real world. In particular, more than half of all neurons in the space mapping brain region shut down when processing VR and the remaining maps are scrambled. In addition to space mapping, this part of the brain is crucial for many forms of learning and is directly involved in several neurological diseases invluding Alzheimer's disease, epilepsy, post-traumtic stress disorder (PTSD) and depression. Mehta's research has also shown that this part of the brain is very plastic, even in adults and seniors, suggesting that abnormal activity patterns in VR could potentially rewire this part of the brain. As the use of VR is rapidly becoming pervasive for communication and entertainment purposes, Mehta emphasized the urgent need of understanding the long-term consequences of VR use on this improtant and delicate part of the brain.



VR and assistive robotics not only raise the risk of eroding our awareness of the physical-digital distinction, but raise privacy and identity concerns, too. In fact, emerging technologies can also be used to collect personal data and even influence a person’s behavior. These privacy risks were well exemplified by Jay Giedd, Professor of Psychiatry at the University of California, San Diego. He introduced the notion of “penetration technology” to refer to the phenomenon where technology advances faster than society can adapt in terms of governance and regulation. For example, he reported that the number of events in which people participate on Facebook was demonstrated to be a good predictor of depression. However, he observed that conducting big-data research on large volumes of publicly available information on social media opens up fundamental research ethics dilemmas. In particular, there is an ethical issue of privacy and confidentiality: is a person’s informational privacy respected if researchers mine data from his or her social media profile without explicit authorization? On the one hand, the answer to this question seems to be affirmative because that information was posted publicly by the user and after acceptance of the social media’s terms and conditions. On the other hand, however, no explicit request for the acquisition of informed consent was advanced by the researchers. In parallel, neuroscientist and entrepreneur Vivienne Ming emphasized the positive dimension of such big-data trends: although collecting large volumes of data for research purposes may be questionable from a privacy perspective, it can also be extremely beneficial for science and society. Going back to Giedd’s example, the application of predictive analytics techniques to large volumes of social media data might predict depression or a manic episode, possibly saving lives that could not be saved otherwise.








Image courtesy of Jisc

These critical ethical questions were further analyzed in depth by Dr. Hannah Maslen and Prof. Julian Savulescu of the University of Oxford. Dr. Maslen called for an open debate on determining the principles that should govern the use of health technology in educational contexts. She introduced the idea of a child’s “right to future openness” to emphasize the duty of parents to keep a sufficient number of options open for their children. Moving from the educational context to a larger societal perspective, Prof. Savulescu underlined the role of human morality in enabling social interaction within groups. From his perspective, technology can be coopted as an efficient tool to achieve these prosocial goals, particularly if it is used to provide cognitive and moral enhancement both at the individual and collective level. Such enhancement, however, may cause structural transformations to critical aspects of our modern societies, including the political dimension.





On the whole, all panelists were optimistic about future advancements in technological innovation and dissemination. However, they called for a cooperative effort to anticipate the ethical and social implications of emerging technologies and to open a public debate on these issues. This debate has been successfully initiated with the Meeting on the Ethics of Emerging Technologies. It is now up to all of us to shape the technological future we want to live in.








Want to cite this post?




Ienca, M. (2016). Meet Tomorrow's World: A Meeting on the Ethics of Emerging Technologies. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/12/meet-tomorrows-worlda-meeting-on-ethics.html




Tuesday, December 6, 2016

"Inflammation might be causing depression": Stigma of mental illness, reductionism, and (mis-)representations of science


by Katie Givens Kime







Image courtesy of Flickr

Is depression a Kind of Allergic Reaction?” Provocative headlines like these appear throughout popular media. Besides misrepresenting scientific findings, such journalistic coverage impacts perceptions of mental illness, as well as expectations of those seeking treatment. In last month’s Neuroethics in the News talk, Dr. Jennifer Felger, from Emory’s Department of Psychiatry and Behavioral Sciences, shared her experiences and insights on the translation (and mistranslation) of research by journalists. In relating the story of her own interactions with the media, Felger emphasized the complex and varying transactional relationships between journalists and scientists. The impact of such coverage carries notable neuroethical dimensions, potentially affecting the capacity for agency and/or aspects of a sense of self for a person experiencing mental illness.





The work of Felger and others on the role of inflammation in depression emerges from widespread observations that stress and other psychological experiences, particularly chronic stress, can weaken immune responses, leaving individuals more susceptible to illness. Such vulnerability can lead to common illnesses, like colds and flus, or even contribute to major illnesses, like cardiovascular disease, cancer, and inflammatory illnesses. On the other hand, once the immune system is activated by disease, stress, trauma, or even treatments for medical illness (e.g. chemotherapy), activated immune cells can release inflammatory mediators like cytokines. These mediators, along with the immune cells, can move into the brain, affecting neurotransmitter function, leading to behavioral changes, and even causing clinical depression.







Image courtesy of GetStencil.com 

The particular area of research for Felger and some of her colleagues involved examining the mechanisms of cytokine action on the brain, and determining how cytokine action can lead to specific depressive symptom clusters. Felger’s findings suggest that for patients with increased inflammation (including patients with depression), anti-inflammatory or pro-dopaminergic treatment strategies might target decreased corticostriatal connectivity and improve motivational and motor deficits.





In essence, Felger and her colleagues found evidence that suggests a higher level of inflammation increases the likelihood of depression. Furthermore, patients with depression who have higher levels of inflammation may experience different symptoms of depression, which are related relate to the effects of inflammation on the brain. Publication of these findings led to articles in news outlets, for example, “Inflammation may be causing depression in about one-third of patients?” Although such articles did emphasize that depression is a heterogeneous disorder with wide variations in symptoms, they often oversimplified the nuances of Felger’s research regarding the relationship between inflammation and depression. More importantly, in this particular article, unpublished observations on the frequency of depressed patients with increased inflammation, which is highly sample and study- specific, was emphasized without attention to supporting scientific literature. Promotion of oversimplified and preliminary statements by the media can bias interpretation of the findings by other scientists, health providers, and the general public alike.





During her talk, Felger shared how her recent experience with the media has changed the way in which she considers framing and phrasing her research for scientific journals. She suggested that it can be helpful to anticipate the types of quotes the press will use. Having a rough sense of the terms that journalists are likely to grab can preclude some misrepresentations, reductionisms, and reinforced stigmas of mental illness by the media. Knowing the sort of coverage a journalist is seeking is important to help a researcher determine how they should best respond. Felger noted that a piece seeking to narrate the “general movement in the field” is much harder to write well than a piece focused on a singular study or set of findings. With more general overviews, cherry-picking of particular findings or implications is more likely to happen, resulting in higher incidences of misrepresentations.





Another helpful strategy that Felger highlighted is utilizing institutional resources for communicating research. In Felger’s case, working with Emory’s Woodruff Health Sciences Center (WHSC) Office of Research Communications was highly productive. A staff member from that office collaborated with Felger on a press release, headlined “Inflammation linked to weakened reward circuits in depression.” Despite using such institutional resources, Felger is clear that she and her colleagues have no foolproof way to avoid misrepresentations of their research findings.





Fortunately, some journalists are aware of their responsibility to represent research findings accurately. In Felger’s case, some journalists shared drafts of their story before they went to press, seeking a back-and-forth collaboration to ensure ethical reporting. For example a recent article from Oprah.com in which Dr. Felger was interviewed, “Is this why you feel bad? 6 issues tied to inflammation.





In Felger’s experience, emails and messages to her from members of the general public also highlighted the stakes of these matters. In the changing terrain of health information, clinicians and researchers face the inevitable complexity that most patients search the internet for information about their symptoms or diagnoses. Moreover, patients will directly contact the researchers themselves. Felger noted the difficulty and importance of crafting ethically appropriate responses when members of the public sought interaction with her on her research. Such a situation is even more ethically fraught when the researcher is an investigator and not a physician — in such cases, researchers must work with physicians to construct ethically responsible responses.








Image courtesy of Wikimedia Commons

One example of the stakes of these issues is a piece published by the BBC about three months ago: “Depression: A revolution in treatment?” The article is a relatively standard representation of how the media has covered the topic of links between depression and inflammation, though it is hardly the biggest culprit in terms of misrepresentation or distortion of research findings. Notably, the text of the piece is interrupted with a quiz titled “Could I be depressed?” and a first question, “In the last two weeks: How often have you been bothered by having little interest or pleasure in doing things?” Such interactive features are quite obvious indicators of the readership for such media pieces, and the dangers involved. The disclaimer on the quiz echoes these concerns, “If you are having trouble understanding any of these questions, or at any point you start to feel distressed, please stop and seek the advice of a medical professional. See the links below for organisations that may be able to help you.” Though such disclaimers are included, is it appropriate to be encouraging self-diagnosis through such features?





The neuroethical dimensions to these matters extend beyond clinically and ethically appropriate communications with individual members of the public, however. Perhaps the most pronounced neuroethical matters at stake are the reinforcement of stigmas and the prioritizing of biological etiology. Felger shared her experience of the rapacious hunger for biological explanations of mental illness. She received message after message from people thanking her for “finding the answer” to their depression. Similarly, in the BBC article, an individual diagnosed with severe depression is quoted as saying, “If there was a way to say depression was a physical problem, I think it would make a massive difference, I think people would treat depression as something that is not made up and going on in the head. It would be seen as a genuine condition, it would validate a lot of people's feelings.” It is a summation of how the media’s portrayal of the connection between inflammation and depression not only implies a mechanistic solution to mental illness, but also reinforces the message that biological explanations (rather than lifting of stigma) is the way for an individual suffering mental illness to be released from blame for their illness.





The current trajectories of neuroscientific research suggest we are likely to see more and more exciting and important findings emerge as to the embodied, biological aspects of mental illness. It does not inevitably follow, however, that such findings must be interpreted and communicated in ways that split the nature of mental illness into a false binary that equates biological etiologies with release from blame, and equates psychological etiologies with blame-worthiness. Felger noted how public discourse about mental illness in the U.S. (as well as BRAIN projects on a national level) remains stuck in outdated debates about biological explanations for mental illness.





Moving forward, an important role for neuroethics is watching for how research findings communicated in the popular media contribute, for good or for ill, to the ways in which individuals understand and relate to their own health, in all its complexities.




Want to cite this post?



Kime, KG. (2016). "Inflammation might be causing depression:" Stigma of mental illness, reductionism, and (mis-)representations of science. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/12/inflammation-might-be-causing.html

Tuesday, November 29, 2016

"American Horror Story" in Real Life: Understanding Racialized Views of Mental Illness and Stigma


By Sunidhi Ramesh






Racial and ethnic discrimination have taken various forms in the

United States since its formation as a nation. The sign in the image

reads: "Deport all Iranians. Get the hell out of my country."

Image courtesy of Wikipedia.


From 245 years of slavery to indirect racism in police sanctioning and force, minority belittlement has remained rampant in American society (1). There is no doubt that this history has left minorities in the United States with a differential understanding of what it means to be American and, more importantly, what it means to be an individual in a larger humankind.



Generally, our day-to-day experiences shape the values, beliefs, and attitudes that allow us to navigate the real world (2). And so, with regards to minorities, consistent exposure to these subjective experiences (of belittlement and discrimination, for example) can begin to shape subjective perceptions that, in turn, can mold larger perspectives and viewpoints.





Last spring, I conducted a project for a class to address the reception (3) of white and non-white, or persons of color (POC), students to part of an episode from American Horror Story: Freak Show. The video I asked them to watch portrays a mentally incapacitated woman, Pepper, who is wrongfully framed for the murder of her sister’s child. The character’s blatant scapegoating is shocking not only for the lack of humanity it portrays but also for the reality of being a human being in society while not being viewed as human.





Although the episode remains to be somewhat of an exaggeration, the opinions of the interview respondents in my project ultimately suggested that there exists a racial basis of perceiving the mental disabilities of Pepper—a racial basis that may indeed be deeply rooted in the racial history of the United States.








The premise behind my project was the understanding that past experience informs perception. What, then, are the different circumstances (in regards to mental illness/disabilities) that white and POC Americans are facing? Current public health research suggests that there exist racial differences in the field of mental health.






In 2010, for example, researchers at the University of Pittsburgh found that internalized stigma among African Americans had a direct relationship with attitudes towards their mental heath treatment (4); in general, African Americans in this study reported more negative attitudes toward mental health treatment, and, as compared to their white counterparts, African Americans were less likely to seek out mental health treatment and were more likely to hold negative views about themselves if they were diagnosed with a mental illness (4).





Another study conducted in 2012 validates these results, finding that African Americans are significantly less likely than other race-ethnic groups to have received mental health services (5); although the article begins to tie this trend to education differences among the different racial groups, a definitive explanation for the relationship between race-ethnicity and the receipt of mental health services could not be found (5).





Beyond studies regarding the specific treatment of mental illness is research that questions the root of mental illnesses such as depression; one such study found a “clear, direct” relationship between perceived discrimination (which arises from “formative social experiences”) and symptoms of depression in Mexican-origin adults in California (6).





The conclusions drawn in these studies as well as those in other similar research imply that mental illness does not stand on its own; it, in fact, is a factor that is intertwined (rather strongly) with race as well as elements that underlie race such as discrimination and education.





Because the subjective experiences faced by minorities formulate differential understandings and subjective perspectives, these perspectives (according to these studies) can then go on to create different attitudes towards mental health. Ultimately, this cascade can form bigger more personal feelings such as internalized and public stigma.





With this comes a question: what if the differences in the way POC and White Americans are treated (either for mental illnesses or in general) manifest themselves in how different racial groups perceive mental health?







A photo of a freak show exhibition, taken around 1941. The 

sign at the top reads: "Human Freaks Alive." 

Image courtesy of Wikimedia Commons.


Before getting into my project, I must mention that Pepper, throughout American Horror Story, is part of a “freak show”—a term that the dictionary defines as “a display of people with unusual or grotesque physical features as at a circus or a carnival show."As I was watching the show for the first time a few years ago, I was appalled at how it presented the reactions of people who interacted with the “freaks.” There was shock, amusement, fear, and even a sense of superiority. In one scene, the circus actors went out to a diner and were immediately kicked out on the grounds of “disturbing and scaring the other customers.” More often than not, the families who attended the circus would disrespect and taunt the performers.





I later realized that this scene illuminated the major difference between physical disability and mental illness. Physical disability can be seen; it is outward and apparent to a point where it can be identified and acknowledged as easily as it can be mocked and ridiculed.





Mental illness cannot. It is invisible, an uninvited guest that only the patient can feel, describe, and identify. It is silent. Quiet. Unseen. (This distinction regarding mental illness is why hundreds of articles with titles such as “I Don’t Believe in Mental Illness” and “9 Signs Why Your Mental Illness is Made Up for Attention” plague the Internet.)





People who bear mental illnesses are told that their symptoms are not real, that “laziness explains 100% of mental disorders,” or simply that their illnesses “does not exist.” These kinds of perceptions build up and begin to create stigma around mental illness.





Statistically, three out of four people who experience mental illness today have reported experiencing stigma. This stigma leads to feelings of shame, hopelessness, distress and misrepresentation in media. It discourages patients from seeking necessary help. It frames mental illness as a shameful blemish and weakness.





And in many cases, stigma and discrimination come hand in hand; often, those with mental illnesses and disabilities are denied employment, housing, insurance coverage and general social interactions such as friendship and marriage (7).





Worst of all, this very stigma throws mental health patients into a dangerous cycle of social isolation and harm.





According to a 2002 research paper written by Allison J. Gray, “Discrimination alters how patients see themselves, their self worth and their future place in the world. The immediate psychological effects of a psychiatric diagnosis include disbelief, shame, terror, grief, and anger” (8). She then argues that these patients eventually face social isolation, which directly leads to high rates of self-harm and suicide.





So, how and where do we go from here? Can we work toward destigmatizing mental illness?





Or is this a lost cause? Could the racial discrepancy between perceiving disabilities be too deeply rooted to change how these conditions are perceived? And where does this racial difference come from?





For this small preliminary class project, I asked ten respondents (five white and five POC) to watch the aforementioned 30-minute clip. This episode covers the experiences of a young woman, Pepper, who suffers from microcephaly, a rare neurological condition “in which the brain does not develop properly, resulting in a smaller than normal head” as well as intellectual disability, poor speech abilities, and abnormal facial features. In the clip, Pepper is introduced into the care of her older sister and her brother-in-law, a couple that later gives birth to a deformed child. Although Pepper cares for and loves the child as her own, her caretakers appear to be overtaken by “the burden” of having to deal with two individuals who are unable to fully look after themselves. In response, Pepper’s brother-in-law (with permission from his wife) murders the infant and places the blame on Pepper, who is unable to speak for herself but seemingly unaware of the injustice done to her. At the end of the clip, Pepper is placed in an insane asylum, forced to live there due to her supposed involvement in the brutal murder of her sister’s child.




A comparison between head sizes for a child with microcephaly

and a normal child. This change in head shape is often attributed

to abnormal brain development. Image courtesy of Wikimedia 

Commons.





Following the viewing, I asked each respondent seven questions regarding their overall feelings as well as what characters and parts of the plotline resonated with them the most. In the end, I found three general categories of responses—each of which was clearly divided racially.





The most striking of these categories was, by far, how the white and POC respondents referred to Pepper’s microcephaly. I should preface with the fact that the episode never directly labeled her condition, and Pepper’s mental and physical statuses were not referred to as a disability in the scenes the respondents viewed. Still, every white interviewee spoke of Pepper’s condition as a “disability”—a handicap that allowed her to be bullied by her family and the justice system. These students seemed to dwell on the idea that Pepper was subordinated in the minds of those around her. To them, she was bullied for and handicapped by her mental state.





The POC respondents, on the other hand, did not use the words “disability” or “handicap.” Instead, they speak of her as an “outsider,” a deviation from what it means to be “normal.” This word, “normal,” was raised by every POC respondent. These students chose to discuss Pepper’s experiences in light of their own by drawing parallels between what it means to be a functioning, “normal” member of this society and the consequences of being the opposite, when an individual deviates from those norms (discrimination and outcasting).





Although these data are just preliminary, the implications, if these results held true with a larger pool or participants, are tremendous. At the least, these outcomes suggest that human perceptions of mentally and physically compromised individuals are racially based— that there may exist a socially constructed phenomenon for why white respondents viewed Pepper as “disabled” and POC respondents saw her as simply “not normal.”





If anything, the tendency for the POC individuals in my interviews to focus more on the aspects of being “normal” (rather than being discriminated) suggests something about the more personal aspects of the minority experience. It is possible that this theme was so salient because the question asked for the interviewees to relate the clip to their own personal lives (9); perhaps the notion of mental disabilities is not as prominent to these POC individuals as it may have been to the white respondents (as was suggested by the public health studies on POC Americans and mental health). Again, the validity of this statement should be explored through further research.







Schlitzie (born Schlitze Surtees) was an American 

sideshow performer; Pepper's appearance and 

story are said to be based on Schlitzie's life.

Image courtesy of Wikipedia.


Whatever the case, the answers to these questions are not clear. They may never be clear or easy to address—unless we are somehow able to pinpoint exactly where these entangled differential perceptions stem from or whether or not they can be changed. What can change, however, is the stigma around mental illness.





If the relationship between subjective experience, differential understanding, subjective perception, different mental health treatment and attitudes, and stigma exists, can we tap into breaking the cycle? Can we try to change mental health treatment by better educating our doctors and mental health professionals? Can we change mental health attitudes by better explaining conditions to patients or the general public? Would changes in the initial subjective experience (reducing discrimination, for example) reduce mental health stigma down the line?





And would this stigma be alleviated with more evidence for a biological basis to mental illness? Possibly (10, 11, 12).





But this would require research as well—research that is deliberately designed to avoid reinforcing negative stereotypes. In other words, while bias is inherent to some degree in all research, specific biases such as gender and racial bias need to be consciously monitored in this research to avoid being implicitly implemented into the research process.



How can this be done? The Journal of European Psychology suggests engaging in introspection to acknowledge any biases before the research is conducted, including different types of people and viewpoints on the research team, standardizing procedures for data collection and checking for statistical significance—all while being aware of the errors and omissions that may be embedded in the research itself. Maybe, with these cautions in mind, we can work towards more direct, objective research that can lead to the lessening of stigma (especially towards specific races) around mental illness.





Until then, we must begin to realize that perception of mental illness is not black and white; it is socially directed, differentially interpreted, and variably understood. More importantly, it is profoundly engrained in experience and identity.





This understanding needs to come first.





Perhaps then we can begin to unravel the answers to the bigger questions we have.





Note: The students in my project were asked to watch two segments from Episode 10 of Season 4 of American Horror Story: 1) 31:53 to 37:20 and 2) 38:41 to 49:00.





References 



1) Piazza, James A. "Types of minority discrimination and terrorism." Conflict Management and Peace Science 29.5 (2012): 521-546.



2) Rokeach, Milton. The nature of human values. Vol. 438. New York: Free press, 1973.



3) Shively, JoEllen. "Cowboys and Indians: Perceptions of western films among American Indians and Anglos." American Sociological Review (1992): 725-734.



4) Brown, Charlotte, et al. "Depression stigma, race, and treatment seeking behavior and attitudes." Journal of community psychology 38.3 (2010): 350-368.



5) Broman, Clifford L. "Race differences in the receipt of mental health services among young adults." Psychological Services 9.1 (2012): 38.



6) Finch, B. K., Kolody, B., & Vega, W. A. (2000). Perceived discrimination and depression among Mexican-origin adults in California. Journal of Health and Social Behavior, 295-313.



7) Office of the Surgeon General (US, & Center for Mental Health Services (US. (2001). Culture counts: The influence of culture and society on mental health.



8) Gray, A. J. (2002). Stigma in psychiatry. Journal of the royal society of medicine, 95(2), 72-76.



9) Trepte, S. (2006). Social Identity Theory. In J. Bryant & P. Vorderer (Eds.), Psychology of Entertainment (pp. 255-271). Mahwah, NJ: Lawrence Erlbaum.



10) Corrigan PW, Watson AC. At issue: Stop the stigma: call mental illness a brain disease. Schizophrenia bulletin. 2004;30(3):477-479.



11) Corrigan PW. Lessons learned from unintended consequences about erasing the stigma of mental illness. World psychiatry : official journal of the World Psychiatric Association. 2016;15(1):67-73.



12) Insel TR, Wang PS. Rethinking mental illness. Jama. 2010;303(19):1970-1971.






Want to cite this post?



Ramesh, Sunidhi. (2016). "American Horror Story" in Real Life: Understanding Racialized Views of Mental Illness and Stigma. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/11/american-horror-story-in-real-life_22.html


Tuesday, November 22, 2016

Debating the Replication Crisis - Why Neuroethics Needs to Pay Attention



By Ben Wills



Ben Wills studied Cognitive Science at Vassar College, where his thesis examined cognitive neuroscience research on the self. He is currently a legal assistant at a Portland, Oregon law firm, where he continues to hone his interests at the intersections of brain, law, and society.






In 2010 Dana Carney, Amy Cuddy, and Andy Yap published a study showing that assuming an expansive posture, or “power pose,” leads to increased testosterone levels, task performance, and self-confidence. The popular media and public swooned at the idea that something as simple as standing like Wonder Woman could boost performance and confidence. A 2012 TED talk that author Amy Cuddy gave on her research has become the site’s second-most watched video, with over 37 million views. Over the past year and change, however, the power pose effect has gradually fallen out of favor in experimental psychology. A 2015 meta-analysis of power pose studies by Ranehill et al. concluded that power posing affects only self-reported feelings of power, not hormone levels or performance. This past September, reflecting mounting evidence that power pose effects are overblown, co-author Dana Carney denounced the construct, stating, “I do not believe that ‘power pose’ effects are real.”






What happened?




Increasingly, as the power pose saga illustrates, famous findings and the research practices that produce them are being called into question. Researchers are discovering that many attempts to replicate results are producing much smaller effects or no effects at all when compared to the original studies. While there has been concern over this issue among scientists for some time, as the publicity surrounding the rise and fall of the power pose indicates, discussion of this “replication crisis” has unquestionably spilled over from scientists’ listservs into popular culture.






Though replicability issues pervade many areas of experimental science, cognitive neuroscience and psychology are particularly susceptible. One main reason is the relatively high number and great impact of choices that researchers in this field make in methodology, data collection, and analysis (collectively known as “researcher degrees of freedom”). The consequences of shoddy science in psychology are outsized as well. More than perhaps most experimental disciplines, cognitive neuroscience and psychology directly impact popular culture, influencing how people interact and think of themselves. Phrenology, strict behaviorism, and the pathologizing of queerness are obsolete psychological doctrines that caused extensive harm before being shown to be roundly false. The shaky foundation of the power pose effect may be benign compared to the utter nonsense of phrenology, but both illustrate a distinct need to make sure that psychological results are true and valid.






Enter neuroethics. From debate on the ethics of cognitive enhancement to guidelines for the ethical use of neuroimaging research in the courtroom, neuroethics is fundamentally located at the intersection of society and the mind and brain sciences. A comprehensive neuroethics must consider not only society’s engagement with technology and scientific results, but the very process of research and the production of those results. After all, a policy recommendation or ethical analysis is only as valuable as the data on which it’s based. Consequently, neuroethics is obliged to keep an eye on the theories, methods, and findings of the mind and brain sciences. The replication crisis is a problem for psychology, society, and neuroethics as well.






Though this “replication crisis” is regarded by many as a major issue in the field, just how big of a problem it is and what the most appropriate response should be are questions whose answers have little consensus. This was the focus of a public debate hosted by The Center for Brain and Consciousness at NYU on Thursday, September 29, between Brian Nosek, psychologist at UVa and the director of the Center for Open Science, and Jason Mitchell, cognitive neuroscientist at Harvard. The title for the debate was, “Do Replication Projects Cast Doubt On Many Published Studies in Psychology?” but, as their goal was to dial in on the starkest differences of opinion between them, the debaters focused on the process of replication rather than quantifying the unreproducability of psychological research.









Flier for the NYU public debate

Brian Nosek, taking the affirmative position, presented first. He began by defining a replication attempt as a study that is identical to the original such that the only difference is their order. That one study comes before the other, Nosek argued, is irrelevant for evaluating results. At the same time, due to differences in time, place, sample, and other variables, he acknowledged that no replication is truly exact.







Nosek also expressed concern that the field, in determining a study’s value, often over-emphasizes statistical significance, in particular the famous p-value of 0.05 used in traditional statistics to determine if an effect is significant. While traditional statistics and p-values have their place, he argued, an over-emphasis on statistical significance is at odds with best scientific practices. For one, just as there can be many reasons why a study does not reach significance, there can be many reasons outside of a possible “true” effect why experiments can yield a statistically significant result (for more on this, Nosek suggested reading Greenwald 1975, a piece that presages much of the current debate). Thus, the potential causes of falsely concluding that there is an effect are more numerous than it might seem. This issue is exacerbated by science journals’ well-known bias toward flashy, statistically significant results, which provides incentive for researchers to take liberties with their data collection and analyses in ways that are more likely to yield statistically significant results.






Beyond encouraging questionable research practices, Nosek argued that over-emphasizing statistical significance makes researchers prone to gloss over results that, while not significant, are nevertheless informative. Even replication “failures” are not utter losses, but can contribute valuable information about the robustness of an effect.






Overall, Nosek pushed for a more inclusive understanding of what makes results in psychological research valuable while making a strong case that, among other causes, journals’ publication bias and misuse of aforementioned researcher degrees of freedom have led to a startling number of questionable findings in psychological science. Given the somewhat dire results of replication projects so far (the original Reproducibility Project: Psychology found that about 60% of studied failed to replicate, and a sneak peek Nosek offered of the data from the sister Many Labs 2 project was not much different), Nosek argued that widespread replication is essential for the health of the field.






In presenting the opposing position, Jason Mitchell did not object to replication (indeed, Mitchell stated that it is very important, especially within labs) so much as to the methods of the Reproducibility Project: Psychology (which Nosek led). In seeking to reproduce findings, Mitchell stated, there is an overemphasis on reproducing the minutiae of the procedure (direct replication) rather than capturing the essence of the original study (conceptual replication). The question psychologists seek to answer is rarely simply, “what is the effect of x stimulus on y mental event or behavior,” but rather, “what are the changes in y mental state or behavior brought about by mental causes that are in turn effects of x stimulus?” In an example he gave, if you’re studying the effect of mood on people’s tendency to socialize (operationalized as a happy mood elicited by listening to the Beach Boys or a sad mood elicited by listening to Adele), what you’re fundamentally not interested in is the effect of Adele or the Beach Boys on socialization per se. Rather, you’re interested in the songs’ effects only to the extent that they cause subjects to experience a certain mood. Mitchell argued that direct replication studies, in prioritizing the similarity of the individual labs’ attempts and their faithfulness to the original procedure, are likely missing the forest for the trees.









Amy Cuddy on "power poses," courtesy of Vimeo.

Touching on the nominal topic of the debate, Mitchell also made the important point that some effects in psychology, though “real,” are much harder to elicit than others. That cognitive dissonance is difficult to elicit in no way means it’s not a real effect. Resources of funding, knowledge, expertise in the paradigm, etc. all influence the likelihood of researchers successfully finding a real effect. Following this, he argued, it’s difficult to get any kind of accurate idea of the overall rate of replicability in the mind sciences, and results from the reproducibility project and similar efforts cannot simply be extrapolated to the field at large.






As noted by the hosts David Chalmers and Ned Block, there was little “bloodshed” – throughout the discussion, it was clear that the researchers respect each other and are committed to doing good science. They agreed on many fundamental issues, including that the mind and brain sciences are not without problems and that replication is valuable tool. Further discussion would have illuminated their differing opinions on direct versus conceptual replication and the plausibility of an overall suspected rate of replicability in cognitive neuroscience and psychology.






If this debate was any indication, neuroethics as a field may find some comfort in the general direction of the mind and brain sciences. Most researchers, both on the stage and in the audience, seemed to be taking replication seriously, and the field has displayed a push to self-correct. In the meantime, when it comes to psychological research, neuroethics may trust but must verify.



References



Carney, D. R., Cuddy, A. J. C., & Yap, A. J. (2010). Power poses: Brief nonverbal displays cause neuroendocrine change and increase risk tolerance. Psychological Science, 21, 1363-1368.



Farah, M. (2015). The unknowns of cognitive enhancement. Science 350, 379-80. DOI: 10.1126/science.aad5893.



Greenwald, A. G. (1975). Consequences of prejudice against the null hypothesis. Psychological Bulletin, 82, 1-20.



Open Science Collaboration. (2015). Estimating the reproducibility of psychological science. Science, 349(6251), aac4716. DOI: 10.1126/science.aac4716.



Ranehill, E., Dreber, A., Johannesson, M., Leiberg, S., Sul, S., & Weber, R. A. (2015). Assessing the Robustness of Power Posing: No Effect on Hormones and Risk Tolerance in a Large Sample of Men and Women. Psychological Science, 33, 1-4.



Want to cite this post?



Wills, B. (2016). XXXX. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/11/wills-title-pending.html

Tuesday, November 15, 2016

The 2016 Kavli Futures Symposium: Ethical foundations of Novel Neurotechnologies: Identity, Agency and Normality


By Sean Batir (1), Rafael Yuste (1), Sara Goering (2), and Laura Specker Sullivan (2)







Image from Kavli Futures Symposium

(1) Neurotechnology Center, Kavli Institute of Brain Science, Department of Biological Sciences, Columbia University, New York, NY 10027




(2) Department of Philosophy, and Center for Sensorimotor Neural Engineering, University of Washington, Seattle, WA 98195




Detailed biographies for each author are located at the end of this post




Often described as the “two cultures,” few would deny the divide between the humanities and the sciences. This divide must be broken down if humanistic progress is to be made in the future of transformative technologies. The 2016 Kavli Futures Symposium held by Dr. Rafael Yuste and Dr. Sara Goering at the Neurotechnology Center of Columbia University addressed the divide between the humanities and sciences by curating an interdisciplinary dialogue between leading neuroscientists, neural engineers, and bioethicists across three broad topics of conversation. These three topics include conversations on identity and mind reading, agency and brain stimulation, and definitions of normality in the context of brain enhancement. The message of such an event is clear: dialogue between neurotechnology and ethics is necessary because the novel neurotechnologies are poised to generate a profound transformation in our society.






With the emergence of technology that can read the brain’s patterns at an intimate level, questions arose about the implications for how these methods could reveal the core of human identity – the mind. Jack Gallant, from UC Berkeley, reported on a neural decoder that can identify the visual imagery used by human subjects (1). As subjects in Gallant’s studies watched videos, the decoder determined how to identify which videos they were watching based on fMRI data. Gallant is convinced that “technologically, ubiquitous non-invasive brain decoding will happen. The only way that’s not going to happen is if society stops funding science and technology.”





Other panelists at the symposium shared Gallant’s confidence in the advent of technology that can decode the content of mental activity, and discussed how motor intentions can be decoded and used to control external objects, like a computer cursor or robotic arm. For instance, Miguel Nicolelis from Duke University discussed a Brain Net that merged neural commands from the brains of three monkeys “into a collective effort responsible for moving a virtual arm.” As the leader of one of the laboratories at the forefront of improving brain computer interfaces for prosthetic control, Nicolelis raised the question of whether such technologies “should be used for military applications.” Beyond specialized use, Nicolelis expressed concern that access to new technologies could be limited – who will be using brain decoders or multiple brain machine interfaces, and why?







Neural technologies that access our internal mental processes may have the potential to shift our understanding of human identity and our sense of ourselves as individual agents. In thinking about identity, philosopher Francoise Baylis of Dalhousie University discussed neuromodulation devices, invoking deep brain stimulation treatments (DBS) as an example. She stated, “DBS is not a challenge or threat to identity. I think people are conflating changes in personality with changes in personal identity. I do not think these are the same… at the end of the day, identity rests in memory, belonging, and recognition.” Baylis argued that our identities are always dynamic and relational, and neural technologies are another way that our relational identities can shift, without threatening who we are. Still, some felt that neural devices may call into question our sense of agency and responsibility for our actions. In considering the issues raised during this panel, Patricia Churchland, from UCSD, emphasized that in 15 sensational accounts of the limits that new technologies will impose on free choice and responsibility for action, she stated that a key question about new neurotechnologies is: “What will it do for us?” There is a need for a balanced approach between speculation about future possibilities, reflection about what science and technology are already doing, and how this will affect society in the short term.





Since sophisticated brain stimulation technologies are already capable of eliciting complex behaviors in lower mammals, ethicists discussed an array of concerns related to agency: how we can know whether our actions and behaviors actually result from our own intentions when adaptive neural devices interact with our brains? Pim Haselager of Radboud University explored our “sense of agency” in experiments designed to separate our belief in our agency from our actual causal efficacy in acting (2). His work suggests that “the harder you work, the more agency you feel,” and he notes that maintaining a strong sense of agency while using a BCI may be linked to a relatively high level of effort on the part of user. Haselager described the sense of agency as multi-faceted – while we are learning more about the dimensions of agency, interpersonal and psychosocial issues are still emerging with neurotechnological research. Ed Boyden from MIT, whose laboratory is developing tools for mapping and controlling the brain through optogenetics, continued the discourse surrounding the multifaceted nature of agency, by questioning, “Can detailed models of an individual’s [mental] traits be reconstructed to the point in which simulation could be possible?” He suggested that as the ability to probe neural circuits expands, we will face increasingly complex questions about ourselves and our priorities. If a human-like simulation could be developed, would it possess the same internal dilemma of agency that persists in any decision-making human?





Leigh Hochberg, from Brown University, whose laboratory focuses on brain computer interfaces for paraplegic patients and the clinical trials of BrainGate technology, suggested that how and why privacy of neural data is ascertained depends on what we think is in the data – what does it tell us? This affects how he assesses risk and benefit in his own work – in a trial with a small number of participants, clinical data might be easily identifiable. This requires what Hochberg described as an “extraordinary consent process.” With evidence of the safety and efficacy of BCIs, increasing numbers of participants in BCI clinical trials and changes to consent requirements, more thinking is needed about how neural data and security are handled. Finally, Martha Farah, from the University of Pennsylvania, raised important conceptual questions about agency. She proposed that agency is ethically significant because it is necessary for freedom and autonomy, which underlie commonsense notions of moral responsibility. The concern with neurotechnology and agency is not whether an intervention is “in the head,” but whether it is quantitatively different from preceding technologies, like pharmaceuticals – does it allow for drastically more control over individuals and their agency? Farah suggested that new neural technology might allow for more fine-grained control of human thoughts and behavior, a possibility that raises economic and regulatory issues in the short term, equality and opportunity questions in the medium term, and existential questions about humanity in the long term.





The sheer existence of mind and brain enhancing technologies belies a tenuous and fundamental assumption that both ethicists and neuroscientists believe should be addressed: What exactly does it mean to be normal, and is achieving normality a reasonable aim? Blaise Aguera from Google opened the floor, starting a discussion about gender as an instance of the social tendency to impose a structure of normality (e.g., binary genders) when a much wider array of gendered possibilities is available – not even just on a spectrum, but across a “a multidimensional vectorial space.” Neural technologies should not inadvertently be designed in ways that exacerbate existing biases such as gender or limited appreciation for the diversity of modes of being in the world. Rather, Aguera asserted that “those of us who create these systems” of human enhancement should “explore a deontology” with “something like science, wellbeing, equity, freedom, and progress” as initial guiding principles. Polina Anikeeva at MIT then shared her work on new devices that match the flexible material properties of the brain, explaining her motivation to make devices less invasive because an “ethical implication is that when we introduce a rigid device, then we destroy the surrounding tissue,” creating glial scars that “don’t interact the same way as neurons do.” Her work shows how even upstream material design of electrodes for neural technology may have a significant impact on the end-user’s experience of the technology





Gregor Wolbring from the University of Calgary expanded the conversation on normality and enhancement to address “ability privilege,” which is the idea that “individuals who enjoy the advantages are unwilling to give up their advantages,” because for many people the judgment of abilities is intrinsic to one’s self-identity and security. He posed questions regarding how we determine ability expectations, and how those expectations alter the treatment of people whose bodies are not typical. Will disabled people want neurotechnologies? Perhaps, if they are understood as tools to achieve well-being, rather than as ways to “fix” people. When asked about the role of neuroprosthetics in the disability world, Wolbring expressed “Tool, yes. Identity, no.” David Wasserman from NIH turned the conversation to neurodiversity, and the movement to reframe some neuroatypical forms of processing as forms of valuable diversity. Such individuals may not need medical technology, but better social accommodation. Thus, Wasserman argued for a more pecuniary focus, emphasizing “more funding ought to be given to…biomedical research that would increase the flourishing” of people living with various neuroatypical conditions. Wasserman suggests that such research should be less focused on medical “fixes”, even though the public tends to be moved by research justifications focused on medical advancement. This latter point was confirmed by Gallant, who noted that “while scientists do a bad job of explaining how science works, the public knows they get sick, and they go to the hospital. This is why the NIH budget is 10 times greater than NSF….medicalizing research has the good effect of attracting funding to biomedical research.” Equipped with this knowledge, a slightly clearer picture begins to emerge, where research at the frontiers of neurotechnology may be forced to address normalization in a medical context for the sake of funding further research, unless funding structures change.





An open discussion held at the end of the Kavli Futures Symposium with all speakers and members of the NIH BRAIN Neuroethics Workgroup synthesized separate kernels of knowledge shared throughout the event. This included a sense of urgency for funding ethical and legal work in order to guide the development of new technologies that have the capacity to radically transform the human experience. There is a need to ensure that multiple stakeholders, including scientists, disabled people, members of the general public, and ethicists work together to consider the ethical aspects of scientific and technological developments. These ethical aspects are clearest in the short term, such as issues about funding priorities, institutional space for ethics, translational goals, and social support for individuals using novel technologies. Long-term questions can also be raised, including the value of preserving the separateness of individuals with private mental space, the potential for combining consciousness toward shared tasks, and the significance of potential enhancements that radically alter what we can directly control with our brains.





By exploring the collective web of thought that connects the humanities and the sciences, several profound issues were identified. Attending to these issues should galvanize the relevant public and private entities to attend more fully to the integration of neurotechnological research with human values.




Author Biographies




Rafael Yuste is a professor of biological sciences and neuroscience at Columbia University. Yuste is interested in understanding the function and pathology of the cerebral cortex, using calcium imaging and optogenetics to “break the code” and decipher the communication between groups of neurons. Yuste has obtained many awards for his work, including those from the New York City Mayor, the Society for Neuroscience and the National Institutes of Health’s Director. He is a member of Spain’s Royal Academies of Science and Medicine. Yuste also led the researchers who proposed the Brain Activity Map, precursor to the BRAIN initiative, and is currently involved in helping to launch a global BRAIN project and a Neuroethical Guidelines Commission.  He was born in Madrid, where he obtained his medical degree at the Universidad Autónoma. He then joined Sydney Brenner's laboratory in Cambridge, UK. He engaged in Ph.D. study with Larry Katz in Torsten Wiesel’s laboratory at Rockefeller University and was a postdoctoral student of David Tank at Bell Labs. In 2005, he became a Howard Hughes Medical Institute investigator and co-director of the Kavli Institute for Brain Circuits. Since 2014, he serves as director of the Neurotechnology Center at Columbia.





Sean Batir is currently a PhD candidate rotating the Dr. Rafael Yuste's laboratory. Previously, he helped co-found two companies in the Bay Area and Boston that developed inconspicuous wearable devices and augmented reality. He also worked as a software developer at Oracle Corporation, creating unified archives that could deploy cloud-enabled databases in a virtual zone and web-based applications that enabled user-friendly visualization of Oracle Supercluster system features. Academically, he earned his M.Res in Bioengineering at the Imperial College of London, in Dr. Simon Schultz's Neural Coding lab.  He developed a new method for complex spike classification in the cerebellum. Prior to his Master's work, Sean studied optogenetic interrogation of the amygdala-hippocampal circuit and  contributed to the automated patch clamping device developed in Dr. Ed Boyden's Synthetic Neurobiology Group at MIT. As a SENS Summer Research Fellow at the Buck Institute of Aging, Sean also characterized therapeutic effects of lithium as a tentative treatment to Parkinson's disease. Sean is driven to develop transformative technologies that redefine what it means to be human. He believes that innovation occurs through interdisciplinary dialogue, both within academia and outside of it, and seeks to facilitate interactions that drive creation.





Laura Specker Sullivan is a postdoctoral fellow in neuroethics at the Center for Sensorimotor Neural Engineering, University of Washington. Her position is jointly held with the National Core for Neuroethics at the University of British Columbia. She conducts conceptual research on issues in practical ethics relating to the justification and goals of biomedical practices as well as empirical research on stakeholder attitudes and perceptions towards emerging technologies such as brain-computer interfaces. Her work often takes a cross-cultural approach, focusing on Japanese and Buddhist perspectives. She received her PhD from the Department of Philosophy at the University of Hawaii at Manoa in 2015.






Sara Goering is Associate Professor of Philosophy at the University of Washington, Seattle, and affiliated with the Program on Values and the Disability Studies Program. She leads the ethics thrust at the Center for Sensorimotor Neural Engineering.











References



1. Naselaris et al. 2015. A voxel-wise encoding model for early visual areas decodes mental images of remembered scenes. Neuroimage 105(15): 215-228.



2. Haselager, W.F.G. 2013. Did I do that? Brain-Computer Interfacing and the sense of agency. Minds and Machines 23(3): 405-418.



Want to cite this post?



Batir S, Yuste R, Goering S, and Specker Sullivan L. (2016). The 2016 Kavli Futures Symposium: Ethical foundations of Novel Neurotechnologies: Identity, Agency and Normality. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/11/the-2016-kavli-futures-symposium_14.htm